S2 Ep 8 - Long Covid & Identity

Katya  00:31

Hey there Katya here. Welcome to another episode. So for this episode, Hannah and I are talking about long COVID and identity. And I want to give you the background as to why we picked this as a subject. When I first started the podcast, I only had long Covid just over a year. I feel like that first year between getting long COVID and making the podcast, I spent that really getting my head around the fact that I had this chronic illness. The podcast is roughly a year old now. And in that time I've been slowly exploring all the ways this illness has shaped me. I've changed so much about myself because of this illness. I've changed the way I work. I mostly work from home now. I've changed where I lived, I now live a 10 minute walk from my office so that on days when I'm well enough, I can go in and see people.Long COVID has changed how I spend money. My savings are not what I hoped they'd be at nearly 30. But I've become comfortable with paying for cabs to cut a walk short, and I accept that the cost of my rent. While it might seem insane to somebody else, to me is just the cost of an easier life. I changed hobbies, I've stopped dancing and walking. And I took up art, and lately the guitar. And while all of these changes have really helped me to live better with my illness, they also enable me quite often to forget that I'm ill.

Having now changed so much of of my life and what I do, I'm finding that I need to tell people about my long COVID less and less, I don't miss my art classes when I'm sick because it's around the corner, and it's a sedentary activity. When I don't have the energy to leave my house, my guitar lessons are on Zoom. I've just come back from the most incredible adventure in Africa, which was organized by some of my closest friends who made sure that it would be accessible to me and for most of my holiday, I completely forgot that I had long COVID I was just another tourist in a safari truck drinking Coke and watching elephants.

Now, I'm not saying this to boast. Im saying it because I want to share that something I've been thinking about lately is how much happier I am when I'm not strongly identified with my long COVID. That's not to say I don't consider myself as having long COVID. That's not to say I don't sometimes feel overwhelmed by my limitations. I do. But I've just noticed that I no longer feel like my chronic illness has as much to do with who I am as a person as I did at the start of this journey.

So much so that there are now spaces in my life where no one knows I have long COVID and I really enjoy the escape. In my Spanish classes. For instance, I didn't begin with ‘hola me llamo Katya y el tengo COVID persistente’ I think that's how you say it actually haven't said that out loud. Partly because my Spanish is not good enough for me to bring someone up to speed, but also because there are 100 other things I'd like to share about myself with my classmates first. When I can take someone through the Twilight fanfiction that I'm currently working on in my spare time, maybe then I'll touch on my chronic illness, but I just consider long COVID to be the least interesting thing about me. And it doesn't really impact me in my Spanish classes. Well, I'm one of 15 people who all have problems. Is it long COVID brain fog? Or do I just not know the past tense for ‘estar’? We will never know. And sometimes I like not knowing.

 Anyway, I realized I was having these thoughts and sort of panicked, and I wanted to talk to Hannah about it because the truth is I was feeling guilty. I've made a whole podcast about having long COVID Once I finally started saying aloud, I have long COVID I'm pretty sure I told everybody who would listen. Who am I to confess that now, in my personal life, I spend a lot of time doing what I can to pursue other parts of myself.

Okay, so these were the thoughts that prompted this conversation. This is an episode in which I'm particularly interested in your thoughts. So let us know if any of this resonates with you. You can get in touch by emailing us at boundedenergy@gmail.com. The podcast begins with a usual preamble. No one's ever complained about the fact that I include our chit chats before getting into the nitty gritty or as far as we ever do that. So this is pretty unedited. Anyway, I hope you enjoy the conversation.

Hannah  06:11

Hey How are you? Good.

Katya  06:12

Good It's so good to see. I feel like it's been ages.

Hannah  06:16

It has been a long time.

Katya  06:18

I'm it's I'm sorry, I'm late. I was playing League of Legends with my brothers. I kind of deliberately failed, because I deliberately, I lost the game for us, so that we wouldn't be too late.

Hannah  06:33

I'm honored! what a sacrifice!

Katya  06:35

Yep. I like ran into the middle of some battles that I like, know way better than to get too close to kind of kamikazed it.

Hannah Nice.

Katya How are you doing?

Hannah  06:49

I'm okay, I've, I finished up work on Thursday. And then I've got a week off of annual leave. But you know what it's like, like the first few days of holiday. It's like, my body is relaxed. So then I've kind of crashed a bit. So yeah, I can kind of feel I've just taken some Nurofen because I can feel like the aches are setting in like around my joints and stuff. So yeah, hoping that this will just be the first few days of like, just being extra tired and painful and stuff. And then with some rest, I'll perk up by kind of midweek and then have a few days of feeling… not awful.

Katya  07:34

Yeah,

Hannah  07:36

Before I go back to work again.

Katya  07:40

Yeah, that really resonates me because I had my 10 days holiday in Namibia. And it took it took like three or four days for my anxiety and like acute symptoms to relax a little bit. So I would say I had like a full week of just like heaven, and like really light symptoms and just holiday bliss. And then came back and my period started on Thursday. And… Like it's been like five months since coming off the pill and I … just like periods are horrendous. Yeah, today is a better day than yesterday. But I'm the same like feeling quite nauseous and just exhausted,

Hannah  08:29

Are you thinking you might go back on the pill? I can't quite remember why you came off it in the first place.

Katya  08:33

I came off it because I'd been on it for 11 years. And I read a book about how it can make you more anxious and has like a bunch of other side effects.

Hannah: Right. Okay.

Katya: And since coming off it I feel like I feel like I experienced like when I'm not on my on the pill. Long COVID symptoms are better. My mental health is really good. And then around my period, I have this dip where COVID symptoms are terrible. My mental health is insanely bad. I've learned I cannot make any decisions over that…. But then it but then it goes back up to being quite tolerable.

Hannah  09:15

yeah. Okay, that's interesting. So like, maybe being on the pill, it makes your mental health more consistent, but consistently at a lower level, whereas it's a little bit more ups and downs without it. That's interesting.

Katya  09:32

And like consistently worse than normal, but never as bad as it is now during my period. Yeah.

Hannah  09:38

Yeah, no, I feel you. I am. I hde my period like maybe like a week ago. And I was just like, the night before I started bleeding. I just felt really really anxious but for no reason. I couldn't pin it on anything. I was just like, had this like horrible churning feelings inside me. And I was trying to find an excuse, like, why am I feeling this way? And in the end, I was like, I always do this. I'm always like, Oh, what a mystery. I'm feeling so shit. And then obviously I start my period the next day. So yeah, in the end, I was like, Okay, I think it is just PMS. But that doesn't make it go away. Yeah,

Katya  10:20

I get like escapism fantasies as well. Of like, everything has to change. Like, I have to quit my job. I have to move I have I

Hannah  10:30

Yeah, I was saying this to Chris, because we went on, like a short walk because I was feeling so caged and anxious. And I was just saying to him, like, Oh, I just want to like, I want to tap out, like, I want to press a button and just make everything stop, make everything change. And yeah, I feel I felt sort of, kind of trapped in my own reality, which is crazy. Because it's like one though, like, I have a good reality. I'd pick this reality over many other realities. But in that moment, I just want to escape and everything feels like crushingly overwhelming.

Katya  11:06

Yeah, it does. And it's just so strange now, like, having had this like three or maybe four times to realize that, like, once a month, I will experience thoughts that I really should not act on. Yeah. Yeah, really, like this should not, I shouldn't make any major life decisions.

Hannah  11:27

Period. Yeah, once a month, I have a major existential crisis. I want to just push my life off a cliff edge,

Katya  11:38

you could ruin your life, like I could see myself in five days quitting my job, paying extra to bring my rent cycle to a close, booking a plane ticket to like, some foreign country. And then like, my period would end and I'd be like, oh, gosh, what am I going to do now?

Katya

Alright… how do you want to do this? I made a bunch of notes, which are illegible?

Hannah  12:07

Umm, well… I made some notes as well. We were going to talk about how our identity has formed, like changed or stayed the same in any way since being ill. And I think when you sent suggestions for like, talking points on this, one of your questions was like, Do you consider yourself to have a disability? And I was, in my mind, I was just like, 1,000%? Yes. And then I went geeky, and I looked up the ACAs definition of disability, which is having a physical or mental impairment that is both substantial and long term, impacting your ability to carry out normal day to day activities. And by long term, it's at least 12 months or for the rest of your life. That definition, I was just like, it's just a no brainer, like, I have a disability. Of course I do. But I feel I think I'm very comfortable with that. I don't know if it's because I have worked in healthcare for so long. And my whole job was just working with people with disabilities. I don't know, when you work in health care, you realize just how common physical and mental illness is. In, in humanity. Like, it's just everyone has got physical and mental ill health of some kind, even if they don't have it now, though, they will have it in the future. So I don't know. I don't personally have. I don't have many reservations around that. But do you feel differently?

Katya  13:37

No, but I feel like my feelings have changed. I came across the same definition as you for disabilities, and reading it now. I was immediately just like, Yes, I 100% view long COVID as a disability. And like, if I were ever to if I were to apply for another job, that first question of like, do you consider yourself as disabled? I would tick Yes, as well. Yes. But I know for a fact that I wouldn't have been comfortable with this a year ago. And I actually remember, I think in our first ever episode, we spoke about badges for invisible illness and spoke about, you know, should I get a badge to signify having an invisible disability? Yeah, so that things like public transport are easier. And I think we were both quite uncomfortable in that conversation with the idea of it.

Hannah: Yeah.

Katya: And I definitely would not have described myself as disabled one year into long COVID

Hannah  14:40

Actually, now I think back to it. I think in the early days, I sort of thought I didn't know if I qualified. I think it was that thing of like, I don't know if I if I am that category. Is it presumptuous for me to try you know, try and join that community when I'm disabled to I feel a lot more comfortable in that space now? Yeah, maybe I think in the early days when we were still trying to adjust and accept it, and there was a lot more unknowns, you know, I didn't know if maybe in the next six months, I would be miraculously better. I didn't know that this was a temporary thing. Whereas I think now, I have accepted that like, yeah, absolutely. This is a long term thing. And if it doesn't last the rest of my life, like, it's definitely, I'm now living, kind of accepting the fact that this is likely going to be years of my life.

Katya  15:32

I think you're right, the timescale is all the difference for me, I think, going from a period of I am, you know, Katya, from 2020, with a temporary sickness to I am a person with a disability and like that, I think subsuming that as part of my identity has taken some time. It's also taken some time to completely rid myself of the stigma, because I think I used to think of somebody as disabled. I thought that you had to meet, like, very, very visible physical signifiers to claim that word. So missing a limb or paralyzed in some way. Something as vague as chronic pain, chronic fatigue. I think my prior self might not have recognized as that as a disability as a disability. I think that's just my total ignorance. Hmm. Yeah, yeah.

Hannah  16:36

I think it's just having quite a narrow image in your mind, isn't it of what disability means? Yeah, and actually, I think that was a bit of a, like, in that very first episode, where we were talking about those. I think it was the green lanyards with the sunflowers on. Yeah, it was kind of wrapping my head around the whole hidden disability thing and thinking, Oh, wait, hang on, maybe, maybe that's me. Yeah, so I definitely expanded my mind around the term. In the early days, for sure. One thing I was thinking of, in terms of identity is that, like, there's certain parts of my identity prior to long COVID that I have had to let go of, but then there are other sides of my personality and my identity that I have really, like leaned into, because I was trying to think like, am I a completely new and different person I was, I don't think I am, I think I've just leaned into certain aspects of me more, you know, I've had to let go of certain things like you know, pole fitness and yoga and walking and my physical hospital job and everything and, but stuff that I am, I have embraced a lot more, like different types of interests and hobbies are still very much a part of my personality, I've just, I've just been able to put more invested in them a lot more. And stuff around like, the social side of me, like, I think I'm, I'm lucky in that I have always been a very introverted person anyway. So I have really been able to lean into that and embrace that. And just really accept that as part of myself. And now something that my fibromyalgia slash long COVID necessitates, whereas before, it was just a choice very often, but then I, but I'm, but I've always felt lucky that I am that personality, because I know that people who are extroverted, or people who really get a lot of a lot of their joy and energy from being with people. I know, it must be so much more challenging. Yeah, whereas I can just like really embrace my love of being on my own. And I don't, I don't, I don't loneliness is just not something that I experience very often at all. Yeah, but I know you're different, aren't you?

Katya  19:06

I’m happy. I'm so happy for you. (both laugh)…something I was thinking about before like, is chronic. I wrote out like a list of like, how I would describe myself a list of identifiers. And chronically ill was like, really no down. It was 16th. After you know, my gender, my age, being a woman, being a writer, being in financial services, being a friend, a girlfriend or sister, like chronically ill was 16. But I struggle with knowing if it's like a new identity, or if my illness is just like a dimmer switch on other parts of myself. I'm naturally very sociable. And so for me, chronic illness turns that way. Are you down when it's flaring, and like, I am naturally very physically active. So chronic illness turns that way down. But then I've always been a massive reader. And chronic illness has just dimmed that, the tiniest bit, such that when I'm reading, I don't feel like I have long COVID. But when I want to dance, I have long COVID like a brick wall in my face. And so maybe for you having always been someone who is who needs a lot more time alone, and who kind of gets more energy from that, like…

Hannah  20:34

It’s kind of dialed that up.

Katya  20:37

Yeah, yeah, it kind of impacts you less.

Hannah  20:42

Yeah. Yeah, it does.

Katya  20:45

But then it also makes me think about, cuz my biggest symptom is fatigue. Sometimes I think about like sleeping, like, you know, when you go to sleep, or you're tired, you're still yourself, you're just unconscious, or slightly less bright? Like, I feel like with my symptoms, I can't decide if I’m my old self just less of the time. Or if I'm quite new and different, because, like you said, I've leaned, I've leaned into certain of my old habits more such that they now represent a much greater part of my time,

Hannah  21:25

I guess, our identity is never fixed is it? So I suppose one way you could imagine it is that having long COVID slash Fibro has, like, it's shaped my identity in a different direction, maybe to where it, it might have gone otherwise. Like I remember with my, like, I was so into pole fitness. And like that, I was thinking like, you know, maybe one day in the future, I could be like entering competitions and stuff like that. And it's like, I've gone in a different direction now, like I've learned into a different side of me, like really into reading, like playing the piano. I've just like listened to so many bloody audiobooks, like acquired so much knowledge that I've just gone off in a different direction. And that's been shaped by the fact that I have fibromyalgia. I think the other thing I would say is that, again, the the way that Fibro has just like, affected my choices, or it's just kind of entrenched things, beliefs, or decisions, like I remember, before I got long COVID, I was quite torn around the idea of am I going to be a mother in the future, am I going to have kids and since having fibromyalgia, and knowing that this is a, you know, a long term thing that I'm going to be living with for potentially years, you know, and I'm 30 now, and it really has helped me come to that decision that like, I don't know, unless I wake up in one day, and just have some, like, absolute burning desire for kids like I am, I'm just not going to pursue it. And I'm just gonna, I'm really happy not being a parent, in my lifetime. But that's, that was a really big decision to come to, but I can't lie, like having the fibromyalgia has been one of the factors that's made me decide that for my life, but again, I'm lucky, you know, like my personality that introversion that like desire to not have kids, you know, that all kind of lends itself to living with chronic illness. Whereas if you are a person who has very different instincts, like if you really desperately want to be a mum or want to be a dad, and then you get sick, like that is a much more difficult adjustment to make, and perhaps a more painful decision to come to, or, you know, a decision where right I want to be a mum, I prioritize this, this is a part of my future identity that I'm not going to give up. But then that might mean that you have to let go of other things in your life. Because I don't know. I just don't know how I don't know how people are … live with chronic illness, and are parents and then re everything else that life foist upon you.

Katya  24:17

I'm now I'm having the same slow process. Like I said to Matty, do we want to have children, because we're, you know, were turning 30 as well. And yeah, and his response was like, I don't think at the moment you could handle having a having a kid. And he said this to me, you know, on my like, fifth day of lying on the sofa, struggling to really do anything. It's that... It's that strange thing of okay, well, like if I were to have children, my vision of being a mum would be different. I wouldn't be taking them to the park and like it would be a different style of parenting Right? Like they would need someone else to exercise them and come home to, to myself. So it it… I guess it changes everything doesn't it changes your sense of the future. Yeah. And I think we spoke about this before, right? That idea that your identity is so fixed and that things are so certain. And I feel like in Namibia, I've just been on a safari holiday, Hannah, which was absolutely incredible, because most of it was seated.

Hannah  25:35

the dream.

Katya  25:36

Yeah! I was in bliss! I was kind of thinking How are all these able-bodied people fine with like getting off a nine hour flight and then sitting in a car for 10 hours, but like no one complained. And we had a guide who was local to Namibia. And he had been explaining to us one day on about the drought, because they were at the end of their rainy season, and only a quarter of expected rainfall had fallen. And so we were seeing all of these beautiful little creatures, babies, baby zebras, baby giraffes, and just realizing that most of them wouldn't make it through the oncoming summer. And we had experienced that one day. And the next day, and I remember that night just looking at the sky just like Please, God, let it rain, I haven’t experienced that feeling of just everyday, please let it rain. And then the next day, my group did a little walk up some dunes and I couldn't do the walk. So me and the guide just took a flat route. And I had to just tell him that I had this illness, long COVID, which meant that I couldn't do this book. And he said to me, this world is changing. We must all adapt.

Katya  26:51

And that was all he said there was no like, oh my god, I'm so sorry for you, it was just this huge acceptance, that everything's changing all the time. This world is so fragile. We're living in a you know, we were in a country where everybody's future is uncertain. You know, not just the animals, but all the people who are employed by Safari and and I don't know it kind of like, normalized this illness. Yeah. And I find that I am happiest when I am not too identified with my long COVID I felt this enormous sense of relief of like, oh, yeah, no one. Nobody can predict or guarantee their next 10 years.

Hannah  27:42

Yeah. Yeah. That's so profound, that like, really simple sentence of like, the world is changing. We must adapt. Yeah. Yeah. And I completely agree. Like, the less I can think about and dwell on my long COVID Like, the better I feel, which is why I think it's so important to really lean into other sides of who you are. And still make sure that you're like, you have space to like, be you and be a person and not just be your illness every day.

Katya  28:19

Yeah, I'm I'm rereading Portrait of a Lady by Henry James. We did it at uni.

Hannah  28:26

Oh I love that book,

Katya  28:28

Do you remember professor ____, the lecturer?

Hannah  28:29

Yeah I do, actually. Yeah.

Katya  28:30

I remember him speaking on it. And I obviously hadn't read it in time for the lecture. But I read it afterwards, because I remember him saying it was his favorite book. Oh, that man was such a legend.

Hannah  28:42

Meanwhile, there's me sitting there with my like, highlighted copy. Like first year in uni where like, everyone was just getting drunk for a year basically. The guy who was teaching on Bleak House, I remember him saying like, Who here has read Bleak House? and then like me and like three other people put their hands up! Bleak House is massive book its huge.

Hannah  29:14

I’m just a massive nerd! Well, I also like I was so I'm so afraid of failure that I go like really OTT? So I think I had read Bleak House before I even started the course because I saw it on the reading list.

Katya  29:27

Jesus Christ Hannah. Yeah, and I had such a crush on professor ____. I remember meeting him at the train platform in my third year and I wanted to tell him how much I loved his lectures, but because I fancied him so much I was physically trembling because he's like… it was like meeting an icon

Hannah  29:49

I was gonna say I fancied one of my one of my tutors. He specialized in like Renaissance literature. And like all he had to do was like, you know, really compliment some of my essays and I was like, oh my god, can we just get married, please? And just like live in a library for the rest of our lives?

Katya  30:11

Not like that lady. Remember, we had that lady who used to print off her lecture and give it to us. And then she would stand at the front and read her lecture.,

Hannah  30:21

Yeah  we had some really, really poor lecturers

Katya  30:26

We were like full time readers. It's like, I can read this, Yeah, twice as fast, like, yeah, ten times quicker than you can speak. Oh, yeah. My point is in Portrait of a Lady, there's a character called Touchett who has a chronic illness. And in one page, it like describes his years of illness. And then it just goes back to him as a character with his own interests and ambitions and relationships. And like, he has this bigger role to play.. And it was just reading it made me think of how you know, I, I personally feel so much happier when my sense of self is not just my illness, but kind of includes all of my other interests and skills and relationships. I go to a weekly Spanish class, where no one knows I have long COVID, and sometimes I feel a little bit in disguise, huh? A little bit like, Ah, you because they just see me as I at my best. Right? Yeah. Yeah, I also always get really dressed up and like, put on my colorful eyeshadow. And yeah, my I literally wear my best clothes to my Spanish class.

Hannah  32:04

Well, you know, that's so nice. I mean, you're, you're deliberately You're not lying, you're just deliberately choosing not to share that aspect of yourself, because you want to focus on being that other part of yourself. And yeah, yeah. It just, I think it goes to show that there are times when having that label is really important and really helpful, like, you know, occupational health purposes for work and stuff like that. Then there are times where it's like, I don't need, you know, I can just, I can ditch that label for a while, like, I don't need it today. Like it's not, it's not going to help me in this situation like I can do without it.

Katya  32:44

Yes, a great way of phrasing it. I don't need it today. Because like, for my Spanish lessons, I don't need it. And I don't want to have to even think about it. Yeah, think about it or worry what other people are thinking about it like it's okay, if someone doesn't know everything about me

Hannah  33:05

I agree. Sometimes you just want to focus on other parts of yourself.

Katya  33:08

Yeah. Which of which are no less valid?

Hannah  33:12

Exactly. Yeah,

Katya  33:14

I want to be like, Hi, I'm Katya. I'm 29 and I have long COVID

Hannah  33:19

Yeah, I just I don't want to be one of those people where the fibromyalgia or long COVID is just like, my entire identity. And just like everything that I am just gets subsumed into it.

Katya  33:31

Yeah … Hannah, for time, I just don't want to overdo it.

Hannah  33:37

yeah, we are at 40 minutes. So we should we should tap out now.

Katya  33:41

Do  you want to say anything else?

Hannah  33:43

No, not really, I think other than just as I always do is just invite people to share so that Katya can then pass on the messages to me as our inbox monitor.

Katya  33:57

Yeah. Yeah, let us know. Thanks so much for listening.

Katya

Okay, I know we dropped off suddenly there, Hannaha and I have a time limit on these episodes to protect ourselves from overdoing it. Anyway I loved what Hannah said towards the end, about the importance of making space for other parts of yourself, to lean into those parts and to be a person and not just your illness.

That made me feel better coz it’s something I’ve been working on lately and so far, its only brought me good things. I guess the tricky thing here is the balance between remembering that I have this disability, I said it, so that I can look after myself and not letting it define who I am. And I’m working on finding that balance, from the wonderful emails and messages I receive from our listeners I know this is something you’re working on too. Anyway, that’s all for today, thanks for listening.

S2 Ep 6 - Long Covid & Mental Health

Katya S  00:01

Hey guys, welcome back to the podcast and Happy New Year. In today's episode, Hannah and I are talking about mental health. Hannah and I actually talk about mental health all the time. But we've been really slow to make an episode of this. I think I initially kind of my excuse to Hannah was that I had like a fear of maybe making something too sad for our listeners. But on reflection, I think the reason I put off doing this is that I just wasn't ready to talk about my mental health on the podcast. Until now. There was a time when just telling somebody that I was living with long COVID could bring me to tears. And it just took a lot of practice to overcome that response. In the time since falling ill Hannah and I have found a way to live with long COVID. And we've rebuilt lives that are happy and full of meaning. And I think now that that's where we are, it's so much easier to reflect on the darker periods, because we're not in them anymore. And that's not to say we don't go there sometimes, because we definitely do. But being a guest is not the same thing as being a resident. So yeah, I hope you find this episode as interesting as I did. And as always, if you have any questions or comments, or you want to share your experience of long COVID and mental health, send us an email at boundedenergy@gmail.com.

Katya S  01:21

I love hearing from you, we received a couple of emails from the last episode. And I was asking people to share the things they gained from getting long COVID. And I'll actually share one this was my favorite from a listener called Diana, who said, "long COVID taught me to cut the crap I literally have no energy for bullshit. So my bullshit filter is very well adjusted meetings that should be an email not going, people I used to meet just because I say no to that now. Books I didn't really like, I don't have to finish them". I love this, reading this just made me smile. I kind of I didn't even realize I was doing this post COVID. But like, it's so true. Who knew that the quickest way to delete an energy vampire from your life is to develop a chronic illness. You just have no time for any of that. I feel like I have a meme in my head. It doesn't exist. So I might created. Its you know, in Pirates of the Caribbean, the first one when Captain Jack Sparrow has his pistol with only one shot and he is being chased by the guards. And Orlando Bloom is blocking his exit and he holds up his gun to Orlando Bloom and says "this shot was not meant for you". I just I have that. That comes to my mind every time I'm faced with a tedious person just like this energy was not meant for you. Like, get out of the way. Or I'll kill you. No, I'm kidding. Okay, I'll stop because I'm rambling now. Please enjoy our episode on mental health. 

Jingle  02:50

I'm having a good day.

Hannah  02:55

Medical disclaimer. We are not doctors and we are not giving medical advice. If you were struggling with any of the issues discussed in the podcast, please seek professional help. 

Katya S  03:06

Shall we start then Hannah? Because I don't want to I feel like we went over last time and I feel really determined to make this doable

Hannah  03:13

. Sure.

Katya S  03:14

Yeah. How do you feel about doing an episode on mental health now cuz I know we're really unsure

Hannah  03:21

Super avoidant? I just I don't know, I don't know why it is that I feel really resistant to like, talking about it. I don't know why. But then I recognize that it is a big, a big part of living with long COVID. So we shouldn't ignore it. We should talk about it. But yeah. It just, it doesn't come naturally to me. Or something. But I Yeah, feel comfortable with. So it's fine. I just have to cope with the like weird feelings and move through this conversation.

Katya S  04:00

We, we had an email from someone that made me feel so much better about it. One of our listeners wrote in and said that, in a way, all of our episodes have been about mental health. A listener called Patrick, it was such a lovely email. And yeah, he said, You mentioned in episode one doing an episode on mental health and I'd love to hear that. But then I thought I don't actually listen for advice or dusty, dry facts. I listen to people with wicked sense of humors and refreshing amounts of honesty tell their stories.

Hannah  04:27

 Yeah. Thanks, Patrick. That's exactly what we try to try to get late. Yeah, so I'm really glad that you feel like that's what you're getting from the podcast. Yeah. No, I yeah, I think he's totally right. We do weave it in. We just haven't kind of really sat down and dedicated some concentrated time to that as a topic on its own. But yeah, how do you feel about this topic? 

Katya S  04:51

I feel really keen to talk about it because I actually talk about mental health a lot. And I think I didn't until I started talking therapy which I did like nine months ago or something. And I feel like, because I feel it's that thing of like, it's just practice. 

Hannah  05:11

Yeah, 

Katya S  05:12

I feel that the first time probably that I said aloud, I'm feeling so depressed. Or I'm having all these weird thoughts, can I share them with you? First, the first, like, 50 times were probably really hard, because I didn't have the phrases already. Whereas now, like, because I've said it so many times, to so many different people and have never been I've never had, you know, a bad experience, like a terrible experience. Really? I find it Actually, I like talking about it, because I find I connect with people when I say stuff like that. 

Hannah  05:52

Yeah, for sure. So you were saying like, what would you say your mental health was like, just before you got long COVID? And then how did it change?

Katya S  06:06

Ah, Hannah that wasn't on our list of questions. 

Hannah  06:09

Sorry. I just got interested in that subject. I suddenly thought, Oh, what was? What was it like before? Because we we can't pretend that like, we have like absolute perfect mental health and then long COVID happened, right? Yeah. We're messy people to begin with! 

Katya S  06:25

Yeah, yeah. I think I have had experience of mental health issues for the first time ever in my life at university. I just had a lot of anxiety, maybe some depression, some like, food issues for a while, but they had all pretty much cleared up by the time I was like, 24. So I would actually say from like, because I think I got long COVID at 27. I think I probably had a good, you know,

Hannah  06:52

 good run

Katya S  06:53

Three, four years of like, good mental health. So sad things made me sad and happy things made me happy. And I've rarely I would say I very rarely experienced hopelessness. And I definitely didn't experience it for like long stretches of time. And then COVID for me was like, I would say it's like nothing I've ever had before. In terms of the ... you called it the other day, black. I don't know if you've said the word before, but you called it black hole thoughts. Black Hole thinking. 

Hannah  07:29

It's like something I would say because I have to visualize everything. So. 

Katya S  07:32

But how do you how do you thought of that phrase before I did it? Did it just come to you? 

Hannah  07:36

No, it just came to me as I was messaging because when I was trying to like, empathize with what you were going through, and I was thinking, Yeah, it feels like that, like this sort of, like black hole that you get sucked into sometimes.

Katya S  07:50

I guess for context, I occasionally have bad days still, and I left Hannah a voice note when I was feeling really depressed only lasted a day or two last month. And God like I hate those black hole thoughts. But I feel like you were you were so right. When I had long COVID If I think of the acute period, maybe like the nine months when I was you know, getting out of bed and like really housebound, those black hole thoughts were with me all the time. And the back hole wide is amazing, because obviously that calls suck you down. It's so hard to escape that way and that heaviness. Like maybe this is nerdy. But as you approach a black hole, I think time slows and there's a period where time actually stops. I think that's what happens on the event horizon. And something about that, though, that feeling of hopelessness. It was like Time stops like you can't ever see you can't remember what it's like to be well, you can't imagine what it's like to be better. That was my mental health during the first few first six to nine months of COVID

Hannah  09:00

 it it's like feeling trapped in that feeling and trapped in that moment in time like i this will never change this all this is always just going to be this shit. I've definitely had those moments I think and I mean, this might not be true but like from what I sense from our conversations, I feel like I do get those black hole moments but I think I get them less than you do. I think 

Katya S  09:34

now or at the time or at the during the early like the first six months of long COVID?

Hannah  09:40

Yeah, mate maybe it is just that we're on slightly different pathways I'm just like we always say like I'm like what like a year ahead of you? Yeah, because yeah, like I definitely did feel very down very depressed and yeah, like very despairing at certain points when I in the early days. When I first had it, and I didn't understand what was happening to me, and then also, I was still in a job that wasn't suited to my condition, and I didn't have the flexibility. So I just kept pushing, pushing. And so I was being constantly confronted with my, with my weaknesses with my limitations all the time. Whereas I think now because because I've made changes to my life and really adapted everything, I can feel more content I face face less, day to day kind of barriers and frustrations, obviously, I still do, but not to that same extent, then sometimes when I'm faced with a really difficult situation, but the sort of situation that I usually hide myself away from, like, I don't know, this, like really dark things like going out on a day trip, and then realizing like, Oh, crap, I can't actually, you know, do this level of walking, I can't manage these inclines or everyone in this group of people is talking about all the amazing stuff they're doing day to day and I'm can't even light a match to there... 

Hannah  11:13

in terms of their daily energy that can really get me down, that can push me back or however you want to, like phrase it slug me back into that black hole sometimes. But I think that's why I do quite a lot to try to protect myself from comparison because I feel like comparison for me, and always has been actually, comparison to other people is the often the thing that will push me towards that black hole. So like comparison to what my colleagues were able to do so when I used to work at the hospital or, but that's why I pretty much don't engage with social media at all. And I really just try to keep it focused on myself and I interact with people, one to one as often as possible, and I kind of don't really go to parties anymore. Unless it's like a really important thing like a wedding or something. Yeah. Cuz Yeah, I just know, it doesn't make me feel good. 

Katya S  12:14

But even comparison with your former self, right can be unhelpful.

Hannah  12:21

Yeah. I like I got a bit tearful a couple of times when I've just been watching TV. And so I used to do pole fitness, which was my, my big I remember your pole dancing. Passion I loved I loved it so much. And obviously, I can't do that anymore. So like, really daft stuff like seeing in a film or on a like, on TV, like a music video or someone doing pole. Thatbrought tears to my eyes, because I was just so like, it reminded me like five years to do that.  not not like as good as that. But I used to do something near that. So missing it like that feeling of loss. Yeah, yeah.

Katya S  13:05

 But it's like that feeling of loss. Because sometimes I can have those thoughts now. And it doesn't provoke us  a spiral. But sometimes it does. I feel like I almost have a list of thoughts that I've just, I kind of try and remind myself that like, these thoughts go nowhere. And they are those thoughts of like, why can't I do this? This is unfair. What if I never get better? What if I get worse? What if I never dance again? And like, when I'm in those black hole moments on bad days, those thoughts come up. And I often can't but sometimes I managed to, like avoid a total spiral by just being like, nothing good will come of these thoughts. Like they literally go in one direction. And that is like yeah, total despair. It's just so they're so poisonous for me right now

Hannah  14:03

Yeah, totally, totally.

Hannah  14:04

And I find like, folks, I know it sounds like cheesy and like this isn't like we're not here to like give advice about how to manage mental health but like I try to remind myself a lot of the things that I do have in my life like I try to like because I think sometimes what I what I really don't like feeling about myself is like obviously there's a time there's a time for wallowing. There's a time for feeling sad for yourself, but then there's a time as well to be like, Okay, well look, this is me. And I have to like, I have to try and make the best of this and I've got I've got this in my life. I've got that in my life. I've got all these like so many things to be grateful for which I know is just, I don't know, probably a bit like grating to hear or hard to hear if you are in a really bad place, it feels like that's just impossible to kind of achieve that mindset. But that is definitely what I try to do, which helps. 

Katya S  15:12

But I guess I get the feeling of like the effort. It's like, you know, you have this thinking pattern that's really unhelpful. And you found some things. Like, I remember the other day watching Matty dancing, he's like, he has dancing lessons, which I sometimes find really hard because I danced everyday as a  child and as a young adult. But I remember watching him dance, and just feeling so devastated. Just that strong feeling of sadness. And then I thought for a second, there must be parents in wheelchairs who are watching their children play, and having that feeling of, oh, God, I wish I could go, I should be able to play with you. This is so unfair. And I find actually thinking about other people with disabilities, who also have to handle those kind of frustrations. It's like a mental thought exercise that I do, and it brings me so much peace because it's like, like, I'm not the first person to watch someone dance and, and be furious that I can't participate. 

Hannah  16:20

yeah physical limitations, like, physical disability is just a part of human existence and everyone experiences to like greater or lesser extents at some point in their life. Yeah. So it's just trying to remind yourself like, no, no, I'm, I'm part of humanity. And this is like part of the human experience. And some people are able to dance at age 30. And like other people aren't, and I'm just one of those people. And it's about trying to remember yourself as as part of the collective. And not just like, it's me, isolated on my own watching the rest of the world live the lives they want to live. Yeah, exactly. And the other thing you said that really struck me was, like you said, this is now a few minutes ago, Hannah, I feel like you said so much there that I agreed with was... I think you said something about having more things that you can do, like you've organized your life now so that you're not like constantly bombarded with all the things you can't do.

Hannah  17:15

 Yeah,

Katya S  17:16

 I kind of wonder if, like, because my early, long, COVID days... I wonder if part of what made them so horrendous, apart from the acuteness of my symptoms was that I hadn't, hadn't changed so much of my life. So I just had a bunch of things that I couldn't do, and I had no alternatives. And it has actually taken two years, it's taken two years to move closer to work so that I can see people every day, it's taken two years to like, find new hobbies. It has actually taken two years to educate my friends and family on how to like, interact with me. It's, it takes that much time. 

Hannah  17:59

Totally, totally. Yeah, yeah. And, you know, I'm kind of speaking now from position like, three, four years in where it kind of, I think I can, I can forget actually, how much hard work and how much frustration and upset went into forming the new life that I have now. Yeah, definitely. 

Katya S  18:23

How was your...You asked me such a good question at the start, and I didn't turn it around. Like, how would you say long COVID changed your mental health from, from pre to post? 

Hannah  18:34

Um, I think I'm a bit I'm a bit conscious of kind of coming across like a bit of a stereotype because I know they say that mental health issues or especially anxiety is kind of 

Katya S  18:48

all your fault. (laughing)

Hannah  18:49

Yeah. Yeah, is in a greater prevalence of that within the long coat people with long COVID And, you know, I've, I have quite high anxiety I always have done like, I'm much more, it's far more unusual for me to feel depressed. That's not usually my way of being. So that's why when I did have those black hole moments, like when I first got long, COVID it it was wow, I don't feel this way very often. Whereas I feel kind of on the other end of the spectrum, a very large percentage of the time, which is being really high....  I don't know how to explain it. Like really high frequency, like kind of always like vibrating with a bit of tension and like a bit of churning and, and fear. 

Katya S  19:46

Yeah 

Hannah  19:47

I've kind of tried to describe it before is like I kind of feel all the time like, there's something really bad that's going to about to happen. I don't know what it is or what it's gonna look like but I just have this sense of like, dread. And so then sometimes when things go wrong, say I make a mistake at work or, or something like that I then I'll suddenly think, oh my god, it's here. It's that thing. It's the downfall that's been coming towards me this whole time and I've been fearful of and it's here and then I'll go into like a bit of a panic and and then I have to just Yeah, so the way I've been trying to visualize it a lot is I've like drawn this in my notebook, because I like do drawings in my notebooks like I have to, like, I think a lot in pictures. So I have how I how I feel, which is a picture of myself, like about, like a little sailing boat like about to like sail over like a massive cliff, or like, going down into like a whirlpool or something, what I feel versus what is real. And I'm actually just like, bobbing up on down on the rocky sea. And it's like, no actually, what's actually happening in reality is one thing, and then my feelings are really, really disproportionately fearful or anxious. So I have to, like, remind myself of how I feel, what is real, how I feel, what is real. 

Katya S  21:20

But you had that before COVID? You're saying? Wait? 

Hannah  21:23

Yeah, yeah, for sure. 

Katya S  21:25

It's so messed up, right, you probably thought you probably thought that, like, the bad thing was going to be like being told off at work. Right? And actually, like, fate was like, Oh, we got something in store for you!

Hannah  21:37

Yeah, I know, I know, 

Katya S  21:40

 I'm sorry. That's messed up. 

Hannah  21:41

But that, you know, I, I do. So in before I got long, COVID, I was really doing a lot to try and work on myself and try to keep, you know, do lots of things to help soothe those kind of highly anxious feelings. And, and it's just kind of, there are times where it's more and times when it's less, you know, like times where I can be like, oh, like, I'm actually, you know, haven't had that feeling in a little while, or I'm not feeling it in such a heightened way. But it... Yeah, it goes up and down. And I would say that, I think the long COVID and fibromyalgia is kind of just a, it's just like an additional, it's just an additional load to deal with, on top of like a pre existing anxiety. 

Katya S  22:34

It's so interesting that you have anxiety, and I tend towards depression more. When I think about my like acute suffering. It's not anxiety, I have experienced that before, but but it's so it's always like depression. If I think about what's crushing for me, it's that. I guess how, how was getting COVID for your mental health? Like,  in the first like four months or something? Did you still feel anxious? Or did that change? 

Hannah  23:02

Yeah, so really bad, because then I was really anxious about not being able to do my job, but not being able to show up and do my work. And like meet meet expectations. So and then, as it continued, It then became a an anxiety around my health because because I know so much about progressive neurological conditions, because it's something that I work with, or worked with most days as a speech therapist. I was then very afraid that I had multiple sclerosis. So whilst I was going kind of, you know, trying to go through the NHS system and trying to get tests trying to get proper investigations and everything. Because at the time it was so early people didn't really didn't even have the word long COVID at first when I was when I got the symptoms initially. So I really did think I had kind of a serious progressive neurological disease based on the symptoms that I had. So I was kind of freaking out.

Katya S  24:11

Yeah, 

Hannah  24:12

so yeah, that so yeah, the anxiety definitely heightened. And then when I pushed, pushed, pushed, pushed, pushed, I really burned out and that's when I had to move on from my job and move into my current job, but I really burnt out and then I remember hitting, I suddenly was I went from being in a really high anxiety state to just plummeting down into depression for a short period of time where it was like, What is this? 

Katya S  24:48

Yeah, 

Hannah  24:49

yeah, it was like major black hole feeling because I just thought like my whole professional identity had just completely fallen apart. And like my identity of myself as like a, like a healthy fit, you know, reliable competent person or those? Yeah, yeah. And it's sad because I think actually, do you know what I have long COVID slash fibromyalgia. And I would still describe myself as you know, but in a different way, I'm healthy. I'm fit to the extent that, you know, I'm able to maintain. I've just changed the goalposts myself, and I'm still reliable. I'm still competent. But I've just, I've really, I've reimagined that for myself now, whereas I was still holding myself to old standard. So totally, yeah, yeah. So and that, sorry, no, no, I was, I think, since that rock bottom moment I have. And I've changed job and really worked hard to change my lifestyle. I've, I feel like I've been, I've climbed out of that. And I have ups and downs. But I'm kind of at a level with my mental health where it's, you know, it's it's manageable. It's more things like, I'm on my period, or I get like a virus or something that makes me feel extra rough. I feel like my anxiety and frustration, heightening more than usual. 

Hannah  26:19

But what about so , what about you in terms of from when you got when you got long COVID then to now what what's your mental health journey? 

Katya S  26:28

like, it's the same, same thing as you like that. Over time, I've gained more control over my life. So I'm, I feel like a failure much less. Because I, it's so much less frequent that I bump up against something I can't do. Like, I've stopped organizing more than one thing a week. And I don't set myself up for failure anymore. Exactly. Yeah. And it's Yeah, and just one thing I wanted to say is, I remember reading some of the poetry from this guy, I think it's Alec Finlay. And he, he lives with chronic fatigue /ME, and he, in one of his poems, he says something like, a crash is never worth it, or something like that. And at the time, I thought he meant like the physical consequences of overdoing it are never worth it. But actually, one of the things I've noticed is when I overdo it physically, and I get a crash, the next day, or a couple of days later, my mental health just falls off a cliff, in when I am, like, immobile and forced to sit down. It's like it comes out of the blue, the black hole thoughts, I can literally like go from feeling quite normal to suicidal the next day. If I crash. It's like, like physiologically does something to my brain. 

Katya S  27:50

I think that the difference between now in my early days, is I think in my early days, I was in that crash almost every day. And then I slowly spent less and less time in that because I had given myself time to rest and get better. So now, I probably accidentally overdo it every three weeks, and then I have those thoughts just turn up out of the blue again. But it's just so much less frequent that I can say what overall now, my mental health is good. And I get these weird visitors when I overdo it. 

Hannah  27:50

Yeah, 

Hannah  28:27

Yeah. Yeah, that makes sense. No, definitely. That's so interesting. What I think what you were saying about, there must be something physiologically about going through a crash that also changes your mental state too, that I really think that's true that does strike a chord with me. So I'm sure you're not the only one. Because I feel that too. And I'm I'm sure listeners will feel that as well. 

Katya S  28:53

And I had food poisoning over Christmas 

Hannah  28:56

I remember you messaged about that. 

Katya S  28:58

I was feeling completely normal for an hour and then every hour ever, like on the hour I'd be throwing up. And during that five minutes of acute nausea vomiting. My brain did the same thing. I literally watched it be like this agony is endless. I'm always gonna have food poisoning. uuughh Oh, actually, I'm fine. Maybe I'll watch Mean Girls. This agony is endless. I'm always going. And it was almost like watching like my long COVID journey condensed to like a day.

Katya S  29:27

Ya know, it's like the vomiting became less frequent

Katya S  29:30

Yeah. We should wrap up Hannah for our health

Hannah  29:37

Indeed. 

Katya S  29:38

Do You want to say anything? 

Hannah  29:40

I feel like oh, no, I feel like I started off being like, Oh, I don't really feel like I can talk about this. And then I just like word vomit.

Katya S  29:51

But, yeah, it feels like such a privilege here hearing these things from you. 

Hannah  29:57

Oh, really? 

Katya S  29:58

It does. Yeah, yeah, like I said, Funny, isn't it? How you can know someone for so long, but like, I didn't really know that you were so visual. But actually, when you said like black hole, like, a lot of your language is like that. 

Hannah  30:11

Yeah. Yeah, I found it's like the only way really that I can, like connect with my mental health. Like, if I tried to do it just through, you know how people talk about like, words like saying mantras to yourself, like to calm yourself or things like that, like, that doesn't really work unless I have something to visualize or, or touch at the same time. Something I used to do when I worked in the hospital was keep like, like an object in my pocket, like, like, I would make a piece of origami. And then like, write the written phrase on it, and then keep it in my pocket. So like, I just I need something tangible, tangible, more tender words. Otherwise, it just doesn't really change. My thought processes. 

Katya S  31:04

That so lovely. 

Hannah  31:05

Yeah, yeah. And I know there are lots of people that who have the same brain as me who, yeah, if you feel like the usual stuff that you read about, like, how to change your thinking patterns or whatever just isn't really speaking to maybe try like drawing or creating something that you can carry with you or visualize in your mind instead. I really like that. 

Katya S  31:30

Yeah, like if think happy thoughts isn't working. Yeah.

31:36

Let's call it a day, Hannah. That's okay. Well done. Thanks so much for this thing. We hope you enjoyed this episode, and that you join us next time. If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to bounded energy@gmail.com Or find us on social media at bounded energy.

S2 Ep #4 - Long Covid & Periods

Katya  00:02

Hey, hey. So my reaction to this point is really weird, right? Because when you said I got stuck in the bathroom, I had this idea of like, I found it funny because we had already gone from laughing, then you into this serious bit and it sounds like you entered some kind of like alternate universe. Because you said I went into the bathroom and just sort of got stuck there. I had like a Lion, the Witch in the wardrobe image

Hannah  00:29

Narnia, like on the other side of my bathtub or something.

Katya  00:33

I remember like really trying to be sensitive, because this is like a serious thing you're talking about. But I don't know. It's just such a weird thing. I do get it.

Jingle  00:47

I'm having a good day/minute/hour/week, what to do and how to be with the beans given to me, me and my bounded energy

Hannah  01:06

medical disclaimer, we are not doctors and we are not giving medical advice. If you were struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  01:18

welcome back to another episode. In this episode, Hannah and I re-listen to a conversation we had about a year ago, in which we discussed long COVID and periods. You know how you can get into a mood with friends when you're just really inclined to laughter no matter how serious the topic? Well, we were in one of those moods that day. And it was so lovely to re-listen to this conversation and to react to it with Hannah. Apart from all the giggling I think this is a really important issue to discuss. Because while periods for me are so minor, I hardly notice them, COVID and its complications seem to have made what was a monthly discomfort into a major inconvenience and source of distress for Hannah. And I know she's not alone in this. Many people have reported heavier or more painful periods as a long COVID symptom. Anyway, that conversation is about 12 minutes into this episode.

Katya  02:11

I've kept in at the start our usual kind of chit chat catch up, because I asked Hannah about her chronic pain, fibromyalgia and her response is really insightful. I'd had a mild dose of the flu this past week. And as I kind of stumbled around with body aches and pain, I had this thought of hmm, is this what fibromyalgia is like for Hannah all the time?  And so I asked her this and I wanted to include her response.

Katya  02:39

Before we start, I just like to shout out to the Apple podcast listeners Skylee 101 to thank them for that lovely review on Apple podcasts. Were a really small podcast. But this is an issue that impacts lots of people. And we so appreciate all the support in helping us reach a wider audience of fellow sufferers. And reviews like this really help us. If you're enjoying the podcast, please leave us a review or recommend us to a friend. Finally, we always love to hear from you. So if you'd like to tell us about your experiences, ask us your questions help. You can even send over your complaints. Our email address is bounded energy@gmail.com All right, here we go.

Katya  03:23

How are you?

Hannah  03:24

Yeah, I'm good.

Katya  03:25

I was thinking I felt like we haven't done this need is it always? It feels so weird, doesn't it for the first few minutes?

Hannah  03:33

Yeah, yeah,

Katya  03:34

How is your long COVID/ chronic pain?

Hannah  03:38

is not too bad. I'm on my period right now. So the irony of ironies. So on Thursday, my symptoms were just really bad. But it was because it was day one of my period. So I was really like stiff and achy. And then when my legs get really stiff and like my muscles, just the kind of involuntary tensed up. I'm just shuffling around. Like I can't take proper full strides. I'm shuffling because my legs are like so I was just like shuffling around campus. And yeah, it came out of the blue like, way earlier than we usually arrived. So like I was totally not prepared for it. I was just suddenly like, oh crap, I think I've started my period. And thankfully, because my periods are so unpredictable, I have a period emergency kit in the boot of my car. So my period emergency kit has a spare pair of trousers, spare pair of knickers, pads and tampons, and

Katya  04:54

a Hoover (laughs)

Hannah  04:57

and baby wipes.

Katya  04:59

Oh yeah.

Hannah  05:00

and painkillers. So I was like, oh my god, I have my emergency period kit. So I just like shuffled up the little hill to my car. And then this is all in my lunch break. So then spend my lunch break sorting myself out. And then I was back to lecturing again. So I was just it was a bit of shit day. But since then I've picked up and the period symptoms have settled and so my fibro settled with it really.

Katya  05:32

I thought about you, you know how I'd been asking you about your chronic pain. On the first day of my cold and a bit now, I had soreness all over my body, like, everything felt sore my arms and my stomach and my legs. And I just wondered is, is that what it's like?

Hannah  05:52

Yeah, so it's kind of like, your muscles feel tender and bruised. And then also, I get a deep ache in my bones. It's like in my joints. Then also I'll get patches of skin that are just like stiky. For no reason. But it feels as if I've like burnt myself, but there's nothing there. So yeah, it's kind of three layers. It's like skin, muscles bone. But it's not like I'm getting all of those sensations all at the same time. But it kind of like peaks and flows and where it is in my body sort of shifts around depending on what I'm doing. Like a wild. Yeah, but it's to be honest, it's such a background like hum. Now Yeah. Like sometimes when I really tune into it, I'm like, God, Jesus, I didn't used to feel like this. But I sort of, I can kind of like tune, tune it out to a certain extent that it's like days where like, yeah, like day one or by period or something. It's like it gets amplified. So yeah,

Katya  07:04

that's rubbish. II listened to Catherine Ryan's podcast. I don't know if you've ever heard 'telling everybody everything'?

Hannah  07:12

Yeah.

Katya  07:14

She's so funny.  I think she has lupus. And she one of the things she says is like, she kind of always feels a bit shit all the time. It's like an underlying background...

Hannah  07:27

Yeah, yeah.

Katya  07:29

I just thought of you the other day, because I was like, Huh, I wonder if this is what Hannah's like all the time?

Hannah  07:36

 Yeah.

Katya  07:37

 And it's not it's worse!

Hannah  07:41

When Chris got got a really nasty bug, and he was just really shattered. He was like, Oh, Jesus, like, I just feel so like, just fed up and exhausted. And he was like, Oh, this is how you feel all the time. And I was like, yeah. Thanks, Chris!

Katya  07:59

But that is right, because it's like, I was thinking this a lot because I went to see a physio recently for my breathing. And she was asking me to describe my body. And I found it so difficult to explain. Like, what tired means for me? And like, I feel like I have no perspective.

Hannah  08:19

I know what you mean. Yeah, definitely. One thing that I get is like, when I wake up, and I, you have that period of time, where you're kind of testing out how you're going to be that day. Yeah, like the feeling of like, especially on the weekends, when my adrenaline is down. And I know, I don't have to like, psych myself up for work. So I wake up and I'm a bit more relaxed. That's kind of tends to be when like, exhaustion really creeps in. But it's just very normal to feel that coming over me. And then when it doesn't, I'm like, wow, this is a great day. Yeah, so yeah, just your perspective is just totally flipped around.

Katya  09:05

Yeah, I've been having over the last like two weeks. I feel like I'm relearning my long COVID.

Hannah  09:12

Why?

Katya  09:13

Because the improvement with the asthma diagnosis was so marked. That's where I was before to once I had my inhaler was like, I was like, I'm free. And then I had a crash, like a week and a half ago or something. And it's just realizing that it's like, the ceiling has moved, right. And it's so nice to be able to stretch. But it's like, I would really like to you know, go for a hike. Like, I kind of wonder if it's always going to be like that.

Hannah  09:43

Yeah, yeah. Just yeah, pushing that ceiling. Slowly higher and higher. Over time, that's my aim.

Katya  09:55

And managing like the disappointment I felt when you know for a bit like, Ah, this isn't gone. I thought it was like totally gone!

Hannah  10:08

The entire time it was just purely the asthma!

Katya  10:11

I had like a quiet thought, Hannah that I was cured. And then it's like, Oh...

Katya  10:18

And then finding a way to be grateful, right? Because like, moving around the house with ease and stuff. That's not a small thing.

Hannah  10:25

No.

Katya  10:26

So do you have anything else you want to say, Hannah?

Katya  10:33

No, I don't think so.

Katya  10:35

want to introduce what we're planning on doing? .

Hannah  10:38

Yeah. So a while back before, like, towards the end of season one of this podcast, we recorded a short episode where I was basically having a rant about how crappy my periods are, since long COVID/Fibro. And I probably went way too overboard and gave everyone way too much detail, but we didn't end up releasing it. So today, we were thinking we were gonna listen back to it again. I actually can't really remember what I said. So I'm a little bit scared.

Katya  11:10

You're in for a treat, Hannah. I really listened to it ages ago. And I remember thinking like, it was so refreshing. I don't know why I know. There's been a lot of progress around kind of like women's rights and advocacy and talking about periods.

Jingle  11:26

Yeah.

Katya  11:27

But it is still hard to talk about them and like, vaginas still feels like a curse word in some ways, you know?

Hannah  11:36

Yeah, I guess I know what you mean. I think maybe like, yeah, the only way is to just have like, conversations that kind of feel a bit graphic and a bit ik but then you just acclimatize yourself to it over time.

Katya  11:53

Yeah. Like half of the world lives with this at some point. Yeah, hopefully if they're lucky enough and healthy enough to have periods?

Hannah  12:04

Yeah, true.

Katya  12:07

Okay, should we just play it then? And we can. I was gonna say also, you don't need to worry too much, Hannah. Because if there's anything that stressed you, I have discovered that I can just add in a beep  in the editing process. Because we I swore in the last episode, I think, and I was like, Ah, I don't have time to re record. just beep it out. So... I don't think people will be listening to 15 minutes of beep. It's not that bad. Cool.

Hannah  12:34

Well, before we play it, just just, you know, if you're the sensitive type, and you think you're gonna not cope with discussions about blood and stuff, like stop listening now, please, because I don't hold back.

Katya  12:48

Yeah, if any of these words trigger you , like menstruation, blood, periods, vagina, leaking. I feel like firstly, you should spend more time with women. But secondly, you don't have to listen. Alright, so we just play. Okay. All right, two, one.

Jingle  13:13

,

Katya  13:13

I know you wanted to talk about your period. I was about to say 'that time of the month'. Like some dad from 1960s!!

Hannah  13:25

I hate that. It's 'my time of the month'. Oh, it's so annoying.

Katya  13:32

That dirty little secret that every woman has.

Hannah  13:38

Yeah, so basically, I mean, I've always, you know, had to, you know, periods have never been an easy thing.

Katya  13:47

It's not like it's party time!

Hannah  13:49

 Yeah, yeah. It's not like I'm like woohoo, time to bleed out of my vagina.

Katya  13:56

Time for me to buy my best whites.

Hannah  14:02

But since having COVID my periods have just really got a lot worse in every way imaginable. I've always struggled with pain, like cramping pain, but that has generally got worse. So when I am on my period, I obviously I take my pain meds. I have a hot water bottle now, which I just wear.

Katya  14:27

I've seen you in your dressing gown and hot water bottle

Hannah  14:30

have you!? I literally just have it kind of strapped to my stomach, but like most of my period, to help with the pain and then my PMS. So like my emotional regulation is really out of whack. So I know that you were kind of you had some experience of that a few days ago when we had a chat and I was just totally all over the place. And like yesterday, I had a real life like weird mental health break, it was like, the fourth day of my period. But I got into this really weird space in my head where I was really irritable, really, really down. But I, I got into this bizarre situation where I spent like, a couple of hours in the bathroom, and I did have a bath. But I got stuck mentally where I was like, I can't leave the bathroom. And then I finally finally managed to talk myself into leaving the bathroom, and got into my bedroom. I managed to put some clothes on. But then I got stuck again. And I couldn't leave the bedroom. I was just stuck there.

Katya  15:48

What's the stuck, like, because I've had that before, and but I don't get PMS. But I've had that before from other like when I'm really sick or other mental health crises? What's your stuck like? What do you mean?

Hannah  15:58

Yeah, it's like, I feel like there's, it's like I've created some sort of mental barrier to leaving the room. So I, I think it is just complete overwhelm. So the idea of going down stairs, it's like, there's too much to see too much to process. There's too much to do too much too many decisions to make about them what to do, once I get downstairs, it all just, it's really weird. It's like by by staying here in the bathroom, or by just lying here on the bed. It just feels manageable. But anything outside of this feels like I can't process or cope with it. So in order to get me out of it, I had to message Chris and say, can you just come up, please, and help me get downstairs. And so then eventually I just said to Chris, like, can you just give me the instruction, just tell me what to do. So then he said, Okay, we're gonna go downstairs, I'm going to make you tea and I've got some ginger biscuits, I'm just going to turn the football on, we're just going to have tea and biscuits and in front of the football. So then I was like, okay, so then I just followed his instructions. And we went downstairs, and then gradually, gradually, I was able to, like, get myself out of that weird mental space I was in, it was so bizarre, but I have just, that was kind of more of an extreme end of it.

Hannah  17:31

But like, during my period, I kind of, I'm much more prone to very weird, emotional places that I'm really not used to being in and the fatigue gets worse, and my bleeding has been much, much heavier. So, whereas obviously, I have always needed to take care and make sure I don't leak and things like that during my period. Recently, it's been a lot worse. So if I do go into work, it's like, okay, I need an emergency, an emergency stash of extra pants. I need an extra pair of trousers just in case. My clothes need to be black. I need to wear period pants. The pants themselves are absorbent, but then I wear a pad and then a tampon. And it's weird, like,

Katya  18:24

Jeez! That's mad. Sorry, Hannah. I don't know if I mean really childish, but like, that's like, that's a lot of like I had no, because I've been on the pill for like 10 years, I forgotten, like that people have varying levels of heavy bleeding. And that actually like what you're describing. You're not the first person who said it to me, but it's just like, yeah, that is so much to cope with. Basically, I'm a little taken aback.

Hannah  18:51

It's a lot to think about. I think because I don't know if it's that I'm losing more blood now. But what I've noticed is that it feels like I lose it all in a much more concentrated space of time. So it feels like the majority of my bleeding happens in like the space of 24 hours. And it's just crazy. So like, I'll go from sitting to standing. I stand up and when it is  my heavy heavy day, I will just feel a gush of blood coming out. It will soak my trousers best. Yeah, so I'm, like, on the day that we had a chat.

Katya  19:40

You were sitting in a bath of blood.

Hannah  19:42

I was well I was sitting on a towel because I'd covered my chair with a towel just in case the blood then got onto the chair. Yeah.

Katya  19:52

Oh man. Right now so it's like, you know, like it's so weird. I thought I don't know why people don't talk about up periods because they affect half of the world for like one week out of four like a quarter of the time.

Hannah  20:05

Yeah.

Katya  20:06

Its so weird I'm on my period right now and i can feel it coming out!

Hannah  20:11

Oh, no, I hate that horrible like warm trickly feeling

Katya  20:15

I know,

Hannah  20:16

especially when you're like in the middle of like when you're in a work meeting. And then suddenly you just feel this like, glob, like, come out your

Hannah  20:29

 KatyaI just said the word blob. What is wrong with me?

Katya  20:38

I Think blood is the technical term though, for for menstrual blood leaving the vagina. Do you want me to bleep it out?

Katya  20:48

I feel like that would be so strange.

Hannah  20:55

There's two more attention to what happened! Be Like what the f*** came out of her vagina?

Hannah  21:00

-laughing-

Hannah  21:03

Right. I hate that horrible, like, warm, trickly feeling I know, especially when you're like in the middle of an like when you're in a work meeting. And then suddenly, you just feel this like glob, like, come out.

Katya  21:19

You're like, I'm talking to you. And maybe you're like like a 50 year old man. And you think that, you know, my whole field of consciousness is just your face and the things you're saying. But there's also a bit of it, thats aware of  something down there and can just feeling like things that were once in my body and couldn't be felt by me have suddenly become external. And I can now feel my period coming into my pads while we talk about like, my work progress?

Hannah  21:51

Honestly, I think I think a lot of women are embarrassed to talk about it, or there's this a little bit of a taboo of like, oh, that's a bit gross. Like, people shouldn't have to listen to you talking about that. But I do think that I take comfort in hearing people talk about their periods, because then I feel like, Oh, thank goodness, it's that reminder that it isn't just me, that's going through this. So that's why I wanted to share and kind of go into those kind of growth details. Because if anyone else is going through it, maybe there'll be they'll be pleased to hear that all alone. But also, I'm really interested to hear if you are listening to this podcast, long COVID has messed with your periods in any way. Please do share, I would love to know, it would make me feel a lot better to know, it's not just me.

Katya  22:39

There was a wonderful woman who used to work in my team, just about my team. And she Oh my God, because my team was mostly male, and she had terrible PMS. And her she made a point of saying, Sorry, guys have to log off now because I'm on my period.  she would just say in front of the team. I'm on my period I'm experiencing like really severe PMS, I have to log off. And I spoke to her about it just to be like, is this just because you're, you know, I've no, I wondered if she was Polish. I wonder if it was part of the culture. And she was like, No, this is because I am a feminist. And like, we need to talk about this. And when I'm on my period, I am in agony for a lot of the time and I'm very emotional. And if I decide that I cannot work, that is a valid reason. And I'm not going to pretend that it's something else. Like I don't have a headache. I'm on my period.

Hannah  23:32

yeah, I just that sense of dread that I would get when it was like day one day two of my period, I have a full working day ahead of me. I mean, it's still the same, you know, it's a lot easier when I'm working from home. Because I can do a lot more to try to alleviate the pain and make myself comfortable. But when you're on your feet and you've got loads of work to do, but I would be in so much pain. I would be feeling faint with pain. And then you have that horrible cramping dull ache in your body. But then I would then get these and I do get these now is those sharp spasms that go through my like abdomen but then also my vagina as well. Like I'm one of my friends said oh, it literally feels like someone's thrust a knife up your vagina. And I'm like, Oh my God, it is like that. And you just get these horrible shooting pains

Katya  24:26

Did you get that before long covid?

Hannah  24:27

Yeah I would. I would have that before long. COVID Yeah, yeah, yeah. But I still get them and I get them a little bit a little bit worse now. But it really means that working is very difficult, but I don't think many women feel able to use that as a justification for not working. There is like it's one of those weird things of like, as a woman you don't want to I almost don't want to have to admit that my body holds me back

Katya  24:59

 I also find I don't want to admit that I have a vagina. It's why I find having visible breasts embarrassing, right? Like I genuinely wear like smaller bras to like, at work. And I know it sounds crazy, but I can understand like, I don't want to draw attention to the fact that I'm a woman. Yeah, I definitely wouldn't want to be like, I'm a woman who's menstruating right now. And I need help. Yeah, yeah, yeah,

Hannah  25:23

I think I'm worried that it will be interpreted as weakness. And I think it's that odd thing, that strange thing about feminism where it's like, I want to be seen as an equal to men. I don't want ... because you know, back in the day, they used to say that wasn't it like, a reason that a woman couldn't be a pilot was because they thought that PMS would stop her from being a good pilot or something like that.

Katya  25:48

It wasn't that long ago that me and my grandma got on a plane. And my grandma was like, Oh, it's a lady pilot. I hope she knows what she's doing. And I was like, I think she does grandma she's a bloody pilot!

Hannah  26:01

But yeah, I think there's that thing where it you can go too far the other way where you're like, oh, no, no, like, my period doesn't affect anything. Like I am perfectly able to work every day like a man does. But yeah, then there is that side of me. That's like, Yeah, but actually, because I am a woman, I do have times of the month where maybe I am not working to my best. Or maybe I do need to, I should be taking the time off because I really am in so much pain. I don't know,

Katya  26:28

I know what you mean, it's almost that thing of you know, when you feel really grateful, because you feel like you've been given something - like we were given the right to work the same hours as men and to be paid equally  as we are in the UK. I almost feel like I couldn't imagine asking for more. Because it's like we have what's equal. So how do you then say, but actually, like, this is something that uniquely affects me with my biology. And I need more from you than Well, yeah, this man does.

Hannah  26:57

Yeah. Yeah. Yeah, exactly. You're asking for more considerations around your body. Yeah. that don't apply to men.

Katya  27:07

And  on top of on top of long COVID, right, because it's like, I need some help. So it's like, Well, yeah. I just want to say like, cuz I know, I mentioned this to you. But I guess I'll just say for our listeners, back to the long COVID Handbook, which I am not affiliated with. And like, I'm not, you know, I just did. It's the last book I read on COVID. And like, the most helpful, it talks about, it just basically says that it has been observed that people who suffer who suffer from autoimmune diseases report a worsening of symptoms around their menstrual cycle. And there's a lot of self reporting around women who have long COVID, who say their symptoms have gotten worse while they're menstruating. Really. It's just very interesting. Yeah. And I think it's to do with the fluctuations of hormones. And that can exacerbate the symptoms of autoimmune, but,

Hannah  28:07

yeah. That's interesting.

Katya  28:10

I'm on the pill. So I can't speakto any of that. Like, I can remember from before I went on the pill, periods being horrendous, or my god, like, I would throw up my legs would feel like they were twice as heavy as they were. Period. Pain wasn't just in like the vagina or the womb. It was in my lower back. Yeah. Oh, man, like, and then I would get terrible acne that really affected my ability to talk to people and really knocked my confidence. That was, for me, the main reason for going on the pill. And the reason why I've stayed on the pill, because I could actually deal with the pain but I couldn't I couldn't deal psychologically with the acne, the acne that, yeah, because it would come around my period. And it would be there for the week. That because I have brown skin, it would then tan so it would scar, and then and then I would have the scars and then my period would come back again, and I get more acne and more scarring. And, you know, it's been 10 years of the pill and I take a have a topical retinol and a topical retinol and it's like, it's so much better now. But I still have small scarring. God Yeah, periods.

Hannah  29:27

I have tried contraception stuff in the past, but I've never stuck with any of them because they just didn't really work. So I kind of gave up on it. And actually, my, I think it's helped in that I get my periods regularly. Now. Finally, my bodies found a rhythm. So I'm like, well, at least I'm getting a period every month.

Katya  29:49

 it's like it's misery but at least it's dependable Hannah. (laughs)

Hannah  29:52

 Yeah. Exactly. (laughing)

Katya  29:55

Like it's always hell but at least it's like frequent and you can plan for it!

Hannah  30:04

 Oh, that's nice to listen back to that. Yeah.

Katya  30:08

It's not too bad, is it? But what do you think?

Hannah  30:11

Yeah. Yeah, we made some good points. points that I still agree with. I know. Yeah. Also, I forgot about the acne thing. What you were talking about its rubbish. Because your skin is so good now,

Katya  30:25

like, I know, but I realized the other day, I've been on my contraceptive pill for 10 years. Yeah, and I'm pretty sure like when I got prescribed at 18, or something they were not thinking that I would stay on it for like 11 years. But it's working  And whenever I come off, I just get my spots again.

Katya  30:52

It's interesting listening to that, because I still find my boobs embarrassing. You know, we talked briefly about just like being a woman is embarrassing sometimes.  .

Hannah  31:06

Yeah But then I, I have pretty small boobs. I don't like have that experience of like being like, Wow, I feel like these are kind of in the way and out. Sort of. I don't have that self consciousness, I think. But other women talk about that. Same as you. Yeah,

Katya  31:27

yeah, I have a colleague who has the same thing. Like she also has large boobs. And it's like, sometimes I'll just put them on my desk, like by my hands. And then I'll suddenly be like, Oh, snap, like these are visible. It's really, it's really weird. I went for a phase of being so jealous. You know, there was that summer trend for women to not wear a bra. These like women who just just didn't have boobs would wear like, clothes. I just remember this huge feeling of like, ah, like, What a luxury to not have to wear. You always want what you haven't got.

Hannah  32:05

Exactly, exactly. Sure there are plenty of women on the other side who wish they had big boobs.

Katya  32:13

Yeah. I felt like that said everything. I don't have anything to add Hannah.

Hannah  32:20

No, no. Other than it sounds like I contradicted myself because I was saying, oh, yeah, my period is quite hard to predict. And it happened to me out of the blue earlier than at the end of that podcast episode. I said it was more dependable. When I say dependable, I get my period, it can happen kind of anytime between like 27 to 40 days is like the length of my cycle. So it's like, yeah, it's like over over a week the variation.

Katya  32:53

Really?

Hannah  32:53

 Yeah. So that's why it catches me even though I know it will come. I don't have to wait months for it to arrive. It's just It's always that. When will it arrive within the next like week and a half?

Katya  33:08

Yeah, whereas with the pill. I know the day it comes on Wednesday, every four weeks it comes on Wednesday, and it's finished by Saturday evening.

Hannah  33:17

Wow. That's so easy - you can plan your holidays around that!

Katya  33:26

Oh my god. Like . I can even get away with not using the pad.

Hannah  33:33

No!

Katya  33:33

no, I'm serious. I'd never imagine I'd find myself boasting about mymenstrual cycle!

Katya  33:44

I don't think it's a real menstrual cycle if you're on the pill, but I don't know. All right, should we wrap up? Yeah, yeah,

Hannah  33:54

I'm feeling a bit knackered actually, I think I need to go have a nap.

Katya  33:56

Yeah, we overstayed we said 30 minutes. All right. Yeah. Well done.

Hannah  34:03

Okie dokie.

Hannah  34:04

Thanks, Katya.

Katya  34:05

Take care. See you soon. Bye.

Katya  34:08

Thanks so much for listening. We hope you enjoyed this episode, and that you join us next time.

Hannah  34:13

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to bounded energy@gmail.com Or find us on social media at bounded energy.

S2 Ep#2 - Just Katya #1 - Pieces of the Long Covid Puzzle

00:29

Hello, hello Katya here. So I'm going alone today because I have some information that I wanted to put out into the wild without delay. And my beloved partner Hannah is currently shackled by physical exhaustion and then buried underneath a mountain of work. And quite understandably, I hope ,it just didn't feel appropriate to bother her for a last minute episode.

00:57

Firstly, I just have to say thanks so much to those of you who reached out because you listened to our latest episode. It was the first one we've released in ages, I think it's just called Long COVID catch up. We receive some emails on the back, which I always love. So thank you to those of you who wrote to us, there was one thing that really stuck in my mind.

01:19

I'm not going to read out the whole thing, just a bit of this email from Rachel, Rachel wrote in to say,

01:27Hhi, Katya Hanna, blah, blah, blah, blah. Thank you very much. I really related to the discussion. This is for last week's episode around recovery and expectation of constant improvement. I've been largely plateaued for most of this year.

01:42

I'm just going to say hooray, Rachel, because sometimes plateauing is like, it's like you've hit the bottom or you've hit a bottom, and you can start kind of figuring out, you know, where the start of the next staircase is. Anyway, major has been largely plateaued for most of the year and the most challenging bit has been managing the expectation of others. My least favorite question is, “how many hours are you working?” As it feels like a covert “have you improved?” So you can work more hours? Yeah, it does. How many hours you're working? This is something I wanted to, to speak to because

I guess there are two reasons why I want to call out like the bizarreness of how many hours are you working as a question to somebody with a chronic illness who is doing their best? So I guess firstly, how many hours you're working is nobody's business. I don't even know that it's your boss's business, if you're getting your agreed work done. And secondly, how many hours someone is working, they have very little to do with their contracted hours. I know plenty of people with nine to five jobs who work from seven till eight at night. I don't mean seven. I mean, 7am. You got it. Similarly, my boyfriend and I are of the opinion that our housemate makes roughly 500 quid an hour based on the fact that every time I look over at him, he's doing creative writing, thank you to games, not physically at his workstation, and definitely not writing code, which is what he's paid to do. So how many hours of work are you doing? Like? How long is a piece of string? How long is your nose? You nosey Parker. Enough? is probably the answer to that one, Rachel. How many hours you're working Rachel? Enough. And enough with all these stupid questions.

03:39

I mean, you probably can't say that last bit. But yeah, that question just like poked something in me is, you know, up there, with a long list of insensitive questions to ask someone with a chronic illness like Long COVID.

03:58

So yeah, hang in there. Rachel, you're probably working over time. If you also take into consideration the hours you spend worrying and thinking about work.

04:11

Partly because of because of questions like this.

04:15

But yeah, I think ‘enough’ is the answer to that one.

04:19

Okay, so moving on, then to the reason for this episode, and this is going to be short. Normally, I'm going to record a whole episode by myself. I think I have a tendency to ramble too much to really go it alone. And Hannah, Hannah keeps me in check. The reason for this episode is that two weeks ago, I had a major diagnosis that has dramatically improved my long COVID symptoms, and it just didn't seem appropriate to hold it back.

So two weeks ago, maybe not. A month ago, maybe I I had gotten to a point in my lung COVID, as I spoke about last week where it was tolerable, and things had kind of calmed down enough for me to really notice what was going wrong in my body. And one symptom of mine on COVID That just hadn't changed at all, was my breathlessness. Like the fatigue was slowly improving. The brain fog was slowly improving, but my breathlessness was persistent. And so I'm incredibly lucky to have private health care. And so I had also kind of built up enough resilience to try again, with my GP. I, I'm sure like many people with long COVID have kind of developed a strong dislike of the GP, mostly from just, I guess, having been repeatedly told that they have no idea what's wrong with me and no suggestions. Anyway, I decided to ask my GP for a referral to see a respiratory consultant, and just explained like I'm on private health care, so please make this referral. Now, they didn't even ask to see me, I just got I like typed in an email requesting the referral. And they just responded with an email being like, Sure, here you go. I think their file didn't even have my name on it.

06:27

Anyway, like the privileged princess that I am, I then got a private appointment to see a respiratory consultant, who I would say within like five minutes, said it's probably asthma. And then 10 minutes later, after having done the very basic asthma test, you kind of blow into a tube into like a machine, I think, and it levels the amount of nitrous oxide I want to see, I can't remember, it measures the amount of something in your out breath that tells you how inflamed your airways are. Anyway, she diagnosed me with asthma in about 10 minutes, explained that it has been known for a while that long COVID triggers asthma.

07:17

And prescribe me with a steroid inhaler. And then referred me to see a physio because she kind of explained the two years of untreated asthma has caused like deformation of the muscles around my kind of breathing space, I guess chest is the word for that. And I have a really weird, like breathing structure, I use the wrong muscles basically. So I need physio for that. Anyway,

07:49

I have had, I've been on this inhaler for about two weeks. And I have instantly noticed a huge increase in my energy.

08:03

It was almost like from the first day of using it. Iwas just breathing better. And then my fatigue improved. And here's the thing. I

08:16

I've been into work, I think every day but one for the last two weeks, which is something you know that I can't remember doing. I definitely haven't done that in a year. One day I even went into work came home and did some gentle yoga.

08:35

Yeah, it's been crazy. I remember, I think was last week, I went to see the Taylor Swift errors. Video concert in the cinema was not one of the lucky people who got tickets for that. And saw it in the cinema. And obviously when shaken off, came set up, danced around, couldn't I couldn't help myself. And then I started feeling the fatigue set and I started feeling really dizzy. My breathing was going on. I was thinking Ah, like this is the feeling that used to make me go home, reached into my bag, took out my inhaler, puf puf puf

09:11

And I was back boogeying in my chair and on my feet for karma, which which was the last song

09:20

and it's weird, right? I don't I wasn't sure if I should even mention this because maybe it's a temporary high maybe it's a placebo. These last two weeks have been like a holiday from a debilitating fatigue. I haven't really had to miss that much.

09:50

I haven't tried to exercising. And I haven't you know I'm still getting the lift and stuff at work but

10:00

It's been huge. And so I just thought I'd put it out there. Because I didn't know that long COVID can trigger asthma. So if you're struggling with breathlessness do go to your GP. And here's the thing, right? I have gone to my GP about breathlessness think I've been to my GP four times in about two years for long COVID, which, I guess kind of shows my lack of resilience. But the first time I went and said, You know, I think I have lung COVID It's been six months, I'm not better. I'm exhausted all the time. And I my breathing is terrible. I was just given a chest X ray sent away. I think I had a chest X ray and an ECG. There was no no one called me. And I remember calling the doctors a week later to say, hey, you know, I went to see my GP explained these symptoms. Can I please have the results of my chest X ray and my ECG, and I remember the nurse on the phone just said, everything's normal.

11:06

And that crushed me. It absolutely crushed me. And I know that lots of people will resonate with that, right of having gone to see a GP for something, and being told everything to normal.

11:24

And I guess that's why it took you know, maybe a year and a half for me to rebuild my confidence. Go back and be like, No, there is something wrong with my lungs. I know my body. Restore me to someone who knows this part of the body? Really, really well.

11:46

So yeah, I just thought I'd put that out there. If you're struggling with breathlessness. Ask your GP about an asthma test. Don't just settle for an x ray. Because you might be lucky, you might be like me, right? Asthma may be one part of the COVID puzzle. And getting it right might improve your quality of life.

12:10

Yeah, and even if this these last two weeks are just a holiday. I have really enjoyed it. I've really enjoyed it. It's been really nice these last few weeks. If you've solved any pieces of your long COVID puzzle, please let us know. We'd love to hear from you. You can get in touch by sending an email to boundedenergy@gmail.com or contact us through Instagram at bounded energy. Twitter I've kind of stopped using since Elon Musk. So yeah, that's it for me. I'm not sure when Hannah and I will be back probably in a couple of weeks. We already have an episode in the pipeline.

12:50

All the best to everybody who's living with this and lots of love

S1 Ep 8 - Long Covid Questions - with Neuropathologist Dr Mayen Briggs

Katya  00:02

And so I was gonna propose that we just take like a clean break, Hannah. And then we catch up in like, say two months.

Hannah  00:10

Two months would be good. We've got that sounds reasonable. Yeah.

Katya  00:16

And we obviously can't speak to each other like during that time, Hannah. It'll be like ... why are you calling me?

Hannah  00:24

When you say complete break, it just means an excuse to cut Hannah from life for a while. I've talked to her for way too long.

Katya  00:33

It got weird. I remember, we had a whatsapp call during the recording time of this podcast. And I was like, it took me a while to be okay with the fact that it wasn't all being recorded. Like there was a while when I was listening to our conversation, and in my head being like, oh, I should have recorded that. We should have recorded that. Yeah, it took me a while before I couldjust like enjoy the conversation. It was like, Well, if it's not recorded, does it really matter? 

Hannah  01:01

Oh that's shit (both laugh)

Katya  01:02

All right, buddy. All right. Look, I'll be in touch. 

Hannah  01:06

Yeah. 

Katya  01:08

Before before April, before the end of April. (both laugh)

Jingle  01:13

 I'm having a good day/minute/hour/week. What to do & how to be, with the beans given to me, me and my bounded energy

Hannah  01:30

Medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  01:41

Hello, Katya here and welcome back to the final episode of the first season of the Bounded Energy podcast. Throughout the season, Hannah and I have been collecting questions. And so it made sense to finish by getting some of them answered. Questions like What is brain fog? Why do I sometimes feel dizzy or struggle to walk in straight lines?  What is the polyvagal theory? 

Katya  02:06

So in the first part of this episode, we asked these questions to Dr. Mayen Briggs. Dr. Mayen Briggs studied medicine at the University of Edinburgh. She then completed a masters in neuroscience at King's College London, before getting her PhD in neuroscience specializing in neurodegeneration at Cambridge University. She now works at Cambridge University Hospital as a neuropathologist. And she also happens to be my cousin, which is why we laugh so easily in this episode. Dr. Mayen Briggs is a very modest person. And naturally, she suggested a bunch of other doctors who work closer to too long COVID to speak to us in her stead. But this podcast has always been about cheering up fellow sufferers. And it was important to me to have a conversation that was funny and warm, while also being really interesting and useful. And where Hannah and I are comfortable putting our hands up and saying I'm sorry, I just don't know what this means. Which is exactly what this conversation was. 

Katya  03:01

In the second part, Hannah and I talk a little about why we're taking a break. And we reflect on what this first season has brought to us. But for now, I bring you our fascinating conversation with Dr. Myers Briggs. I hope you got as much from it as we did. 

Katya  03:15

Shall I introduce you or do you guys want to introduce yourselves to each other. I should also just say Mayen This is a heavily edited podcast. So if you say anything that you don't like, we'll remove it.

Hannah  03:28

We say all sorts of crap on this podcast that we just come out after.  (both laugh) Nice to meet you Mayen. My name is Hannah. I'm a speech and language therapist. My work is with people with acquired communication and swallowing impairments, often due to something neurological. So I've got a little bit more, I've got kind of a basic understanding of  the central nervous system and the peripheral nervous system, but  it's very basic. It's by no means like, in super in depth, but I just I might be more familiar with terms than Katya might be. (Katya laughs) But I think we should probably assume that all of our audiences at Katya's level. 

Katya  04:20

Thank you Hannah

Hannah  04:21

 Because like it might, I might like be nodding along and being like, oh, yeah, because like, I kind of know those terms already. But actually Katyait's good to have you because you'll be like, You guys are talking about a word that actually we need a definition for, for the audience. So yeah, yeah, 

Katya  04:39

We were saying before, just so it doesn't seem like Hannah is being really mean. We were saying knowledge our levels of science, because I just did GCSE biology and stopped. So Mayen, wanna introduce yourself. Shall I call you, Mayen or Dr. Briggs? I will do a formal introduction.

Mayen  04:56

Up  to you -I don't think that you need to - you can just call me Mayen

Katya  05:01

Mayen/Dr Briggs. Who are you?

Mayen  05:05

I'm Mayen. I'm a neuro pathologist. But I started out as a neurologist. And I worked as a neurologist for quite a while. And then when I started my PhD, which was in neurodegeneration and in dementia, I did a lot of work with the Cambridge brain bank. And as part of that work, I kind of realized that actually, what I really loved about neurology was the neuro pathology of it. So kind of how the disorders manifest themselves and the actual science behind it. And so when I came off my PhD, I've been swapped into neuropathology. So the bulk of my work is brain tumors. And so anything that a surgeon takes out be it the brain, muscle or peripheral nerve, I'll look at that under the microscope and tell them what it is. And then I also do some post mortem work, where I look at just the brain. But I also do general post mortem work as well, when I'll do the whole post mortem.

Hannah  06:05

Wow, sounds so fascinating. 

Katya  06:09

Yeah, I feel like we've had a lot of conversations, Mayen around your studies that are what is this? What does this mean? What does this mean? but I can't remember... what is neuro pathology?

Mayen  06:19

it's looking down the microscope and looking at anything that a surgeon resects from inside the brain or anything of the nervous system, I look at it down the microscope and try and work out what it is. And occasionally, we'll do things like during the actual surgery, so if the surgeon goes into the brain, and he's not sure what he or she is looking at, and then they want a pathologist to then look at them or down the microscope and say, This is what this is. And this will guide how they manage it, because some sorts of tumors, you don't actually surgically resect they need chemotherapy when they stop, whereas others, it's really important to try and resect as much as possible. So a lot of my work will be actually telling the surgeon, this is what this is. And that will guide how they manage them at that time. And then afterwards, we'll then do sort of further studies looking at the tumor to try and then sort of classify exactly what it is, and what the best treatment would be.

Katya  07:15

You have to do that live like in surgery? So

Mayen  07:19

yeah, so that bit we do that live. So we'll do that while they're in surgery and give them a sense of what it is, and then after the surgery, we'll then do much more detailed analysis. So looking at maybe some of the genetic changes as well in the tumor, which might mean that it's targetable, or that you can use certain types of drugs to target those genetic changes.

Katya  07:42

That literally sounds like the long COVID brain fog nightmare. 

Mayen  07:48

I can imagine 

Katya  07:50

to have to make a decision or figure something out on the spot. Yeah, that's quite amazing, Mayen.

Hannah  07:59

It's like a lot of like, yeah, analysis and decision making under pressure in a short period of time with people waiting for your answer...

Katya  08:08

people waiting with their heads open while someone looks at your tumour!

Hannah  08:13

Wow.

Mayen  08:15

So I don't know, I don't know, huge amount on long COVID. And to be honest, probably no one really does know, in terms of its, its there just isn't enough data on it. So I can try and help to sort of explain a lot of the, the neuroscience in terms of some of the theories, but obviously my clinical practice, I wouldn't really see individuals with long COVID. I have seen nerve biopsies and muscle biopsies, from individuals with COVID. But I wouldn't say it's a big part of my sort of everyday practice.

Katya  08:50

Okay, yeah, I think I think it's nice to have, because of our connection, there's this safe space.  I think I've had questions are quite, I was gonna say they're obvious - the questions that everyone seems to have, so I just, yeah, so I guess just thank you for agreeing to come on and, and share what you know, around these.

Mayen  09:13

I hope I can answer them sufficiently. Obviously, some of them I just won't necessarily be able to answer or don't know enough about. But I will try and answer what I can.

Katya  09:25

Yeah. Shall we go for the first one then?

Hannah  09:29

Cool. Yeah, I think so. The first question is quite a broad one, which is what is brain fog? And why do we sometimes forget our words and mix up our words so much more now as a result of long COVID?

Mayen  09:45

Yeah. So brain fog. Obviously, it's not an official medical term, but it's, it's a way of describing this constellation of these persistent symptoms, sort of difficulty focusing, confusion, and sluggish thoughts, forgetfulness, and this general sense of fatigue. And it's really thought to be because of a part of our brain that is responsible for planning and decision making, and that's at the front of the brain. And that's what we call the prefrontal cortex. And the connections here can be quite sensitive to trauma, to infection. So any structural or functional damage can lead to this constellation of symptoms that we describe as brain fog. And it is frequently described in association with long COVID. And I sort of did a little bit of reading in terms of what studies have been done. And why do we think, particularly with long COVID at the front, that prefrontal cortex is particularly vulnerable. And it it found that when they looked at the volume of the prefrontal cortex in individuals with COVID, a study done last year, they saw a 2% decline in the volume of the brain, here compared to controls who hadn't had COVID, it's obviously something seems to be going on there. And if you then have damaged that part of the brain, it's much harder to complete complex tasks, because decision and planning is affected. But also your language center is also at the front of the brain. And so if you're having problems there, you're going to have problems with words, and some word finding difficulty. Generally speaking, these sorts of structural changes can get better over time. But we just don't have the data at the moment to sort of understand what the natural progression is in long COVID.

Hannah  11:37

Right,

Katya  11:38

I had no idea that there was physical damage to the brain, like the I was gonna say, I thought it was all in my mind, but it's in your brain and your brain is a real thing. 

Mayen  11:56

Yeah. And I think it's not fully understood. Whether it's so it's, it could be a number of mechanisms. So one, is it that the virus is actually getting into the brain and damaging the brain itself directly. And you have the olfactory bulbs, which sort of connect to your nose, and that's an entry point for the virus and travel into the brain? Or is it that actually, it's that inflammatory response, when your body is trying to defeat the virus, and we know that inflammatory response is damaging, and it damages other parts of the body? So is it actually that inflammation that's damaging  rather than the virus itself. And then the other thing is that we know that the virus can also cause damage to little blood vessels. And so is it actually that it's damaging some of the blood supply to the brain, because we are seeing, certainly in, in patients with COVID, there's a much higher risk of having things like stroke, and those are sort of damaging the big blood vessels, or causing clots that block the big blood vessels, but we're also seeing damage to the smaller blood vessels. So you're not going to necessarily have a big stroke, but it might be causing little bits of damage or interrupting the blood supply by damaging the small blood vessels. And so is that actually the the underlying mechanism that's causing these problems? 

Hannah  13:14

Right, with the So how have they kind of been able to see some of these potential changes do they show up on an MRI.

Mayen  13:22

So some of the vascular changes will show up in an MRI, but some of them will be too subtle to necessarily be picked up on imaging. And so the changes that we're seeing, certainly, in terms of the volume, a lot of that is from the UK Biobank, and I think they had about  maybe 400 People with COVID, and then sort of compared it sort of matched controls, and looked and measured the volume of that part of the brain. So I think a lot of it's just been, yeah, just repeated imaging and just trying to collect as much information as possible.

Katya  13:53

If you can't see something on an MRI,  how do they image? How do they know this?

Mayen  13:59

So in some cases, it's generally because we're looking under the microscope. So when we look at some of the peripheral nerves, for example, we're seeing damage to the little blood vessels that supply it. And so you can then extrapolate and say, well, actually, this could be happening elsewhere. And then sometimes you do see it on on imaging, but sometimes you don't. So a lot of it is just hypothesis. We don't really know.

Hannah  14:22

That's fascinating. I had an MRI scan of my brain and they it they said it was completely normal. So as in it looked completely normal. So then, um, that's just makes me think like, okay, so yeah, an MRI isn't necessarily going to catch everything, but could explain why I have these symptoms of brain fog, but it's not going to. Yeah, an MRI isn't going to necessarily like, give me the answers as to why it's happening.

Mayen  14:51

No. And the other thing to say is that we talk about sort of functional problems and structural problems. So structural problems are things that we can see. And we can say, Well, there's a big thing here or there's clearly damage on your scan. But in terms of how something is functioning is very hard to measure, we don't necessarily have a way of identifying if something isn't functioning as well as it should be. So how can I say that this nerve is communicating with this nerve badly? It's not that that that necessarily that your brain is completely normal when we talk about a functional problem. It's just that we currently don't have the tools or the technology to assess how something is functioning, or to identify what the actual cause is. So we sort of talked about structural neurological problems and functional ones where it's more about function. And I suppose if you think of it a bit like software and hardware with a computer, so if the hardware is damaged, you can clearly see your computer's broken, but if the software's damage, sometimes it can be very hard to understand why is my computer just being slow? Because it's a software problem?

Hannah  15:57

Right? Okay. That's really helpful. Yeah, kind of like, I'm trying to, like, interpret this into an image that like I could understand, but it's like, I guess if you could say like, Well, maybe say like, the nerve itself, like, structurally, the nerve is there and looking fine. But it could, it could still not be carrying messages from one place to another. Well, even

Mayen  16:22

Yeah so it's like with the internet, it's going a bit sluggish. Sometimes your screen is freezing. But I can't tell you exactly why that internet isn't working well, my computer looks fine. line looks fine. But I don't know why it's moving slowly.

Hannah  16:35

Yeah, yeah. Oh, that's interesting.

Katya  16:41

So one of I guess I have two things I want to, I want to say or ask the first is, you mentioned damage to the language center. I find that really interesting. Because I have always been good with words. Spelling was never difficult. I wouldn't. I was a school teacher I had a lot of kids with what's it called? Dyslexia, and I could never empathize. I can never think how could you confuse homonyms and antonyms. But now, I mingle words in the same semantic field, the level of madness that is, like, I'll say, I'm feeling good, when I mean, bad. And with spelling, the witches get switched, there and their I get switched by, but I also mix languages. So for example, I typed the other day, that's so shocking, beginning with the French choqu-ing it's that level of confusion, I just wonder if have you heard people experiencing that level of mixing of words?

Mayen  17:47

Well, because I because I don't see patients with long COVID. It's not something that I am necessarily very familiar with, certainly, in people who've had traumatic injuries that have affected the front of the brain. So when I was practicing, then certainly you would see that yes, no, any damage to that part of the brain can affect production of language.

Katya  18:10

And it's nice to hear this because I feel like I have had this concern lately that I've been getting less clever. And it's been kind of affecting confidence. So hearing that actually, this could be the result of a physical trauma is reassuring. And something I wanted to ask is I get worse over time. So in the morning, my language will be better my brain fog is less. Do you know why? Over time, it might lessen,

Mayen  18:39

no not particularly other than you're getting tired. And when you get tired, generally things don't function as well. And your executive planning and decision making will get progressively worse. So the only thing I can think of is you're just getting tired.

Katya  18:54

Yeah. And like at the beginning, it was bad. So by the end, it's like really bad?

Hannah  18:58

Yeah. That brings us on nicely actually, to our next question, which kind of I'm just wondering if maybe this has got similar underlying answers really Katya and I sometimes share with each other the strange bodily sort of sensations that we get. So Katya, you said you feel like your body is bonded? What a

Katya  19:22

Yeah I have weird thing at nighttime and I lie in bed. I feel like I'm moving up and down but like, vertical, it's very trippy. Yeah. Yeah.

Hannah  19:33

I sometimes get little shooting or tingling pains. Like sometimes my leg will randomly kick up and both of us have had kind of dizziness. I know quite a lot. People talk about dizziness. Me and Katya both had that feeling where we're trying to walk in one way. But we're veering off a bit to one side. Basically, we're just we've just kind of noticed this kind of odd collection of weird sensations that we get. What do you have any kind of insight into what might be going on?

Mayen  20:02

Yeah, so if we start with the balance one, first, I think there are two because they're sort of different things going on. And like I said, a lot of it is hypothesis, and we don't necessarily know. But if we think about how we control our balance, so it's something known as the vestibular system. And that's made up of what's centrally, so within the brain, particularly within the brainstem. And then you have the peripheral nerve, that then sort of the nerve that goes from the brainstem, that that leads to your ear itself. And then inside your inner ear, you have all these canals, and all of that work together to then control your balance. And they also communicate with your eye movements. So things like when you tilt your head, it will rotate your eyes in the opposite direction. So that you're still focused on the same thing, otherwise, your eyes would move every time your head moved, and you would get very, very dizzy. So everything has to sort of communicate with each other. And everything's very fine tuned. So balance is quite a complicated thing of everything having to work together. And even your body needs to basically say where you are in space. So there's a lot of things going on that are then communicating. 

Mayen  21:11

And but the main thing is sort of this connection between your ear, and then your brain. And that's really key for balance. And actually, when and there was an I looked around this in terms of other people that have had this problem, and in particular with COVID. And they found that about ... that they think that the virus could actually cause direct damage to the inner ear. And that's then going to throw your balance off completely. But it could also cause problems within the brain itself. And in about 54% of people who had this symptom who had COVID, they found that the problem was not actually damage to the ear from the virus, but was probably damaged within the brain, either from the virus or from inflammation and particular in the brainstem. And so if you have damage to any bit along that pathway, you're going to get dizzy. And you're also going to feel like you're moving when you're completely stationary, because it's just not communicating properly, or functioning very well. And so as yes, you get this illusion of movement, and so that's what they think is going on is that the virus is either directly damaging the inner ear, or it's causing inflammation that's directing bits of the brain that control your balance. And that's why you get the dizziness. Does that make sense?

Hannah  22:26

Yeah, that's making sense to me. But Katya are you following?

Katya  22:30

No, I'm following it. I feel kind of. I don't know why I find this whole thing mind blowing, because, because my experience of long COVID has felt like I'm going mad. Because the sensations are so bizarre. And they don't, to me, at least before this conversation. They didn't seem to relate to each other at all. Yeah, how can I feel like I'm floating in bed? Not steady, not walking straight down the road. So yeah, I think it's fascinating. I guess it's, yeah, there's no way of knowing really is there if it's in the brain or in the ear  per person 

Mayen  23:07

you can, so they can identify whether the dizziness is coming from a problem that's central, so within the brain, or peripheral, so within the air, and so that they can do studies to try and work out where the problem is arising. What is directly causing the problem can be difficult to identify. But you can try and identify where the problem is. And so I think they're showing that COVID is damaging the way things function. But in terms of the actual mechanism as to how it's causing that damage is what we don't really understand.

Katya  23:42

That feels like the question, doesn't it? It will be so interesting to know how, how can a virus that you breathe in, damage your ear? That's probably a very basic question, but I just feel so I feel so baffled by that.

Mayen  24:00

Well, as I suppose it just enters the we think it probably does directly into the brain, but then a lot of damage could also just be the inflammatory response. Yeah, from your body trying to fight the virus, then causing damage elsewhere. And we certainly saw that with with the lungs that actually a lot of people that were dying, wasn't the damage from the virus, but it was their immune system trying to fight the virus going a bit crazy and basically damaging everything at the same time. And so it might be that actually it's damaging other parts of the body.

Katya  24:33

That's really interesting. Yeah. And

Mayen  24:36

Oh and your tingling. 

Hannah  24:38

Yes. Yeah. 

Mayen  24:40

So So actually, this week, I have seen and looked under the microscope at nerves in patients with COVID. And actually there is evidence that it does cause some damage to your peripheral nerves. And again, it's this sense of either it's the virus directly damaging the nerve or or it could be that it's causing inflammation in those tiny little blood vessels that supply the nerve. And so what we're then seeing is actually it's interrupting the blood supply to the bits of nerve. And so you're then getting damage. And then what happens when that nerve is damaged is it can sometimes send these extra signals. And that's going to cause the tingling sensation that you're getting.

Hannah  25:21

Right. So it's kind of it's sort of firing almost when it's shouldn't be

Mayen  25:25

Exactly. Yeah. Because it's been damaged. Right.

Hannah  25:29

Okay. And does that explain kind of the strange, some of the strange movements I get, like when my leg just kicks up randomly is just like a sort of?

Mayen  25:39

Yeah, so sometimes, it could be related to that. The other thing that I thought about that, sometimes we see is something called restless leg syndrome. And I don't know if it's that you feel that your legs are suddenly kicking off off, or you suddenly feel the need to move the leg rather than the legs moving. Because that is something that seems to be reported in people with long COVID. And you see a lot of people with general neurological disorders, and it can be just this sort of this need to suddenly move your legs and that's something we call Restless Leg Syndrome,

Hannah  26:11

right? Mine isn't really a need. It's usually it's one I've got, I'm just tapping away on my laptop. And I've been sitting down for a while, and suddenly my leg will just kick up randomly. And like at first, the way that I've tried to like, come to terms, the weird sensations I get is when I tried to just notice it and be like, Oh, it's okay. It's just my long COVID. Because I think if I really started to hyper focus on them, I worry that I'll then just start going a bit mad with all these bodily sensations. Yeah, so I try to just kind of like acknowledge it, and then just remind myself, Oh, it's just one COVID It's fine, because it isn't like, unnerving

Katya  26:53

Yeah, there are there are degrees, right? I'm I am, I don't have this symptom. But I saw a woman on YouTube who has it, one of her legs just doesn't stop moving. And I've readpeople self reporting on Twitter, then they experienced this symptom constantly. 

Hannah  27:10

Gosh

Mayen  27:12

it's really difficult. And it might be that it's a general sort of post viral phenomena. But because we're seeing so many people who had COVID, all at once, you're just seeing it so much more. And so it might be that actually that people who've had bad viruses will have had the similar symptoms, but we're just not seeing the same number of people reporting it. So whether it's unique to COVID, I'm not entirely sure. And it might be that actually, because because you do describe things like brain fog, lots of the symptoms that people have had after having awful viral illnesses. But I think we're just seeing the sheer numbers, because of COVID hitting so many people all at once.

Katya  27:55

That's pretty interesting. It is strange the feeling of suddenly not being in control of your body. Yeah, it's jarring.

Mayen  28:03

I think it's really important that we try and collect as much information on it as possible to try to understand it, because I think it's still very poorly understood. And although I can sort of tell you what the hypotheses or  the mechanisms in terms of why you're getting particular symptoms, I can't really address the root cause or really understand, you know, what's actually causing that. So it just this is the pathway, but what's damaging it?

Katya  28:33

Yeah, can I go on to the next question? And I did you want to know if you're on the back of that, go for it, go for it. And so something Hannad & I I complain about all the time, is our intolerance to loud noises and busy environments? Do you have any idea why that is suddenly start bearable?

Mayen  28:52

I suppose it's this sense of sensory overload, where you have an overstimulation of any of your senses, and hyperacusis, which is kind of sensitivity to loud noise, or how the brain is processing hearing, is thought to be related to damage of the small bones in the ear canal that then cause abnormal transmission to the hearing centers in the brain. It's also thought to be associated with abnormal function again of that prefrontal cortex and integrating all the information that's coming in. So you can have damage in the ear itself and the small bones where you get true hyperacusis and so you get an input, but the transmission is significantly it's over stimulated. Or it can be actually when it reaches the prefrontal cortex and you're integrating all the information is when you then have this overstimulation and it is reported ... the mechanism itself as to why that integration suddenly causes this overstimulation of your senses is really poorly understood, but you see it in a lot of other disorders. You see in post traumatic stress disorder and fibromyalgia, in autism, where they get this sensory overload. And again, it's just how that it's a functional problem how that brain is integrating the information.

Katya  30:09

It's fascinating to think that it might be that the sound actually becomes too loud in my long COVID damaged ears. Like, I definitely think I have that there are times when sounds will just suddenly be too loud. And like, yeah, I need total silence.   It also makes sense to me that it might be when everything comes together in the brain because it it's not just sound sometimes it can also just be there's too much for me to see right now.

Mayen  30:42

Yeah. So kind of even one of the visual inputs. So it's just this over stimulation of any of your senses. Really? Yeah.

Hannah  30:51

It's really fascinating. I just I think it's so interesting hearing you kind of explain how Well like anything like like hearing, there's this kind of, there's this part, it's not all just down to like, our like the structure of our ear. There's the pathway, there's this. Yeah. And it's that damage could be happening at any point along exactly the way and it's such a, I think it helps us to appreciate just how complex it must be for people to actually work out where the damage is happening, because it could be happening in so many different places. It's fascinating. And you forget, like you said, like the what you're saying about the prefrontal cortex, how much it does, when there's damage to that area or inflammation? It yeah, that's why potentially, we're we're dealing with all of these various disconnected symptoms that potentially kind of have. Yeah, like a shared underlying mechanism.

Mayen  31:52

Yeah. No, yeah. No, completely.

Katya  31:57

Its So funny. I can just totally see like the nerd and Hannah, coming out. Now, cuz it's so interesting. Yeah,

Hannah  32:08

I love it. And I feel like Mayen, you're explaining it. So clearly. I'm really enjoying hearing your explanation. Yeah. Yeah. I think it's just really validating for us, as well as, as people that live with these symptoms. To hear someone explain that potential underlying things, even though you're, you're like, you're saying you can't tell us everything, or there's so much that we don't know, yet. Still, I find it really, really kind of comforting in a way to hear you explain that there are, you know, potential underlying causes. I think it helps to kind of, kind of center me a little bit and be like, Yeah, this is ...

Mayen  32:47

Not just in my head.As in it is in your head because it's in your brain! (all laugh)

Hannah  32:53

Yeah, but like, we're not we're not imagining it. We're not creating this.

Mayen  32:56

Yeah, you're not imagining it... collectively! Something isn't functioning, something isn't working.

Katya  33:03

That one for me is especially comforting because the intolerance for loud noises makes me anti-social. And it's quite unforgivable to go into a social environment and be covering your ears or like leave because there's background music. Hearing this is very helpful, because I could just send it to all my friends and be like, This is why I'm not coming to your uncle's birthday party? Like, Well, that'd be music. Yes. Okay. No, that's, 

Mayen  33:34

Mayen  33:34

Mayen  33:34

That's fair I think that's fair

Katya  33:37

Shall we move onto the next question

Hannah  33:39

Yeah, go for it.

Katya  33:40

I feel like yeah, so this question is a little bit strange, but I'll try and word it out. But Hannah and I, and many other people with non COVID have had this experience of engaging in something that should be relaxing. And that experience triggering a deep state of fatigue and immobilization. So for me acupuncture, which I used to find really restful, now basically, it makes me feel like I'm drugged, and it can take days to recover back to my like, limited energy state. And I'd never heard of this written down until I read The Long COVID Handbook. And the author mentioned this theory called the polyvagal theory. Yeah. Which, which talks about traffic lights for our nervous system, and I don't know what the words mean. But in the theory, you have a green light, which is your parasympathetic nervous system. So what I'm not sure what that is, so I was going to ask, which is like your Yes, yes. digestate. Amber is your sympathetic, so danger, stress, and then red is immobilization and shutdown. And, sorry, the book mentioned an observation that's Some long holders will go into a state of rest. So they should be on green. But something happens that tips them over into the red and their body goes straight into immobilization. And I just wondered if you could speak to that.

Mayen  35:15

So this particular kind of ...this polyvagal theory, it's not a traditional neuroscience one, because there isn't really any evidence for it. So it's kind of a hypothesis that someone called Steven Porges came up with in the 90s. So I don't know in terms of how true it is, because I don't think there's much evidence for it. But it's a hypothesis. So when we think of the the nervous system, if you break it down into your autonomic and your somatic, so somatic are the things you control, so like the things that are moving your fingers, the nerves that supply sensation on the surface of the body, and then you have the autonomic nervous system, which are things that you don't control, so you don't control your heart beating, you don't control your digestion. And your autonomic system traditionally, is divided into your parasympathetic, which is your rest and digest or your sympathetic, which is your fight or flight. So sympathetic, your heart is racing, whereas parasympathetic is all about relaxation. 

Mayen  36:15

So this polyvagal theory comes from the vagus nerve, which is the main nerve that comes from the bottom of the brain that supplies your parasympathetic, so your rest and digest. So the polyvagal, meaning many vagus, I suppose, the theory is that the vagus nerve supplies this parasympathetic, which is your rest and digest, but it splits off into something called your emotional engagement, which is thought to elicit immobilization behavior. So it's sort of, it's meant to be this primitive thing, that if you were, if you felt you were in danger, instead of the parasympathetic system going down that sort of rest and digest, it would go down this immobilization, so people would pretend to be dead. So say, like it's meant to be sort of primitive, so if an animal thought it was being hunted or in danger, it would pretend to be dead, and then hopefully, the danger would pass. And so you then get this emotional immobilization. And so the hypothesis is that that particular system, instead of going into your rest and relaxation, goes down the immobilization route. And that's sort of your your traffic light system. And so that that is the theory. And so instead of going down your parasympathetic to relax, it triggers off that emotional engagement bit instead.

Katya  37:39

See, that's absolutely fascinating, because the level of exhaustion, sorry, Hannah, it feels like my body is playing dead. Like when I get that tired, it's like, it'll just trigger from my acupuncture or sometimes from non sleep deep breaths, I will just become comatose. Like, if ever there was a time to play dead, I could do it post acupuncture quite convincingly.

Mayen  38:03

So maybe there is something in it, but I it's not, I don't think there's much evidence for it. But clearly, if it's a sensation that you're feeling, then

Hannah  38:12

I was just kind of trying to build up an image of what this vagus nerve kind of might look like. So it starts because it began in the brainstem. Yeah, and then travels down and then has branches coming off it?

Mayen  38:18

So it goes down the neck and down the stairs down the body and branches come off and supply your heart and supply your gut.

Hannah  38:34

Right. Okay. And so they're saying it's polyvagal? Because it's like, there's kind of different things that the vagus nerve supplies? 

Mayen  38:42

Well, it's not. So the the reason that there isn't much evidence is because it's not like he's what he's proposing is not a structural division in the parasympathetic chain. It's a functional division. So instead of going rest and digest, it's going kind of emotional engagement, and immobilize. So it's meant to be more functional division coming from, and that's why it's very hard to prove. 

Hannah  39:10

Okay, got it. Yeah. Yeah.

Katya  39:12

Gosh, thanks so much for explaining that, that, that theory is it's just so interesting. I know we have time for one last question. So this comes from one of our listeners, but it's a symptom that has been described by loads of people online. And so this person has fairly regular episodes where they'll be completely exhausted, but then their speech starts to become affected. So it starts slowing down, it becomes slurred and they don't always make sense. And they start like staring kind of vacantly into space and they just can't really communicate anymore. And they wanted to know , is this the type of thing they should go and see a neurologist for or is it just part of the long COVID package

Mayen  39:59

 Are they aware that that's happening, because that's very different. Because if they're aware that they're a bit sluggish and a bit slow, then that can be part of brain fog. However, if they're having these kind of periods of absence of staring into space, and they're not aware of it, then I would certainly advise them to see a neurologist. Because then that could be you're describing a seizure, and then it would be worth investigating that, and it might be that then they need imaging to make sure that there isn't another structural cause that could be contributing to that. And then if that's all clear, then it might be that they actually do need some medication. So I would certainly seek advice in that situation.

Katya  40:41

Even if the person knows that they have long COVID, should they still see neurologist?

Katya  40:47

even in that context, because I wouldn't say that you should presume or assume everything is down to necessarily long COVID. And there was certainly a case report done of an individual a 70 year old, who developed epilepsy following COVID. And they would have what we call sort of temporal lobe epilepsy, where you do have problems with memory with awareness, and you do a lot of movements repetitively sort of lipsmacking over and over again, or the same thing over and over again. And certainly there's loss of awareness. And when they, and that individual had an EEG, which looks at the electrical activity of the brain, and you could actually see there were changes in the electrical activity of the brain in that part of the brain following COVID. So it's certainly worth seeing someone and not assuming it's down ust down to long COVID.

Katya  41:41

Yeah. Thank you. Thank you so much. That was really interesting. I've learned a lot. That was helpful. Yeah, it really was, I feel a lot less like this is in my head.Hannah, do you have anything to say?

Hannah  41:57

No, just thank you really like clear explanations...

Mayen  42:03

And if you did want to speak to a neurologist who does see patients along COVID, I do have colleagues who do actually see patients with lung COVID. In fact, I have someone who has a neuro intensivist. So works in intensive care with a lot of these patients with COVID, and has done quite a bit of work on inflammation as well in these individuals.

Katya  42:26

Thank you so much Mayen.

Katya  42:28

All right. And that was our interview with Dr. Mayen Briggs. Thanks so much to those who submitted questions online. We couldn't ask all of them that we did our best. And I hope you found this interview helpful. And a final thanks to Dr. Mayen Briggs for your time. 

Jingle  42:44

I'm having a good day. 

Katya  42:50

We've both agreed to take a break from the podcast. Yeah. I'm very excited to take a break. I love the podcast, and I, I can't believe like when I look back on this stuff on like what we've made. It's amazing. I just wanted one person to listen to us. And I think we have something like over 1000 listens. Which is crazy. Yeah, I know that people have really enjoyed listening to the podcast people with Long COVID whio have felt really sad alone have listened to us and laughed. Some of the messages I've received have warmed my cold COVID soul. And, and so yeah, I think on the other hand, though, making the podcast requires an enormous sacrifice, because we have to sacrifice a day on the weekend to record, to plan and then that's the whole edit. Yeah,

Hannah  43:46

I It's been like, really fun to do it. But yeah, there are a lot of components required. And I think it's sensible for us to take a break to avoid ourselves burning out and then come back refreshed to plan some more episodes and keep going. But yeah, practice what we preach. 

Katya  44:15

I'm um, I'm gonna take a break as well from the social media stuff. I've done a lot of work on Instagram, just growing the account like posting short videos and stuff.

Hannah  44:25

Oh my God, I don't know how you do it. 

Katya  44:27

It's tiring. 

Hannah  44:28

The social media stuff like it it fries my brain.

Katya  44:33

I'm going to take a break from that. What will you do Hannah with your with your weekend for the next like two months.

Hannah  44:40

Hopefully it means that I'll have opportunity to maybe do a little bit more social staff a bit more often, particularly now that it's moving into like spring and stuff. It would be nice to start trying to be a bit more social. So

Katya  44:53

yeah, , mine is less cool. I used to play League of Legends for my brothers on Saturday afternoon. Yeah and I haven't played a computer game since we started the podcast. Oh, so I literally like, I can't wait. I'm gonna be playing League of Legends. You have anything else you want to say?

Hannah  45:12

No, just thank you for doing all of the editing and slaving away on social media. And I feel like I've, I've just popped up for the conversations and then like, given my two cents on the editing process, but you've kind of been the mastermind behind it all and you've put in the grind. It's your podcast, but like plus Hannah, as Well as like, I don't know what

Katya  45:40

I disagree. If you want to we can put your face all over it. I genuinely wouldn't mind.

Hannah  45:45

I'm good. I'm fine. I'm very happy for you to continue to be the face. If your tolerance for social media is low, like mine is like, wow, like in the minus numbers.

Katya  45:58

So yeah, Hannah struggles with WhatsApp. So I don't think we're gonna get you on like Twitter and Instagram. I realized now I did some research into like how people grow on social media, you have to spend hours. I read one thing about Twitter and the guy was like, Oh, you you need to post seven times a day.

Hannah  46:15

What? Who will read your post seven times a day? Right?

Katya  46:19

But then I started looking at the people who get followed on Twitter. They will post like seven times a day.

Hannah  46:25

Geez.

Katya  46:26

It's just like an algorithm. Oh, yeah. I just wanted to quickly say, like to all the people who listen to us and have listened to us even after the one or two like bad or strange episodes, we have people who have stuck with us and people who will have listened to all eight episodes. They've heard us for like seven hours. So just a huge thank you to everyone who listens to the podcast because yeah, it's really, really cool. 

Katya  46:58

So a few final thank you's. First to Hannah. I know, Hannah says that the podcast is all me. But it really isn't. Her calm, measured, thoughtful approach to things has been an essential ingredient in this series. A huge thank you too to Hannah's partner, Chris, her mum and dad and sisters, for supporting Hannah, and for listening to draft edits of the podcast and giving us your feedback, I think at one point one of Hannah's sisters even looped in her boyfriend for a critique. So I really recognize the family effort. And it's so appreciated. Thanks to my boyfriend, Mattie, who's kept me sane throughout the project, and my parents who have listened to some of these episodes four times without ever once complaining, thanks to my friends, you know who you are, who listened to the podcast, even though you don't have long COVID. And of course, we wouldn't be anywhere near as professional if we didn't have a fabulous logo made by the illustrator Ellie Atkinson, and our brilliant jingle produced by Harry gold. Thanks to Gez Medinger and Dr. Mine Briggs for appearing on the podcast, and thanks to our listeners. Hannah and I'll be back later on in the summer. If you'd like to be notified of our return, head over to bounded energy dot code at UK and sign up to our mailing list or follow us on Twitter, Instagram or Facebook at bounded energy. If you'd like to get in touch our email address is bounded energy@gmail.com Thanks

S2 Ep#1 Long Covid Catch Up

Katya  00:00

I re- listened to the episode from last week. Yeah, I sound like such a baby.

Hannah  00:07

 Really?

Katya  00:08

You're like, how did you feel about fibromyalgia? And I'm like, Oh, you're my nan COVID Friend Like, I sound like I'm afraid that you're gonna suddenly be like, catch. I can only be friends with people with my specific chronic illness.

Hannah  00:24

Katya, you're no use to me anymore? Yeah,

Katya  00:28

it's like I have fibromyalgia like you're not, you can't sit with us.

Jingle  00:35

I'm having a good day, minute/hour/week. What to do and how to be with the beans given to me? Me and my bounded energy

Hannah  00:51

medical disclaimer, we are not doctors, and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  01:01

Hello, hello, Katya here and I am so so happy and excited to be back. While Hannah and I have enjoyed the break. We've really missed the podcast. I'm so pleased that we've decided to do a second season, we went back and forth on how we can make it work with our health and work responsibilities. And there are going to be a few changes to have will do things this time. You may have noticed from our last episode of season one, Hannah and I were totally burned out at the end of that. I can't speak for Hannah. But for my part, I can say that the biggest cause of my burnout was, again, social media. And so to put it simply, I'm just going to be posting a lot less. I hope people are okay with that. I expect you will be because if anyone's going to understand things like burnout and fatigue. It's the people who listen to this podcast. Having said that, though, one of the biggest joys of the podcast are all the wonderful messages we received from you guys on Instagram, Twitter, and my absolute favorite- email.

Katya  02:04

I know there's been a radio silence for me on the messaging front and season one. So to everybody who wrote to me and received a response two months later, please know how guilty I feel. But I'm back. And as you're hearing today's episode, Hannah and I are thrilled, thrilled, thrilled that the emails we received during our break. So please, if you listen to the broadcast and you want to say hello, send us an email at bounded energy@gmail.com. Another thing is Hannah and I were very ambitious first time round, we made long episodes and release them every two weeks. This time round, we're keeping ourselves at 30 minutes, max, and we're going to be far more loosey goosey with scheduling episodes will be released when we're ready. So do subscribe to the podcast so you don't miss out and look forward to the pleasant surprise new episodes appearing at total random in your feed. Okay, no more ado, here we go. Then, in this first episode, Hannah and I talk about how our symptoms and diagnoses have changed since the last season. The impact chronic illness still has on our lives. The reasons for continuing the podcast, and we have listener mail. Thanks for listening.

Katya  03:15

Should we start? Should we just go? Let me put a timer on Hannah, because

Hannah  03:23

we're going to be strict this time.

Katya  03:26

Exactly. I need to remember five minutes before the end to share the emails with you. Because we have two emails.

Hannah  03:34

Oh cute. Okay. I hope they are nice and not like hate messages.

Katya  03:41

haha! - yeah so i was listening to your podcast and I found you both really tedious.

Hannah  03:46

Oh no not Tedious.

Katya  03:50

How are you? How are you feeling? This feels? Feels weird. How are you? How are you?

Hannah  03:56

I'm okay. I'm, you know, I still am not better or returned to normal. I read in an article yesterday, in the week there was a spread about long COVID and it was saying apparently 75% of people who get it recover within 12 months. And I was like okay, that's that's not me. I mean, that's great to hear that so many people are recovering. But yes, I'm very much not one of those people. And my long COVID diagnosis has kind of formed into something else. a rheumatologist has diagnosed me with fibromyalgia that he thinks was triggered by COVID

Hannah  04:42

So basically everything I've been experiencing since contracting COVID for the first time has been kind of building and you know, I'm now according to his professional opinion, I am living with a long term condition called Fibromyalgia Which is where you experience chronic fatigue, a lot of chronic pain. And to be honest, like, since getting the diagnosis of fibromyalgia, and actually having someone say, this is a long term condition, and you know, these are ways that you can learn to live with that condition to the best of your ability throughout your life, that has actually been the biggest relief, because I was feeling like such a failure because I wasn't getting better. And like, I was feeling continuously disappointed that I wasn't recovering. And having having someone say, this is probably going to be a lifelong thing you're going to live with it will have ups and downs and get better and worse, at different time points. But this is just something that you have it It took pressure off me to be like, I have to get better, why am I not getting better other people are getting better, what am I doing wrong?

Hannah  06:07

And it has actually really motivated me to really start engaging again, in like things that I do know will make a difference and make me feel better. But you know, I know aren't going to cure me. I'm not I'm not going to be who I was before I got COVID. And I'm really aware that not everyone will really relate to that way of thinking. Everyone kind of responds and manages chronic illness differently, don't they? Yeah, I just, that's just, that's just how I felt in response to having a rheumatologist say, Yeah, this is looking like a long term condition. I actually felt really quite positive. But I know other people will, in my in my situation would feel completely different. Yeah, that's just my news.

Katya  06:59

See, we have this, because obviously, it's been I guess, like three months, we've had a three month break for the podcast and we caught up. And you told me about your diagnosis.

Hannah  07:11

 Yeah. I think was it like a month ago or something? We had a conversation. Do you want to talk about how you then felt when I told you that?

Katya  07:20

Yeah, I felt like I didn't have to say without sounding like a complete arsehole! I felt really upset. I felt upset. And it's like, it's so complicated. Long COVID is so complicated. I had the whole like, you know, because Hannah has been my you've been my long COVID, buddy. So that was the whole thing of is Hannah still my long COVID Buddy ? Because? Yeah, I mean, it's just been. I obviously have come to realize that yes, you still are my long COVID, buddy. So I had the Yeah, the kind of concern of oh, what if it it's just me!

Katya  08:00

But then I also had a, because I'm still clinging to like the full recovery dream. I feel like it was interesting when you said when you mentioned that article in the week, right? Because if I think I first got COVID In May 2021. And then by September, I was experiencing long, COVID symptoms, but that over the course of that whole year, September 2021 to August 2022. I basically recovered, like by August 2022. I probably just, I would say I just looked like a really unhealthy 28 year old. You know, like I could walk for an hour and work full time and like, so when you said that thing about money week, I was kind of like, well, maybe I'm one of those people who like would recover in a year if they just never got COVID again. Yeah, I like what I like my experience of long COVID is cycles of COVID infection, chronic fatigue, slowly improving. And I think I had kind of assumed that you were on that same cycle as me because you have caught COVID every year since 2021, haven't you? Yeah. So it's like a it's like a different framing and like, I can completely get the piece that comes with my diagnosis is chronic pain and chronic fatigue. And Fibromyalgia is the umbrella term that most covers this. It Like It Is COVID induced. But I I can understand that for you the name is freeing because you're you're not subject to something that I find difficult which is like people expect me to be getting better.

Hannah  10:01

that's, that's the bit that I found really difficult. Just being, you know, I'm sure it it's largely imagined, but I imagine that people have these expectations of me that every time they see me, I'll be that bit better and that very soon they'll just be with a Hannah pre COVID. And, and just feeling like I was presenting every time like obviously not that and sometimes just being significantly worse. So for me it's taken off pressure. And actually I am, you know, I've been reading about how people live with fibromyalgia live with chronic fatigue syndrome for years and years, but actually can do learn to manage it and actually do have a good quality of life. And actually, that's been really heartening kind of looking at it in that way. But, yeah, it's difficult as well, because I think, with the podcast, I feel also like, oh, shouldn't I be spreading a positive message of like recovery? Am I? But yeah, I'm kind of, I can't give that message of recovery. I don't, that's not my lived experience.

Katya  11:15

I really don't think that would be helpful. I have quite a few people in my social world, who are still struggling with long COVID And who speak to me about their ongoing struggles to three years post initial infection, and I can't think of anything less helpful than if you and I were to be like, season two. I'm like, completely cured. Do not I mean, yeah, yeah, definitely, you still describe yourself as suffering from long COVID, post COVID syndrome?

Hannah  11:51

Um, I think I like fibromyalgia more, because it's a bit more specific to my symptoms. Whereas your COVID is so broad, it can present in so many ways. Fibromyalgia is perhaps gives us a clearer picture of the type of symptoms I have. So what I now say is, I have fibromyalgia that was triggered off by it is very likely that it was triggered off by getting COVID.

Katya  12:21

Can you just summarize your symptoms as they pertain to fibromyalgia? Just for people who are listening who maybe don't know?

Hannah  12:30

Yeah, so Well, chronic fatigue, but the leading symptom over the course of my time since COVID, has been that pain has gradually amplified over time. So now, speaking to the rheumatologist, that's what he talked about a lot was that I have a lot of pain around and tenderness in my muscles and joints. And then I also have very poor sleep. And although I said in this in an episode on this podcast, that I sleep for hours, and I'm out like a light, what the doctor said was like, it's very likely he was like, Are you waking up feeling refreshed? I was like, No, I'm not. And yeah, he was saying that. I bet that that sleep isn't actually quality sleep. And something I've realized since getting a Fitbit, is that while I'm sleeping, I'm not getting much deep sleep at all. And my heart rate is very elevated throughout long periods of the night. So my body wasn't getting rest. Oh, shit. So yeah, yeah, the honestly getting the Fitbit that's hard. I really, I would really recommend people to get something like that where they can keep keep a track of their sleep and their heart rate because I did not realize how fast my heart rate is, at different times in the day, triggered by different activities, but then I had no idea how high it was at night. So of course, I'm waking up exhausted. Yeah. And if you're,

Katya  14:21

well yeah if your rest is accompanied by 100 beats per minute!

Hannah  14:27

Yeah, so that's been really interesting. And the doctor prescribed me a medication called amitriptyline, which some listeners may have heard of, and I take it in the evenings before I go to sleep. And he said What this will do is it will help your body to actually shut down overnight and it will help you get a deeper sleep and it has helped. It really has I've noticed a difference since being on it. And I am feeling better in the day now because of it. So I've had a very positive experience. Reince so far, I'll let you guys know if something changes. But so far, I've had a really positive experience of going on amitriptyline. It made me feel like hell for the first week. But then, since then it has really helped my sleep. So, so interesting. Yeah, yeah. But I think it was listening to jazz in our, one of our episodes last season that made me think like, oh, maybe I should be, you know, taking a bit more effort to monitor my like body. Whereas, I think I'd been avoiding it because it made me worry, I didn't want to know almost it was that like, denial of like, I'll just float along, and I will recover soon. Yeah, really wanting to know, like, what my heart rate was. And so I finally got that fit bit. And I really, really don't have any regrets at all.

Katya  15:55

Oh, geez. I feel like you're like a more evolved version of me. I know, I want to say, I know, I want to talk to you guys. But like, You're so much better at managing your symptoms. And you're kind of just like, well, I've had a year more, but I got a Fitbit. And then I had my physio tell me, you need to keep your heart rate below 100 I realized that my heart rate is not below 100 doing normal things like walking around and like reading or having a vivid daydream. So about a week after buying my Fitbit, I just took it off. I was like, I can remember looking at it. And it was like 120 121 100 And I was like eating a banana or something.

Katya  16:40

And I was like, Screw this! like, I really don't need I don't I mean, I don't need theterrible state of my metabolism put in front of me

Hannah  16:52

just being flashed at me on my wrist! Yeah, I yeah, I totally understand. I feel like I've talked a lot now. So do you want to

Katya  17:03

talk about where i've been? Yeah. Yeah. Okay. Um, yeah, cuz the first thing we were gonna say is like, what have we been up to? In the few months? And you've obviously had your diagnosis and they're managing your symptoms a bit better, right? Yeah. I, I'm guessing I'm one of the money week long, COVID people because I've gotten much better since March. I went back to my rheumatologist. And he put me on prescription antihistamines. I take one in the morning and one in the evening. And I noticed a real boost in my energy levels from the antihistamines, which is really, really interesting. I'm on famotidine and fexofenadine. I take one in the morning and one in the evening. And I just noticed something about my body calmed down a bit. And it probably gave me an extra, like 15/20 minutes of useful energy.

Katya  18:13

But I've just noticed, like, it's so tricky. I know. I do want to separately talk about progress. And like, what does progress mean? Because I feel like my long COVID As it gets better, becomes more invisible and sometimes harder to manage socially. So for example, since going to work four days a week in March, I haven't had a single day off work. And I've just noticed, like, lately, I've been able to do a 20 minute walk every day. Every once in a while, you know our site, you overdo it, and I have to miss it. But I've been like, more consistently active. So I I do feel like my symptoms have improved.

Hannah  19:02

That's great.

Katya  19:03

Yeah, and it's weird, right? Because I can't part of me feels like, can I still do the podcast if my long COVID is not confining me to my bed every week? But actually, yeah, I think it's good for people to know that you you can improve and you have I'm currently experiencing improvement in my symptoms. Yeah, definitely kind of guilty.

Hannah  19:28

No, no, it's good. Like, I think that's, it's nice that we, you know, are kind of able to speak about different experiences of having it, you know, I'm, I'm here saying like, Oh, I've found out that, you know, I have a very chronic manifestation of this that's probably going to last, you know, for the near future. And then you've got a different story of like something that's more hopeful. Hopefully, this means that, you know, you might actually be recovered at some point soon. Touch wood.

Katya  20:05

But this is this is the thing. Like, I feel like I'm getting to a point with long COVID that is tolerable, if that makes sense. So like, I can live in tolerably happy life with my symptoms as they are. But I am nowhere near how I used to be like, I still can't exercise or dance, or I'm still one social activity a week, if that makes sense. And I still sometimes overdo it and have to spend the whole day inside for a couple of days in a row. So yeah,

Hannah  20:39

it's, it's progress. It's all relative.

Katya  20:42

Right? Yeah. Yeah, it is.

Jingle  20:46

 I'm having a good day.

Katya  20:50

Should we move on then to like, let's talk about doing a second season? Yeah. The thing I want to begin with is the reason for doing the second season. And for me, one of the biggest reasons is that even though it's been three months, people still listen to our episodes, which to me is just that sense of like, you know, there are episodes, we've done that I'm just like, ah, that's so cringe. But there are still people out there who listened to them.

Hannah  21:22

Yeah, definitely. Yeah. And also, like, I did miss our conversations. I felt like during the past, it was a reason to, like, get that motivation to meet up and chat, which I do think actually really, really helped get me through what could have been, you know, even more difficult time for us both

Katya  21:46

I agree, something, something I've been doing, actually, in the months since we stopped recording, is I've started therapy. And one of the things that actually came out of therapy was how useful these conversations were to process. The trauma of long COVID Oh, my God, and I've actually been re listening to our first season, Hannah. Yes, yeah. Yesterday, I listened to the first three episodes. And I was just like, it was really comforting. So it's kind of like, yeah, for all of those people out there who are listening to us, like, hello, hi. We're really sorry that like, this is relevant to you. But like, it's still relevant to us. And it's nice that people find some comfort. Yeah,

Hannah  22:35

yeah. And it's so it's so validating to know that, like, there are other people out there kind of going through something similar to us who find something and what we're saying that like, strikes a chord with them.

Katya  22:48

Yeah. Because this is the thing like it's so we've spoken a lot about the unreality of this illness. Now that it's been so long, my life is so adjusted to long COVID Everyone is adjusted to my, you know, like, they know that cash will only stay for a short period of time, or cash never comes into work, it can start to feel like you forget that this is an illness. And this is kind of messed up.

Hannah  23:18

I really am like, I feel like a frog in hot water where like, as the water heats up, they can tolerate it, or they they don't realize how hot it's getting, just because they're so gradually gradually adjusting to over time. And I am like that I'm in a very, I've sort of made for myself quite a protective bubble around my illness. And yeah, I get a bit of a slap in the face when I am put in situations where suddenly I'm like, that little bubble is challenged. So just going to a party, you know, I went to somebody's birthday party the other week, and I managed for a short period of time, but then was really going downhill quite quickly. And you know, had to kind of give Chris a signal of like, I need we need to go now. And you know, as I was putting my shoes on as I was leaving the house, like my hands were just like trembling, doing my laces. And I was like, Oh God, like, the fatigue is setting in. And I just felt so fed up on the drive home. I was just like, Oh, why like, it's it? Why do I do these things? It just reminds me of how crap I am. And that doesn't last long that feeling these days, but it is just a reminder and I'm like, Oh yeah, actually I am ill and I can often pretend I'm not.

Katya  24:46

Yeah, and that like sometimes it comes up in like an anger. Because for me for that I would be like God this is so messed up like everybody else can stay. Why am I the one leaving the party like I had? I went to all The other week for the first time, in ages, I go to a weekly life drawing class. I messaged you about this, Hannah, because the guy next to me had a cold. And he wouldn't stop coughing. And he just coughed with his like nothing. He literally just opened his mouth and coughed. And right next to me, I noticed all the disgusting tissues everywhere. And I was sat there, and my thought pattern went from like, okay, like, just stay calm catcher. You might not get sick. And then it was like, No, this guy. The anger I felt was visceral. It was like animalistic, like, I wanted to murder him. Because the truth is, is it's like, well, he might have COVID, I might get COVID, I might then spend six weeks in bed, and I had everything built. And then I had a panic attack. And I had to leave early. And I literally sobbed on the train the whole way home. It's horrible. And so it's just that thing of like, okay, fine. Like, I've made progress. And I'm living with long COVID. But this is still real, like, it's still an everyday part of my life. And, and sometimes it's a hugely disruptive. Yeah, yeah,

Hannah  26:21

definitely. So, in a nutshell, that's why it's important to keep talking about this! (both laugh) Yeah, keep producing episodes that people might listen to. And my

Katya  26:34

Yeah, helpful. Exactly. All right. I know, we're going to be strict for time. Should we go on to the bounded energy inbox, because we received some emails while we were away. Okay, so I just I guess, first of all, I must issue a profound apology because I know I said I would check the inbox and I just didn't want to just totally burn out. I'm so sorry. Okay.

Hannah  27:03

I'm very happy for you to just deal with anything social media related, because I am a recluse.

Katya  27:10

Hannah's an old lady in a young woman's body. I am. Okay, so this message came from Holly from the UK. And , I'm not gonna mention what Holly does, just to keep things completely anonymous. But Holly emailed us and said, Dear Katya,and Hannah, I've just listened to your podcast on long COVID. And work and found it incredibly helpful to hear other people expressing the way I feel about working with longCOVID. My job is mainly practical, but also involves a lot of outreach and some admin and I find this the most draining because face to face and computer work needs to terrible headaches for me. I also recently got this job and feel exactly like I've tricked my colleagues into giving me the job and that I'm unlikely to be able to keep it.

Katya  27:53

 Oh, oh, Holly, I feel you.

Katya  27:57

Everybody is encouraging and understanding. But I have terrible demons telling me that I'm not doing well enough. And I have a great sense of sadness that I cannot function like an ambitious 20 something year old, like I used to. I'm very bad at telling myself to stop and have regular breaks. I feel guilty doing this when no one is. I'm currently in bed having called COVID for the second time, and I'm considering asking to reduce my hours to for the week moving forwards. This has felt like too much to ask my manager. But I feel encouraged to hear that you've made requests and feel that they've been welcomed. And I liked the idea of phrasing it as a request rather than a problem.

Katya  28:32

Yeah, you are not a problem, Holly.

Katya  28:35

I'm sure this comes up throughout all of your episodes, but an episode on mental health could be really helpful to listen to you as this is a hugely draining factor also affecting my symptoms. Thanks for your honesty and helpful tips. And it for us listening to my episodes, or the best Holly.

Hannah  28:50

Oh, thanks, Holly. It's honestly, it's means so much that Holly took the time to write all of that. And I could relate to so much of what she wrote. I think in terms of negotiating, cutting hours down if that's something that you can manage financially, like I would really say go for it, because I've just seen what a difference it's made for Cattier. But yeah, I think that impostor syndrome feeling is something I definitely still have. And I feel so guilty taking breaks. It sounds like you're a bit of a perfectionist, which is like definitely what I am as well. Yeah, you are not a problem.

Katya  29:34

Yeah,. I agree. I agree. I feel like all employees, I feel like employment is set up such that the employer will get more from you than they pay you. Otherwise, like they just wouldn't be profitable. I don't know if that's like, I don't have an economic background. But it's like they can they can afford for you to take breaks when you need to. And just the fact that you're writing this email makes me think you're probably a super conscientious, hard working person. I think we've spoken before about type A personalities being ripe for long COVID. Like there's a correlation between that type of person who wants to go and go and go, yeah, yeah, getting sick.

Hannah  30:18

And it sounds like, Holly, you are an absolute asset to that workplace. It sounds like you give a huge amount of yourself to that job. And just don't ever forget that. I've had experiences where I've really felt not at all valued because of my illness in a workplace. And that's really hard to go go through, I think I've learned that like, I can't rely on my boss or whatever, to be giving me external validation all the time, I have to just really believe it in myself and be able to like, like, comfort myself that I know, I'm giving this my best, and I know I'm doing enough.

Katya  31:02

Yeah, and if they don't recognize that, then time to start looking for another job. As far as like asking to go down to four days a week, I think my biggest piece of advice is just taking the time to really explain to your manager, what long COVID is, and what the symptoms are. Uh, for me, that was like, the most helpful thing in terms of communicating my needs my manager, he'd already seen all of my like, struggles. Yeah, and I also think like, an episode on mental health is a great idea. Yeah,

Hannah  31:37

I think to be perfectly honest, me and Katya have talked about doing an episode on this, but I think, Well, I'm a little bit avoided about it. For one thing, I think we're just like, wow, what did it what a what a beast to tackle? How could we possibly like, we would have to break it into sub themes. Like, who knows where it would go? Because also like,

Katya  31:59

we're not gonna it's not it's gonna be like the blind leading the blind, isn't it? You have to like really neurotic, anxious people. I don't think we're gonna come on and be like, I used to have all of these mental illnesses. And now and then I like, took cold showers and took a vitamin C pill, and I'm completely better. I think.

Hannah  32:18

I honestly think I can do it. I feel like the the concluding statement of that episode for me would just be I have ongoing mental health issues. I'm trying but I have no answers.

Katya  32:30

Yeah, I think that's what people want to hear Hannah. So thank you very much for email, Hannah, Hannah, Holly. And there's one more Hannah, from Martha. Hi, Hannah. And Katya. I don't know, if you're checking the podcast email.

Katya  32:46

 I'm sorry.

Katya  32:47

But I thought I'd send a message just in case I'm 26. And as you might have guessed, have long COVID. I wanted to let you know that I find listening to you both as people in their mid to late 20s. With this really comforting, so much of the long COVID content online feels like it's four or by people quite a bit older, who are at what feels like a very different part of their lives and careers. I'm appreciative for any kind of solidarity. And it makes me feel much less alone knowing there are people my age dealing with it to sending you lots of beans, Martha.

Hannah  33:18

Oh, thanks, Martha.

Katya  33:20

You're not alone

Hannah  33:22

Definitely not. I totally agree about that. It is so and I think Holly mentioned it as well. Like, it's really hard when you're in your 20s because you have this thing of like, I should be like raring to go, like making gains in my career. There's all there's different expectations on you. And, yeah, I definitely felt like when I was when I went to the long COVID talks, like the long COVID clinic talks that they ran about managing fatigue and blah, blah, blah. I really, I mean, I was the youngest person in that group, by a long way. And I really felt like the content was geared towards a different demographic. Yeah, I totally relate to that.

Katya  34:09

Hang in there, Martha. Sometimes, like, I was talking to my friend about this yesterday, because you do have that feeling sometimes of like, your youth being robbed from you. But then I just think that it's like, we're not alone. I think of all those people who turned 20 like the start of World War One, you know, and then, like, they must have felt so excited to be a young adult and independent and then this absolute tragedy just befell them or do not I mean, it's kind of like, not like most people aren't living 90210 Yeah, yeah.

Hannah  34:47

Like people's, like youth are affected and all these different ways. And, yeah, yeah, that is true. I think. I think sometimes part of the isolation of having long COVID Is that because you can't be with people face to face you do then end up observing the world through the lens of social media a little bit more often. Yeah, if that's true for other people, but that's something I found. And that's kind of even more why I've just really stepped away from it. Because I was like, I think I'm just getting myself. I'm just getting a very warped reality of the other types of lives people are living and negatively comparing myself.

Katya  35:26

Yeah. And like the truth is, is I know a whole lot of people who don't have long COVID, who also spend like Friday and Saturday night alone, mostly playing computer games with me,

Hannah  35:36

like your brother.

Katya  35:39

like my brother and fair few of my online friends! All right. We've gone slightly over. How it are you? Are you feeling okay? You're not feeling too tired?

Hannah  35:53

No, I'm feeling okay. Actually. Yeah, usually, I'm feeling really knackered by the end of a conversation that we would usually have because we lost for ages because we don't want to stop talking. Yeah.

Katya  36:05

Okay. All right. All right. Thanks so much for listening. Join us next time when we'll be talking about long COVID and progress from the minefields of how are you to the directed are you better yet?  . Questions, comments, reach out to us on Instagram at bounded energy, or email us at bounded energy@gmail.com full transcripts of each episode are on our website, bounded energy dot code at UK thanks for listening

Ep #7 A Conversation with Gez Medinger - Expert Patient & Co-Author of The Long Covid Handbook

Katya  00:00

 I feel lucky because I've seen a lot of his videos and stuff... I know he's quite a relaxed, funny person. Yeah. But I also feel really, I feel nervous because this feels like the first episode that's not in our control.

Hannah  00:20

I know. Yeah. And especially where there's a time limit. That's where I was like, Oh, we got 45 minutes! That for me feels like - oh God, because it feels like we've got to try and make sure that we don't go way too off topic and that we're quite, you know, correct. concise.

Katya  00:37

And historically, Hannah, we speak so slowly, like everything is so edited for the podcast, we'll have like two hours of conversation normally that will become 45 minutes and it's the silences the repetitions, the erms the tangents! (both laugh) . I was gonna say I also realized like, you can't be in bed. Neither of us can be in bed for this one we have to be ...

Hannah  01:00

Oh yeah like look our best, like the sitting up at a table. And yeah, looking professional! Yeah, one thing I think we mustn't do is we mustn't be tempted to get sidetracked talking about like, Oh my God. Yeah, that's like my experience is like, we have to literally like get as much as we can from him.

Hannah  01:23

But yeah, like, imagine how, how inappropriate it would be if we had him on and then just talked about ourselves.

Hannah  01:31

Yeah, exactly.

Katya  01:32

Yeah, that's so interesting, because it's interesting that you wrote a book just because I have a diary. And in my diary... (laughs) yeah. Yeah, that'd be really inappropriate.

Jingle  01:42

I'm having a good day /minute /hour /week, what to do and how to be with the beans given to me, me and my bounded energy,

Hannah  02:01

medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  02:14

Hey – Katya here and thanks so much for joining us today! Well, I am so so excited to share this episode with you, in which we speak to Gez Mendinger, co-author of The Long Covid Handbook – the essential guide for anyone living with Long Covid (and those are my words, not a subheader)  I read the Long Covid Handbook at the start of December 2022, a few weeks after Hannah and I released the first episode of this podcast. The book had actually sat on my shelf for a few months before I opened it up, and the truth is I think it had been a fear of what I might find there that had stopped me diving in, and really from engaging with any of the Long Covid research (not that there was that much out there). I’d been the type of long covid patient who sees words like dysautonomia, mcas and the maybe after a brief google search in which I’d stumble on words like ‘blood clot’, ‘no known cure’,  I’d run back to the comfort blanket that was my ignorance and denial. The process of making this podcast and then realising that people who were not my parents were actually listening to it, gave me a sense of renewed responsibility – how could I speak about Long Covid if I wasn’t up to date on the research? Or if I didn’t understand the experiences of my fellow sufferers?  And so I bought Gez’s book. And I’m so glad I did. 

Katya  03:33

The Long Covid Handbook is like a fast track course in Long Covid science, a how-to for managing symptoms, and a source of profound reassurance and comfort. As someone who has long covid, my reading experience was one of closing the book at times and sobbing in relief – ‘it’s not just me’, ‘I didn’t do this to myself’, ‘this isn’t in my head’. If you have long covid and you’re wondering how to help yourself, read this book. If you love someone with long covid and you’re wondering how to help them? Read this book.  Gez Mendinger is referred to as an ‘expert patient’ because of his level of engagement with both the long covid community and the medical community. Two months after recovering from his acute covid infection, Gez began documenting his experience and sharing the relevant science on his youtube channel. Aware of the glacial pace of scientific research, Gez began carrying out patient led research through social media platforms – asking fellow sufferers about their backgrounds and experiences and publishing the results. As a result, Gez became the voice of the Long Covid experience for many – because he was essentially a funnel and a microphone, capturing the long covid experience and sharing it with the world. Many sufferers (including myself) feel a sense of gratitude to Gez, because it’s noise made by people like him who have spurred on the remarkably quick wave of long covid research. 

Katya  04:59

My reaction to LC had been to ignore and deny it for so long (I guess its very hard to be curious about something that you perceive as ruining your life), and after listening to this conversation with Gez, I wonder not if this wasn’t childish of me. The thing that struck me with Gez was his seriousness. Don’t get me wrong, he’s a funny and playful man for sure, but he took long covid seriously from the get go and in doing so he took responsibility for himself and his recovery. And he’s an inspiration to all of us.  Anyway, in this conversation we discuss Gez’s background and experience of long covid, how the long covid handbook got written. long covid and mental health, differences in the male vs female experience of long covid, what Gez does now to manage his symptoms, the idea of a holiday cure, and more. Thanks for listening

Hannah  05:57

Nice to meet you. I'll go first. I'm Hannah. I'm used to saying my little spiel that I'm a speech and language therapist, but it doesn't matter. Because yeah, I've had COVID for a few years now. And Katya and I've been friends for a long time, and both ended up with it. And yeah, Katya tipped me off to your book, which I've been listening to on Audible. Also. Yeah, it's been a great experience. I've got Yeah.

Gez  06:27

So you've got used to my voice, the sound of my voice as well as what I've been saying.

Katya  06:34

Yeah, I think it's like, it's kind of surreal when you meet someone whose voice you've been listening to, like, in bed. I, because I've been reading the book in the day. And then listening to it. Like in the bath and in bed. Yeah. So.

Gez  06:50

Oh, yeah. Yeah. Well, it's funny actually. Because I mean, I, my history is in film production. So I used to edit documentaries. And I'd be just going through hours and hours of footage with people who I'd never met. But you'd get to feel like you knew them intimately. You'd cut all this stuff together, and then you meet them in real life, and they don't know who you are. It's like, but I know exactly who you are. You know, it's it's a slightly mad thing, isn't it?

Katya  07:15

Definitely. Yeah. So should we just acknowledge that, like, Hannah, and I have never done an interview before? And

Gez  07:23

that's fine.

Katya  07:24

Yeah. Yeah, I think Hannah, Hannah has a confession as well.

Hannah  07:27

Oh, yeah. Yeah, I'm having a really bad long, COVID day. So I feel like my brain is only really half there, or probably less.

Gez  07:37

If there's two people who understand what that's like, it's probably me and Katya!

Hannah  07:41

So yeah. Katya's gonna be getting me through this next four to five minutes a little bit

Katya  07:46

 Well, you were saying like the chances of three people with long COVID or being bad enough to me and speak feel, you know, yeah, I'm like,

Gez  07:55

it's just mathematics. Right? If the odds of you having a good day is one in three, and then all three of you have got to have a good day. And that's one in three cubed. So that's down to like

Katya  08:05

 one in nine .

Gez  08:06

No one in 27

Katya  08:09

I was a math teacher for four years. I'm blaming that one on Long COVID

Gez  08:14

Definitely do.

Katya  08:15

Yeah. So confident. One in nine! (laughing)

Katya  08:19

Yeah, I'm Katya.  So I work in Finance. But I've had long COVID for a year and a half.

Gez  08:34

Have you been able to work?

Katya  08:35

Yes. But it's been brutal. And I've just gone part time, which is great news.

Gez  08:45

The compromises have to be made. And you either have to give up your entire social life or your entire exercise life or your entire family life or whatever, to be able to just support the work. And even that might still be too much, you know? And even like, how do you care for yourself? How do you get to work? How do you do your shopping and do the washing and do all the rest of that crap, right? That's where it gets. That's where it gets really hard if you're trying to work at the same time. So I honestly I think going part time is a really good thing. And I think you'll start to see the benefits of that soon. Hopefully, just creating a bit more rest space for yourself will make a big difference.

Katya  09:22

Yeah, that really touches me because I sorry, Hannah.

Hannah  09:26

I was gonna say it was a really big deal. Wasn't it for your Katya to actually pluck up the courage and have that difficult conversation with your employers? And yeah, it's really great.

Katya  09:38

Yeah, and explain that, like I needed it to somebody you didn't really know what long COVID was,

Gez  09:44

I was gonna say, how did they take it?

Katya  09:46

Well I mean, they were lovely. That's the thing like most people are lovely once you educate them. So um, yeah,

Gez  09:56

it's still hard to educate people. Oh, you know, I mean, I don't know if it's something you want to talk about in the podcast is how, why does some people get it and other people not get it? Because you can explain until you're blue in the face and some people still just won't get it. Some people intuitively do but some, it's just a lost cause. Yeah.

Hannah  10:13

I don't know why. I don't know why that is. I really don't

10:18

 I think it's just empathy levels. Some people who are not particularly empathetic, aren't very good at putting themselves into other people's shoes. And if they've never been ill, at this level, which most people haven't, it's very hard to imagine it. I find it hard to imagine how bad a really bad day is when I'm on a good day, because my brain kind of blanks it out when I've been...

Hannah  10:36

Totally Yeah, yeah, yeah.

Katya  10:37

I always think that like, for me, personally, it took me over a year, really, I would say to be confidently saying, I have long COVID. And these are my needs. It probably took me four months before I was even thinking, yeah, like, I'm actually ill, I'm not like, I'm not going to be better tomorrow. And so that, I don't know, I definitely have that expectation speaking to other people that if they don't get it in an hour, they're a lost cause. But it took me so long in my own body,

Gez  11:06

I think I think it takes a year to get your head around it. And until that point, you're basically battling it. And you are in this state of bouncing between denial and anger, and a little bit of bargaining in there as well. It's those three primary stages of grief. And it does take a year and some people don't come out of that some people are still it almost three years now we're still there. And I think you do eventually have to come through that before the nervous system can calm down and your body can start to, you know, bumble, its way, hopefully back to some form of homeostasis again. But I think whilst you're in this wound up state of anger and bitterness and fight, it's really hard to let the sympathetic nervous system calm down, which has already gone at, you know, a wall in all of this.

Katya  11:50

Yeah, yeah, that's something I find I noticed I find very hard to watch in other people because I struggled with it myself. I have a friend who has long COVID. And I can see that he has long COVID. But he keeps talking about when the summer comes around, he'll feel better and and watching that stage of denial is so hard because like, I mean, I would never shake him and be like you have long COVID mate. But it's brutal to watch because it was brutal to go through.

Gez  12:21

For what it's worth, he may feel a little better when summer comes round. So seasonality is something that's relatively common in MECFS. And also long COVID. And it's not entirely clear, the wheres and whys of it may be connected to vitamin D levels, and serotonin levels and everything else. But generally speaking, as a group, we will tend to feel a few percentage points better in the summer, or like I've just been away in the Alps for a month, which has done me a world of good, yeah, I can talk about that at length and the reasons why or why not. It may be a good idea for others. But

Hannah  12:56

Well, I think this is perhaps a good segue then for you to introduce, introduce yourself for our listeners. Yeah, I think I want the listeners to get a sense of who you are as a person and not just the voice of Long COVID. So could you kind of speak a little bit about your background. And then what brought you to your experience in the Alps. That would be great.

Gez  13:19

Yeah, so I've got so I mean, depends on where you start, right. I grew up in Manchester. I did A levels of maths, geography, physics, General Studies, went to Oxford studied engineering realized I didn't like engineering very much. It's just really hardcore maths. So I went skiing for two years after I finished my degree, came back started a production company up with a couple of friends filming extreme sports. And that was sort of sort of I got into that, by consequence of having spent a couple of weeks in the Alps. And then I was in the film industry for 20 years, or close to 20 years, and felt very passionately about it worked incredibly hard traveled all around the world and had all sorts of mad, ill advised things that don't meet any health and safety standards whatsoever. But I made a feature film back in 2014. And I was in the process of trying to get my second feature film made. And I was trying to have a couple of projects in development and I was out in LA trying to get those off the ground in 2020 and came back to London in March 2020 and went into the office to meet the rest of my crew I work with freelance now and caught COVID in an office in March 2020 along with 90% of the rest of London.

Gez  14:34

Difference being my acute infection wasn't too bad compared to the others who were having a horrible acute infection sweating through the night and having to be looked after and the rest of it and I was like still doing some work. I'm okay. And and then, okay, so like many of us, I got a little bit better after that acute infection before it suddenly got much worse. And for almost all of us see, we can sort of identify some trigger that preceded that worsening of symptoms that took us down into full blown long COVID usually exertion, but sometimes stress, something like that. Can't quite identify exactly pinpoint what mine was. But I was back trying to run again consistently, and feeling terrible after each of them. And I think that just contributed to falling off the back of the truck.

Gez  15:25

And it was, so for people who don't know me, I got involved in long COVID, it started off with a YouTube film I made in April 2020. And the reason why I made that film was because I had a very ... I had a symptom early on sort of four or five weeks after the initial infection. But I've only felt once before in my life. And that was when I had glandular fever for a year at university 212/0 years ago. And it was the only time I've ever felt this weird feeling in my throat. And, and it was kind of like the signature symptom of that illness where I was wrecked for a year. And I felt it again, like four weeks after getting COVID. And I was like shit. And that suddenly made me take all of it really seriously because I could see into the future, right, that symptom gave me a window into the future.  I was looking down a tunnel of a year or more of illness again, and I thought I can't be dealing with that. But I mean, in a sense, that previous experience gave me that privilege of having that sort of vision into the future. And that's why I started taking the idea of long COVID seriously, really early when everybody else was still going, Oh, I'm just a bit rundown or why am I not... Well, I'm going to get better tomorrow. You know, when I was like, I don't think we are, I think many of us are not going to get better tomorrow or next month or the month after that.

Gez  16:41

So I made this film on YouTube, looked at the science about what we knew about post viral fatigue, other post viral conditions and what we knew about SARS Cov 2, and basically just put it out there thinking does anybody else...? Am I the only one? There are others out there? And turns out yes, tens of thousands of people found the film really quickly. And then I just went down the rabbit hole like Alice, just digging, researching, doing my own patient led research to try and work out, try and find answers to the big questions we all had at the time when the medical establishment had absolutely nothing for us. And ended up making 90 odd 95 films, I think,  now for YouTube, and have also written a book with Professor Danny Altman, who's a professor of immunology at Imperial. And that's been published by Penguin, and it's called the Long COVID Handbook. So that brings us kind of more or less up to date sort of 90 films on, one book later, after sort of COVID sort of ransacked its way through the world in March 2020. And I haven't done any filmmaking apart from the YouTube stuff. So I've not done any of my old job in almost three years now. And that's just because I haven't been up to it. Still, unfortunately.

Katya  17:50

GoshI feel like that was the most succinct pieces of speech we've ever had on the podcast. We normally remove like an hour of silence. I wasn't going to mention this, but I saw After death. I did. Yeah, I love horror. i It's my favorite genre ever. I had to be careful.

Gez  18:11

Did you see that before all this or after you heard of me?

Katya  18:15

Oh, it was after when I was reading the book. I actually had a delay in reading the book because I stopped to watch the film. And the shocks. One of my long COVID symptoms that really gets in the way of my love of horror is that shocks give me nerve pain. Yeah, I don't know.

18:33

I mean, again, horror is unfortunately ....I mean I love horror movies. But they're not ideal for long COVID because there's sympathetic nervous system activating, right, and we're already stuck in this mad state of fight or flight. So if you're watching a horror movie, now you've got to be totally Zen about it. It was weird, right? I went through, you know, I went through  every single horror, every single horror that came out for like 10 years and watched everything. And I got to the point where I was pretty hardened you know?

Gez  19:00

I mean, Hereditary in the cinema had a couple of moments that that got me a little bit. But yeah, it's pretty good. But But generally speaking, nothing. I was pretty jumpscare resistant and nothing really creeped me out. But I watched the Ritual again, again, (we've diverged to Horror here), quite a good horror movie about five years old, and watched it again with my brother whilst I was away recently, and suddenly, it was like I was 10 years old again, because I've been, I haven't watched any horror for three years because I've had long COVID and suddenly my body was like, ah, and it's funny just there's sort of a number of behaviors, which we ended up having to change as a consequence of, of having long COVID. And for me as a as a thrill seeker and and a bit of an adrenaline junkie before, I've had to be really really careful with all of that stuff because it does you no favors at all with long COVID. As much as it might still be fun when you can tolerate it, a crash is only just around the corner as a result.

Katya  20:00

 I've seen your first and your last YouTube videos. And I couldn't believe that the first one is made two months after you realized you aren't getting better. It was so, so quick. And so my first question was going to be how did you do that pivot? But I'm guessing like, you've already answered it, it was your background in documentary making and the experience of illness.

Gez  20:24

Yeah, so and, and it was funny because I was actually just about to start a YouTube channel up anyway. And I was going to be making films about running because I was a very keen runner before. And I was going to... Yeah, I'd already made or shot three or four running films and edited a couple of them, which I was going to put up on the channel. I'd done that whilst I was away in LA, and I was literally just about to upload them when I caught COVID. But then, so I was, I was already sort of tuned into like, uploading the stuff cutting this stuff and putting it up there. And I thought, Well, you know, I'll just, I'll make two or three of these films, and then I'll put the running contents up. But the running content became completely inappropriate for what the channel became. But I was on the cusp of doing something on YouTube anyway, which is why it almost seemed like a natural thing as a way of just putting the word out into the ether to see what came back. Because I could sort of put something on Twitter but I didn't feel like that would have the same connection. And I felt like I actually had something to add or to say about this in that first film. So yeah, I think I was already leaning in that direction. So it was only a mild pivot from making running films to making long COVID content.

Katya  21:30

And that first video is like, I know, we're going to move on to the book, because that's really why you're here. But it's remarkably, it's very clever, I felt like you were very cautious, to be useful and informative. Without I don't know, feeding into any kind of hysteria, I basically, I wish I had found that video at the beginning of my illness.

Gez  21:52

So I've always been really, really careful. And one of the things about the pandemic is big, loud conspiracy voices at either ends of the spectrum. As with all these things, the truth is usually somewhere in the middle but shrouded in cloud. And the real answer to a lot of the questions we've had is, maybe this maybe that, but we don't know. And that's kind of been the reality for most stuff out there. And ultimately, that's good science, good sciences. Could be this could be that, but we don't know, as opposed to definitely this because, especially when something new happens, because we don't have the evidence. So I've always been very, and I come from a scientific background, and I sort of consider myself to be a scientist by leaning as well as education. And I always wanted to try and make sure that my stuff held up. And that people like Danny, for example, would see it at some point and not think I was a crackpot.

Gez  22:53

I was definitely, you know,  there's lots of crackpots, who have ended up earning a lot of money on YouTube during a pandemic. Dr. John Campbell is one of them who started off being relatively well regarded for his takes on medical things, but he's just lent right into the conspiracy theory side of stuff. And now makes millions a year, because of the clicks he gets from sort of funneling some of that sort of stuff. And that was always I was, again, like, one of the things on my channel, I don't know if anyone's ever clocked it, I've never once asked for a subscribe or a like, and I'm probably the only YouTube channel in history to have never asked for a subscribe or a like, because it's not been about, about maximizing the algorithm. It's been about just trying to provide a service and try and be a touch point for people who are on this journey. So that we can go through it together and try and collate our shared experiences, and learn something out of that, that helps each other.

Gez  23:49

 And that was also why the patient led research was so valuable, too. Because people I think realized early that I, they could trust me, I mean that with that data, if you know what I mean, I wasn't going to abuse it, I was simply going to aggregate it, crunch it and see what that told us about the community. And I think a lot of that was incredibly reassuring for people, especially early on, because, you know, early on, we were getting a lot of stuff where people would, you know, there were no tests for COVID and 2020. So you were ill, and then you've got long COVID Or what you thought was long COVID You go and see a doctor, and they'd be like, I don't know what this is. Did you ever have COVID? Well, have an antibody test. If people have antibody tests, it'd be negative and they go, Well, you never had COVID So this isn't what I didn't, we weren't even calling it long COVID cecause doctors didn't start calling it that for a long time. But but you know, so basically says something wrong with you or there's nothing wrong with you, but it wasn't COVID So there's this gaslighting going on as a result of his antibody tests.

Now what was going on there? Why were so many longhaulers saying their antibody tests were negative, so I could collate all of that data. I could collate all of that data. And I could crunch it and I could compare it to other cohorts of people who were asymptomatic, I could find papers online. So I looked at the number of people who were testing positive for antibodies who had had an asymptomatic infection versus those who had cleared it quickly and not developed any long term symptoms, and those who had long COVID. And what we found was that only 22% of people with long COVID were testing positive for antibodies, compared to 50 odd percent of people who cleared it quickly and 80 odd percent of those are asymptomatic. So that would suggest there's something different going on in the immune response to the condition, you know, which is what is as indicator for long COVID, possibly a cause of long COVID. And hey, presto, finally, 18 months, two years later, we've now got papers, published papers in respectable journals going, Oh, look, the antibody responses difference, and long haulser don't produce antibodies in the same way.

 So all of this stuff early on was incredibly validating for people. So they could just say, Yes, only 22% of people do. You're not weird. It's not like you never had it. There's something funny going on here. So whether it was answers like that, or answers about who are the kinds of people who are being affected, because again, the early media was telling us that it was people who were overweight, or old or unwell or any of this sort of stuff who were at risk. And yes, that was the case for acute severe COVID. But the demographic with long Covid was completely different. It was people who were fit and healthy and the primate, their working lives, predominantly female, sometimes with a history of ATP. And this was something again, that's taken a while for the paper to catch up on now. But they are starting to talk about this now, which is the MCAT connection. And ATP is  is eczema, asthma or hay fever, for what it's worth, so if you've got any one of those, you're more likely to suffer from lung COVID. Any history of other postviral conditions, any history of autoimmune conditions in the family, or things like rheumatoid arthritis, all of these things are correlated, but not necessarily, you know, you don't need to have them to get long COVID Anybody can get it. But there's a few little things in there that are suggestive of links, which again, help us understand potentially some of the causality of the condition. So So yeah, so there was a lot that was really powerful early on in terms of having that audience and being able to, I guess part of it my own sense was my own….

People have said to me, why, how were you able to do this whilst you were so ill? ? And therefore you, maybe you weren't that ill? And the other question is, why did you do it, and there are a couple of parts to that, I wasn't able to do any normal work. This was the sort of stuff I could do in the little windows of function that I had during the day. And even shooting those films. I mean, if you watch back, some of the early ones I looked like I died about a week earlier. But those were the days where I felt the best. Maybe one or two days a week, I felt well enough to record a film. And in those days, I really did look good compared to the rest of the week, right? But I could do this work in my own time when I felt up to it. And the reason why I was driven to do it was because we have no control with this condition, right with most other conditions. Like you go okay, like me right now, because I'm gonna broken my wrist. So you break your wrist, you go to the doctor, they put you in a cast, or we do an operation, they give you some painkillers, and they say six weeks to get better, right? That's the prognosis. And that's the treatment. Long COVID. No prognosis, no treatments, probably no diagnosis in the first place. So you're left in this helpless position, where you've got no help coming from the medical establishment.

And the condition itself is so capricious, and so nebulous, almost the way it strips you of your faculties in ways that are perpetually surprising and unexpected. And that condition itself, even gaslights you, you're able to do something one minute, and you're not the next, like your your state of function from, you know, between four o'clock and 4:05, might be wildly different. And not everybody can understand that. And people don't understand that you might struggle to be able to have a phone call, or listen to someone talking at you for five minutes, or you might struggle to read an email. So all of us have different types of cognitive malfunctions, that's the brain fog. But all of this stuff together just stripped you of all of his control. And suddenly you're adrift in your life. You can't do any of the things that you used to enjoy, or even the basic stuff, like eating the food you used to eat, because quickly, you realize that it now massively disagrees with you and makes your symptoms worse. I mean, good luck having a pizza and a beer for me, for example, that would blow me right up. So all of this stuff is stripped from you. And so what can I do? The only thing I could do that gave me some control back over this was trying to attack it head on and say okay, so it wasn't, you know, there was a degree of, oh, here's the brain fog. We're dealing with a altruism. There's a degree of altruism in doing this for the community, but it was also to help myself because it gave me a sense of control over this condition which stripped me of so much control because by I wanted to know these answers to, though I had the power to actually ask these questions. What are the questions that really intrigued me, and they'll probably intrigue other people too. And then I can throw these research questions at the community. And let's see what comes back. So I can't remember what question you asked me, I went on a very circuitous route there …

Katya  30:18

The question I asked was, How did you become so productive so quickly, after becoming ill, and you explained your passion for science, but also your just desire to be active, and to do something even if you can't, you know, hand people a cure on a plate, and I think, the long COVID Handbook as a as a book, and I really recommend to everyone that they read it, because when I read this book, I wept at times, I had to stop reading this book, because the thing that struck me was that feeling of oh, my god, someone has written down my experience. And this makes me feel like I'm not crazy. And I was able to hand it to my parents and say, can you just read this bit, please? Because I think that would explain stuff. And for me, I guess just thank you so much for writing this book. Because I feel that you're incredibly articulate for someone who has, like, if anyone's listening, we will not have edited any of Gez’s speech, because he doesn't repeat or go on to tangents. But yeah, you're incredibly articulate. And now I'm getting lost. But I felt that because you wrote this book, I feel that patients are had, and given the same level of respect as the voice of science, because you co authored this book with the leading expert in long COVID, Danny Altman. And so I just had this huge feeling of being seen. You know, apart from all of the usefulness, I think, the useful tips and the research that you provide, I felt validated, I guess that's the word. And so my question was, how did the book get written? Like, whose idea was it? Did you know, Danny?

Gez  32:21

Well, first of all, I just want to say, thank you for saying that awesome stuff about the book, my primary intention in writing it was to, I didn't want it to be an academic tome. I didn't want it to be to medical, fundamentally, long haulers are in this place out there, where we, as a group and individually are poorly understood. And what we are going through is likely to be one of the hardest if not the hardest period in our lives. And the support that you get during that period, and the people around you can be quite mixed. And because people don't understand just how severe it is, because you might look normal. And in any given five minutes, interaction with somebody, you might seem normal, they can't see that you're in the state that you're really in, they can't see that after that fun interaction, you're gone. And you have to go and lay down for three hours or you have to sleep or whatever it might be. And, you know, like, I don't know if I mentioned in the book, but I managed to break my pelvis in September 2020. And people immediately understood what a broken pelvis was. But I was saying to people, and they were like, Oh, my God, that's awful. How can we do? What can we do, you're in a hospital, all the rest of it. And I was like, this is fine. Like, honestly, break my pelvis, let it heal, and smash it to bits every six weeks and put me back in hospital, I would rather do that than have long COVID. Long. COVID is several orders of magnitude worse than a broken pelvis.

 But because it's invisible, people don't get it. And so the primary thing I wanted with the book was to be able to create something, but even just in its existence, the fact that the book exists, says you know what, this condition is real, the fact that penguin have published it, so this condition is real. That's the first part of it. And the second part of it is that people can read this and know that they're not the only person experiencing this unfathomable shit, which is what it is right? And it's so it's like someone has pulled the rug out from underneath you in such a spectacular way where everything that you thought you knew about your body, and about your life and about your mind and about your health and about your emotions, and about your mood and about your mental health. All of that is suddenly exploded, and all the rules that you thought you used to understand about how these things worked and suddenly gone. And I what I really wanted to try and do in the book was to say, this has happened, not the only one. And these are, you know, maybe some of the little things that you can do, but fundamentally just being able to say you're not the only one who's gone through this and to describe those experiences. credibly powerful because there isn't anywhere else anywhere that has done that this is a. I mean, yes, there are people with ME CFS and other post world conditions, but particularly with lung COVID, there's, you know, there just isn't that level of emotional support out there. And I guess what I'm trying to say is yes, the book is full of facts, but it's I, I really wanted it to be about emotional support. And that's why there are two chapters in there, essentially, about mental health. Because it's such a huge part of the experience.

Hannah  35:30

I think that that was something I was going to bring up was that I, for me, the chapter on mental health was particularly helpful to read. And I think what made me feel instantly relieved, was you went straight in with mental health has not caused your long COVID. And like it, just to hear you say that because I constantly have to try and remind myself that that's not the case. And I can't I'm very afraid of stigma, that people will think like, oh, Hannah, you, you know, you're an anxious person. So you've kind of, you know, given yourself long COVID through your anxiety. It was a huge relief to hear you say that so clearly, but then have a whole chapter about it as Well. I was like, Yes, I remember like, at that time listening to it be like, Oh, I wish I I wish I'd had this chapter to listen to like, in the really early days. So I think if anyone is in a very early journey with long COVID, or has just found out that a friend of theirs, had got long COVID, I would be handed over that chapter for them to listen to straightaway.

Gez  36:35

Funnily enough, the third film I made, so probably, you know, still back in April, May 2020, was about mental health. Because early on, I sort of saw just how crushing this was, and how, how much of a massive issue it was. And I think it's, yes, obviously, your anxiety, any pre existing anxiety, depression or mental health issues do not cause long COVID. But long COVID itself, physiologically, destroys and disrupts your serotonin levels, and all sorts of parts of the rest of your physiology, your metabolism and your rest of your chemistry, which directly leads to as well as your sympathetic nervous system activated, which leads to anxiety, right, so the condition itself has a physiological impact on your mental health and anxiety levels, as Well as the secondary effect of it having basically turned your life upside down and removed, every tiny little thing that previously contributed to your quality of life has now been sort of set on fire. So you know, there's multiple different angles, that the condition impacts on mental health. And I think having a handle on that side of your own mental health is a precursor to being able to get better to some degree. Because what I would also say as someone who's previously suffered from depression, fairly severe depression before long COVID Is that that's the only other thing I've experienced in my life that comes close to being as bad as long COVID. And if you're, if you're in a really bad place like that, it's very, it almost doesn't matter how bad your physical health is, because your mental health is so overwhelmingly, you know, when you're when you're very deep underwater, I talked about this a little bit in the book, it's so almost the first thing that you have to try and do is to sort of get yourself into a slightly better place so that you're actually able to do the right things you can for your physical recovery to I do want to answer your previous question. Katya, sorry. There was a massive like eight minute tangent.

Katya  38:33

I just have to piggyback on that. Because I actually think that the book is worth reading for the party boat metaphor for depression. I think you don't even have to have long COVID For that metaphor to be useful,

Hannah  38:48

or even have depression. Sorry for it to be useful. Like, I don't have depression, but I was like, wow, yeah, I really relate to that as in what long COVID did to me it sort of really pulled away my dinghy or whatever.

Gez  39:03

Yeah, yeah. Thank you. Is it worth me briefly describing the party boat metaphor for?

Katya  39:09

Yeah, and then I will let you go back to how you met Danny

Hannah  39:14

Yeah.

Gez  39:18

So I, so this is I had, this is about 2017. I'd been I'd never had any mental health issues before until this point. And in 2017, a bunch of different points of my life suddenly got really complicated. And they say that there are a few separate pillars that hold your life up. You've got your health, your family, your profession, your relationships. And when more than one or two of these pillars suddenly come under pressure at the same time, this is when suddenly things can come crumbling down and they did for me, my mother died early in the year, I was in a relationship that wasn't working. Let me just. I'll just say that and my profession was suddenly you know, my, my professional career was falling over as well, there's a bunch of stuff that was happening. And the upshot of it was that I fell into a depression, it took me a long time to identify it. And I've always been someone who saw, sees things in metaphors. And quite quickly, I sort of had this picture for where I was.

And I realized that everybody else who's in the world going about doing their daily business, walking down the streets, or in a nightclub, or in the office, wherever they are, let's assume that they are not also having mental health issues. And remember, they will do, of course, but this is your perception as someone who's previously not had them. And you previously think that everybody else is in that fine place, too. But they're all there. And they're all having a wonderful time going about their daily business. And that place in daily business is something I call the party boat, which is, you know, one of these sort of cruises where everybody's sort of standing on the top deck, and the music's blaring, we're all sort of drinking booze people are, you know, mucking about all the rest of it. And I'd fallen off this party boat when I'd got depression. And I suddenly saw the rest of the world from a distance.

A sort of a concrete example of this is going to, I was in a ski resort with a couple of friends. And the town square had been taken over by a couple of DJs, who were doing like a DJ off thing. And the whole, everybody was having a wicked time, there was beer flying in the air, and the music was pumping. It was awesome. And I just looked at this, and it just felt to me, like everybody, I could see there was an alien. I couldn't compute what they were all doing, and why I was like, this makes no sense. Why are they all here? Why don't they just go home to bed, you know, so I was looking at the behavior of normal people. And it just seems incalculable to me. But yet, at any point in the rest of my life, that's where I'd have been. Anyway. So here I was, then in the metaphor, bobbing away at some distance away from the party boat, and you can hear the music and you see them all doing it. And you can sort of vaguely remember what it's like, but it's very, very separate. And then as things get worse, you sort of start to sink below the water. And as you start to sink below the water, the music becomes a bit more muffled, you can't quite see the daylight anymore. And as you sink further and further down, you can't even remember what it feels like to be on that boat, you can't see it, you can't hear it, it's just gone. And as you think further and further down, the light starts to disappear, too. And this is at the point when it gets really bad. And for me, this was a point of sort of suicidal ideation. And I think one of the other things, there are different types of depression, some people have a sense of nothingness.

 For me, I didn't get the sort of the nothingness or the sort of the catatonic kind of depression. For me, it was a huge amount of pain, like really physical pain. And this is something I hadn't considered was part of, sort of mental health before was actually a physical manifestation of pain. And it also helped me understand self harm as well, because I previously had not really understood self harm. But now I was self harming, I was punching myself in the face. And the rest of the time, I was like, I was either biting myself or trying to tell his tension type of behaviors. And the answer was, is that by creating some pain somewhere else in my body, it relieved the really deep internal pain I was feeling elsewhere. By creating that controllable pain, you take the focus away from the pain that you can't control. So that's when things are really bad.

And, you know, eventually I managed to sort of resolve a few things in my life, the grief around loss, my mother's, I still have sort of therapists and types of help to deal with some of that. And I sort of got back up to the surface and managed to build myself sort of what I called a dinghy. And this was a dinghy where I felt like I could stay mostly dry. But I was still wasn't really on the party boats, I was still at a bit of a distance. And sometimes you can sort of roll the dinghy in the direction you want to go, you're not just adrift in life, you thinking, Oh, okay, and I've got a purpose, I can go somewhere here. But occasionally, a big wave will come and it'll knock you out of the dinghy, and you'll be back in the water again. And, you know, I was in that dinghy when long COVID hits.

And that was kind of like a bit of a tidal wave, really, that basically just projected me out that dinghy back into the water again, and suddenly gave me a huge new set of issues to deal with. And I think one of the one of the things about sort of the metaphor for me was just this sense of how the people on the boat can't really see that you're there. You know, they don't necessarily notice that you're down there in the water. And you know, there is no shouts of man overboard from the boats. You're just out there, and you're feeling a long, long way away from the rest of the world. And, yeah, your ability to manage all sorts of waves of life is compromised, you know, the people on the boat waves will hit the boat, the boats fine. But for you, you know, when a wave hits you, suddenly, you know, you're gasping for air, water's going down your mouth and the rest of it and that's, you know, that's something I think that is very relevant to long COVID. Because when you're in this state of sort of fight or flight, it doesn't take much in the way of emotional stresses for it to really throw you overboard and make things much much worse. You know, our tolerance for those kinds of emotional stresses, let alone the physical stresses is much, much more … so we have to be careful about the kinds of places people, situations, experiences we expose ourselves to because we may not be as resilient as we were before. Yeah.

Katya  45:14

I'm, I'm so glad that… I was going to try and summarize the party by metaphor. Thank you so much for explaining that. One of the things Hannah and I discussed earlier was how refreshing it was to  hear a man talking about long covid and mental health because you know, my experience of long COVID is of it as a female condition.  A lot of the people I know who suffer from long COVID are female, the only one person who I really love who has it is Hannah, who is female. You know, in the book, you you give a whole chapter on, on gender bias. I'm not sure where I'm going with this, Hannah, can you

Hannah  46:11

I think like, ya know, the chapter on gender bias is great, like hearing a male voice talking about the the experiences that women go through. It's really great. I loved it.

Gez  46:27

I couldn't just talk from my own experience, clearly. Yeah.

Hannah  46:32

How did you prepare for that chapter?

Gez  46:34

I had a lot of interviews, a lot of interviews, to make sure that I could do it justice, I can only be partially aware of some of the issues that women face, I had to do a lot of research because you only find this stuff out by talking to women, because these aren't always things that are often talked about, you know, a lot of the sort of the sort of, I say the micro biases, but they add up, right? It's a cumulative thing that has a massive, cumulative effect. And yeah, so the answer was ultimately lots of research and talking to lots of people who were very, very good about it. And I think it's perfect. Obviously, the reason why it's in the book is because it's of particular relevance to chronic illness. And, you know, especially when we've got, you know, this sort of this sort of history of the idea of women being hysterical, and the rest of it, it's very easy to sort of layer that on to Well, it's all in your head, or it's anxiety, all the rest of it. And that's why women get it more than men. No, no, the reason why women get it more than men is is a probability of some autoimmune components, because women have different immune systems than men. And that's a that's a bit of research that we're digging into a little bit more at the moment, actually, Danny's team at Imperial, looking into that more at the moment about how, what we can learn from hormonal cycles for women, and autoimmune patterns as Well. And what that might tell us about the condition.

Hannah  47:56

From your experience of speaking to men, do you feel like there are things about the experience of having long COVID that are more challenging for men, or things that are perhaps brought up more often in men talking about long COVID?

Gez  48:10

So if there is a challenge with the male experience of long COVID, it is a reflection of our inability to talk about shit, especially feelings. And like, so the psychological side of it, I think men are particularly poorly equipped to deal with. And this is through. A lot of us having grown up in environments where it's not okay to talk about feelings, it's not okay to say that you're hurt, it's not okay to say that you're upset, it's not okay to say bla, bla, bla, bla bla. And a lot of this leads to a lot of internalization, which is destructive. So I think women, you know, without wanting to sort of say, you know, men are from Mars, Women are from Venus, and all the rest of that sort of stuff. I think, if there is a difference, I think women are more equipped and more experienced at talking about difficult sides of experiences than men, I think sometimes, and you are perhaps more likely to lean on each other than men are men and not very good at talking to each other about feelings or giving each other emotional support. A lot of us don't know how to do it. And so I would say that's one of the, one of the sort of the greater difficulties, I think, and I get, you know, I get men contact me on social media with their stories, and what's really apparent is how, how they're desperate just to try and talk to somebody who gets the softer side of it. Because actually, even I mean, my most of my male friends are pretty empathetic, but they struggle with the softer side of it, too. And when I say the softer side of it, I mean, you know, not just the I have x symptom, but this is what it's done to my life and this is how I feel about myself. And this is all the rest of it, because all of those factors are huge in long COVID It's not just I've got a rash. It's, you know, it's

Katya  50:03

my world is falling apart. Yeah,

Gez  50:05

absolutely. Yeah. Yeah,

Hannah  50:07

yeah. Katya, did you want to take Gez back to that question?

Katya  50:12

We definitely have to ask the first question on our list. I'm just conscious of time. We all have long COVID. Gez, how are you?

Gez  50:20

I'm fine. So  ifyou guys are okay. If you're if you're not if you're, you know, just drop Hannah. I was gonna say, if you want to, if you want to pause and we can pick it up later or tomorrow. If you feel that you want to split this into two or whatever, I'm just throwing it out there. Very happy to chat more. So subject to your own health needs everything else.

Hannah  50:41

I'm okay. I think I just need to take a minute.

Katya  50:43

Should we take five?

Gez  50:45

Yeah, let's take five. Clean five.

Katya  50:51

We do this very time. I normally lie down right there.

Gez  50:55

Yeah, good. Don't. Don't look at your phone. Just five minutes breathing with your eyes shut. Alright, five minutes. Okay, cool. See you in five.

Jingle/Break

Katya  51:03

Yeah, I'm sorry. I'm eating an orange.

Gez  51:11

Right. I'm having a holes. Throat sweet. I'll take it out before I start talking. So yeah, but Mike doesn't just get rattle rattle rattle a bit in my mouth.

Katya  51:21

Like what is this strange speech impediment?

Gez  51:24

Yeah, some monster new symptom. Yeah.

Hannah  51:28

Katya, your, your face is just like been frozen in this particular position on my screen for ages. I feel really unresponsive to just say that. You're just stuck it. No, she's fine.

Katya  51:42

Am I still not moving?

Gez  51:44

She's moving on mine.

Hannah  51:45

Yeah, you're just not moving on mine. It's, it's on my end. I'm just going to refresh on the page. But that should be alright. Yeah. I'm just scared of don't

Katya  51:53

press refresh,

Hannah  51:54

because, okay. All right.

Katya  51:56

Well, just because I know Yeah. Yeah, it's okay. I'll just I'll read you Hanna. Gez, you should know that we actually had to rerecord the first episode of the podcast, because Hannah froze for me. And so we had this deeply unnatural conversation. Because Hannah froze. Yeah. And so I sat sideways like this because it was too unbearable. (laughing) Yeah, so we should we should we go back to the very beginning, then? Sure. Yes. So Gez, we love the book. How did it get written? Did you already know, Danny? Like whose idea was it?

Gez  52:35

So it was actually another long haulers idea who Kate Weinberg who is an author, but she also has been suffering from long COVID. And I met her and we were chatting about it. And she was aware of some of the work I've been doing on YouTube and the research and everything else. And she said, you know, jazz, you should write a book, you should write the long COVID Handbook. I haven't. So I have to give Kate full credit for this. Because it was her who put the idea into my head. And immediately, I was like, yes, yes, I should, because there is this problem at the moment, which is that everything that has been learned about long COVID is in, you know, 1000 10,000 different places spread all over the world and the internet. And if you have long COVID, where on earth do you go? Where on earth do you start? And a book can solve all of that. So immediately, I thought this is a great idea. So I wrote a I wrote a pitch document for it. Then went to some agents with it. And roundabout it took a little while actually. And it was in the end, the agency that took me on came through a random friend of mine in the classic car scene, who I met with Ace Cafe, which is a bit of a place in North London for the classic car scene. And I ended up I don't like when I meet friends I haven't seen in a long time. I don't like talking about long. COVID too much because I don't know, I just find like, it's kind of boring to people who don't have it. Right. Unless they're for some reason particularly interested in it.

Katya  54:14

Yeah, I can't Yeah, yeah.

Gez  54:16

So I so anyway, but I started chatting about this, and then mentioned that I had this idea for a book and my friends partner was like, Oh, Well, I You should send that to me because I work at an agency, you know, so a literary agency. So I sent that in to them. And they thought it was fantastic and took me on and then said, Okay, so we're gonna go out to publishers, but we need to probably pair you with someone medical, because it won't necessarily get picked up unless it's got that weight of a doctor or a professor or something on the front. So I had a thought and I went, who would be the best person I can possibly think of, to speak to, in particular the duality of the landscape at the moment when I say do you allottee I mean, long COVID has been sort of characterized by this patient drive early on in the condition, we named it, we researched it, we diagnosed it, we did everything. And we were well ahead of the medical establishment because the medical establishment by its very nature moves slowly. But as time goes on, we are going to rely on the medical establishment to find solutions and do the blood work and to do all the rest of you know the analysis that we need to work out what the hell's going on, and how we treat it. So who was the best person to, to represent that side of the coin, and there was one particularly outspoken voice, who was bloody brilliant, and who I'd previously spoken to on the channel.

And that was Danny. He's a professor of immunology, who has a particular interest and expertise in post viral conditions from all over the world before COVID. And was very much on board with I say, the cause, but you know, the reality of what was going on rather than trying to diminish it, or whatever he was out there early doors, saying this is going to be a real problem. So he was that he was absolutely top of the list. I called him up and said, Would you like to do this with me? And he was like, Yes, I think I would. So I took that is I was very flattered, actually, that he would consider coming on board with me, because his reputations on the line too, right? He's got, you know, he's been an academic, and medical environment for decades. And all of that is on the line, because if he, a piece of work goes out, that doesn't hold up to scrutiny amongst the very top level of academic scrutiny that he's surrounded with, he would lose reputation. So I was Yeah, I was very, over the moon, really, that Danny chose to come on board. And I think it has, I was initially actually one of the discussions we had with publishers, when we went out to publishers to talk about it. Some of them wanted to make it a single voice, the book, and we were adamant from the start, that it couldn't and shouldn't be that no matter how abnormal that might be for this kind of book, because fundamentally, those two perspectives are so different the patients and the clinician slash academic slash researcher, that the patient that professor, let's say, you know, they are so different when it comes to long COVID. And they come at the problem from such different places. And the tension between those two positions is one of the primary experiences of anybody who's suffering from long COVID. Because it comes down to the question of why can't I go to my doctor and get a pill for this? And that tension between the two, that question just draws the tension between the two? And the answer to that? I'm the one who asks that question. There's a patient and Danny has the answer is the professor, right. So being able to come at this problem from both sides and take and give the reader listener an insight into what it's going to take to move our understanding on from those two positions, I think was really powerful.

 And, and Penguin were, you know, absolutely on board with the style that we wanted to write the book in. And we've been incredibly supportive. I couldn't have hoped for a better publisher, we actually had a bit of a bidding war for the book, which was a novel experience for me having come from a world of screenplays, where, you know, there's like one screenplay a year written by Quentin Tarantino that gets a bidding war, everybody else that you're just out there in the wasteland hoping to get one option, you know, so to actually, to actually, suddenly, in a world I never chose to be in that have long COVID. So actually have a bidding war was quite quite novel. But yeah, so So that's how it came about.

Katya  58:26

It feels almost like, like you have inadvertently done like a public safety act as a result of this book, because I feel like, I'm on Twitter a lot these days. And I see a lot of ideas. And what your book seems to do is you have all of those ideas there. Like you haven't, you know, a very long list of things that people have tried and, and then you have your voice, which to me feels like the voice of enthusiasm, sometimes the desperation of someone who is desperately ill. And then you have Danny. And I actually love the difference between your voices on the audio book, right? Because Danny is from a much more kind of, I don't know how to say like, not low energy, but his voice is.. Hannah maybe you know you're a speech therapist.

Hannah  59:14

Very measured. Yeah,. The thing is, I think I think both of you are measured. I was gonna say, even though Gez, you're talking from personal experience a lot of the time like, you are still careful with your wording in the way that you were saying you had to be with the YouTube videos, which I think is what means that the book is going to be able to like stand the test of time because you Yeah, you know, you've you've still got, you still thought very carefully about what you're saying in your sections. But yeah, it's so clearly the voice of the patient, the voice of the doctor, and I think those two voices, and then hearing them in my ear as Well. I thought that was a really interesting experience as a listener. So I'm really glad that you stood your ground and said you wanted to keep it as two separate voices. I think it worked really Well. I like you.

Katya  1:00:01

I also think you get that sense of trust. Because I'm not just hearing one person's idea. It's everything just as is before Danny. So you can't be like, in my dream, I saw an angel who told me to try sunflower oil. It's like it has. Danny has read and has read all of this.

Hannah  1:00:23

So yeah,

Gez  1:00:24

So speaking of that, the chapter that was the most difficult for Danny was the treatment chapter because fundamentally the only stuff which he can really put what they put his name to, but associate himself with stuff that comes out of high powered RCTs, because that's the gold standard for science, right. And we have none of that, in long COVID. What we have is a bunch of anecdotal stories about people trying all sorts of mad shit, you know, and after recess, for example, is something that I chose to not even talk about in the book for a few weeks. Sorry. So apheresis, is, it's a form of blood filtering. That's been done out in Germany, it's a clinic. It's called apheresis, it's a 37/38 year old treatment. And that's how long it's been around for. And it's designed to basically help people who have critically high cholesterol levels, and it takes your blood volume out all of your blood volume out like four times and something comes out one arm goes back in the other goes to the machine, filters out all the fibrin, which is sort of clotting agents and a bunch of other stuff and a cholesterol and puts it back in again. Now, people were feeling some people were doing very Well with long COVID after this treatment. And you know, and it seemed to fit into this narrative of what maybe micro clots are a large part of this puzzle. And if this machine is filtering out the micro clots and putting the blood back in again, then great.

 However, the treatment is quite controversial, because A it's expensive, you'll go through several rounds of his treatments, costing 500 /1000 euros. It's It's invasive, you know, you're getting very big needles put into your arms. The risks aren't necessarily high, but it's expensive. And it's invasive. And we didn't have any evidence for it beyond the anecdotal. And so as soon as there's something which is expensive, invasive, and comes with a perceived level of risk, but only has anecdotal stuff, even by just writing its name in the book, I'm giving it Yeah, ways. And that's a big problem for Danny, too, because his name is still on the front of the book that's talking about this stuff. So we have to be quite careful about the kinds of things that we talked about. And also, you know, even in terms of, you know, unless you're in academic circles, you may not perceive the difference in kudos  isn't quite the right word. But the difference between the very top academic journals, and the ones that sort of skirt around the bottom in terms of the standards of evidence that they demand from the studies that they publish, and the way they are perceived by the rest of the community. So when you've got something that's published in Nature, that stands for a lot more than in the Journal of Bob, and Sally, you know, somewhere, so and so when we've got a lot of our evidence, and people are maybe jumping on a study on Twitter going, Wow, look at this. It's been published, but it might be in a journal that doesn't really what's the peer review? Like? Has it really been looked at properly? Is it full of holes and the rest of it, and again, we've got to be careful about talking about stuff like that.

And even the microclimate stuff, because the microclotting stuff is still by no means widely accepted in the community, in the medical community in the academic community, because it hasn't been published, it hasn't been replicated by multiple studies and published in top journals. So it's still out there is a theory, very much a theory as opposed to an accepted sorts of facts or, you know, pathology. So this is sort of the very slow nature by which this stuff moves on. And it's frustrating as hell as a patient. And that's another reason why, you know, we need to have two voices, one saying, I get how frustrating this isn't Danny, who says, This is why it moves at the glacial pace that it does, and this is how I think it might be possibly able to be speed sped up. But if you speed it up, then do you compromise the science? And that's the thing, right? So it's hard.

Katya  1:04:08

Yeah, I feel like I'm something that I actually ended up with, towards the end of the book is a renewed sense of faith, that that stuff is being done that I think, I didn't know this before reading the book, but it's like over a billion dollars has already been invested in long COVID research. And by the end of this book, I felt quite reassured, I felt comforted.

Gez  1:04:34

So So it's interesting. There's been a few different takes about where we leave readers/ listeners with the book by the end of it, because we can't say we're going to have the cure by next February, you know, and there'll be a magic pill that sorts it all out, because we don't have a magic pill for MECFS yet, you know, we don't have a magic pill for post Ebola. And when you look at people who had SARS one yeah, they're not doing great. If so, you can look at all of that stuff and go. But you can also say, Well, yes, but the research into long cave is happening at an unprecedented rate with an unprecedented number of pens, machines, microscopes and eyeballs all over it. And so there is very good grounds for thinking we're going to make progress and level that's not been seen before. If you asked me where I personally think we'll be in, let's say, two or three years, I think we'll have two or three treatments that help. And when I say help, I don't just mean symptomatic relief, which is what everything is, at the moment, rarely, plus or minus, I mean, actually help calm down the causes of the symptoms. I don't know that we're going to get a magic bullet in the next five years, and we may never get the magic bullet. But are we likely to get treatments that dramatically improve quality of life? For those of us who are suffering? I think so. Yes. But do I also think there's stuff that we can do in our own lives right now that help us make equal or greater gains without any pharmacological intervention? Absolutely. Yes. as Well.

Katya  1:06:08

That was the question we had. Just where we are at right now then, what do you do dad to manage your long COVID?

Gez  1:06:16

A big sigh there? Yeah, there's a bunch of stuff I take that helps me manage some of the symptoms. So I'm on antihistamines, h1 h2 blockers. I'm quite MCASS-y, I react to food quite a lot. I come out in rashes. Hard for me to identify how much of my headaches and other stuff is MCAS versus anything else. But some so antihistamines, I'm on a very low dose of an antidepressant, I'm on a very low dose of another one  to help me sleep. And I'm on a fairly hefty dose of melatonin about 10 milligrams to help me sleep. Again, disrupted sleep super, super, super common in long COVID. And super, super, super important. But okay, so there's two primary things, I think that are predictors of whether you're going to have a bad day, or a good day, the day after today, right? The first of them is how much you've done today. Is today a rest day or is today full on? And that's obviously inversely proportional, inversely related to whether tomorrow is good if you rested day, tomorrow is likely to be better than average, if you've rested more than average today. And vice versa, if you've done too much. And the second is, can you get a good night's sleep, particularly with going to bed early and getting some good deep sleep? Those nights are often highly correlated with having a decent day afterwards. And again, unrefreshing sleep is one of the in fact diagnosis factors for MECFS. And it's the same in long COVID. Why? Well, again, nervous system is probably highly implicated here, as Well as things like serotonin levels, and HPA axis, which is what our cortisol levels are doing. And by nervous system, I just mean that we're not shutting down into parasympathetic, and our body isn't able to sleep well, because we're still in this agitated state on a nervous system level. So anything that you can do to calm the nervous system down in the evening.

Gez  1:08:15

So this means not working, if you possibly can you knock off the work as early as possible, eat as early as possible as well, like, try and get your dinner times early. Because one of the things that eating does, I'm on all sorts of tangents here. But I will come back on top on talking about promise. Fasting is a massive thing where people are all over Yes, fasting makes me feel better. And is it all because of autophagy? No, probably not. Autophagy takes four days of not eating. And autophagy is the process by which the cells break themselves down and clear themselves out, which happens when you fast. The reason why people feeling better when they fast is because eating triggers the sympathetic nervous system initially, which raises the heart rates, you have to digest all the food. And if you're already on the sort of the redline of that, then eating will often make you feel worse in the following hour or two, or in the hours after that it will elevate your fight or flight responses. So by not eating, the reason why these fasters are feeling better is because their nervous system is just remaining at a  calmer level. That's my theory about that whole school of thought.

Katya  1:09:15

That's so interesting. I'm sorry to interrupt you, but I don't at the moment, because I've recently massively gotten into chocolate, butthere was a period when I was super enthusiastic about getting over my long COVID where I ate in a 10 hour window and then I would not eat for you know for the rest of the day and have more energy I know I did. So it's interesting to hear you....

Gez  1:09:43

Careful with that chocolate as much as I love chocolate too careful because that sugar will also just set things off. If you've got a heartrate monitor on your watch. Just see what your heart rates doing at rest in the half hour before you have a meal. And let's say an hour after you've had that meal and an equal level of rest again I guarantee you your heart rate is going to be 10 BPM higher. And so that's one of the reasons. So that's also why you want to eat early, so the body can calm down for sleep, because your deep sleep happens early in the night, and we're not getting enough deep sleep in long COVID. So you want to give yourself the opportunity to get  as much deep sleep as possible. So that's one of the things I do, try and eat early, go to bed early and try and just calm everything down before bed.

Gez  1:10:23

The other thing I have been doing recently, which I find incredibly helpful are Suzy Bolts classes, now, you could loosely call them Yoga. But yoga, not in the sense that you think of in terms of being physically demanding mostly breathwork, meditation, some very gentle reclining movements. Fundamentally, this is an opportunity to dedicate time in your day to calming down the nervous system. And this, I think, is absolutely, this is a huge part of pacing, full stop. But I also think it's a precursor to recovery. Because until we can calm down the nervous system, we, you know, the body is caught in that vicious cycle, that loop that is self sustaining. Of inflammation of you know, T cell activation of all the mad shit that's going on platelet hyper activation, all of this stuff, it's all part of the same system that we have to somehow interrupt.

Gez  1:11:16

So how do we do that? Well, the first place to start is calming down the nervous system. And for me, this has had a secondary effect or benefits or purpose, and that is emotional purging. So I have found myself crying a lot during the sessions. And sometimes I don't take part in the session much. And then my camera's off. And I'll just cry for 10/20 minutes. And this stuff is guttural, it's coming out from the body. And it's just ancient trauma, some of it from when I was four years old, some of it from when I was 35 years old. But again, all of this stuff, which in my opinion, we carry with us, and it contributes to the functioning of our nervous system. And even just on a simple N equals one, I feel a hell of a lot calmer after that, and if one of those big emotional stress or waves hits me, after I've just done all of that, I'm way better at dealing with it, I can take it well in my stride before as opposed to getting overwhelmed.

Katya  1:12:14

I completely agree with you reading the book, you actually inspired me because I, I've always done meditation and breathing exercises, but I just did them once a day. Reading the book, I was like, I should be doing this every couple of hours. And I started doing that. And it it gives me back time time when I would have been foggy and fatigued, I got an extra 40 minutes from an hour. If I do 10 minutes of non sleep deep rest.

Gez  1:12:42

Yeah. Again, this is part of pacing. Pacing isn't just sort of doing... Well. It's all sorts of parts of pacing, doing less doing differently in the rest of it. And when you do the rest, you can actually it's just stopping and lying there is great, just do that. But if you can actually build in like you say non sleep deep, deep rest, where you're actively actually trying to calm things down by controlling the breath, or even just following a 10 minute guided thing or just using a little pattern of breath to keep you know, breathing app has got a really nice little inhale, exhale, time thing, whatever it is, that makes a significant difference. And as you say, gives you the clarity back, I find it's almost like after 45 minutes or 50 minutes on a zoom call, for example, I can feel my cognitive ability to process verbal information, just that just gets cloudy and foggy. And I can't work out what to say. And I can't tell what people are saying to me. I can go off and have 10, 15, 20 minutes. And then Oh look. But fog has cleared again. And I think we ought to be doing that all the way through all our days, subjects who are level and where we're at. Because as you say it gives you time back because you're not spending three quarters of your day foggy if you actually break it up and do 10 minutes every hour, then suddenly, actually three quarters of your day is not foggy. Really important.

Hannah  1:14:01

Katya and I talked a little bit about, about this in I think our first episode and we kind of found it quite nice activity where we talked about what had changed for the better in our lives since getting long. COVID. And if we felt that anything positive, come out of it for us. So we wanted to put that question to you.

Gez  1:14:22

So yeah, I think so. I think there were patterns in my life that weren't healthy, that I perpetuated and got away with because I could and I am now faced... Well I have now been faced with those behaviors and patterns and realized that they don't serve me and anymore and I can't get away with doing them. And this is you know it's about actually the importance of taking stock of where you are at any one given but little things right it's all this sort of meditative yogi New Age stuff, but actually there is something to it sometimes. And that is like, if you just live your life at 100 miles an hour, and you don't ever stop, and you're in this perpetual state of go go go, how much are you ever really appreciating the things you have right now. And I think one of the things that long COVID has given me is an ability to really appreciate the little things that previously were just part of my, like, you know, rocket paced, whirly gig type behavior. Whereas now I really appreciate the fact that, at this stage of my recovery, I am now able to have a coffee and a half in the morning. And I couldn't do that for a year and a half, two years, because I reacted so strongly to it. But now I can, and I can really enjoy that coffee. And it's a really important part of my day that I'm, I'm already looking forward to it now. And it's like, I'm looking forward to it.

Katya  1:15:52

What was it you said about sleep?

Gez  1:15:53

Yeah, yeah. Yeah,

Katya  1:15:55

I know, I'm kidding.

Gez  1:15:56

But it's, yeah, so it's those sorts of little things that I really appreciate the little things that I can do, which previously I took for granted. And now I'm hugely appreciative of that little stuff. And from having spoken to a lot of long haulers, this is I think this is quite common that we do sort of learn to re-appreciate the little things. Because A, sometimes we can't do the big things. So you have to appreciate something. But also, you realize that some of these little things really have meaning.

Gez  1:16:28

So I mean, I last year, I made a film that was a bit controversial in the community where I went on this inverted commas ski trip, what I would say it was a an active convalescence in a healthy environment. And I've just recently got back from having gone out again for another few weeks. But I can talk at length about why I think this is helpful and how you can maybe do your own version of it. But the moment I got back on skis after a year of basically having been able to do no exercise at all, of any kind. And I just found myself just whooshing down the slope, and just rocking the edges to one side and carving round. And I was just like, I was so happy for that simple pleasure of nature and activity and environment and feeling like I could actually use my body in a simple way that was inverted commas active. And that's probably one of the most enjoyable 30 seconds of skiing I've ever had in my life. And I've been skiing since I was four. And it was doing nothing, it was on a blue slope into a lift, and it didn't matter. I was I was free and I was alive. And I was all of these things. And I was appreciating that in such an intense way, by virtue of its of how of appreciating how special it was and how lucky and privileged I was to be able to do that.

Gez  1:17:49

And I think a lot of that sort of luck and privilege I had maybe taken for granted about the things I the way I live my life before. And now I hope I don't. I mean, in the grand scheme of things. I mean, if you do a pros and cons list, I mean, I think you know, long COVID does add more to one than the other. But I think we all should be able to try and identify some in the pro column. And I think it's essential that we do because I think one of the things to go back to what we were talking about at the start that first year have long COVID, which is full of denial, anger, bargaining. Once you get past that, I think you get to the place where you can recover from, which is to understand that the future won't be the same as the past. And we can't try trying to go back to who we were before, this isn't going to work for the majority of us. But for some of us, you get better after three months, you know, who have relatively speaking short, Long COVID, they probably can get back. But once you've been a year or more, I think we're going to be a different person on the other side of this than they were before. And our lives will be different, even if we're just as capable. And we're 100% and the rest of it.

Gez  1:19:00

 I think we will have a level of insight into ourselves and the world around us and the people around us and what's important that we never had before. And if maybe we're not quite at 100, maybe we are a new version of ourselves. Where are there are some things that we used to do we can't do now. Am I ever likely to run a sub three marathon again, I ever like to run any kind of Marathon again? Am I ever likely to go have 10, you know, 10 pints and a night on the piss? No, I think these things are gone now forever. And that's okay. My life can be about other things. I don't need to go back to that person. You know, the person I'm going to be in the future is going to be somebody different and that's okay, that person can be happy too. And it's an opportunity to do new things and to live in a new way that is invigorating and meaningful in all sorts of ways that I haven't fully worked out yet. And I think that is going to be the case for a lot of us I think and and to get ourselves into a mindset where we're looking forward to that future, rather than kind of rather than being stuck in I'm going to be ill forever look forward to that new future that's different. And I think once we can get ourselves into that mindset, again, that's a really positive place to be in terms of nervous system impact, let alone anything else.

Katya  1:20:14

I actually loved I loved that you mentioned the skiing holiday, I think we should be very clear if anyone's listening Gez's skiing holiday was not what you would think it was like you like... things I really resonate with not speaking on the ski lifts because you need to save energy, 30 seconds and then stopping it, it was not a ski holiday, you, you, you took your long COVID body into a ski holiday environment, and paced in that environment. But I listened to that. And I thought, I used to love swimming. And maybe like, once I'm part time, I'm going to take mum to a spa. And I'll be somewhere I can rest all day, and then go up and down a pool for a bit. And I just know from experience of holidays, that that will that will be helpful. And I know that because of my long COVID. Like that will be one of the happiest moments of my life so far getting into that pool. You know, I ,yeah, I just wanted to say like, I completely agree. And thank you for sharing that because you did take a risk, say something like that to a community that is very anxious about any suggestion that it's in your mind. So you obviously don't go anywhere near that. But, yeah you took a risk saying that.

Gez  1:21:30

yeah. So here's the again, an N equals one observation from the last three weeks that I've spent in the apps. So in terms of... I've looked at it as autonomic conditioning. So David Petrino does this a lot with his patients at Mount Sinai. And it's about trying to, and this is also what Suzy Bolt does to actually, it's about trying to do a pattern of movements, that is somewhat stimulating to the body, but not so much that it is done to a level where it's is autonomically challenging. So that you raise the heart rate a little bit and then calm the F down, right, and then you do it again, you raise the heart rate a little bit, and then you calm the hell down. And then you keep doing that without ever going over the point where it gets stuck in that oh my god, it's gone mental phase.

Gez  1:22:15

So for example, if I was on my feet for 15, 20 minutes, just around the house, I don't know doing whatever around the house or not doing anything in particular, but just on my feet doing something before, I would notice before I went away, it wouldn't be long for my heart rate started to just it just suddenly went, Oh, my God would go crazy. Like you know, 110 120 130 and would just keep going mad like that. And when I got out to the Alps, like even by the time I put my boots on and walked like 100 meters to the car, oh, my God, my heart rates doing 130 again. But by being really, really careful about incrementally building. And then also after I've done my day's activity, I'm also spending eight hours resting solid, like not like literally my total step counting that day was like 1200 from what I would normally do at home of 5000. So I'm massively reducing all of that no emails, no work, none of that nonsense, your rest. But when I'm doing the activity, I'm being really careful to break it all up. And then slowly building it up day on day on day without hopefully ever triggering that PEM limit or in any incremental bit of activity, doing something that's so intense that the dysautonomia suddenly takes over and fight or flight goes mad and the heart rate goes mad.

Gez  1:23:28

Long story short, by the end of that three weeks, I was doing half days, so like three hours on the mountain of and I was even able to talk to people on the left. Still doing the rest afterwards for the rest of it. But my heart rate was so much more under control and behaving normally. And it has been since I've got back I had two or three hours, busy this morning on my feet of doing stuff. And I sat down and went, huh, I haven't actually needed to sit down and I'm now sitting down out of choice. So I have definitely had a level of autonomic improvements that I have managed through this degree of reconditioning. Now, this is a reconditioning exercise that .... because I know how to ski and because I can control that environment, I'm being very careful and I'm by myself. So I'm only looking after myself. I don't have anybody else's emotional, physical, whatever needs to look after. I can be very selfish in that environment. You've got ... if you want to try and do something similar, you have to it helps if you can be in an equally selfish position where all you're doing is managing your own needs and understanding your own limits and only staying inside those whilst you gently just push the limits and back off. Something like running is hard to do this with because it just immediately raises the heart rate so much. Swimming though. I would be so happy if you could do whatever swimming you could that gave you access to that place. Again, this helps the longer you've been ill the greater sense you've got for where your limits are and where those PEM limits are and being able to Identify those early signals that tell you that you're overdoing it, whether it's a bit of pressure in the head, whether it's a bit of dizziness or anything else, that show that you're getting a bit dysautonomic. This is all so individual that I can't say , everybody has to go skiing, that would be insane. You know, but if there is something

Katya  1:25:15

Yeah the takeaway from this podcast - and actually I'll begin with it - do you have long covid? go skiing?

Gez  1:25:26

What hat I would also say as part of this environment is a huge part two in terms of again, helping you calm the nervous system down, and do you have a happy place in the world that you can get to, because that will also be really powerful, especially if it doesn't have environmental pollutants and all the rest of it. Is there a happy place for you that you can get to where you can do something that makes you feel happy and connects you with your body that you can do in a way that's really gentle and incremental, when you can back off and stop when you want. That's the sorts of things that we can do, which I do think can make a big difference in recovery. And the people I know, who have recovered after two plus years have all done something similar, or their own versions of this, whatever it may be.

Gez  1:26:09

And there is no blanket answer for what this looks like for everybody, because it's so different. But I don't know anybody who's recovered who hasn't done major parts of this, whether it's calming the nervous system down with gentle reconditioning, the happy place, cutting out stress, whether that's work family relationships, or taking time out from any of those that are hard, however long it needs to be, you know, I've got a mate who literally, he had, he had a family and young kids. And he just went away into into his parents place in Wales and spent like, three months there by himself, just living in a hut in Wales. And he was sorted. And he went back to running ultra marathons - whether he  should have done is another question. But, but, but the point is, is that that variations of that story seems to be pretty common among the people who have sorted themselves out.

Gez  1:26:57

 So until we've get the magic pill, yeah, we should try and do whatever we can in that direction. And the other hard thing, too, is what priority you put on this stuff, right? Because my priority, actually, recovery was my priority, like number three, or number four, I was writing a book, I was making YouTube films I was doing all this other stuff. And I never really prioritized recovery, which is why I've just taken the best part of two months out, and like deleted Twitter, Instagram, all the rest of that stuff off my phone, my computer not been on it. Just trying to change the mental map of the way that my brain works as well as everything else. Is this two months enough? Probably not. I'm probably going to need to do another thing. But again, it's like if I do I want to spend the next five years bouncing off my PEM limit and not being well enough to live a full life or do I want to invest time now to try and move the needle far enough that I can just interrupt those vicious cycles? You know? And yes, it's, ithere's a degree of privilege in being able to carve out that time for myself, I don't have family, I don't have kids, I can afford to take some months out, you know, I can cover myself financially for that. But not everybody can. That's again, this is why it's so hard, right? So hard.

Hannah  1:28:15

Oh, that's so so interesting. It's like a lot of food for thought maybe we start thinking about what I could maybe be trying to do. Because yeah, I think my, my, my eye's off the ball as well. Like I've, I'm so invested in my job. And I kind of do, basically my I kind of live and breathe and rest in order that I can do my job. So I think I give everything to my work. And I don't really I don't I definitely don't give myself enough space to actually think, could I actually recover from this? Interesting, interesting to think about.

Gez  1:28:52

It took me I mean, you know, a year of knowing I should do this before I actually got round to doing it. Yeah. And, and it kind of got to the point where actually the plateau just extended and extended, extended and unlike I've been on this plateau for a long time. And people always say you're doing better. And I'm like, am I because can I act, when you look at the objective things that I can or can't do, they're still the same, or were the same. And that's the baseline I've been trying to shift, I would say if it's food for thought in there, digest it and take as long to digest it as you need to work out what your version will look like. And for you to get to the emotional place where you can say to yourself, it's okay for me to do this. And this job and everything else that I've put so much of myself into for so long. It's okay. And this is more important for now. And I can come back and I can then do that job better afterwards. And that's a big choice to get to right. Because for those of us who invest our lives and our souls and our brains into our passion, which is our work. It's hard to separate ourselves from that because with that comes meaning and without that meaning. Where are we? Yeah, there's a lot of digestion, emotional digestion in there before you get to that point where you can do it.

Hannah 

definitely.

Katya 

Oh my god. I felt like I felt like I walked into a podcast and now I'm thinking like, I need to make some massive, massive changes to my life.

Gez 

There's a book I recommend you guys to read. It's by Jeffrey Rediger. And it's called Cured.

Katya 

You're supposed to plug you're own book Gez

Gez 

Yeah, this is pretty good. This is what pushed me over into identifying the changes I needed to make in my life. Read it.

Hannah 

We'll check it out. Yeah, thank you so much Gezfor coming. Honestly, we've really appreciate it. It's been such a privilege speaking to you, and kind of getting that inside view of what it was like to make the book to write the book, and then hearing about your experiences of managing your long COVID. And what you're doing now to recover, which I think is, I'm very interested to hear kind of how you fare. Now, having kind of said, you're feeling better after that trip, like, I want to check in and find out.

Gez 

Let's catch up. Let's pick up again in X amount of time, and let's reconvene, and we can talk about what's moved, what's changed and how everything else is happening and all of that.

Katya 

Yeah, that'd be amazing. I yeah, I can't thank you enough. But like, not just for writing the book, but also for giving us so much of your time. Like we said, 45 minutes, and it's been

Gez 

it's been a pleasure. Honestly, it's been a pleasure. Yeah,

Katya 

I get that. It must be super rewarding for you as Well. But just thank you so much.

Gez

Yeah. Pleasure. Yeah. Okay. Well speak to you guys soon.

Jingle 

I'm having a good day.

Katya 

Okay, thanks so much for listening. I really hope you got as much out of that as we did. If you haven't yet read the long COVID Handbook. We link to that on our website, bounded energy.co.uk just mentioned a book towards the end, called Cured by Dr. Jeff Rediger, an American doctor who set off on a mission to investigate occurrences of spontaneous recovery from seemingly incurable conditions to see what he could learn. In the book, he shares his findings. And I went and listened to that book straight away after this conversation with Gez. And yeah, I completely agree with Gez. It's an excellent and really useful book. This episode is already super long for the long COVID ear. So I'm not going to give it a review. But I just like to thank Gez again for recommending that and pass it on to you guys. I've linked to that on our website as well. I hope you join us next time for the final episode of this season. Before Hannah and I take a well earned break. In the next episode we'll be sitting down with neuropathologist Dr. Mayen Briggs, and finally getting answers to some of the questions we've been collecting this season. Why do I hate loud noises? Why am I getting my words wrong? What is brain fog and more? If you enjoyed

Hannah:

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to bounded energy@gmail.com Or find us on social media at bounded energy.

Katya 

And yes, that is me singing the jingle. A huge thanks to Harry Gould, the talented musician who lowered himself to produce it and nanny Atkinson, the illustrator who made a rather joyous logo

Episode 6 - Long Covid & My Body

Katya  00:01

Hey, I just have to say I'm editing our Body episode just so I can share a version with you. And I think it's the best example so far of our drastic swings in like... we go from super serious to just unbelievably banal. I know we were really really tired for this episode, but I actually think it might be okay...

Hannah  00:24

Oh, cool. I think that's what you need I mean Long COVID's shit. So you have to spice it up with fun bits and nice little diversions just to give people breathers. So I think that's good. And also, I'm glad to hear that it turned out okay, because I think I was so knackered during that conversation, the whole thing is a blur. Like, I really can't remember anything I said.

Katya  00:45

Okay, so we go down a 17 minute Taylor Swift black hole, which I I just I had sort of forgotten about and that all obviously has to be cut. But apart from the Taylor Swift tangent, it is like pretty much all usable.

Jingle  01:06

I"'m having a good day, minute, hour, week. What to do and how to be with the beans given to me, me and my bounded energy."

Hannah  01:23

Medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  01:36

Hello, welcome back. Thank you so much for joining us. In this episode, we discuss the physical changes that happened as a result of long covid, the struggles we had accepting these, and how we care for our long covid bodies.  Before we start, I need to give a trigger warnings. In this episode we touch on topics which some people will find disturbing – this includes weight, body image, societal ideals of beauty and social pressures to look a certain way. And we also discuss thoughts of suicide. We don't dwell on these themes. And you can actually hear at the beginning of this episode the voice notes between Hannah and I, where we laugh at the ease with which we move from tragedy to comedy. But if you think that this may be difficult or unhelpful for you to listen to, please feel free to skip this episode. Anyway, Hannah and I were high energy on the last episode, and we're pretty low energy for this one. I think when we're through with this, you really will have seen all the shades of long COVID. Maybe I'll release an episode that's just 45 minutes of silence to show us on the bad days, I'll loop in some of Hannah's yawns.

Katya  02:45

 This was another good one. I know I say that every time but I think, as anyone with an experience of chronic illness or disability would accept, sickness often engenders a brutal confrontation with the reality of what it is to be human, to live in a body that, no matter what you do, will eventually decline. And so I think this episode is relevant for all of us, not just those of us who are forced to confront this reality earlier than we'd expected. Thanks for listening.

Katya  03:47

How are you? Hannah? You're in bed?

Hannah  03:49

Well, I'm lying on my bed supported by pillows because I thought that'll be easier than sitting up at my desk.

Katya  03:56

how are you feeling?

Hannah  03:57

Um, I'm okay. I am tired, a bit spaced out. But I think I'm okay to have a conversation.

Katya  04:05

I'm in the exact same boat as you because I realized I've had a bad flu last week. And I'm still feeling ... I'm sweating through my T shirt and a bit shaky. I know, but it's just ... it's two things. Firstly, I love speaking to you. So sometimes that boosts me a bit. Secondly, I think I can do some of this. And thirdly, I thought (I know I said it was two things. And ninthly!  No!) but thirdly I thought we might be able to get some of the stuff down and then feel a bit better because you know, we have like three quarters of an episode or I don't know, half an episode or five minutes. Like maybe this is our introduction? (laughs) Yeah. And we've done the first two minutes.

Hannah  04:51

Yeah.

Katya  04:52

There was something I wanted to ask you. I was just thinking yesterday. We've spoken about how we're on a totally different time schedule. So I am a morning morning person whereas you warm up over the day. Yeah. Whereas I get worse. my good hours are probably like five in the morning to one o'clock.

Hannah  05:11

Gosh.

Katya  05:11

So on days when we record, I'll message you at like 7:30/8. I've been trying to wait a bit actually to not pressure you to be like, "Hey, are you ready". You'll read the message normally around 11. And you'll need a couple of hours to know. So, what happens to you when you wake up in the morning, because it's obviously totally different to me?

Hannah  05:31

Well, it's got worse over the Christmas break. Because when I have my work routine gone, then I just slide into what my body clock wants me to do, which is I'll go to bed between midnight and 2am. And I'll wake up at I don't know 9/10. But that's the thing is sometimes I've woken up 11/12. So yeah, I'll read your message from seven or eight when it's like 11 and I've just woken up and I'm like, oh god!

Katya  06:02

I've done the same, I've slid into my normal sleep time over Christmas. But that's going to bed at 7/7:30 and waking up at 5, 5:30 as opposed to around work, when I make myself go to bed at like 9or 10 and try and wake up at 7:30... It's like all of the odds in the universe are conspiring against us in our quest!

Hannah  06:27

But today I woke up in a complete daze. I set my alarm for eight, which I slept through. (Katya laughs) I set another alarm for nine, I sort of woke up. When I wake up, it's like I'm only really half awake, like I'm often still in a bit of a dream space, and I'm moving in and out of consciousness for ages, and then gradually, gradually, I'll be able to sit up, then I'll be able to get out of bed. It takes me a long time. It sounds weird when I talk about it.

Katya  07:04

It's interesting, like, obviously, it doesn't sound ideal. I'm not gonna totally lie to you. But it doesn't sound uncommon in that I've heard other people have the same experience waking up. But I have had it before I think it's... I do think that it's just when you're, you're forced into a sleep schedule that does doesn't align with your body chemistry. Because it sounds like what happens to me if I've woken up at two in the morning, I have been woken up for some reason. And you feel drugged like you feel physically. It doesn't matter if you know, I go back to my childhood nightmare that there was like a velociraptor under the bed and I physically couldn't move more quickly or

Hannah  07:43

Yeah it is like you're a bit drugged. The thing is, I was... I've always struggled with early mornings, my whole life but long COVID has made that much much worse.

Katya  07:55

I remember you saying that you spoke to someone who's experienced of long COVID was it exacerbating their weaknesses or, just amplifying certain natural tendencies because you're, you have so much less resilience. But like before, you know, my family teased me because I went to bed at nine. Now they don't even know what to say when it's, you know, seven o'clock. 730. And I'm like, 'night guys'. And I'm actually in bed asleep.

Hannah  08:22

Yeah, you know how I kind of warm up over the day. My best times where I feel my best and most normal is early evening. It's really annoying because it will be 9/10/11 at night and I'm like, "Wow, I feel the best I felt all day"

Katya  08:40

that in your early evening???

Hannah  08:44

That's late evening.

Katya  08:46

Early evening like 11pm. (both laugh)

Hannah  08:50

But yeah, when I feel my best, it's like, oh, I don't want to have to force myself to go to sleep. So I'm feeling really good. And I want to take advantage of feeling good. And yeah, so it's it's annoying.

Katya  09:00

I think that that phenomenon is described, I've been reading the long COVID Handbook by Gez Mendinger and Danny Altman. And what you're talking about is described in the book, I can't remember where it is. I was gonna say I should have looked it up beforehand, but I didn't know that you were gonna say this. But yeah, in the book, he talks about something that is self reported in COVID.Long Haulers is people who have this massively shifted body clock and they report being hyper awake, not you know, 11 o'clock, 10am, midday, but mid to late afternoon. They come online and they're full of beans, but it's just like...

Hannah  09:41

Aww I'm so glad to hear that other people have the same thing. Yay!

Katya  09:46

I knew you would be Yeah.

Katya  09:47

Do you want to have a go then? We've written out questions to talk through and our first one is how has long COVID changed your body? And I think we can go around this because it's like, it's not a simple question.

Hannah  09:59

It's not a simple question. Like, on the one hand, I could maybe answer this just really shortly and simply but then also, I could talk about this for days. There's so many sub themes to this question. I mean, how has it not changed my body? I guess I would say, before I got COVID, I was very fit and very active. So I'd go to the gym and do exercise classes, like several times a week, going for a good long walk was part of my weekend routine. And I was on my feet for most of the day during my working hours. So now my body has changed in that all of that activity is drastically reduced.

Hannah  10:41

So I've noticed, I have kind of two things where there's like the primary change where my muscles do feel weak, they feel shaky, they feel stiff in a way that I think is, is the long COVID itself. And then I have the secondary effects, which is, the longer I then don't use those muscles, the weaker and weaker they get. So I feel there's these primary symptoms where it feels like oh, this really is long COVID in my body. And then there's just the stuff that comes about from being inactive for so long. And it's quite hard to extricate the two things at play, you know, now that I'm nearly three years down the line, it is sometimes hard to know, I'm like, is this long COVID? Or is it just inactivity making me feel this way? So yeah, I would say my muscle tone has really reduced I'm not able to, I really notice now when I'm lifting things and carrying things like I did when I've got strength, and yeah, my muscles just feel stiffer, more sore. But I mean, obviously, my body has changed because the fatigue is just that all consuming, dark cloud just hanging over you all the time. But the clouds clear. Sometimes you're like, Oh my God, I feel almost normal.

Katya  12:00

I actually think the cloud metaphor is perfect, right? Because if you think about what is directly long COVID, and what is the side effect of the symptoms of long COVID. So I think we both have this in common the direct symptoms of long COVID for us are among other things, fatigue and breathlessness. So if you have the direct symptoms of long COVID raining down on you on the bad days, right, you're super fatigued, etc. Because that cloud has been over you for one and a half years for me almost three years for you. When the clouds go and you have the good days. Something that kind of is like a rainfall on its own for me is then I will look at my body that for a year and a half has done no kind of exercise. I look at my body. And it can be very, very distressing because something I've realized that I got into doing was feeling my calf to try and find a calf muscle. So I put my hand on my calf and tense to see if I could feel the muscle as a way of assessing muscle wastage. Which to be honest, I think is just as punishing and unkind as pinching, you know, softer parts of your body. Like I don't think that's a good thing. But it's just another ...Another side effect of long COVID. Is that.

Hannah  13:26

I guess your body feels different. And then over time you start to see that Yeah, your body looks different as Well.

Katya  13:34

Yeah.  And the visible changes can be just as distressing because you know disabled bodies or long covid bodies are not often visible, they are so absent from the media. I’ve been reading this great book called The Body is  Not an Apology by Sonia Renee Taylor where she explains that the lack of representation makes people internalize feelings of shame around their bodies . She says ‘when people don’t see themselves reflected in the world around them we make judgements about that absence’. And the judgement is so often, well I don’t see my body being celebrated, there must be something wrong with me. I just found that really powerful because it explains the challenged I’ve had accepting what my long covid body looks like now compared to how it was before I got sick. I’ve gone from having this body that looked like bodies I saw on film and television or which was in that group, healthy, active, etc. to one that I just don’t see anywhere.

Hannah  15:16

Yeah, yeah, I think I imagine that no matter what, how your body has been changed or shaped by COVID, whatever shape or size it now is, I don't think there's only certain types of bodies that we're used to seeing really, in the media.  I can I can relate to that.

Katya  15:38

I saw one woman online who had written about how, with her long COVID, she had just been slowly gaining weight. And her illness made her feel completely powerless and like she had no control over her body . And that was super, super distressing for her..

I think before getting sick many of us subscribed to the belief that you are in control of your body, and we bought into the diet and exercise culture. Thinking you can change the size and shape and strength of your body with willpower and time. Like we know it’s not so straightforward people are at the mercy of their genes, their environment and their life history and experience. But when you develop a chronic illness like long covid, any sense of that control is just ripped from you, and we do have to sit back and watch our bodies change without being able to really intervene that much

Hannah  16:18

Yeah, totally. Yeah, I think when you're healthy, you can exert some control over your body, but only to a very limited extent, really, your body is always out of your control a lot of the time. And now that we've got long COVID It's like yeah, any control that we did have that is wrenched from us. And yeah, I think that's something that has changed my relationship with my body too... I don't have feel I've got any control over it. And I also don't feel like I can really rely on it or trust it to perform when I want or need it to.

Hannah  16:52

Adam Buxton who, I listened to his podcast, something he says about how the effect that aging has on his body, is he says that, oh, I just feel constantly betrayed by my body. And I was like, yeah, like, as you age you do you lose that control, you feel like your body's letting you down so that your mind is willing, your body is not. And I do think that it's strange to be in a young body like we are. We're both in our late 20s. But yeah, we're kind of I guess, having that that experience of our bodies betraying us, our bodies not being in our control in the way that in your mind anticipated you would only face as you got older. One of the difficulties of being in a... Well in an ableist society is that we grow up expecting to live in able bodies, till we get old, and then suddenly, when, when that plan doesn't work out, and suddenly we find ourselves in, in disabled bodies. It feels like a real shock and something really unfair and something we weren't mentally prepared for.

Katya  17:56

Yeah. And you're left kind of wondering, Where do I fit into this world? How am I going to navigate this? I, I'm planning on going on holiday this year, somewhere abroad. And my mom said to me, you need to think about mobility and access, you need to make sure you know that you are somewhere where if you have to stay in the hotel for the whole holiday, you can, you know, have a nice view. Or maybe you're on ground floor. So you can just walk out to the pool, or there's lifts or there's lifts. And if you if you really want to go to the seaside, make sure you go somewhere that has a flat approach to the sea. And I was listening to her thinking, oh my god, I'm so glad that I spoke to you about this before I tried to book somewhere. But also, this is not the conversation that I thought that we would have when I was 28!

Katya  18:51

But I guess it's not that disability isn't common. It's just it's like it's so complex. And it's so often invisible. I remember listening to a great episode of I think it's called "you're dead to me". It's a History podcast, on disability in medieval times. And one of the magical points they made was just being disabled in medieval times didn't really look like anything, because there was so much disability because they lived in such a dangerous environment where malnutrition was so common. And it it wasn't an identity in the way that in the way that we might think about it.

Katya  19:27

Now, I feel like it's not that, you know, there aren't many, many people who have all forms of illness and you could even make an argument that aging is a type of disability. And I know there's a scientist called David Sinclair who is actually looking at aging like an illness. And one of the things he tries to get people to do to raise compassion and awareness for old people as he gets people to wear really thick glasses to impair their vision, really heavy ear mufflers to diminish their hearing, he puts them in a very heavy suit to reflect kind of brittle bones, muscle wastage. And then he gives them thick gloves to mimic arthritis in your hands. And he'll put people in the suits and say, Do you think it's okay, that society has accepted that you will just live the last 10 years of your life like this? And so it's it's not I think that disability isn't everywhere in its in its various shades. Right it's that it's quite invisible, and there's so much pressure to you, especially now, now that health is fashionable. I feel this huge pressure to hide it.

Hannah  20:40

Yeah, I think, particularly when, obviously, there is a lot of messaging around preventative health care, and that by doing things to keep ourselves healthy, we can stave off illness. But I think that that, that has a risk of coming with certain assumptions that people that then are ill are then somehow to blame or somehow responsible for that illness, which I think is totally totally wrong.

Katya  21:10

Yeah. That ties into the shame, right? Because Oh, my God, I was looking at I think it was one of the one of the newspapers today and it was just "new year new you", it was all about being the healthiest person you could be. And it was just diet and exercise stuff. I just remember looking at it thinking, I am not here. There's nothing here for me.

Hannah  21:29

Yeah, yeah. Yeah, I think I felt that way for a long time, when it comes to health messaging ... I kind of just check out of it. Stuff that would have been applicable to a healthy person isn't going to work, in my situation, trying to not feel pressured by any of that messaging. I always when I feel like I'm being tempted to compare myself to other people, I just try to think to myself, like, Oh, I'm in my own lane, I almost need to make sure I've got my blinkers on. I'm in my own running lane. And in my own journey, I'm going at my own pace. There's lots of noise going on around me, that's just not relevant to me.

Katya  22:09

Yeah. I feel like getting a chronic illness almost makes you wake up, in a way, like I feel like I’ve emerged from the matrix and I can see how all these societal norms and pressures, to look a certain way, keep up with diet and fitness trends, they all just seem completely bizarre & irrelevant. It’s like in this book called Watching the English by the anthropologist Kate Fox, she says that culture is invisible when you’re inside it. And before long covid I was able bodied in an ableist society. And now my body is disabled, and it’s like you said I have to have my blinkers on and disregard all that messaging. But it's just, it's so messed up that it's on us that we have to be like, Okay, I don't see myself here, here, here or here. But you know, I have to find a way to be okay with that. I almost wonder if some parts of long COVID are harder for men. Because you know, the archetypal male is strong and powerful and physically capable, and long COVID. If you have it in the way that we do with the fatigue, I just wonder what that's like for men to deal with psychologically? I'd be interested to hear from Yeah,

Hannah  22:43

yeah, I guess that's the thing is, everyone's experience of being in a long COVID body is going to depend on what their relationship was like with their body before they got ill. And people are gonna have very different reactions to it, aren't they? Because I guess I don't know. You can argue it both ways. It's like, yeah, men might have might feel a pressure around. Yeah, that masculine image. But then women might also feel a pressure around, like what you were saying about that, that lady who's gaining weight and stuff, women might feel a lot of pressure around that, in terms of being made to feel like they need to keep their body looking a certain way to keep meeting some sort of ideal.

Katya  25:07

I want to move on to something that is slightly different, to talk about the mind body connection because it’s something that I’ve become much more aware of since falling ill.

So you know, we were speaking about the feeling that the idea that you think you can control your body, and we had that before we got sick. Yeah, I have noticed a really weird, a slash interesting pattern that I think they kind of woke up to in September when they had my relapse. So one of the things that happens with me and long COVID crashes is I become pretty much immobilized. So during this September 2022 crash, I had spent an extended period of time very, very immobile, you know, I couldn't have been taking more than like, 100 steps a day for about three, four weeks or so. And with that physical immobility, I had, for the first time ever, thoughts of suicide, thoughts of I don't want to be here anymore. I can't. There's no point. And I had this experience where I caught the thought. And the thought struck me as quite alarming. And I, you know luckily, I have friends who've spoken about depression and thoughts of suicide, and I have a history of meditation. So I was able to recognize the thought as this is dangerous, this is, you should really objectively look at this.

Katya  26:39

And I went to the bathroom, for some reason, my instinct, as soon as I had the thought, I got up, went straight to the bathroom ran a boiling hot bath. And I found myself sitting by the side of the bath, just holding my body and saying, sounds really dramatic. But sometimes you have these dramatic moments, saying, you know, don't worry, I will never hurt you to myself. And I had this huge realization that it's not that I am in my body, I actually am my body. And if I were to hurt my body, there is nowhere else for me to live, if that makes sense. And I didn't know. And the interesting thing now is because I was very, very ill last week, I had the flu, and I was physically immobilized again, and the thought of suicide came back again. And so I'm starting to see actually that it was an illusion that I could control my body, in the same way that we have this illusion that we can control our thoughts like, these things just seem to happen to us, like I don't choose, there is nothing I do, that suddenly renders me immobile for four weeks in a row like that is my long COVID. And when my body breaks down, so I have this mobilization, I get intrusive, unhealthy thoughts, they go together, when my body malfunctions, my brain malfunctions.

Katya  28:05

  feel I'm not explaining this very well, but I feel like like I’ve reconnected with my body. Like, maybe we are together, whereas before, because I was always forcing my body. I was always forcing my body to the gym, I would feed my body when I was convinced that it had done enough work. It could sleep when I was finished with my work. And then my body when my body collapsed in long COVID. I viewed it as a betrayal. How dare you do this to me? Because that's like, that's not the relationship. Yeah. And then this moment actually make me realize that like, it's not like, my body is my servant, and he's betrayed me. We're in this together. Yeah.

Hannah  28:53

Yeah. More of a Yeah, I guess like a Well, I suppose it's more like the ...No, it's hard to say it without it just sounding trite and weird. But it's like, yeah, like, I guess your mind and body are interconnected. And it's a  partnership.

Katya  29:08

Yeah, like, we need to negotiate more. I think I woke up to the realization that my mind and body had become separated, they had different and incompatible desires and needs, and that when I was healthy they worked together, they both wanted to go in the same direction. But long covid left me with the mind of a healthy person who wanted to go running, and dancing, and see their friends every weekened but with a body that just wanted to sleep and rest.  And I feel like I need to resolve that separation, they need to go together again and you know I know my body isn’t going to suddenly recover, so  I need my mind to bend towards my body to regain that sense of self love and unity. I can't keep looking at my body like this thing that let me down. But more like, Hey, buddy, maybe we don't go for a walk today. And maybe we don't compare ourselves to like fitness models.

Hannah  29:23

Yeah, yeah. And I guess perhaps in the past, you and me might have had that relationship with our bodies where it's like, right, my mind wants to do this. So my body will obey. Whereas now it's like your mind sort of almost has to you like you said, negotiate or ask your body be like, Well, I really do want to go for a walk today. But body, does that feel manageable? No, maybe we'll leave maybe let's find a compromise. It's like you have to ask and test and just check that your body is actually able to do what you want it to do. Yeah, and you have to think in advance about about your body, you can't just take it for granted and assume it'll always be there to do what you want it to do you have to kind of anticipate its needs. And it's a much more. What's the word? Yeah. Like, I can't. My words are not...

Katya  30:15

Like, it's kinda, you know, I was thinking a lot about the mother child relationship, how, obviously, I'm not a mother. But when you are a mother, when you have a child, like they are an extension of yourself. And if you think about, that relationship of, I don't know, you're almost part of me. I feel like now when I talk to myself, I try and be much more, I guess loving. Yes, Sonia, Freeman, read whatever her name was just got in my head, Sonya Renee Taylor has got in my head, because she's all about radical self love. And, you know, it's not the self love in the admiration that I thought it was going to be, you know, of like pure aesthetics and power. And oh, my God, look how strong I am. But more like a mother child. Yeah, this is my point. It's more of a mother child's love in that. I am going to look after you responsibly. Because you are off me. And linking to like, my thoughts of self harm. And I will never hurt you. Because you are meIf that's I don't know if I went too deep there. But that's actually like the thought pattern. Yeah.

Hannah  31:29

Yeah, yeah. Yeah. No, I really like that. That image. Yeah, it sounds like I don't know. How would you describe it as to like, kind of moving from like a master servant relationship? Yeah. Your mother child relationship.

Katya  31:48

I thought of it as like moving from dictator. Yeah, like slave driver slave yet to negotiator. But then even beyond that, right? Because the negotiation, that's not love. That's like, Okay, Well, I want to go for a walk on Monday. So you can't do any reading on Monday, but maybe Tuesday, I'll let you watch a film. And then Wednesday, I get beamed back. And that's why my, the physical position I took in the bathroom that day of cuddling my body felt like of the physical act of that self love. It was quite a, it was a really,

Hannah  32:23

yeah. Sounds like quite profound moment. It's like a shift, isn't it? Yeah. Just, just in that moment. Yeah, altering the way that you're seeing and viewing and understanding your body and trying to move into, I guess a more positive like a more healthy relationship with it, a relationship that's going to be way more sustainable down the line, then because yeah, I think that's the that's the thing is, if you are in that master slave relationship with your body, your body's gonna let you down. Obviously, it's got long COVID It's not going to be able to follow you what you want it to do. So then you're, that urge your instinct is like, right, Well, I'm just gonna cut ties, screw that, screw my body. It's not doing what I want it to do like, and get really angry. And yeah, then have those destructive feelings towards it. Yeah.

Katya  33:16

That That makes total sense. Yeah, you're so right. I had been living with this feeling of, I think, at the beginning of my long COVID It was probably rage and fury with my body and like bewilderment. And I definitely think I passed into, I think I thought it was apathy, but it was probably loathing contempt. And then it's really interesting because I can see now how I like that. I don't know if it's like a model or something. But that explanation maybe for why thoughts of self destruction would, would arise, but I like what you said. I can't remember the words you used Hannah. But I felt like you said something that triggered the idea of sustainability. That's what you said it's not sustainable. I've also had this thought of, Well, if I am not going to destroy my body am I gonna stick with this and see it through? If there is a cure for long COVID in three years time? I need to be around for it and how can I be in like the best situation to... I don't want to say pick up where I left off because these years are never wasted but to make the most of the time that's left to me when I get all my beans back. And like I need a body.

Hannah  34:34

Yeah, yeah. Yeah, you need to be around Katya like for when, when there's a cure, or at least, not even a cure just when there's more ways for us to at least, like improve from where we are, even if it's not ever something we can completely get rid of. And, yeah, but you've got to have a lot of hope. You've got to have hope and kind of faith in it. In science, that that will happen.

Katya  35:03

But it's not just hope it's like, I think it's something like over a billion dollars has been invested in long COVID research so far. So it's like hoping, but also money and people's money is going into this. This is a really small thing. But I actually on the back of that thinking, I've done a lot of thinking around this, I, I bought myself two face creams, I bought an SPF, and like a night cream, which I hadn't bothered doing during long COVID. I hadn't bothered with stuff like that. And then that thought of, Well, if I come out of this, and I have my beans back, I want that shiny, shiny skin for all of the parties, I'll be going to

Hannah  35:49

yeah, I've I've stopped using creams and whatever. Well you because it takes energy to put it on. But then also there is that thing of like, Well, who gives, like, no one sees me blah, blah, blah. But I do think there is something in ...we can't control our bodies, we can't control what they look like, but maybe doing those little things if you can, maybe that is an act of kindness or respect, you know, maybe there is some sort of therapeutic benefit doing that to look after the small bits that you can

Katya  36:22

Yeah, I wondered if it would have her feedback loop. You know how they did their studies where they made people hold a pencil between their teeth so that it forced to smile. And the people report self reported improved sense of well being. I wondered if you could act out love towards your body and then feel it ... Sometimes not always. Sometimes when I moisturize my face, I get that spark of who I used to be. I know the joy I used to find in in things like that and the physical pleasure of just touching yourself in a kind way.

Hannah  36:59

I know a lot of people say that ways that they treat themselves to things are like going and getting their nails done or, or stuff like that. I think a lot of for a lot of people like the way that we look after ourselves or treat ourselves is acting in ways that are kind of soothing or caring towards our bodies. And I'm sure there's something therapeutic about doing that for your long COVID body. Yeah.

Hannah  37:27

Let's take a break

Hannah  37:28

Yeah, yeah, yeah, sure.

Hannah  37:35

I'm having a good day.

Katya  38:06

All right. I don't know why. I'm like, you know, I realize I'm really spacey today. So I used to be you know, if something wasn't perfect, I would never... I wouldn't send it out. I definitely wouldn't put it out like for the whole world to see with my face on. But it's just like with long COVID It's like if I wait until I'm well, that will be in two years time!

Hannah  38:26

 Yeah.

Katya  38:28

How are you? How are you doing?

Hannah  38:30

I'm okay. I'm feeling like tired and sleepy. But it's that thing of? Well, perfectionism be damned. We'll just we'll just chat.

Katya  38:41

It's okay if we make a low energy episode, we have really low energy listeners.

Hannah  38:47

That's true. I was gonna say I... you know how you sent me something the other day, which happened to have a reference to Taylor Swift song Seven. Yeah, I listened to that song. And then it just made me remember how much I loved Taylor Swift when I was a teenager. It's got such a lovely comforting nostalgia for me a lot of her songs. But I remember her really famous song that me and my family used to listen to. So my mom bless her was so long suffering. She used to just play this album for us in the car and it was like, me and my sisters and we were all just between the ages of 10 and 17 or whatever. And we would play the one I can't remember what it was but it maybe it was called white horse or no it was called Love story I think Love story and it was like that one where it's like yeah, it's like 'Marry me Juliet...' (Hannah sings the chorus)

Katya  39:46

I'm like one of the biggest Swifties ever.

Hannah  39:50

(sings the rest of the chorus)

Katya  39:54

I love Taylor Swift so much. I have prepped my parents brothers and Matty on what to say if they ever meet her, because I feel like it will be my rotten luck that I'll never meet her. But if they meet her they are all to say 'your music was the soundtrack to Katya's life' because I did today. I have already listened to Taylor Swift today. I just loveeverything she does. And

Hannah  40:18

I saw her in concert!

Katya  40:22

Ugh did you actually? When?

Hannah  40:25

So I was 17 No 16 or 17. And I remember being amazed at how good she was live like her voice is very good. Yeah, it was very, you know how sometimes like you hear people singing live and like Eesh. Like, oh, she was really good. Live.

Katya  40:46

I was thinking of this because when we spoke about it months ago, but we were speaking about overwhelm from loud noises. Because I would love love to see Taylor Swift Live. Oh my god. And I know she's going on tour now. But I went to the cinema, like two weeks ago to see the new Avatar. And I wasn't thinking I just thought I will go to the cinema. And I haven't been to the cinema in a really long time. And I got there sat down.  First I was wearing a face mask because everyone was there and everyone was ill. So I was there with my face mask, and I had my normal eyeglasses on. And then over my normal glasses. I had the 3d glasses. So I already have like three things on my face. Avatar starts playing Hannah, it was so loud. I was sat there like why is everything so loud and I said this to Matty and he was just like, it's always this loud. And I was like holy shit if it doesn't suddenly get dramatically quieter, I'm gonna have to leave.

Katya  41:53

Anyway, luckily Matty had his noise cancelling headphones with him. So I put the headphones on,  still too loud, turned on the silencer which turned on the light. So I'm sitting there with my face mask, two pairs of glasses and headphones, but there's a little light coming in. So I took my scarf from my bag, wrapped it around my head to cover the light and looked at the guy next to me. Like I looked like someone from Dune, you haven't seen that. But like everything was covered, apart from like this huge contraption around my head, right. So yeah, I can't go into Taylor's reviving concert now. But maybe I need to get some like industrial strength ear defenders.

Hannah  42:42

Maybe you could but we'd have to like swaddle you. Just I'd have to like yeah, wrap you in layers of I don't know. Cotton wool. Yeah.

Hannah  42:55

It's so funny that you say that? Because I had a similar. Well, for one thing. Oh my god, the frickin tube. The London tube. Oh my god. So frickin loud. I was sitting there. And again, I just, I've always I've been on the tube many many times. But since getting long COVID There is something about loud noises. My brain hates it. Oh my gosh.

Katya  43:20

The London tube is like a hellscape

Hannah  43:23

I was literally screwed up in pain. Like it actually hurts my brain. And everyone else is just sitting there looking really chill. Isn't it weird? I don't know what it is about long COVID that makes now noises really, really unbearable.

Hannah  43:43

There was one question we had, which was is there anything that you do to look after your body now? I think Well for me, I take like a range of supplements. I know in our self help episode, we talked a bit about that and about how it's important to not feel like you need to spend tons of money on really expensive supplements but like I take kind of the cheaper, cheapest supplements available. I try to have a balanced diet. I try to rest and sleep. But obviously, no one's perfect. I do my best. I do try and do stretching. I do a bit of like self massage. So I have like a little massage machine that I put on my shoulders.

Katya  44:23

Me too, I have blue thing.  actually say I do. But it blew up last week. Matty plugged into mains in his house... and it'sthis blue little machine that you put your hands in and hold it round like that.

Hannah  44:39

Yeah. Yeah, that's what I have. Yeah, yeah. So I use that. And then obviously I've got the tens machine which we've talked about before. But yeah, that's generally what I do. I find that if I can get outside if I can go into my garden and spend a little bit of time pottering around outdoors. That really helps improve my mood. But yeah, otherwise that's that's kind of what I do. I take hot baths and try to keep make sure I keep myself clean.

Katya  45:09

That's not a small thing.

Hannah  45:11

Yeah, it's not a small thing when you got long COVID. So, yeah, but I do do things to try and look after my body. But obviously I can't, you know, you are limited in terms of what your fatigue will allow you to do.

Katya  45:22

I am put moisturizer on my whole body the other day, which is like, so indulgent and loving and only do my feet and arms and just oh my god, my skin was like, wow. But you know, so the exercise thing, there's a wonderful book that I recommend people with, like long COVID read the first three quarters of,  it's called Exercised. I can't remember who it's by. But this, this person talks about how exercise has been forced into this very narrow description of what exercise is what it should look like how much you should do, for it to count. And one of the wonderful things I found reassuring about this book  as someone who physically cannot exercise is because the overwhelming message I got from it is actually the it's not exercise, it's movement that we need to do.

Katya  46:13

And I had, before the pandemic, I suppose during pandemic before long COVID, I did this home meditation retreat with one of the Triratna Buddhist communities. And it was led by this eccentric German lady who used to be a clown, and had then got into serious meditation. And the retreat was called meditation and play. So obviously, you know, classic retreat, we did hours of silent meditation and stuff. But one of the things she had us do every afternoon, was... Obviously, we're all at home, everyone's on zoom. And she'd put music on, that was not music anyone had ever had before. I don't know why she got this weird music. And we would just have to move in a way, move how we want . So you'd start standing really still, and you'd kind of do an introspection, and you'd find an ache and you'd stretch it. And you'll see how that felt. And maybe your body wanted to continue the stretch. But maybe that movement reminded you of another. But you'd be doing this weird slow crawl around the room. And maybe I'd start standing up by the end, I was on the floor, stretching my back. And I find myself doing that at the moment because I've , I find the stretching videos on YouTube a bit boring. And also, I know I have a tendency to not listen to myself and to overdo stuff. And actually taking 10 minutes in the morning to just move is really freeing. And I try not to do it to music because I find sometimes the rhythm or the emotion that comes with a song will make me over move. Right? And fatigue myself.

Katya  48:00

 But like, if you are not physically immobilized by your long COVID I think people should try as much as possible to keep moving even if that's gentle stretches in bed, or even if that's having someone help you move your body.

Jingle  48:16

Yeah, yeah, yeah,

Hannah  48:17

I was thinking, even, like you said, like assisted stretching, passive stretching, being helped by someone else. That sounds really nice.

Katya  48:27

I know, right?

Hannah  48:28

 Even just next, even just neck stretches. Oh my gosh, for me, I just like, I regularly just try to make sure that I remember to like look for like side to side and just like rotate my neck a little bit, just to make sure that I'm not constantly just stuck in one position all the time.

Katya

There are more and more great yoga for long covid resources out now. I really recommend Suzy Bolt’s Rest Restore Recover program, its full of accessible yoga and breathwork classes and they go from level 0 (bedbound) up to level 3 (fairly active. And there are some great videos by Sara the long haul yogi on Youtube. I’ve linked to these on our website so if you’re looking for gentle and accessible yoga classes do check these out.

Katya  48:45

I think maybe might be wise to stop there. Did you have anything you wanted to say?

Hannah  48:51

I think just inviting anyone who's listening to also tell us about one like, what COVID has done to their body or how it's changed the way they feel about it. But what people do to look after their bodies with the beans that they have.

Katya  49:06

 Yeah, I think that's so true I feel like I feel like we have ended with a really important message right which is like your body is the only place you have to live. Hust because we can't care for it in the way that we… you know that we're expected to or what we thought we were expected to… you can find another way to look after your body. I think that's the thing for me as I've gone from this all or nothing kind of perfectionist to being more curious. What can I do because I know that complete inability is just not a good,

Hannah

it's not the answer

Katya 

It’s not the right thing either.

All right.

Hannah  49:12

Cool! I'm tired, but it was good. I think we got some good points in there. And I think sometimes it took took us a while to get the points that we wanted across but that's fine, too.

Katya  49:25

Yeah, I can edit it. I can edit it. Yeah, exactly.

Katya  49:28

I have to show you I have a whole folder of your laughs

Hannah  49:32

Oh no.

Katya  49:33

 I have loads of different Hana laughs One of them is mad. You do it in the relationship episode... you have like one of the strangest laughs It's like.... I can't do it. I find them and I find them maybe I'll make you...

Hannah  49:46

Please do because I have a lot of I have a lot of variation in how I laugh.

Katya  49:51

Do you do yeah I have one off. It's like a ha ha ha Ha ha

Hannah  50:05

Yeah, I'd love to hear my laughs actually, I've got one laugh that is quite fruity. Like quite sort of. Like, it's one of those

Hannah  50:19

Ah haha!

Katya  50:22

Yeah! It sounds like someone pretending to laugh like a woman (both laugh)

Katya  51:28

Thanks so much for listening. I hope you join us next time when we'll have our first ever guest on the podcast we'll be speaking to perhaps the most famous long COVID patient ever, Gez Mendinger, co author of the long COVID Handbook, The Essential Guide for anyone living with long COVID

Hannah  51:44

 If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to bounded energy@gmail.com Or find us on social media at bounded energy.

Katya  51:56

And yes, that is me singing the jingle. A huge thanks to Harry Gould, the talented musician who lowered himself to produce it and Ellie Atkinson, the illustrator who made our rather joyous logo

Episode 5 - Relationships

Relationships

Katya  00:01

It's so weird how you're like a young person in an old person's body -  no other way around! (both laugh) I mean you're like an old person in a young person's body! When you were like, 'I need a whole day to change my whatsapp photo' I was just like, Okay then I guess...?

Hannah  00:19

(laughs) I know this is the ridiculous thing -I used to be an old brain in a young body and now I'm an old brain in an old body. And you might as well just be talking to a 60 year old woman. Really?

Katya  00:35

(both laugh) - no! I think you'd be wiser!

Jingle  00:43

I'm having a good day (minute/hour/week). What to do and how to be with the beans given to me, me and my bounded energy?

Hannah  01:00

medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  01:10

Hey, it's Katya. Welcome back to the podcast. Just a brief intro for me today. I just need to mention that the start of this episode, we begin with something that is extremely rare, something I've only experienced once or twice in the last 10 years, Hannah expressing annoyance. Hannah joined our call late having had a stranger overstay their welcome on her doorstep. And she is reeling from the experience. And I just love this conversation. And I've kept it in because I think it really shows how difficult it is to deal with strong emotions positive and negative when you're living with bounded energy. Hannah and I are unusually high energy on this episode. I was on holiday when we recorded it. So maybe it was that and Hannah was obviously burning with a righteous anger. I really do hope you find us as funny as we found ourselves. But if you don't, I hope you can at least take comfort in an honest conversation on the impact long COVID has had on the most important part of our lives, our relationships with our partners, Marty and Chris, with our families, and with our friends. Thanks for listening.

Both  01:44

Hey/How are you?

Hannah  02:26

I'm fine. I'm having this experience where I'm feeling like really, like irritated and angry. But because I've got long COVID And I can't go and  do some like really like fast yoga or go for a walk or something. It's just like fermenting!

Katya  02:46

Yeah, poisoning you from the inside. It's not even that you can't go for a walk you can't even express it too passionately!

Hannah  02:55

Well, yeah, exactly. Oh my god, I just want to like yell really loud! It's just.... But this is the trouble is I can't assert myself... like I can't sort of say... because I'm so worried about making a social faux part. And so rather than actually doing the sensible thing and being assertive about my needs, I tend to try and wait it out.

Katya  03:18

 For me it's if I have something I really want to do, like this podcast is one of them. I try and save up all of my beans. And then anything that makes me expend them fills me with anxiety and stress because it's like, you think you've hopped over for a nice chat. But you're not in my schedule. And you're taking energy that I had planned to do something else with and if you rob me of this, I will never forgive you!

Hannah  03:48

Literally like, oh my god, like the resentment I was feeling because yeah, you're right. It's like, right, I have so many beans!

Katya  03:56

and then that poison drains you!  being full of hatred is fatiguing! Honestly, in the past with things like that when I've had to use my beans for something that I didn't plan. I've had an angry crying fit, which is very different from a sad crying fit. There's a lot more like energy.

Hannah  04:19

Yeah, yeah, definitely. And I don't know what like pillow pummeling or whatever.

Katya  04:24

Oh my god, you can't do that with chronic fatigue. I tend to like sobmyself into a complete state of exhaustion. And yeah, I crawl to the nearest soft thing and just kind of stay there.

Hannah  04:38

Totally. I've totally been there. Yeah. (both laugh)

Hannah  04:41

I don't feel resentful or angry or irritated or really irritated at people that often.

Katya  04:48

No, you're not really like that.

Hannah  04:50

I'm not really like that anyway. I can kind of let a lot of things go. Yeah, but it's funny just today. Just really? Yeah, it's like a really different experience.

Katya  05:00

So I want to explain why this episode is important to record because I feel like people who don't have long COVID might be like, Well, why are you doing an episode on relationships? But I, I'm listening to a really lovely book at the moment, it's called The Good Life by Robert Waldinger and Marc Schultz. And this book shares the results of this study. It's called the Harvard study of adult development, where they basically followed like 1000 people from 1938 onwards, and it's still ongoing. And every year, all of the participants had to fill in a one hour survey, just self reporting on their happiness, they had to share all of their medical records. And then every decade, they would have a four hour long interview with the researchers. And the goal of this study is to find what makes a good life. And the results of this study basically show that if you were going to pick one area of your life to invest time and energy in that would have the greatest payoff in terms of your physical and mental health and your general happiness, you should invest in your relationships.

Katya  06:12

I'm only halfway through the book, but it talks about healthy relationships as almost like adjacent to things like healthy eating and physical exercise. There are a few theories they have as to why strong relationships have such a strong correlation with good health. But one of the theories is that loneliness is a chronic stressor. And so they think that the mechanism by which having positive relationships in your life leads to better physical and mental health is that it helps you deal with stress, which, you know, long term is really bad for you. And so I just been thinking, you know, reading the book, it made it really clear to me that the hardest part of my long COVID Is that because I have low energy levels, maintaining my relationships has been very difficult. And at times, it's actually been impossible. That's why this feels like such an important topic for us to talk about.

Hannah  07:04

Yeah, yeah. Yeah. That's so interesting. So just really just, it just I don't know, if it's kind of sad... It's just so sad, isn't it? Because the more and more tired you get, the less and less you can be with people. And then that makes it even worse. It's just such a vicious cycle.

Katya  07:24

Yeah, reading this book for me actually has been very helpful. Because I feel like I just needed the reminder, I feel like I've been so focused on my physical health, and my mental health. And I've been trying to deal with that by stretching and meditation. But actually acknowledging that my social health is another part of my life that I can work on to help me get through it. Because the book mentioned that people who are in healthy relationships, and who experience physical pain, experience less suffering when they have strong relationships, than if they were to experience the same level of pain by themselves. Yeah. And so if you're starting out with long COVID, something to be really mindful of is that you will not be able to actively maintain your relationships like you used to. So you need to find ways around that asking for help asking people to come see you. Video calls...

Hannah  08:22

Yeah, totally. And what I find is that there are some relationships and interactions that are actually really draining. Whereas obviously, there are others that are really, like rejuvenating and fulfilling. I have noticed that my tolerance for those more draining interactions is less. I really feel it in my body after having conversations with particular people. I'm like, wow, I now feel like the my beans for the day have been like, wasted on this person. (both laugh)

Katya  09:02

 And I thin one of the reasons that I think that's hard to initiate is because it feels like you're asking people to like, give more to you thanyou're giving them - it doesn't feel like you're meeting them halfway. It's like, I'll just stay here on my sofa, and you guys will come to me, you will make the effort, please. And its really hard to ask that, isn't it?

Katya  09:02

And no, I mean, I'm completely the same. It's hard, isn't it? Because obviously, like I'm in no position to give anyone advice, because I like feel like I'm constantly on the edge of like, complete meltdown. But I was feeling really sad this week, because it has been a whole month since I have seen a friend face to face because of my Christmas illness. Luckily, I was able to talk to my parents and Matty about it. And my mum was like, Oh, well, why don't you invite your closest friends over for dinner one evening, they can come here, we'll do all the cooking and we'll go out. I was like, great idea, mun. And then my partner Matty, he said, Well, Katya, why don't you send a message to your uni girls now and ask if they can do a zoom call tomorrow.  So I put that in. And it was almost like I had gotten it into my head that because I didn't have the energy to go out. I just can't see my friends. And so then just being reminded by my family and partner that there are other ways for me to socialize. Yeah. It was like, oh, yeah, you're right, like I can do that.k

Katya  10:31

It is. But then I was reading online ... people have lost friends over COVID talk about other people not understanding their illness. And I was thinking, Well, it took me at least four months to accept that my illness was real, and to stop fighting it, and that's me in my body, experiencing it. So explaining your situation to friends and family and asking them to help, you know, keep an eye on you and come and see you.... they're not going to understand! They may never understand! But that doesn't need to stop you from getting the social interaction that you need to be happy. I don't know, I just, that was pretty much what I wanted to put it in hand, because I feel like that explains why we're doing this episode.

Hannah  11:16

Puts it in context. Yeah. Yeah.

Hannah  11:19

So we're going to talk about the impact that having long COVID has had on our relationships, but we're going to structure it in terms of partners, then family then friends.

Katya  11:34

My partner, Matty, we've been together for over 10 years now. And we moved in shortly after I fell ill with long COVID. So Matty has seen me before I got sick, and was really present for the day to day reality of my illness. We don't live together at the moment. But we obviously see each other every day. I wanted to talk to him before we recorded this. And I had this huge feeling of nervousness. I sat him on the sofa with a cup of tea. I was just like, Matty, how has my long COVID changed our relationship and and how has it affected you? And I was, I was terrified to ask this question. I don't know why. But it was also just I'd never asked him.

Katya  12:17

He said we do less together, we used to love being in nature. And we would walk for hours and go on holiday and have like little adventures. And an adventure could just be you know, on a non rainy day just going on a bike ride and seeing where you end up. And now it's like he goes and does all of those things by himself. So that's changed, right? Because we don't spend active time together. It's exclusively downtime. And then another thing he said was the emotional strain that it puts on our relationship. And I have sensed that, but I had only really thought about it from my perspective. But he also acknowledged that he worries about me being ill. And I worry about him worrying about me being ill. I feel like I swing between two things, I swing between wanting my illness to have the smallest impact on him possible. So I really encourage him to see his friends to go on holiday. And then the flip side of that is that he does those things without me and I have to find a way to not be resentful, but to kind of stay grateful for the time that he gives me because the truth is, is I wouldn't want him sat on the sofa with me for 12 hours a day, just so that I wasn't alone. Like, I didn't know, the way I have dealt with my long COVID in our relationship is for it to be kind of my problem.

Hannah  13:54

Yeah, totally. It's hard because when you're, you're kind of like partners in in life, you know, how do you still be kind of that little team getting through life together when like, I've had similar chats with my partner, Chris. Chris, and I've been together for four years, and he's met me pre COVID and continue to obviously love me and look after me throughout my sickness. We do a lot less stuff together now. But I think for Chris he finds it hard to go out and do the stuff we used to do by himself because he misses me like he's like, Well why I enjoyed them because we did them together. It then means that there's this whole chunk of his life now that's missing as well. Yeah.

Katya  14:43

And that's, that's both extremely touching. I was kind of blown away by the love that is still there and hasn't changed because it's kind of transformed into a sadness and I always feel like you know, that kind of sorrow is just the other side of of the love. We were so happy when we're doing things together. So of course, there's a sorrow when Matt is going on his walks alone.

Hannah  15:08

Yeah, it is. It's that double sided thing. Well, I'm, I'm his feeling sad because I'm missing out on that. And I'm on my own in the house. And he's probably feeling sad because you're not with him. It's just Yeah.

Katya  15:23

That's why I meant to you. This is why I said at the beginning why we shouldn't do this episode, Hannah, because it's too sad!

Hannah  15:28

It's sad. I think for Chris, like he has said similar things to Matty in terms of the emotional strain. You know, I think Chris is very, like, he'll keep it very contained. But I think he will worry about me. And I think he's quite vigilant. Like, he'll I know that he, he keeps an eye on me... not in like a way that like... (laughs)

Katya  15:56

When he's out of the house, there's a camera trained on you at all times, ostensibly for your health and safety. But who knows? (both laugh)

Hannah  16:03

Yeah, he's got like motion sensors everywhere, and... ha! But no, like, so I know that some of his time and energy goes into checking in with me and doing so much more for me. Whereas before, it felt like there was a real sense of equality between us in terms of our roles in the relationship, just really like small things. But you know, you have to negotiate that. And when you first get together with someone in terms of like, chores, and finances, and just all of the practical life admin that comes from being a human, and comes from living in the same space together, and I felt like we had kind of a very good balance.

Hannah  16:45

But now, I mean, all of those responsibilities fall largely on Chris, I'm always feeling guilty about that. And I do say to him, like, "I feel really, really bad that you're having to do all of this, and I'm just sitting here comatose on the sofa". But then he'll then be like, "Well, no, no, don't, you know, don't like don't feel bad, don't..." Because sometimes then in like a moment of brain fog, I'll be like, "I will help!" and I will. Like, I start trying to like tidy something or start panting up and down the stairs, trying to do laundry, and he'll be like, "Hannah, you're not helping just just go back to bed. Don't don't feel stressed you don't need to help me. Just rest". He's like, "I want you to rest. By trying to help me, you're making yourself worse. And also, you're not helping because you're literally just like moving stuff from like, one piece of furniture to the other".

Katya  17:40

It's just like, you know, when little kids try to help mom or dad with cooking. And it's just like, this is now three times more of a job! There's a video of my dad, if not a video, a photograph, we had this huge mound in the garden in my old house. And dad had a wheelbarrow and one weekend, Dad's whole job was to chop down this ginormous mound. And they got me and my little brother a baby wheelbarrow and baby spades. And so instead of dad being able to just load up an adult wheelbarrow, and wheel that to the bin and back, you had to load up a baby wheelbarrow, wait for us to potter off to the bin and come back. And it's just like, a five hour job became like, I think it took me more than a weekend.

Katya  18:25

But I'm sorry, just what you said about Chris doing all of the work. I once asked Matty if he felt like a carer. And he said no, but I think that's just because I'm not ill enough for that if that makes sense. But I do have this huge anxiety that he would ever see himself like that because the truth is that he does all of that kind of stuff.

Hannah  18:49

Yeah, definitely. Whenever someone in a relationship gets ill it will always inevitably change the dynamic and yeah, when the other person has to take on.... I mean,even though Matty says he doesn't feel like a carer there is an element  of caring that he is doing.

Katya  19:06

He has washed my hair before so yeah!

Hannah  19:09

yeah yeah whether he says it or not, he is your carer in a sense!

Katya  19:14

Sit down, you are my carer! (both laugh) It's like the promotion you don't want to have!

Hannah  19:23

Well, yeah, exactly. I think one thing that Chris said which was really nice was he was like, "Well, you know, you're still you" and like, even when we are just hanging out on the sofa, watching TV and like not really doing anything. We still laugh we still giggle we still enjoy the same stuff, but we just do things that are like sitting down. If I'm feeling sharp in my mind, but tired in my body will say we'll do like a crossword together on the sofa.

Katya  19:53

We've played Scrabble before. And it's like, if I have a clear brain day I'm bad but if I don't I'm like 'cat', 'dog', 'tree' and Matty's there like 'xylophone'.

Hannah  20:09

It's like, I'd be so fascinated to see who wins between Chris and Matty, because Chris is so good at word games. He like, kills.

Katya  20:17

I don't know if Matty could take it, I think Matty already said to me that he thinks Chris is a better long COVID boyfriend than he is. He was like, I think we were listening to the first one. He was like, "God Chris just sounds like a saint!" So I don't think he can handle like direct competition.

Katya  20:42

Something  I really wanted to say was to touch briefly on intimacy, because intimacy takes up an enormous amount of energy. And I have very little energy in general. And I think something that I have, I guess, gotten better at now that I know this is long term is giving Matty my energy, because at the beginning, it was like, Well, I've loved you for nine years, you will always be there. So I need to give all of my energy to work and my friends and things that I could potentially lose, if I don't give it attention. And so intimacy was something that I really struggled with the beginning at the beginning, because , you know, say, I gave Matty my time and energy in a morning. And that is a euphemism. For me, I would then risk spending the rest of the day lying down, and I wouldn't be able to do certain things. Whereas for Matty, it would just be, you know, time with a loved one. And then he could go about his day. And trying to work out when it's worth it. Like we've had times where I will be sat there desperately trying to do the maths. So like, Okay, well, if we're intimate, can I still have a phone call with my cousin at 3pm? Like, it's the least romantic thing.

Katya  22:08

It's really hard to navigate, then it's also what message does it send if... oh there's a quote I can't remember where it's from! It might be from a film, but I remember reading somewhere that love and attention are the same thing. And if I'm constantly showing him not even with words, but just with body language, that I can't give you this energy because I need it for other stuff.... I think it took me a while to realize how damaging that was. . And I definitely feel like I put him first more than I used to now.

Hannah  22:39

Well, you know, it's, it's like what we said in our self care episode about the three P's and how when you're pacing, planning, prioritizing with the prioritizing one you just got to make really tough decisions every day. And then also you kind of make mistakes, don't you? You prioritize wrongly, or just in a way that doesn't feel right. And then you learn over time, what is worth it, what's not, and I've had that where I mean, I know that I always prioritize work over everything. Because I just I find my identity is my work, I find it really difficult to step away from it. But over my time with Chris, he was really, really good for me. And it really helped me to start kind of compartmentalizing much better and prioritizing my personal life as much as I do my work life.

Hannah  23:36

But yeah, long COVID has just put a spanner in the works now. Because it's like, well, you either put your energy into relationships, or you put your energy into holding down this full time job that supports you to survive. That's a really tough choice. It is. Yeah, that's tough, and I've definitely done things where I've been too much of a perfectionist in my job of work too long. And then because of that, I've then had no energy to , engage with Chris. And then I know that's really hurtful to him. You know, he doesn't kick up a fuss about it or anything, but I know it does. You know, if I did that all the time, it would be really damaging.

Katya  24:18

Yeah, it is. It's interesting to think about the three Ps in terms of a relationship like yeah, because I feel like they make so much sense when you talk about things like doing the shopping or work.  But when it's maintaining, you know, a profound friendship and a romantic attachment to someone. I mean, planning! When do you sit down and plan when you're gonna show someone affection and prioritize how you do it. And how do you pace romance? (both laugh)

Hannah  24:53

Oh, definitely. It's an absolute minefield. It takes the spontaneity out of anything. And yeah, it is really difficult

Katya  25:03

But now I'm thinking about it, it's so important to talk about because I remember ages ago watching an interview with a woman who had lost her legs in some kind of accident. And one of the things she was saying was - she was a young single woman - was that she really missed intimacy. And before her disability, she was an active partner, and she was spontaneous and passionate. And this illness had transformed her into someone much more passive when it came to dating and intimacy.

Hannah  25:37

I think we're both really lucky in that we have got long COVID and we are in long term relationships. Yeah, I'd be so interested to know how people are navigating the dating world with long COVID If people are even trying, you know, and if you do have the beans to go on a date and meet somebody new, how do you go about, like I said earlier, that process of yeah, when you negotiate the relationship, negotiate expectations, negotiate the time that you're giving to each other? How you go about doing that when you have long COVID?

Katya  26:10

Yeah, I mean, if someone's like, you know, "My hobbies are rock climbing, and I'm looking for a sporty partner". (both laugh) Yeah. I was watching this really silly show on Netflix. I watched it and  it's this woman who teaches people about etiquette, and she drops in dating tips and stuff. And one of the things she was saying was to guys on Tinder. She was like, "You need a photo with your friends. You need a serious looking photo and you need a sporty photo". And I was just like, but "what if you have long COVID? Or like what if you are not sporty?" I'm pretty sure if you're like a massive computer nerd...!

Hannah  26:48

 I have never been drawn in by a sporty photo. I'm sorry.

Katya  26:53

I know Me neither. But I think that's my own prejudice though. I just assume that they are a rugby lad and they're going to... I'm just not a fan like give me the quiet nerd who reads a lot.

Hannah  27:02

Yeah, definitely. Chris, when he was younger, like before he met me. he would go and read in coffee shops or take his favorite book along in the hope that some would be like, Oh, what a cool book you're reading and then he would know that if she'd read the book then they were probably gonna get along (both laugh)

Katya  27:23

that's so great! I guess it depends on the book you're reading right?

Hannah  27:26

Yeah, I'm thinking was you bring along like Gabrielle Marquez or something high brow. .

Katya  27:31

Okay. Something like you need something academic but not like too.. like if you're reading Ulysses. Yeah, no one is gonna be like,

Hannah  27:40

yeah, exactly. You definitely need that right balance. Otherwise, it's like mate, you're not going to pick up anybody...  reading Beowulf or something (both laugh)

Katya  27:54

Like you know that the Lord the Rings books that no one reads... the Silmarillion ... it's like you need to be really into Tolkein

Hannah  28:03

Yeah. You to be at like a Lord of the Rings symposium for that to work

Katya  28:06

 it's like you speak elvish and this is your book (both laugh)

Katya  28:11

Do you do you have anything else you want to say Hannah about?

Hannah  28:16

No, I think I covered what I wanted to say -it  was that we do less together and Chris misses that and then there's that emotional element of worrying about me and then Yeah, me worrying about him worrying about me which you capture.

Katya  28:30

And now I'm worrying about you worrying about him worrying about you! (both laugh)

Katya  28:38

we should probably just do a shout out all of those people who love people with long COVID

Hannah  28:43

My goodness yes.

Katya  28:45

Thank you for cleaning our disgusting rooms and unplugging this shower after we wash our hair

Hannah  28:51

and cleaning the toilet.

Katya  28:53

Yeah, picking us up off the floor and telling us it will be okay.

Hannah  29:00

Oh my god and keeping me fed. Honestly, I would be an absolute mess without Chris... when I'm left to my own devices now I just live off toast and snack bars and stuff. And there's something about having vegetables that just changes the way you feel. Yeah, on our website I recommended though these like vegetable like food pouches that you heat up because...

Katya  29:21

You're like an astronaut! It needs to come in to pack and I need to be able to put it in my mouth with basically no effort. Yeah, I don't have to chew that's even better. (both laugh) Yeah, Hannah's like just like an astronaut apart from like, all of the intense physical training they go through.

Hannah  29:42

If I was just sent up into space with the same role as like, you know that dog, if I just needed to be there.

Katya  29:50

I think the dog does more stuff right. (both laugh)

Jingle  29:56

I'm having a good day.

Katya  29:58

Okay, so we're going to move on to family. Do you want to go first Hannah?

Hannah  30:07

I would say with my family, I'm just not able to give them the same amount of time that I used to be able to. So I meet up with them less. And when I do meet up with them, they have kind of learned that there's a lot of stuff I cannot do now. So when we meet, it's very much sitting down having a chat, them cooking me something to eat. So I'm not meeting up with my family, being able to kind of do all these lovely day trips out, or, you know, any of the stuff that we used to do. So that's definitely changed things.

Katya  30:41

You also don't live with your family. I mean, so it's like you have even more effort.

Hannah  30:48

I know, my parents live in Guernsey. So, um, I feel really intimidated by traveling. So they have come to visit me. But I think since I've got long COVID, maybe I went to Guernsey once, but I mean...

Katya  31:03

I haven't been on a plane either. I haven't been on a plane since getting on COVID. And the thought of going to an airport standing in a queue that I don't know how long it's for... then getting on a plane where if anyone else is sick, I'm sick with potentially catastrophic consequences. I just...

Hannah  31:21

yeah, I mean, I haven't either. I really cannot actually remember that I have traveled since I got it. It just really scares me. There's just so many steps involved. So I'm just quite reluctant to do that.

Katya  31:34

Also, because you get there and you then have to do stuff. It's not like you can get there and then take a day off to recover. It has to fit in with your life schedule and your work. Yeah, makes the downtime really hard. Because it's like, yeah, guys, I've come over to see you. But I now need a day to recover from my journey.

Hannah  31:51

Exactly, exactly. And you know, because they're my family, like, I can just kind of be in the same space as them and not do anything. But there is you know, because we see each other so little now, they do want to do things with me, they want to chat we want to catch up and, and I want to do all of that as well.

Katya  32:11

That's really interesting, because that's the opposite of what I have with my parents, because I spend so much time with them. So I've I've just moved back in with my parents, they make it so easy for me to be with them. Because they're seeing me, they live with me, they know what I'm like, I have no pressure from them. Theydon't want to catch up because they see me every day. Which is great because I also don't have the beans to catch up. I can be alone and spend time with them. But in a way that for me, it's like  full time resting. Whereas seeing members of my family who haven't seen me in a while, requires an enormous amount of energy. I'm trying to say that I imagine that's what it's like for you. Except it sucks because they're not your distant family like they are for me, they are your parents

Hannah  33:02

Yeah, yeah, definitely. And we are such a close family. I think as wellwhen I know that my family are together and with each other. And I'm not there. There's that feeling of missing out. And it is... I know we've we've talked already about that feeling of loss that comes with long COVID with like, yeah, there is that feeling of loss and me where it's just likethat quality time with my family is just it feels like it's quartered, you know?

Katya  33:30

You like your fractions.  if anyone's listening to this episode, I took out your halved and quartered bit (in episode one. Hanna says that her activity levels were like halved or quartered by non COVID) because actually I feel like things aren't quartered with long covid but I feel like things aredecimated. But it would be really weird to be like, oh, yeah, it's like 8%! You're really close with your family. It's not quartered, it's it's less,

Hannah  33:57

it's probably less (laughs)

Katya  33:59

What a nerdy thing to say! (both laugh)

Katya  34:03

 Something I really wanted to say is I feel like my parents have learned a lot. I had a really amazing moment with my mum ages ago because my mum has always been very, like quite English. And over my long COVID and my illness I would have, I still do, but I have like crying days where I cannot stop crying and it like it will come and it will go but I'll probably like just be crying and I get through them  -saying it out loud now it doesn't sound super normal, but it's like I'm used to it. Yeah. And I had a crying day where mum and dad were in the house. In the morning I just kind of like hid from them like going from room to room. And I just couldn't do it anymore. And my mum came into the dining room. And I said to her "mom, I can't stop crying but like don't worry!". (both laugh)

Katya  34:58

And my mum bless her - she was amazing. She sat down, and she took my hand and she said, "Oh, that's okay Katya, everybody feels sad sometimes. And do you want to talk about it?" And she was so obviously going to stay there. I think I said to her a few days later, I was like, "mum, that's really I'm so impressed. Because, you know, you grew up in a time when, like, mental health wasn't a thing". . And she gave me a hug. And she was like, "oh, yeah, well, thank you. You know, it's different for me, because I was never really taught any of this stuff". And I just, yeah, my parents have done a very good job. But ya know, and obviously, like, my little brother, Luke has just been amazing. Honestly, everybody needs a Luke. I feel like if you have long COVID you need a buddy who is happy to just sit there. And like, watch afilm with you and play a computer game with you. But if you don't want to play, that's totally fine. And if you don't want to speak, that's also fine, because he doesn't really speak that much, either. He's like, right here. Can you see him?

Hannah  35:20

Hi, Luke.

Hannah  36:06

Yeah, well, I think actually, like, I would like to say how my family are really taking time to try to understand the illness. I know that my parents have been reading about long COVID and looking into things that might help me and sending me stuff. And yeah, that's been really, really helpful. And it's that thing of, you know, they live far away from me. And they, they're not there to kind of see my day to day kind of existence with long COVID But they are doing their absolute best to help me.

Katya  36:39

Your face lit up! And you look really cute. You look like a little kid.  obviously, because no one will ever see Hannah, which I actually think is a really good thing and I think it will be like a thing. But you have a very cute girly face.

Hannah  36:55

(Laughs)

Katya  36:55

Hannah has a very cute girly face, you're like a little V and then like a big kind of forehead. Oh, people are gonna be like, What is this?

Hannah  37:03

Like some kind of alien (laughing)

Katya  37:06

Like Hannah, also, we should say Hannah. Hannah is long sighted. So Hannah wears magnifying glasses. You have like a Luna Lovegood vibe

Hannah  37:15

I do I have Luna lovegood vibes

Katya  37:19

And I guess Hannah floats around and sighs a lot.

Hannah  37:27

I know I sigh like one of the women in a poem that Keats wrote or something.

Katya  37:33

You do. You're like, you're like, you know,what now totally get in Pride and Prejudice. Catherine De Burgh has a daughter called Anne. Yeah, and for some reason that is never explained Anne doesn't do anything and it's like "Anne could have been a great pianist if it weren't for her health". And then in the Keira Knightley version the camera just zooms in on Anne who basically is like the palest looking woman you can imagine and she just like looks at the ground. I'm watching it now like "Dude! Guys! Anne has post viral fatigue! Let's give Anne a break!

Hannah  38:12

Yeah leave Anne alone oh my god there's always that that female figure in those books of kind of the ill reclusive usually unmarried woman where I'm like, oh my god, guys, there must be so much shit going on under the surface for that person. (both laugh)

Katya  38:33

Hannah and I did English Literature at uni.

Hannah  38:36

we spent a lot of time being outraged at the female characters.

Katya  38:42

And their sad miserable lives but the most exciting thing was like "Pemberley is let at last". It's not Pemberley it's "Netherfield is let at last".

Hannah  38:52

Oh yeah, "Netherfield is let at last!"

Katya  38:54

(laughing) Oh my god! No way! Ring the bell!

Katya  39:01

Okay, should we go into friends How has long covid affected you and your friends. Do you have any other friends Hannah? Or is it just me? How has long covid affected your relationship with me? (laughs)

Hannah  39:10

I was just living a lonely life until my one friend finally got long COVID as well.

Katya  39:14

So I got long covid And then I had no friends and then Katya got long COVID And now I have my friend back. (both laugh)

Hannah  39:24

 I think we should say this actually, is that me and Katya met at uni but we were in different friendship groups. So when we would meet it would always just always be us two. And I kind of like that because I just got you all to myself.

Katya  39:37

But I was really jealous. This is gonna sound so creepy, but you had a best friend in the first year of uni because you were one four or two floors above me. And I immediately liked you.  I can't remember when we met but I think it would have been walking to class or something. I was like, Oh, I really like this person. And then you already had a best friend and I remember being like, oh!, And somehow, which is it's gonna sound strange, it's like how is it somehow? (but we literally all just became friends with the people on our floors!) Somehow we had like inter-floor friendship.

Hannah  40:15

Yeah, we did, didn't we? We reached across the void. (both laugh)

Katya  40:24

 an unlikely friendship

Katya  40:28

Do you want to go fast?

Hannah  40:29

Yeah. So we probably have quite different experiences to talk about, really, I have friends from different parts of my life. And I found it difficult before COVID to like, keep up with everybody. And now I see people so little, I am so amazed that I still have friends. Because like, I just cannot, I cannot see them very regularly at all. And it's easier to talk to people over FaceTime or zoom or something. But it's just not the same. Like everyone knows from locked down. It's just not the same. And it's just it means so much to be able to see people face to face. It's

Katya  41:09

I was gonna be like, because you have a very distinctive smell. If I can't smell Hannah, how do I

Hannah  41:16

How do I know it's really you?(laughs) , yeah, it's a lack of pheromones ...

Katya  41:22

It is right! You know, there is something there.

Hannah  41:25

Yeah, there's Yeah, I don't know. It must be in our evolution or something.

Katya  41:30

But yeah, 100,000 years of face to face contact versus what is it? 10 years for us of like video conferencing? It's yeah, quite a lot for the body to suddenly adapt.

Hannah  41:43

It's not the same. The face to face contact. It's like I love it. But there is more taken out of me. It's like, okay, how am I going to get there and back? And yeah, then when you haven't seen somebody in a long time, or you've put the effort in to go and see them, or they've put the effort in to come and see you, you then feel like, oh, we should be spending a good, you know, few hours together in each other's company. But it's quite hard when I'm like, Oh, I really feel like I've spent all my beans and we're like one hour in. And I'm starting to feel quite glazed over. And yeah, I feel like I'm really not able to give as much to this interaction anymore. And I feel for one thing, I feel like I can't meet up with my friends and do a fun activity together. And I then feel as well, like, I walk away, worrying that I wasn't really like my best self. I bet I wasn't as like, I don't know,  fun or quick or, you know, I mean like, yeah, I just worry that like, Oh, I hope I'm still the friend that they once knew that they're not like, Oh, that was a dull time with Hannah. She said like two words.

Katya  42:49

It's not always that you can't be your fun self sometimes it's that you can't be your caring self. Because I have times when I've seen a friend. And I've seen that they're in need, and they really need to talk about something. But I'm at the end of my tether, and I can't extend that to them, because I risk them opening up to tell me about something serious. And I'm like, looking at them through brain fog. And they would know! It's not only that you can't be your best self with your friends. And that in itself brings with it all of the guilt and the worry. Are they still going to want to be my friend, will they want to see me next time, do they think I'm disinterested? But it's also like, you can't be there for them in the serious times?

Hannah  43:32

Oh, definitely. Yeah. Because it takes emotional labor, doesn't it?

Katya  43:36

Because you're meeting them halfway, right? If someone starts to talk about something sad, you need to get down in there with them and actually relate. You can't do that on a surface. And you definitely can't do it when you're not speaking and you're just nodding and like trying to remember your breathing technique.

Hannah  43:53

Yeah, exactly. So, yeah, it's, you know, it just means that I'm not able to keep up with my friends as much as I'd like to. And then I feel because of my fatigue. I do feel like the quality of those interactions has changed. Which is really, really sad. Sucks. But yeah, I mean, I thank my lucky stars that I am a very introverted person anyway. And I'm very happy being on my own. I get a lot from seeing other people, but I can go for a long time without social interaction. But I know I'm, I'm really like very, very introverted. In comparison to a lot of people, socializing with friends and texting friends and communicating with friends is something I really have to actively remind myself to do. Or like, Mmm, it sounds really bad. I don't know if I want this stuff to be kept in!!!

Katya  44:52

No, no, I think it's, oh my god. I think many people are like this, Hannah. It's just that the loud ones are super visible. For every one person who's standing on a chair yelling, you'll have 50 people around them listening. It's just like, where are you in this picture?

Hannah  45:06

Yeah,

Katya  45:06

it's funny that you think that I'm sociable and extroverted. Because I have friends who think that I'm introverted and fairly antisocial. I have friends who see people every single night. And if they don't see at least two people in a day, that's a bad day for them.

Hannah  45:26

Wow.

Katya  45:27

So it's, it's a sliding scale. Like, I need to see someone who is not a friend  once a week. Maybe twice a week. So if you're once every two weeks or once a month, you're slightly further down the scale. Yeah, you're not like "every decade. It's nice to know that other people are at least still there." (both laugh)

Hannah  45:52

I'm not like a hermit in the mountains or anything.

Katya  45:54

You're not as different as you think you are, Hannah.

Katya  45:57

For my friends. I feel like I've had two different experiences with long COVID. I feel like I have experienced an unconditional love from my oldest friends. Yeah, my oldest friends have adapted to my illness in that they are willing to come over not wanting anything from me. For example, if you come and see me, we will only have takeaway pizza. So some of my oldest friends will have had takeaway pizza every night for a week. And then at no point has anyone been like, I'm sick of pizza.

Hannah  46:29

Gosh, Katya feed us something else (both laugh)

Katya  46:34

Yeah, so I feel like, it's, it's not that anything is ever a test. That's really messed up. They have proven that they love me, even if I'm not myself. And that's something that I don't know, it gives me a lot of confidence and security moving around in the world. Because I've lost friends because of my long COVID. They were not really maybe friends, someone who maybe I was really close to because we were in a specific situation for a specific period of time. But then because of long COVID I couldn't see them, you know, and during my worst moments, I probably wasn't messaging them. And then there comes a point when I haven't returned your calls for six months. And I'm now too ashamed to like, reach out and try and figure this out.

Hannah  47:21

Yeah, I totally relate to what you're saying. I know that there's people that I haven't replied to or people I haven't, I just haven't communicated with. And I know that it's probably on me, if I go back to those WhatsApp chats, I'd be like, I'm, it's me that didn't reply. And I feel guilt about that. And I have got a few people in my mind where I'm like, Oh, my gosh, I need to sit down. And I need to give some time and energy to write a proper message and be like, I am really sorry. Yeah. Yeah, yeah, I've, I've had, I've just been, I hadn't

Katya  47:59

Yeah, cuz I think the thing with my closest friends that has helped us maintain that relationship is because we were so close already. I had no difficulty showing them my illness. Because we were already so close. They saw me at my absolute worst. So they were then of course able to rearrange themselves and how they interact with me. Whereas for all of my friends who I was less close to, I didn't explain to them about my illness, and I definitely didn't show them my illness. Yeah. And so it's funny because in promoting the podcast, I've been shamelessly messaging everyone I know, some people to be like, "Hey, I haven't spoken to you in a year. But I've been really ill. And I remember, I remember you, basically, and I would love you to listen to this and know where I've been". And everyone has been, if not amazingly warm and understanding. They just haven't replied! I want to say something positive. But the truth is, I've either had like, "Oh my God, no problems. So great to hear from you. So sorry, you're going through this" or just

Hannah  49:10

or just silence? Like, okay, then. (both laugh)

Katya  49:16

You know, long COVID has forced me to accept actually that not everyone will like me and I can't control that. I can't be the perfect friend for everyone.

Hannah  49:25

Yeah, you're not going to be able to maintain every friendship that you have. Unfortunately, there's so many competing things. And if you were used to maintaining, like a really wide Friendship Circle, you can't do it

Katya  49:41

What would you do? Like wake up on Saturday and give everyone five minutes of your time? No one wants that!

Hannah  49:47

Yeah! (both laugh)

Katya  49:48

Did you have anything else Hannah you wanted to say about friends?

Hannah  49:52

No, I was actually I was gonna say that I've had. I've had some friends in particular who have really been so kind in terms of demonstrating to me their understanding of what I'm going through. I felt so touched recently because one of my friends is getting married, and she messaged me about her hen. Because the hen is going to be abroad. And she just gave me options, just. And she she even said, you know, do you want to be invited into the WhatsApp group? Do you want to think about it? you know, there's no pressure for you to come or not come or be involved or not. And she was just, it was just wonderful. Like, it was just such a nice text to receive. Because if if all she done was just say, "Hey, I'm having a hen do in this place in Europe please come" Yeah, I would have been devastated. Because obviously, I can't go. And then she said," If you can't come, we can figure out another time to see each other before the wedding". And yeah, it was just like, oh, wow, I hope that people who who people who are friends of someone with long COVID Like, take a lesson.

Katya  51:02

Yeah! Take a lesson bitches! (both laugh)

Hannah  51:05

Yeah, just reaching out and giving choices and already acknowledging my illness. So that then I don't have to be the one to raise it. And be like, Oh, actually, I'm really sorry. Because of my long COVID blah blah blah blah (Katya laughs)

Katya  51:19

But she could only do that Hannah, because you'd already told us her about your illness

Hannah  51:25

Oh my god, actually, that is so true

Katya  51:28

 Like, my I feel like with my illness and my friends, like, I'm sure I have many people who are just like, Dude, why didn't you tell me! I would have been! Yeah, I would have come over! I like pizza!

Hannah  51:42

 Yeah, cuz they can only be responsive to your long COVID If you were honest with them, about how brutally shit it is for you right now

Katya  51:49

Yeah, it can't be like a little secret. And then why didn't you read my mind?

Hannah  51:54

Yeah!

Katya  51:55

Yeah, yeah, just speaking of amazing friends... One of my friends, I had explained to her that I had no beans for a conversation, but I really wanted to hear her voice. Then she left me this seven minute Voice Note. That was just...  it was so mundane. Shopping and walking the dog and... it was the best thing ever to listen to, you know, like, oh, yeah, one of my friends has a voice that's like singing. I just had this like singsong voice in my ear. I think I listened to it three times in a row just lying in bed. Like, I can't. It was like "So I know you can't speak but I thought I'd take you through my day."

Hannah  52:39

That's lovely.

Katya  52:41

Cute, right?

Hannah  52:41

That's really cute.

Katya  52:43

I'll send it to you, Hannah. Maybe I should make it available for free on the internet. Like do you need a friend.

Hannah  52:50

Do you fancy a friend with a melodic voice? Telling you about their day? Yes. I do. Yeah. Yeah.

Katya  53:01

Really briefly, I just want to mention that I made some new friends with my long COVID.  They are 86 and 89. And our energies and pace of life match perfectly. And they are my neighbors and I'd go for a walk with the older man because he's the only person who walks at the same pace as me and then stops and has a cup of tea and I'm like, "Yes, I'll stop for a cup of tea". Yeah, and they invited me over for a cup of tea one day and we just sat in the garden and they actually like had to make me leave I was that comfortable. They were like ...wow, it's getting late. And I was like...okay then...

Hannah  53:49

oh, it kind of sounds like you know when like cats decide that they just want to move in with someone

Katya  53:59

The cat's Hannah where my parents live. I don't know something about Surrey cats they are the happiest creatures in the world. One cat who I always pet saw me through the window. And I waved at it and then he ran straight to the door. Through the window I didn't even know they could see through windows! So I opened the door and had a little bit of time with a cat.

Hannah  54:22

that is very, very cute

Katya  54:24

friends everywhere.

Hannah  54:25

Yeah, indeed. Honestly, having my cats has been a huge, huge support for me during long COVID Because they are company and they are something to focus on. Yeah, since we're talking about relationships. That's really sad. But yeah, my relationships with my cats.

Katya  54:42

I think we should do a whole episode on long COVID and pets. There was some... I don't know what it was. There was something I saw on Twitter. That was a picture of a cat lying down in a pseudo scientific article and the title was, 'Does your cat have long COVID?' And this guy's response was like, "my cat slept for 18 hours a day before COVID. He sleeps for 18 and a half hours a day after COVID. Like, I think he's just a cat". Yeah. (both laugh)

Hannah  55:11

But I think that is what you said about having relationships with someone is gonna go at your pace. Yeah, I will sit on the sofa for hours in the evening and not move and my cat Tinker will just sit next to me the whole time. It's lovely.

Katya  55:26

Like Luke

Hannah  55:28

Luke or a cat?

Katya  55:31

You can't stroke Luke. he's vicious, careful, he bites!

Jingle  55:39

I'm having a good day.

Katya  55:41

I think something to mention is just, you know, if you're going through a chronic illness, and you're experiencing a breakdown in relationships, or a diminishing of your relationships, just be mindful that you need to maintain them, like you would, you know, continue taking vitamins or fruits and vegetables, it might just be that you need to get creative with them. So people say post pandemic, no one wants a zoom call. But actually, you might need to ask your friends to zoom call, because the alternative is just not seeing them. Or my friend who sends me voice notes. Just every time I receive them, I feel it's like an audio hug. Or I was thinking - writing letters to people. You just need, you need to find some way to make sure that you have some people in your life. No one should be alone

Hannah  56:37

 I was gonna say that I find the reaching out and then the whole process of organizing when people are going to come over and like planning my calendar and stuff quite difficult at times, if I had a friend who could just be like, oh, yeah, I'll organize some of us to pop around to your house. Just tell me when you're free. And I'll I'll do the communicating with everyone to make it happen.

Katya  57:03

And you don't need to feed us. And please do not tidy up your house before we come around. We will come see you and if you are lying on the sofa, and there is no food. That is absolutely fine.

Hannah  57:19

actually, that's so true. The thing about feeling like you need to clean your house before people turn up. I've definitely had that. And I've definitely apologized to people in advance being like, I'm really sorry, please expect my house to not be particularly clean or tidy. But then I've then gone and tried to do at least something anyway. It's just so ingrained

Katya  57:41

 But that pressure stops you from asking people to come see, right? Because you feel like you have to tidy your house. And so, it's about giving people the chance to show up, isn't it? It's like, "Well, I'm really ill. But I really love you. And I'd love you to come and see me. And it will be messy and it might smell. Will you still do this?" And most people will say "yes". You know, it's just hard to ask.

Hannah  58:03

Yeah.

Katya  58:05

Did you have anything else wanted to say? Or how are you doing energy wise?

Hannah  58:08

No, I think I'm probably ready to wrap up because yeah,

Katya  58:14

Let's stop

Hannah  58:15

it was really nice chatting to you about it. And it was sad, but not like too sad.

Katya  58:20

All right. That's that and... Aaah! I've been sitting on my knees for an hour and a half.

Hannah  58:27

You've been on your knees!

Katya  58:29

Yeah, I've been kneeling!

Hannah  58:31

I didn't realize this, I could only see like your top half! You're on your knees.

Katya  58:39

Like I imagined at some point that was pain, but you can completely get used to pain and like, and then you move on. It's like oh yeah!

Katya  58:51

 Thanks so much for listening to this episode. I really hope you enjoyed it, and that you join us next time when we'll be talking about the impact long Covid has had on our bodies and how we think about and relate to them.

Hannah  59:02

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to boundedenergy@gmail.com Or find us on social media at bounded energy.

Katya  59:14

And yes, that is me singing the jingle. A huge thanks to Harry Gould, the talented musician who lowered himself to produce it and EllieAtkinson, the illustrator who made our rather joyous logo

Episode 4 - Work

Bounded Energy

Episode 3 Work

SPEAKERS

Hannah, Katya

Katya 

Hannah when you said 'meet at 5', I thought that was like a... you know 'I’ll message around 5 and... we can agree' but you were here and i was just sitting on the sofa in my underwear... (laughs)

Hannah 

Oh, that is!... (laughs). To be fair -that's usually what I mean when I say that! Yeah, but then I was just here at five like, I'm ready!

Katya 

How did your MRI go? Oh no! I do this at work as well, whenever I know someone's had a medical appointment, I'm always like, how was it? Whenever someone says, I have to go to the doctor's. I'm just like, why? But I can't ask that.

Hannah 

I do that!! And I say - Oh, I hope it goes well. And I'm like... what? (laughing)

Katya 

Once I told my friend at work that I had to get to a doctor's appointment. And he was just like, how come? And I was like, Oh, just like a swab, a swab test, like a cervical swab. And he was just like, what's that?  (laughs) And I said Ask your wife. Because all of our conversations are recorded. I really don't want to say vagina on the work Zoom call. I'm pretty sure that would flag.

Katya 

(both laugh) Jingle plays: 'I'm having a good day! (minute/hour/week). What to do & how to be with the beans given to me, me & my bounded energy. -sigh-

Hannah 

Medical disclaimer: we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya 

Hello!

Katya 

Hi! Good see you.

Katya 

How are you?

Hannah 

Oh, I'm okay. I had a long working day yesterday. So yeah, all evening. I just had a really big, big headache. So hence I was texting you very short replies because concentrating on the screen was just kind of making my head throb.

Katya 

Oh, yeah, did we message yesterday? only briefly. only briefly.

Hannah 

Yeah, you sent me loads of stuff with like, really exciting information. And then I just could only respond with a couple of phrases and I wanted to say more. But yeah...

Katya 

Honestly, it's fine. I had. Oh, yeah. So I’m not sure if I should do this now but this podcast is the thing that's getting me through everything at the moment. This week's been kind of rubbish and I had really sad moment the other day and I sat and cried on the sofa. And then I played our trailer. And it just made me smile!

Hannah 

Yeah. I listened to our trailer too on my way into work the other day, and it made me feel a lot better.

Katya 

But yesterday, I don't know if you've had this but I haven't had it in a while.  I'd had a normal working day. And then at five o'clock probably after I'd sent you all those enthusiastic messages, I had a fatigue attack. I basically lost speech and couldn't stand. I was signing to Matty to basically explain, like, can't speak / exhausted. And just the fact that it suddenly came over me and I went from walking around the flat cooking and talking to myself to just lying on the sofa stunned. And I had dinner at six and then at, 6.15 I literally went from the sofa to my bed. I didn't even brush my teeth. And yeah, and I woke up this morning feeling obviously much better because I'm speaking but just feeling rough. Have you ever had anything like that?

Hannah 

yeah. Yeah, it's kind of like you just hit a brick wall very suddenly. Yeah, and there is no warning, and then you're just totally taken out. It's literally like, I don't know, some invisible force has just rugby tackled you to the sofa. So then you're just there, like Oh, shit.

Hannah 

I really get the difficulty with trying to explain it, it feels like it's really hard to put words to it. Yeah, I mean, did you have anything accompany it like did your breathing or did your heart rate go weird?

Katya 

Suddenly breathing got worse than normal. Yeah, I had heart palpitations, but I have them fairly frequently. So lately, I guess this is weird, I just been haunted by the thought that I might suddenly die before the podcast comes out.

Hannah 

oohhh!

Katya 

 I've gone from like, when my illness was really bad feeling like, well, you know, maybe I'll die. And that will be okay. And now, I'm terrified that I will die before the podcast is done and out there! You know, just like, you'll see I added, an episode idea like long COVID and my body because I do want to talk about like, this sudden feeling I have at the moment of just not being able to trust my body.

Hannah 

Yeah, yeah. Yeah.

Hannah 

The complete loss of speech. That sounds scary. I haven't... I have my brain fog moments where I cannot get my words out. But then I'll just I'll take a step back, and then try to go at the point at a different angle and find the words I need. But yeah, I haven't been in a place like that, where I've haven't been able to kind of really communicate at all.

Katya 

I think. I think it's my lungs, because my voice has always been my Achilles heel. I had that time years ago, I lost it. I lost my voice for 12 weeks. So, I know that definitely a part of my body that doesn't...

Hannah 

I was speaking to a lady the other day who has long COVID and she was saying, it's like all of your physical vulnerabilities... long COVID Like brings to the fore. So maybe that is what it does. And yeah, it's like your voice is the first thing that goes

Katya 

so true. Anyway! How was your weekend?

Hannah 

Um, yeah, it was okay. All in all, I can't complain too much. Cuz I sort of I made it through the week without too much upset. I did a full, very intense working day on Wednesday. And then Thursday, I was working from home. But over the day, I started to just get more and more scatty. So yeah, for one thing, I just I started to feel more and more lightheaded over the day a little bit like I had a balloon inflating inside my head.

Katya 

Yeah, that's a great simile. Yeah, it is. Like that, isn't it? Because it's the airiness

Hannah 

yeah, it's like airiness. But then also this kind of pressure at the same time inside my head. And then like............ ugh I'm trying to find the words to say it cuz yeah, my words haven't been that great this week.

Katya 

I feel like we shouldn't be doing a podcast, I feel like we should be doing some kind of illustrated cartoon on the internet! I meant to tell you, when I was recording one of my little video intros, I was like, Hi........... And I meant to say, Hi, I'm Katya. But I kept forgetting my name. I'd be like, who am I? Who am I again? What am I doing? (both laugh)

Hannah 

- That's it! Okay. The point I was trying to make was, I would basically be like, oh, right, I need to do this task. So I'd open a window, or I'd get my phone out. And then I kept losing track of the tasks I meant to be doing. And I was kind of flitting between different jobs feeling really , Oh, I just felt a bit lost, really scattered. And after a while, I was like, right, I just, I need to call it a day. So I stopped the day early.

Katya 

I just remembered something I wanted to tell you. So Friday, I had the same thing. I was really scattered my brain was like poof!, and we have this new change we want to do at work that basically involves a really monotonous activity that could technically be automated. But we had agreed that I would do the monotonous repetitive task. And I had all these people being like, oh, I'm so sorry that we can't get this automated in time. It was basically pressing copy and paste 500 times, selecting, copy, paste, , select Copy, Paste. Anyway, my colelague's like, oh, yeah, so sorry, you have to do this. But I was like, Dude, this kind of mindless work is basically like the only thing I can do. Please don't ask me to actually think I can't. I had my Taylor Swift playlist ready to gom my cup of tea. I was just like, yeah, ...  (sarcastic tone) It's gonna take five hours. Oh, man. (both laughing)

Katya 

There was something I wanted to say before we start Hannah. Yeah. So I've been putting a toe into the world of social media. And I've been learning a lot about other people's experiences of Long COVID which is really insightful. And something I had thought at the beginning when I kind of first got sick was: this is really bad for me, but somewhere out there, there's a ballerina who just got given a solo, who now has long COVID ... orthe saxophonist who has long COVID and can no longer play. So I guess I've become very conscious that Hannah and I are going to be talking about our personal experiences with long COVID and how they've affected our work. But we're aware that many people have just had to stop work completely.

Hannah 

Yeah, yeah.

Katya 

Should we talk about work?

Hannah 

Yeah.

Katya 

So I guess the first question we wanted to touch on was, what do you do professionally? And how has this been affected by long COVID?

Hannah 

I am a qualified speech and language therapist. So I was working in a hospital when the pandemic struck, working on the front line with patients with communication and swallowing impairments who were in hospital, mostly on the acute stroke unit. But some of my colleagues were concentrated much more in respiratory wards and ICU.

Katya 

It's so weird, but I think that we never spoke about it. I actually forget that you worked on the frontlines at the start of the pandemic.

Hannah 

Yeah, I mean, I was all kitted up and seeing patients with COVID. But I mean, also seeing patients who were COVID negative, and then turned out the next day after I'd seen them to be COVID Positive.

Katya 

(joking) Can i look in your mouth ?gain. (laughs)

Hannah 

Yes. cough on me again, please! (laughs)  I mean, that's, you know, that's what the my work was. A lot of it was doing swallowing assessments. So you are very close to people's mouths. It's, it's not an ideal job to have when there's a... what's it called? You know, the type of virus that's borne on air.

Katya 

airborne?

Hannah 

Yeah, it's not the ideal job to have when there's an airborne virus going around.

Katya 

It's like the modern equivalent of you know, those women who used to balance plates on their heads while men threw knives at them. Just the worst possible place to me, yeah, like if you get out of this alive. It's a miracle. (both laugh),

Hannah 

so I mean, obviously, all of my colleagues, we all got COVID at some point, you know. Not only was I probably exposed to a lot of the infection, the type of job I did, it was very, very intense, in terms of it was client facing, and I would be seeing patients and working kind of, in a very social job. It was high stress. Working overtime was quite normal for me. And I was on my feet majority of the day as well. Yeah. So, you know, it always was a tiring job. But you kind of when you're healthy, you have that, that physical and emotional resilience.

Hannah 

But what I found was, as you know, my health was struggling, suddenly, the things like that face to face social interaction,  walking between wards, doing my assessment standing up at a patient's bedside, all of that was just way more tiring than it used to be. And not only that, I just couldn't bounce back from it. Whereas before I would come home, and I would rest and, and kind of be ready the next day to do it all over again. I just didn't have that anymore. So it was kind of just cumulatively becoming harder and harder and harder. And I really felt every day. Like I was waking up exhausted. And then I was just walking through water. Yeah. And I think I was in denial about that for a long time. . And just thinking it will pass it will pass. Just keep pushing, keep pushing. And I think I was just digging myself into a deeper, deeper hole, really.

Hannah 

Part of what was pushing me to really try to keep going even though I was feeling really, really rough most of the time was a sense of duty, and a certain feeling of guilt. Because if any of us in my team were sick, it just made everyone else's day that bit harder because we were so we were so understaffed anyway yeah, it was just that thing of like, Oh, if I don't turn up I just know that my colleagues going to have an even more shit time. . And then also me being off meant the less patients would be seen and when you're working in acute hospital, you're working with you know, very ill patients whose risks to their well being are increased the longer that they're not seen by our team. So yeah,

Katya 

I can completely relate to that from when I was a school teacher. Yeah. And we just didn't have enough staff.

Hannah 

Yeah, yeah, definitely. The days that I took off because I really was too ill, I would get up in the morning and I would be struggling to dress myself, I'd just be thinking like I can't do today. I would then take the day off sick, but then just spend the whole time feeling really anxious and really sad and really guilty. Yeah. And then also then being worried about like, right, I need to be better for tomorrow.

Katya 

 I can't believe we've never spoken about this before. Because I have the same thing. It's like you're too sick to work. But you are then haunted by that despicable voice in your head. That's like, maybe you could have done it. What must they think of you? They probably don't believe you. Yes. I completely get that. That.

Hannah 

Yeah. Yeah. And that, like you said, they don't believe you. I would often have that fear that my colleagues would assume I was just skiving off, because I couldn't be arsed. So yeah, there is that feeling of judgement, whether it's real or imagined...

Katya 

It's always imagined. It's never real. because it comes from your head! (both laugh)

Katya 

(Katya bursts out laughing as Hannah goes to speak) Sorry I had just had this image of you! I don't know why. Just sending a message like, Guys, I'm sorry. I'm sick. And then you're just standing outside the Thorpe Park gates like waiting to ride the roller coaster!!! It's just completely Yeah, completely insane. But yeah, that's what your crazy mind does to you.

Hannah 

Oh, definitely. So yeah, I mean, it's funny because when I think back to working during the pandemic in hospital, I immediately feel anxious just talking about it. Just because it was such a shit time, obviously, for the patients and seeing the patients suffering, seeing people die. You know, a lot of end of life situations. And you know, all of that takes its toll. But then for me, it was compounded with  my own anxiety about my own health and being well enough to do it and handle it. So yeah, it was a bit of a double whammy.  I can feel I'm like, got that churning feeling in my tummy just speaking about it!!!

Katya 

Yeah, yeah. I haven't seen it myself.

Katya 

I had never really understood the trauma that health professionals experienced during COVID. Which is strange, because one of my closest friends is an intensive care nurse who was at King's Hospital London all through the pandemic. And her stories were haunting. But I watched a film recently, I can't remember what it's called... It's about the pandemic and the disaster that happened in care homes... It's with that beautiful actor who does the accents for really, really talented women. It's called 'Help'. I watched this amazing film called help. Jody Comer plays a carer and she has this one scene that is just referred to as the 'night shift from hell'. She's all alone, because everyone's off sick. And she is working by herself through the night to basically manage a dying man. And also look after all of the other patients and something about the intensity of the scene... it just, I really recommend everyone who is not a health professional who didn't live through that part of the pandemic to watch that

Katya 

Actually. I don't know, you might find it super triggering. I recommended it to my friend who's the nurse. And like, almost as soon as I said it, I thought, Ah, what's wrong with you Katya??? I'm pretty sure  that's the last thing she wants to see since she basically lived it!!! Like she was that film. For.. quite a while I don't think she wants to watch it.

Hannah 

Yeah, I do think she needs more insight. (both laughing)

Katya 

Yeah, I remember during my 12 weeks of losing my voice, (whoever's listening, I once lost my voice for 12 weeks, which was now the second darkest period of my life). But I remember being told by someone to drink lemon tea, and I feel like I did that to my friend when I told her to watch Help! (both laugh).

Katya 

Sorry Hannah - You're explaining how the period of work was terrible, but even harder because you yourself were physically ill. Yeah. And had all of the complications of that. ,

Hannah 

Yeah. But you know, I eventually, I kind of reached a breaking point. I was signed off work by the GP  for six weeks. Actually, no, I think it was three weeks to begin with. I basically got on the phone to the doctor and he was like, okay, yeah, I'm gonna sign you off work for three weeks, and I just burst into tears. Because it was like such a relief. Yeah. To have someone say, okay, you don't have to go to work for three weeks. I was just sobbing down the phone. I was just like..! Thank you!!!!

Katya 

Yeah, I've been there!

Hannah 

Yeah. And I then I was in a really dark place at that point. I mean, I, I think because work was my life. I think the idea of not being able to work, I then found that really, really difficult. Yeah, I mean, my mental health was rock bottom, like, I was feeling suicidal. Thankfully, I, because I had a chance to rest. I think, you know, my mental health then was given some space to kind of stabilize. And I was tipped off actually, by Chris, bless him. I think he was looking for other jobs for me, because we were talking about, right, I just, I think I need to, I need to find something else to do to earn money that's not going to be this demanding. Yeah. Whether that was being a speech therapist or not. But yeah, he was like, oh, there's yeah, there's this job at the university. So then, I could basically just transition into this job, which I'm in now, which is obviously still very challenging.

Hannah 

 Yeah, so I'm a lecturer. So I work full time, a lot of it is working from home, but then I go into campus in order to teach. At the minute, the teaching I dot would be, you know, up to six hours of teaching in a day. But...

Katya 

 wow,

Hannah 

I'm only I'm only doing that about twice a week at the minute.

Katya 

(laughs!) Geez!! I mean, it's like...I'd be like,  if I sit down on a chair, you guys will come really close. And I will whisper what I need you to retain.  (both laugh) I imagine a lot of flip learning. Hey, guys read this and tell me what you think? ,

Hannah 

well, I think, you know, I feel so fortunate that my condition is on the milder end of the scale, in that I can actually hold down a full time job and a full time job that does require some intense days of face to face interaction. But basically, my story is because of long COVID, It was one of the catalysts that kind of pushed me to find a different job. And it was a job that I knew I always wanted. But having long COVID was basically the push to be like, Okay, actually, I'm going to have a go at transitioning to this job much earlier in my career than I thought I would.

Hannah 

 And yeah, I'm loving the job, the work is amazing. It's just that constant anxiety that I'm not going to be well enough to keep maintaining it. Yeah, because it is difficult. And I have to sacrifice a lot outside of work in order that I can be healthy for work, it does feel like a lot of my life is me conserving my energy so that I can do my hours. So there is always that fear that my health isn't in a secure place that I can trust that I'm always going to be well enough to keep that going. And when I have a crash, and I have to take some time off work that really makes me feel more anxious, where I'm like, Oh, crap, what if I can't do this?

Katya 

Yeah I have regular thoughts of just getting a job in a shop, or something where it would be easier to take a day off, or just something where I wasn't going to become part of a project. And then I think for me, one of the things with work that just tortures me is I get an enormous sense of self esteem. Because I'm good at my job. I'm really organized. I feel like people trust me at work. And I feel like they think that if I say I'll do something, I actually will do it. And they think that because I that's how I genuinely am. Yeah. So when my health means that I suddenly disappear from a project for six weeks. . Or cancel a training session for the fifth time in a row or ... Yeah, I just have this huge sense of humiliation and shame.

Katya 

I had a terrible experience recently. The experience wasn't terrible. It was a lovely experience. But my brain... I had taken four weeks off work. And I had missed my colleagues enormously from taking so much time off work and they were having a social, they were going to the pub and then for dinner, and I thought I can do this - I can attend. And so I spent the whole day lying down. And then I went to the pub. And I walked in. And I was really happy to see everyone I really was. But then I suddenly realized that I had 12 people to say hello to. And I was standing up, and it was really loud. And  after 20 minutes of standing in the pub, my heart was going so fast. I was struggling to breathe. And I said, , I'm gonna have to go now. But it was so lovely to see you.  and I left, and I got in the cab home. And I felt so low, Hannah, I had all these thoughts of like, you know, they must think that I'm crazy or really strange, or that I just went there for attention? Or why would you? Why would you go somewhere for half an hour and then leave? Like, what's the point in that? I don't know what the point of that story was...

Hannah 

I guess it's about not not just dealing with feeling really physically ill. But there's all of those other thoughts that come with it, isn't it like you said, you got in the cab, and then you felt that people would just think you were really strange, or definitely the one I resonate with is they're going to think I'm just wanting attention. That is I yeah, I get that feeling all the time. Yeah, it's horrible.

Katya 

I've been listening to a lot of Brene Brown at the moment. She's a shame researcher.  She talks about Shame Gremlins and Shame Gremlins are the the hideous, like the disgusting rat inside of you that says things to you like that. It'll come up and say, you're just doing this for attention. They all think that you're perfectly fine. And they saw you're going Thorpe Park the other day..

Hannah 

Yeah, yeah. I have that feeling of worrying that people think you're faking it. It's just it really gets in your head.

Katya 

It's like I know! I already feel like I'm hallucinating half time. I need you to tell me that this shit is real. Don't add to my confusion. Oh, imagine being like, I think I'm really ill. But I don't know if like, anything is real. You really don't someone next to you to be like, Yeah, I don't know if it's real, either. I don't believe you. You want itto be like, This is real. Yeah. And you're doing your best,

Hannah 

Oh, God, it'd be so nice. To hear that.

Katya 

Sorry Hannah you were saying what you do and how it's changed.

Hannah 

I would say thatfor me managing long COVID and working at the same time is still very much a learning process for me. Like, I really don't feel like I can sit here and be like, I've got the answers. And I figured out the formula, because

Katya 

But Hannah (joking) that's why people are here! (both laughing)

Hannah 

Oh, I'm sorry to let every now but yeah, I'm still trying to work this out. Because I am a type A personality. And no matter how much I tell myself, I'm going to pace myself, and I'm going to rest, I'm going to be sensible, and I'm not gonna volunteer for things that I won't be able to do later on. That is really hard for me to maintain that. It's like this kind of busy part of my brain and the part of my brain that gets big dopamine hits off doing stuff and doing things well and working with my team and volunteering for stuff and being capable. And all of that stuff is what makes me feel good. So when I'm having a good day, I'm like, whoo, give me that. And I'm got all these ideas for work. And I'm starting projects and yeah, I find it really hard to control that side of my personality. And I get it wrong all the time. and then have to reassess what I've planned.

Katya 

Because you're like, Hey, guys, I'll lead this. I I want to start a new team. And I want to take them on a trip. (both laughing) And then it's like, oh, yeah...

Hannah 

(laughing) yeah and then I'm having to scale back or be like, Oh, actually, I can't I don't actually think I can do this. after all. I said that on a day where I was really enthusiastic and really unrealistic about my health.

Katya 

Yeah, I find that really hard too. I can relate to all of that. I work in finance. And compared to you, I'm super lucky and I have the best job you could possibly have to have for long COVID Because it's sitting down, and it's a desk job. And it's not an ideal job for brain fog. But it's definitely like an ideal job for sitting down. And yeah, I guess I just wanted to say that I relate to your drive to contribute, because...  (get's a bit lost :( ) I'm trying to think of what do I want to say? I wanted to talk about what I do and how it's been affected by long COVID.

Hannah 

Yeah, go for it. Yeah,

Katya 

yeah, okay. I'm sorry. I feel like a bit scatty. But no, don't worry, I'm sure I can edit this.

Hannah 

(laughing) It's fine.

Katya 

Can you just say, what do you do professionally? And how's it been affected? Then I can I can move it in? Yeah,

Hannah 

(in a very professional, composed voice that does not match the prior laughing tone) Sure. So Katya, what do you do professionally and how has it been affected by long covid?

Katya 

(laughing) There's no way  I can use that cut!!! It's fine. No, the thing I really wanted to say is, I feel like I tricked my team into hiring me. Because I got hired in December 2021. And so from December 2021 to May, I was working from home because it was during the pandemic, and everyone was working from home. So they kind of never really saw me because December 2021, to May 21, I was new to the team. But I was also completely new to the field in which I work. So I didn't know anything, all of my jobs were super basic. Then by the time we got to June, and everything was opening up, and people were going back into the office around June, July 2021. I was already sick. So , I kind of feel like my team don't actually know, they don't know what I was like before COVID.

Katya 

I've always done a lot of work from home, even at my best. So in terms of how COVID has changed how I work, for me, it hasn't because, I  was pretty much always sick. But I think that I kind of struggle with is I had, like you said, that sense of I really want to impress, I want to say yes to everything. I want to do everything.  And I've had this sign on my computer screen this last few months that says don't volunteer, just to be like, I know, this is your personality type But it's just like, I need to, I kind of just need to keep my job at the moment... I don't know what I'm saying on. Should we go on to the next question.

Hannah 

No, it's know what you're saying. It makes sense. I think there's that battle between ambition. And then then also, like deliberately having to hold back your ambition.

Katya 

Yeah. Yeah, that's it.

Hannah 

And then there's that thing of trying to manage what your colleagues think of you. And that's really hard, particularly when you're early in a job where you feel like you're still building your reputation. And you haven't got that long history where people can be like, Oh, I know. I know, Katya has always been great. And she's going through an illness right now that's changed her ability to work to her best. Yes, it's like people don't know what your best can be. Because like, they haven't known you before COVID.

Katya 

And I also feel like the thing I'm good at is I'm a good connector. I hadn't realized that I was sociable until I got long COVID. My old job. I was an assistant and I was the go between between my boss and the rest of the team. And so I knew everybody, and I knew everyone's names. And I, I had a network, man, it helped me so much in my job. And so I've gone to this new job with that same attitude. So like, January to May when I was hired, and I was myself, I was building a network. I was making connections, making friends. Yeah. And then as I started getting sick, things were just constantly interrupted. So I have people at work, who will have had two months in a row of regular coffee with me, and then I'll have ghosted them. And I also have this sense of loss, because working in the city, a huge thing is Thursday drinks. On Thursday, you go over the road to the pub, and you have a drink and a chat. And on the days when I could go into work, you know, I'd come out and I'd almost want to run to the tube, so that I didn't have to walk by all of the people having just a normal after work drink, so yeah...

Katya 

yeah, yeah.

Hannah 

One of my parents' really close friends has long COVID, which he is really close to recovering from now. But he's in his, I assume he's in his 50s. But he was saying to me, like, Oh, I think I'm at the age now where it's been easier for me to slow down at work. Whereas, yeah, you're at that young age where, you know, you're building your career. And, like, Yeah, it's true. I think there's a part of me that feels like, , I'm at that age where, I want to be advancing. And I want promotions, I want to opportunities and I feel like, I mean, I know, I've got many, many years ahead of me to build my career. But this is usually the time where people are kind of really putting their careers at, you know, front and center, you know, I don't have kids yet, I don't have...

Katya 

(joking) I mean you know, you haven't really got anything going for you Hannah! You're not very clever. Kind of boring. (both laugh)

Katya 

I have the same thing. Right. And I'm, it's two things. Firstly, it's watching opportunities go past me. Yeah. But also something that's huge in my company is promotion. And it's where we're coming up to kind of the time where you have promotion, compensation talks. And I feel enormously lucky to have this job. I feel so so grateful. Like, I feel like they are doing me a favor. So how do you ask someone for a pay rise? When you already kind of view your employment as charity? Like, I know, that sounds really dark, and like, how am I gonna stand there and be like, I know, I took a month off. I know, I've taken two months off this year. But can I please...

Hannah 

oh, man,

Hannah 

that's galling! But yeah, I'm still gonna do it. Because I'm... (laughing)

Hannah 

(Both laugh) You should! You should!

Katya 

Do you want to move on to telling work about long COVID?

Hannah 

Yeah, in terms of telling work about long COVID - I didn't, when I changed job. You know, partly because of my health issues. I didn't mention my long COVID during the interview process, and I wasn’t asked about it. I thought, No, I'm gonna give this a go. I'm pretty sure that I can manage full time hours, with the reduced activity levels of this job.

Katya 

(joking) And like, I guess also Hannah, if you cut out every other part of your life that brings you joy, weyoumight be able to do it.

Hannah 

(laughing) I'm willing to sacrifice my health and happiness to to do this. So...

Katya 

 I need to eat! So yeah! I guess I can do it! (both laugh)

Hannah 

So, yeah, I actually didn't mention my long COVID until I had a conversation with occupational health as part of the routine thing of joining the work place.

Katya 

That's really good! So when you joined, you had a conversation with OH just default?

Hannah 

Um, it was kind of mentioned as something I can do. Yeah, I don't think it was like, Oh, everyone has to see Occ Health, but it was definitely something that was introduced and raised during my induction. So it was very easy for me to get that going. And yeah, so then, when the health report was then written, I got in touch with my manager and said, you know, FYI, I have long COVID at the minute, I'm feeling all right. And I'm managing my full time hours. But obviously, I'll let you know if anything changes.  And I mean, you know, I've been with this job for over a year now. And I've managed to more or less keep working full time with certain adjustments.

Hannah 

So it just means that Occ health have been there to kind of back me up and make me feel secure about Yeah, okay, I'm working full time hours. But those hours that I do can be flexible, and the days where I have to drive into work. I can make those shorter working days and work longer on my home days. I mean, I'm just really lucky that the workplace I've entered has got an easily accessible occupational health team that have been really supportive and my manager has been super kind. I feel really, really fortunate.

Hannah 

But what about you, how have you communicated about work with ... So sorry, communicated, I always do this where I swap words around in a sentence.

Katya 

(both laughing) You know what makes it worse is we both do it (mix up our words), but neither of us challenge it. So it's only when I'm reviewing and editing the podcast.

Hannah 

I think that's why like, we don't pick it up in each other. Because I think when you're having a conversation, and you're in flow, as long as the message has got across, you don't really notice the grammar. Well, I mean, I don't, yeah, maybe it's my brain fog, but I don't notice it...  I was just gonna say, That's why doing lectures is so exhausting, because I have to think really carefully about the words that I'm using to make sure that I'm accurate with everything. So I do think that's why the day afterwards, my brain is always a bit fried. But anyway, I interrupted...

Katya 

 I do a fair amount of training in my job. And I've been told that my training seems really natural, and it's great. But I have a script that I read word for word, really, including things like 'I think that',  'I would say', 'I just remembered'. So it seems natural. It's the same script, whoever's listening to this is gonna be like, 'Oh, my God, am I joining this call for you to just read something that you could have emailed???' But yeah, and luckily, I have two monitors here. So I just pull up the Microsoft Word document. And I literally read every single word. Anyway,

Hannah 

You should be like, a script writer for like TV, because the number of things I watch where I'm like, that is the most unnatural conversation ever. You've like scripted naturalness into your training. (both laughing)

Katya 

Yeah. And well, my long COVID breathing really helps because while I'm doing my (dramatic gasp) I move my eyes from left to right, so it looks like I'm thinking. (laughs)

Hannah 

You're just catching your breath. (laughs)

Katya 

I know exactly what I'm gonna say!!!

Katya 

 Yeah, so for me, my biggest mistake was in I started, I got sick, like around May, June, July, August. That was when my fatigue in 2021 was slowly sinking in and I didn't tell work. September, I was just completely disabled by this illness. I took as much annual leave as I could. And I returned to work after my annual leave. And all I was doing was logging on sitting at my chair, logging off and going to bed and just doing the bare minimum. And it was hell, because I hadn't told anyone at work. And then I think it might have been December 2021. I just couldn't do it anymore. Like I was thinking of quitting. And so I told my bosses. I can't remember which one I told first, but they were just like, oh, man, like, that sounds really tough. We should put you in touch with occupational health. And I've had an initial consultation, and they were just amazing. They offered me time off which I refused. Classic Katya. At the beginning, I was like, Nope, I don't want to do anything that would discomfort my team. But I had reduced hours and complete license to work from home, which just I remember, it's just this huge sense of relief. Oh, thank you. Thank Thank god. Yeah. But I haven't really told my team, right, I've only realized this sorry, fairly recently, actually.

Katya 

But from kind of December 2021, I spoke to OH, about how I was doing and OH wrote very minimal letters to my managers. So I was pouring out my heart and soul to my OH nurse explaining how devastated I was at times and how much I was struggling. But my team just got 'Katya should work work seven hours' , 'Katya should work from home whenever she needs to,' 

Katya 

And so when I had this recent setback, I've been having a few questions from my team of things like, has this got anything to do with work? And I said to my manager, you know, I realized that my communication happens with OH, do you know what I'm living through? And she said, No. And I kind of realized that, because I live with this. I think that everyone knows, but actually, I haven't said these things to many people.

Katya 

But recently, I've been telling people and kind of asking for help. And I have two colleagues who I'm extremely close with and during my time off the calls and WhatsApp messages... they were such a source of comfort. And during my return to work these last few weeks, because I haven't been able to go into the office, a girl who I love has just been booking in 15 minute daily catch ups, because when I was in the office, we'd normally  go for tea.

Hannah 

That's, lovely, yeah, that's really, really nice. Yeah, that resonates with me as well  that thing of like, you think that oh, well, everyone kind of knows. Surely, I go on about it all the time! And then you realize that actually, you don't, actually people don't know. And yeah, I've been deliberately trying to tell more people - tell people I work with, be honest with my friends and family. I've been trying to be , kind of brutally honest about how I am. And it feels really uncomfortable for me to do it. But I know it's better in the long run for me to be honest with everyone.

Katya 

Yeah, I have this constant battle with... They say you should bring your whole self to work. But you also have to be professional. Yeah. And so it's like, you say bring your whole self to work. But you can't mean the bit that is me inmy dressing gown. Yeah. Struggling to speak! (both laugh)

Hannah 

yeah, it's that fine balance, isn't it?

Katya 

Lately, I've done something. And I can't decide if it's good or bad. But  last week, I missed two meetings because I was too sick to join. But reaching out to someone senior and saying, it's not a good day for me. I'll 100% join the call if you need me. But if I'm not needed on this, do you mind if I miss it? That was really terrifying. And I was just waiting for a response of: 'You're not taking this seriously.' Or 'maybe you need to go back to OH and take more time off'. But yeah, and then part of me was like, 'well done. Katya'. Yeah. You said what you needed. And they were lovely, as you knew they would be. And you were then able to do the whole day's work. But I still have that Gremlin who says 'they're probably not going to invite you to the next meeting. Or when they're thinking about promotions, Why would they promote you because you're unreliable?' Yeah. whoever's listening is like 'Jeez! You have a dark gremlin!

Hannah 

Yeah. Just a chatty one.

Katya 

do you want to take a 10 minute break?

Hannah 

Yes. Yep.

Hannah 

(Hangs up)

Hannah 

 Hey,

Katya 

Hey! (sounds kind of vague), I'm having a really weird long COVID day I literally just walked into a wall. And I've been here for a year and a half. So it's not like who put that there? the walls always been there!

Hannah 

Oh, my God. (laughing)

Hannah 

Are you okay to keep going?

Katya 

Yeah, I am, I just thought of something I really wanted to say.

Hannah 

Yeah, go for it.

Hannah 

Okay. I think it's really important to say that the way that my work handles my long COVID has made of me a loyal employee; offering me time off work without sending me emails or anything like that. The kindness of my colleagues. I was saying to my dad the other day, why would I leave? People with long COVID are still valuable workers. And yeah, and like the generosity they've given to me has just inspired a really strong sense of loyalty towards my team and my company,

Hannah 

Definitely, that iit's better for employers in the long term to  be generous and be kind and invest time into the, into their workforce. Definitely. Because, I mean, ultimately, this is one of the big problems with the NHS is they haven't got the money and the resources to support employees when the chips are down. And I mean, you know, people are leaving their professions and they're struggling to hire, relying on bank staff and paying through the nose for that and it's just a mess.

Katya 

Yeah I have friends still in teaching who say the education system is facing the same resourcing challenges now… One of the things I wanted to mention for me is that now one of the barriers for me returning to work is navigating the office. And people don’t think anything of it. But it’s like fine I can get a cab to the building but how do I then walk to the canteen and the toilets and back. Because my long covid is so bad walking is not something I can do indefinitely, and if I use up my beans in the middle of the day, it doesn’t matter if I’m in the canteen or an inconvenient place, I will have to sit down.

Hannah 

those short trips, those little short walks between areas of your workplace, they really add up, and they feel really long. When you've got long COVID.

Katya 

It's the gap between the seats. Yeah,

Katya 

Should we go to how does long COVID affect your feelings around work, like your emotional weather?

Hannah 

One thing I've kind of learned from having long COVID Is that I use my energy just as much for social interaction, and then emotional regulation, as much as I use it for physical activity.

Katya 

Oh, yeah. True.

Hannah 

When I am really tired at work, just facing people and interacting with people is really tiring. But then also my ability to manage my emotions, is not so great, either. Like I feel a couple of times where I've felt maybe overwhelmed by my fatigue, or maybe a bit upset about something that's happened at work. I just feel like I'm way more likely to well up, or I'm way more likely to just have a much stronger physical response to the stress that I'm feeling. And I just, I just feel like, yeah,  I think I'm putting it down to my ability to like, monitor and then regulate my emotional responses to things. It's just not there. So I feel like my emotions just kind of burst through my walls, where I'm like, Oh, my God, like I would never have, I would never have felt this out of control of my emotional responses to things in the past.

Katya 

 I have the same thing. Yeah, when I get tired, , I've had moments where I've cried in front of my boss. And it's that sense of, Well, no one else is crying at work! 'I know, you're telling me that it's okay. Because you're a lovely person. But no one else is crying.  This really is just me!' I actually have a safety buddy. There's a guy at work, w we're such good friends. And yesterday, I knew I was in for crying day. So I called him in the morning to get it out of the way. And he was kind of worried afterwards. But I was just like, No, it's okay. I just knew I was going to cry. and you're a safe space. Now I can have a call with someone who doesn't know me like that. (both laugh)

Hannah 

 that's really lucky that you have someone like that.

Katya 

Yeah, I am. I'm so lucky. But it's also like, I'm very aware of the cliche of the hysterical woman.  I'm uncomfortable with how easily I cry these days.

Hannah 

Yeah, I feel that same self consciousness of fulfilling a stereotype, especially as a young woman as well. I just feel like it makes me feel like I'm a teenager.

Katya 

Yeah like i'm the little girl crying at the end of this meeting

Hannah 

And also, because I feel that time pressure where it's like, okay, I'm having a little cry, I'm in the toilet having a cry, but I need to get back to work. I need to tidy myself up and kind of get a hold of myself quickly. So there's that sense of pressure. Yeah, but it's hard when  you have so little control over your physical response to things, which is what I feel a lot of the time.

Katya 

Because the faces I see at work arepretty much consistently, either super focused on solving a problem, or happy and laughing. So I feel a bit of a sore thumb when I am falling apart

Hannah 

Yeah, yeah. Just kind of presenting a different face at work that I think people aren't maybe used to seeing that much

Katya 

Yeah, because I can see why you need to have a professional behavior. Because the thing with work is, it's a job and the job needs to get done.. So that idea of bringing your whole self to work, I don't even think it's true. I swing between the two, right of like, I need to work. So I need to keep my job because I need the money. What are they paying me for? They're paying me to work. So how can I go to work and cancel meetings? Or be ineffective?

Hannah 

I, I spoke to my therapist about sort of similar stuff relating to this, I've started therapy, by the way, like recently.

Katya 

Oh well done.

Hannah 

Yeah, she kind of sent me a document about boundaries. And what this document about boundaries was saying was that you have one end of the spectrum where you don't really have boundaries, and you may be overshare. But then there's the other end of the spectrum where you don't share at all. And, then kind of the place where you have that just right is somewhere in the middle of that. So I think part of being someone in the working world is like finding the balance. And that's really hard between those two extremes. And I do think where that balance lies is going to depend on the particular job you do and the relationships you have with your colleagues. And you're standing within, like your your seniority and who you're kind of showing that extra vulnerability to? I know, it's so complicated.

Katya 

 I think that is the really tricky thing, maintaining the boundaries - because you need to respect them for other people as well. Like, my manager needs to manage me and my work. They are not responsible for managing my long COVID. I was talking to my dad about this the other day. And my dad said, as a manager, what I really don't want to receive is a problem. It's far easier to receive a request. Yeah, so the request would be, hey, I'm finding this too much. Do you mind if I cut back on this? That is much easier to deal with. Because it's like, oh, well, I can have a look at that. And I can do something about this. Whereas if if you just sit down and give me all of your problems... What what do I do with that?

Hannah 

Yeah, that's so true. I definitely think that actually summarizes quite well. The interactions I've had in the workplace with senior people that have gone well and haven't gone well around health,

Katya 

I agree, actually. Yeah. But then knowing what you want and asking for itt is really, really hard. To go to that meeting and say, These are my challenges, to help me I need this.

Hannah 

Yeah. Yeah, I think. And it's hard, I think, especially when you're in a place where you're really ill. And it is, yeah, it's hard to know what you need. You just feel you're basically just saying like someone helped me. And like, you don't really know how to help yourself or , what, what manageable workload looks like for you at that point.

Katya 

Also, because it changes from day to day. Manageable workload on Monday is very different to manageable workload on Friday.

Hannah 

Oh, yeah, for sure.

Do you have anything that helps you with work? And also, how are you feeling and do you need to stop?

Hannah 

I'm doing okay, I'm okay.

Katya 

Do you have anything else you want to add to the conversation on work?

Hannah 

I don't think so. I think I'm struggling to think of things that I do that, that helps me that i could give to other people as advice.

Katya 

I guess I just want to say also, like, we're not giving advice. We're just talking about this.

Hannah 

Yeah.

Katya 

The general tips for managing long covid will help you manage long covid at work. So I just want to point people to our second episode on self help (so many of those strategies, the bits about pacing and for me the non-sleep deep rest) help get me through work. And our website links to useful resources like a blog on pacing that you put in Hannah and the non-sleep deep exercise that I do in the mornings and afternoons. I do it every 1.5/2 hours while I’m working and it keeps my stress levels down and helps me to do a days work without exacerbating my illness or it makes it more feasible than it would be if I was just trying to rush through it.

Hannah

Yeah I agree with all of that and if people aren’t already I would recommend joining a union, I have put a link on our resources page to Information on Employment Rights and a link to Unisons website. I just found it comforting to read about the support unions can give you and what they have to say about other people’s experiences of long covid. It’s one of those things where if you are feeling alone or isolated or unsure around what your rights are there are places you can go and people you can talk to.

Katya

When I was a school teacher the union was so important as a mediator between yourself and management. I didn’t have to rely on the union but I had close friends who did. One was accused of something by a student and this teacher had done nothing wrong and the union was able to create the safe space, mediate conversations and ensure the teacher was never alone with management. They always had someone on their side for those conversations. So I can imagine how in a time of illness when you’re having to fight to get the time and help you need someone on your side for that.

Hannah

Especially when you’re in a place of illness you don’t have the beans to do your job how are you supposed to have the beans to fight for yourself as well. Trying to explain what you need when you’re feeling super brain foggy and shaking with exhaustion

Katya

Yeah and you’re terrified you will lose your job! So yeah, that second episode and the resources page on our website. And we’re trying to grow our resources so if you have anything that helped you with this, please do let us know.

Hannah 

I would be so interested to hear people's experiences of working in different environments. And yeah, maybe some of the similarities they might have noticed or the differences to our stories.

Katya 

Yeah, yeah, I agree. Actually. That's something I'm finding with diving into social media. Long COVID is so different for everyone.

Katya 

Should we stop there then, Hannah?

Hannah 

Yeah, I'm happy to stop there.

Katya 

Yeah, I feel like we have a lot of good stuff.

Hannah 

We got a lot of good stuff. We've covered loads of ground; I think. Yeah. Yeah.

Katya 

We'd like to thank you so much for listening. I really hope you enjoyed our conversation.

Hannah 

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to bounded energy@gmail.com Reach out to us on social media at bounded energy.

Episode 3 - The Bounded Energy Festive Special!

Tinker  00:02

-meeow- Pesky cat,

Katya  00:03

Does the cat want to say Hi, Hannah?

Hannah  00:05

I think he does.

Katya  00:06

Why don't you just bring Tinker up? (to the cat) What are you doing for Christmas?

Hannah  00:13

Oh, it's really embarrassing. Don't tell him but we've got him a little stocking.

Katya  00:18

And this is Hannah's cat.

Hannah  00:19

Don't tell him but there's little treats in there. And there's a special Christmas themed tunnel in it because he likes tunnels

Katya  00:26

Who doesn't like a tunnel?

Hannah  00:30

It's madness!

Jingle  00:34

I'm having a good day (minute/hour/week). What to do and how to be with the beans given to me? Me and my bounded energy! 

Hannah  00:51

Medical Disclaimer: we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  01:03

Merry Christmas and a Happy New Year. Thanks so much for joining us for our festive special. In this episode, Hannah and I talk about how we're planning to navigate the festive season with long COVID and we finish with our new year's resolutions. Listening back to this episode, Hannah and I realized that we're sort of textbook examples of anxiety. Hannah's worried about whether or not she'll actually make it through the period. And I'm in complete denial and I'm unprepared for everything. I've kept those bits in though because to be fair, I think a lot of us have mixed feelings about the happiest time of the year.

Not everyone has a merry Christmas. Someone really close to me lost a loved one this festive season. And I saw my mum being unsure of whether or not to write Merry Christmas on that card. I've seen people in the chronic illness community talking online about this dilemma. And I do get it. So for those of you who have given up on fruit for the champagne you've packed in your fridge. Merry Christmas. And for those of us who felt like we're just keeping our head above water, I say Merry Christmas too! Why is it only the healthy people who get to be happy? I defy you - find those moments of joy this season. The small things like Taylor Swift's new album or a cuddle from a loved one. Seize them, lose yourself in them and make them burn bright. Even if perhaps they don't burn for as long as they used to.

Katya  02:29

A friend of mine, listened to our second episode on long COVID self help. Yeah, and he lives with anxiety. He said that he listened to episode two, and could really resonate with the pacing

Hannah  02:41

Really?

Katya  02:43

And it surprised me as well, I hadn't considered that a mental health issue could need the same kind of lifestyle adjustment. But he was explaining he needs to plan and prioritize what he spent his energy on. And make sure that social activities are appropriately paced because he gets overwhelmed. And he needs that downtime to get his mental beans back.

Hannah  03:09

That's so interesting. I hadn't thought of mental health and the three P's  having the same relationship that it does with chronic fatigue. Wow, I love hearing  how people have related to what we're talking about in ways that I just didn't expect.  I'm so grateful that people share that stuff because it opens up your mind to  all the experiences that people are living with and it just it makes you think so much bigger picture. It gets you out of your own head, I think as well.

Katya  03:42

Yes. So yeah, please if you're listening to the podcast and you relate to anything, let us know because we're so interested. And on the back of our last episode and your recommendation, I got a TENS  machine and I found out what it is. So it's like trans epidermal electronic nerve stimulator. And you're right it sends this little current that interrupts the pain signal to your brain and blocks pain but then also there's this idea that like a feedback loop relaxes your muscles. Anyway I've been doing it before bed. I must look absolutely mad it's quite... there's a lot of stuff in a TENS machine. Little nodes and wires.

Hannah  04:28

I know it took me quite a while to work out Yeah

Katya  04:32

I find it really soothing long COVID wise I use it on my psoas because I sit all day

Hannah  04:39

What's a psoas?

Katya  04:41

I think it's the muscle that goes around your hips and up your back a bit I think right? I was lying in bed. If you can imagine the blanket was covering my legs and my top but I had like a big gap around my psoas with all these electrodes, and I just remember laying there thinking if mum and dad come in all they can see are my pans and the electrodes. (both laugh) But thank you for recommending that.

Hannah  05:10

Oh, no, you're welcome. But when it comes to aching, I get aching kind of all the muscles around my lower arms, and then sometimes at the top of my arms near my shoulders, but I have no idea what that's about. I've never had this before in my life until, you know, recently.

Katya  05:30

Until long covid or...? until you took up rock climbing? Because that can really get your forearms too.

Hannah  05:35

(laughing) No, no, no, absolutely no physical activity could possibly have triggered it off. Apart from maybe I don't know. Lifting a pen or something.

Katya  05:49

 Yeah no I know it's like this weird pain has come from inside me. The other day I was working. And I moved too quickly. And I absolutely murdered my back. I was in so much agony. I was just sat there like, Oh, this is long COVID related, because I haven't done anything but that inactivity is itself a physical punishment. Like it's not... my body doesn't really like spending 23 hours stationary.

Katya  06:19

Oh, and on that note, I have another recommendation.

Hannah  06:22

Go for it.

Katya  06:23

for like a year and a half I've been googling long COVID yoga on YouTube. I've never found anything but I found a 40 minute video by Sarah the Long Haul Yogi. It's called 'Stretch that psoas - yoga for long COVID' It's the first video I've found so far where I could do the whole thing. And she makes you rest, which is exactly what I need. Because I wouldn't do it myself. . And then she has the genius idea of getting you to do the warrior poses with a chair underneath you.

Hannah  06:58

Oh, that's a good idea!

Katya  07:01

So you're supported. But you still get a wonderful stretch.

Hannah  07:07

Oh, I'll check that out.

Katya  07:14

So just before we start our Christmas episode, I need to explain that I get the sense of anxiety as we get closer to the recording that I'm going to suddenly run out of energy. We just can't guarantee things anymore. I think we joked last time about how we take it in turns to cancel because you just don't know what you're gonna be like. But I guess what I'm trying to say is we're recording this at the start of December. Because I just knew that if we waited until the 19th. Like that only gives us five days to be sick!

Hannah  07:50

Yeah, I've definitely learned the hard way. But I think that's one of the first things that I was actually going to talk about in relation to managing the festive season is...

Katya  07:59

Well I think first off Hannah, we have to say Merry Christmas.

Hannah  08:02

Merry Christmas!

Katya  08:04

Merry Christmas, for 15days time. But yeah, sorry, you had stuff to say. So go for it, Hannah.

Hannah  08:13

I was gonna say that what you were saying about the unpredictability of our health. I've been feeling that with Christmas. I'm like, gosh, what if I wake up on Christmas morning, and I'm just having a really, really shit day. I'm gonna potentially spend the whole day in bed. So I just think for one thing, all the three P's. So planning, pacing, prioritizing, absolutely apply to Christmas, and the whole lead up to Christmas, and everything that happens after Christmas and during the beginning of January. You've got to plan things in advance. Like I was thinking, I've been trying to be really on it with getting Christmas presents for my family. And then I'm thinking, Gosh, I'm going to need to plan a time to sit down and wrap everything. I can't leave things to the last minute now. Because it's like, well, I don't know if I'm going to be alright in the last minute and trying to do loads of stuff in the last minute is going to wipe me out for the day itself. I think I've just got to not put pressure on myself to try to squeeze everything into the day of Christmas. And I've just got to try and declutter it a bit and just try and focus on the most important things. And I don't know, maybe try and spread out the celebrations a bit more and think well, on the day of Christmas, I'm only going to be able to do so much. But maybe there's more that I can plan in and around the day itself to feel like I've actually celebrated it.

Katya  09:39

This is interesting because our first question was How are you feeling about the upcoming festive season? And it sounds like you're feeling anxious?

Hannah  09:48

Yeah,

Katya  09:49

I don't know. I feel like I live in total denial. Because all the things you're saying count for me as well. I just haven't done it like, I haven't bought any Christmas presents. I actually haven't even opened up the Secret Santa name that I have. Yeah, it sounds like you're...

Hannah  10:06

well,this is me, I, when I'm feeling anxious about something, my reaction is to plan and do things in advance, I have a real fear of not meeting a deadline.

Katya  10:16

There are worst reactions to have, by the way, Hannah, there are worse reactions to have... my reaction to an upcoming deadline is to do it in advance!!!!

Hannah  10:27

Well, I would, you know what I'm like, I don't like leaving anything to the last minute, really. Whereas I know that you're much more of a last minute worker, right? I'm just trying to think of how we used to do essays back at uni... Yeah, we were very different. I would have written it like two weeks before and you would be like...

Katya  10:42

Yeah! Yours we're also consistently better though... I had like a bit of, I was gonna say 'revelation'. I don't know what the word is - a change. Last weekend, as I was getting ready to go to my friend's wedding,  I had been saying to my dad that I wasn't sure what I was going to do, if I was going to go, how long I was going to go for - all these other things. And he said, "I don't want you to get lost in this illness, you need to keep trying". And then he's he said, "When you have the beans or the energy to do something you really want to do, you need to take those moments and make them burn brighter, because they burn for less time." And I took that, and I went to the wedding and had a wonderful time and then spent the last week feeling like I was drunk and hungover at the same time. And I was thinking about my last two Christmases. And they were awful. They were awful because they were ruled by illness. But I then reacted to that by just completely shutting down. And so I have this thing of Christmas 2022, which is crazy that we're here. How can I pick the moments that I want to burn brightly?...

Katya  12:01

 I don't know how to say it. But I know I can't do the whole thing. I think I have seven days off work or something across the Christmas period. They will not all be good days. But I'm so excited for the good bits that I can steal. You know what I mean? If I only have a few afternoons of good health over the Christmas period, I can't wait to talk nonstop over Christmas dinner and burn brightly but for less time. I'm looking forward to the festive season. And I I don't know maybe I shouldn't be but I'm really looking forward to it.

Hannah  12:37

Yeah, you should. Because I think yeah, like you said, even if you have, you know, a moment or a couple of moments of like really enjoying yourself for those things. That is what it's all about. Isn't it? Like for me ... You are making me think about like, Oh, what is my? What is it that I absolutely want to prioritize my energy for if I had to get rid of everything else. I think for me, it is waking up in the morning, and then exchanging gifts with Chris first thing in the morning. When you kind of distill it down, I've got my little moment to like burn bright. Yeah, yeah, I think I'll spend it doing that. And then I'll be really happy because I want to give Chris his presents. I'm excited to give him his present

Katya  13:21

And not hold back any of that excitement. Right? That's your moment.

Hannah  13:25

 Yeah, yeah. And enjoy the moment. And then after that, it's like, Okay, now we'll just see what the day brings.

Katya  13:32

This is the thing I've experienced post the wedding is... I'm not resentful of the crash. This exhaustion that I feel and the ache from that weekend is the reminder that I chose to really be myself for those hours. They are memories to live for. And like if you give Chris your energy on Christmas morning, and then maybe by Christmas lunch, you've run out of words, can you be at peace with that?

Hannah  13:57

Yeah, I think you're right. If you spend the whole time just focusing on all the stuff that you can't do, the things you're missing out on, the stuff everyone else is doing that you can't be involved with. It's just Yeah, it's gonna be shit, isn't it? And I think it requires radical acceptance. You have to somehow find a feeling of peace with your limitations and be really happy with the moments that you've got. But that's a really difficult state of being to achieve think you have kind of lived with it for a little while to kind of build that wisdom.

Katya  14:36

But it's also kind of messed up though, because one of the reasons I'm so looking forward to this holiday and the reason why I feel like I have more opportunities to shine brightly is because I have seven days off work. Because I have more downtime. I get to have more uptime and I feel like uptime is what I've I've been really missing. Yeah, so that's, that's why I have this like huge sense of excitement.

Hannah  15:03

Because you know that you, you basically carved out enough rest time to allow you to have your moments, I think, ,

Katya  15:11

Maybe I'm being really naive and I won't even publish this on Monday the 26th because I'll be so furious that I spend Christmas sleeping.

Hannah  15:21

I know, we do sound quite hopeful, don't we!

Katya  15:23

But there is so many anxieties that you have as someone with a chronic illness around the festive period in general, like Christmas and New Year's, because something that I have and live with is a fear of reinfection, which I often feel silly about. But it's like, well, my last reinfection was in September. And I mean, you know, I am much better, but I'm not like... I'm still walking 10 minutes a day, and I took a month off work. So when I've been thinking about when are those moments when I'm gonna really burn, they are in social situations, and I just, I've tried it before, but I cannot wear a face mask in a social situation, because people just don't talk to me. And I don't have the lungs to speak loudly. And so for me, there are gonna be a couple of moments when I'm with my family or my friends, and I'm unmasked at the peak flu and COVID time, and I don't know what to do, but I just know that I cannot... I can't not take the risk.

Hannah  16:30

Yeah, we take risks in life all the time. And it's a very personal thing, isn't it? how much risk you're prepared to take and what feels worth it to you? I think for me, I am scared of reinfection, too. But if it's socializing with family and things great if it's, I don't know, going to a football match or...

Katya  16:51

 the club! Would you go to the club! (both laugh)

Katya  16:58

I miss that stuff. I really do. Before I got sick, I didn't do it regularly. But there's nothing more fun than getting really drunk and dancing to the cheesiest songs.

Hannah  17:11

I know.

Katya  17:12

Anyway, shall we move on to  what are you doing for Christmas and New Year's? Or do you want to? Do you want to stay in our anxious... like, I'm totally fine to stay there, Hannah. We can worry some more if you like

Hannah  17:27

(laughing) No, I'm happy to move on.

Hannah  17:30

I feel bad I feel like I started the conversation with just so I'm really anxious that I'm planning

Katya  17:36

 Yeah. How are you feeling about the happiest time of the year? It's like I'm absolutely terrified. To be honest, I'm dreading it. (both laugh)

Katya  17:46

No, honestly, I think you can't fake it. I think you'll get to happiness. But if you've started in anxiety you need to pass through...

Hannah  17:56

Absolutely. Yeah, you need an accept like, okay, all right. I'm feeling anxious. But you know, we can move through, we can find the happiness and those moments of contentment during this time? Because yeah, I think trying to just squash it down doesn't work.

Katya  18:13

So yeah, mixed feelings about long COVID at Christmas. What are you doing on the day, Hannah?

Hannah  18:20

In terms of Christmas this year, I'm having it at home, we're going to be cooking. Well, Chris is going to be cooking bless him! (both laugh) And then we're gonna have a really quiet one. What it's going to be I think it's going to be about six of us.

Katya  18:38

I feel like in long COVID terms that's like... a crowd, that's

Hannah  18:44

it is a crowd. I think I'm going to be seeing Chris's extended family which involves children the following day. That's why I'm like, I can't just have a big blowout on Christmas itself. Because that's the thing is it's not just that day. There's things that come after Christmas day! But I don't know - what are you doing?

Katya  19:04

Well the thing is, I felt really bad now because I was gonna say, my Christmas is perfect for people with long COVID Because it's just me and my parents, my two brothers, and like, we've never been a very active family. Like normal families go for walks on Christmas Day. It's the Christmas day walk! My family have never done that. The only excursion we've ever done on Christmas is taking grandma to church. And no one ever wanted to do that. So as we got older people just dropped like flies. When you physically could not make my little brother go to church, it would literally just be me and my older brother driving grandma to church, but now it's just the five of us. No one will leave the house on Christmas Day. I'll watch a church service on television. Because I just... there's something in me that says it wouldn't be Christmas day if we didn't have... I don't know why

Hannah  19:54

(laughing) But you're an atheist! What are you doing?

Katya  19:57

No, I know I'm an atheist. but it's all the good songs at Christmas. I don't think God will mind. Yeah. And then we'll honestly we'll just have lunch, and then we'll watch a film.

Hannah  20:07

That's nice.

Katya  20:08

I feel kind of bad  now because I  I was all... I feel like I might lack empathy... I find it really hard to remember that other people have a different life experience to me. And that, like your Christmas will be different to mine...

Hannah  20:21

No! Everyone gets caught up in their own in their own existences. That's the point of socializing, isn't it to be like? (laughing)

Katya  20:31

That's the problem with long COVID! You just don't socialize! I just assumed that we all spend Saturday nights in our bedrooms.

Katya  20:38

You were saying that you have your extended family and their kids coming around on Boxing Day?

Hannah  20:45

No, so I'm going to theirs. I'm really looking forward to it. You know, I haven't seen the kids in a while. It'll be really nice to spend time with them. But I just hope I have enough energy to give them the beans they deserve.

Katya  20:59

When it comes to little children. I just have to accept that I I can no longer play with them. Yeah. Because I used to at Christmas, whenever we had our cousin's kids over, I would play with them and let the parents chill. And there's a huge sense of loss of, I can't play this game with you now.

Hannah  21:18

Yeah, yeah, you just kind of have to be on the peripheries. And it's different, because also children are so high energy, and I can't really match that.

Katya  21:27

Yeah, I'm not going to pretend to be the cave troll that you take down. I actually would consider myself a risk factor for holding kids. I'm serious. I don't trust my body to not completely give my under me. Yeah, cuz, like, it's just interesting with kids. I feel like with long COVID there's a really specific interval at which you can interact with children. It's when they're pre-speech pre-movement. So up to like a year maybe because they just want to cuddle and they sleep most of the time. and then it's after 14/15 once they can self-soothe self-entertain, and they can actually have a conversation. In the middle when they want to physically play. Yeah, you can't do that with a chronic illness like ours.

Hannah  22:11

I'm very happy when I meet a child that is very like me when I was a child. We can literally just sit and do a puzzle together.

Katya  22:21

What are you doing for New Years Hannah?

Hannah  22:24

I don't know what I'm doing yet.

Hannah  22:27

What a loser! (both laugh)

Hannah  22:27

It's just going to involve me sitting down, having some nice food and trying to last for as long as I can. When I think back to like, the new years I've had in the past. I'm like, oh my god, I was just such a different person! The thought of going out or I don't know getting drunk staying up till like, I don't know, 6am in the morning. Did I really do that??? Yeah. This is impossible for me to l really get my head around. But I used to have so much more energy.

Katya  23:05

Yeah. Before COVID, I knew people who hated New Year's who were like 'I just hate it. It's so overhyped.' There's this ridiculous pressure to ... you know if you think of the adverts you see for New Year's Eve. It's like a small section of society who have the energy to actually participate in New Year's ...very few people anyway can actually drink and stay out all night, it's healthy people between the ages of like 16 and 30. Even my parents - it gets to midnight and they go to bed.

Katya  23:40

My last two New Year's Eve, I haven't done anything. This year, I haven't really committed to anything in terms of like signing a contract in my blood. I have said I would go to this thing that my friend tagged me on to, but I reserve the right to change my mind at any time. And it is very possible that I will not be able to get on a train into London to then go to this dinner. One of my friends very kindly looped me into a WhatsApp group with her uni friends where they're planning their thingy. And I watched with horror as it was like, 'why don't we do a Ceilidh?' or 'this jazz bar looks fun!'. And I was kind of like well, I guess it gives me an easy opt out. But they've settled on somewhere that's just a nice little restaurant, you know?

Hannah  24:31

Hannah's still laughing at the ceilidh! ... So the restaurant should be doable, but it's also like long COVID has affected my brain in that I am not good with loud noises. If you get me one on one and it's haven't done anything yet I might be able to give you an hour and a half / two hours of my time and I can come across really normal. Yeah, if there are other people speaking at the same time it's ... It's like having a conversation with like a waterfall in the middle of us. You couldn't do it either! I can't tell which sounds I need to focus on, which sounds I need to ignore. It's so weird. I feel like a phone in the cold, my battery just goes pfffttttt. My post COVID brain just cannot function in noisy environments anymore.

Hannah  25:19

Yeah, yeah. It's so funny that you mentioned that because I think actually, I think I forget to kind of be really explicit about this, because I'm so used to it. And I forget that it's not really that normal. But I'm, I'm the same. The reason why I'm having celebrations at home in my own home is because I cannot even begin to think about traveling anywhere else. But then having to deal with noise. So I had an experience where I was at a wedding reception, there was loud music playing and lots of people talking around me. Everyone else seemed to be able to talk fine. And I couldn't process what anybody was saying. It was quite awful. I was like, what? I cannot hear anything!

Katya  26:06

the thing I find crazy is that other people find it fun! Yeah!

Hannah  26:11

People seemed to be able to then hold a conversation and act like there's not this blaring music! And I just felt like I was mad. Because I was like, what's going on? I just can't tune in to what people are saying, I can't follow this. I can't manage my own reactions. I'm not quick, I can't respond properly. I just felt like such a failure in a way that you know, I don't feel like that when I'm interacting one to one in a quiet environment with a friend. And I feel like oh, yeah, not myself. But yeah, I didn't appreciate that my long COVID had done that to my brain.

Katya  26:48

Yeah, no, you're not a failure. It's really common. The more I read online, the more loads of people are like, Yeah, I can no longer process information. And I definitely can't process information in loud and busy environments. It's not you.

Katya  27:05

And I guess, yes, my new year's plan is to attend this dinner. I have the silly daydream of being able to stay up until midnight, so I can give Matty a kiss. But I just, I don't know why I have that. Because I've been going to bed before eight o'clock for the last four months. So I don't know why I've decided that on this day, I'll suddenly...

Hannah  27:24

Yeah suddenly find like, five, six more hours (both laughing)

Katya  27:30

So I might go to this thing. But if it doesn't happen, I need to find a way to be okay with maybe spending New Year's alone.

Hannah  27:41

It is about adjusting your expectations, isn't it? Because yeah, I like that idea of picking two or three burn bright moments that you want to have that are realistic, so that when you aren't able to do much else around those little moments, you're, you're saving yourself the pain of disappointment and loss, because you've already anticipated that, well, anything else that I managed to do outside of my little pre chosen moments is a bonus.

Katya  28:12

Yeah it's so messed up. Like I'm nodding at you  and smiling like, "yeah, yeah, like maybe I only have two happy moments this Christmas, but you know, I'll be okay with that!" No, to be serious. We actually do have to find a way to be okay with that (laughing) Because they're not going to find a cure in three weeks...

Hannah  28:30

No, yeah. Yeah. And like you said, your experiences of the previous two years. You either drag yourself through Christmas in a resentful funk. Or, yeah, you you kind of find this alternative path, which, and I know it kind of feels like, Well, why should I have to find this alternative path? Why should I be having to pick my burn bright moments and then be okay with everything else I can't have but there's no other way is there? You've got to find a way in your mind of being at peace with with whatever comes your way.

Katya  29:03

And, you know, I realized now actually, this is something that because of this specific economic time, we talk about this with energy. But people have to do this for the money. I mean, for this Christmas, families are going to be deciding who do we get a Christmas present for? Or maybe no one gets Christmas presents. But on Christmas Day, we put the heating on and we have a hot meal together, even though we know that those are funds that we don't actually have at the moment. Yeah, it's I don't know. It's...

Hannah  29:37

I think, you know, I was I was so privileged before I got longCOVID in that you know, I could just have it all every Christmas.

Katya  29:47

Yeah...

Katya  29:49

I think we should say to audiences like Hannah wasn't... she couldn't actually have it all. You weren't like "Daddy, I wanted a jet". And then he was like, "which one darling?" (both laugh) Yeah. Like normal middle class,

Hannah  30:01

Yeah normal middle class living. Yeah.

Tinker  30:03

(meeoow)

Hannah  30:04

Can you hear my cat?

Katya  30:06

 Yeah, but its cute. It might not pick up on the thing. I only heard him then... Hannah's cat only eats the finest organic free range chicken.

Hannah  30:17

He does though!

Katya  30:18

(laughing) Oh my God Hannah I was joking, but okay!

Hannah  30:23

I'm kidding. He doesn't, he just gets cans of Whiskers. But I do give him little treats whenever, like whenever I can. I'll have fish sometimes. And then I'll give him the skin,

Katya  30:33

And a whole roast chicken. Just for you. (laughing)

Hannah  30:38

Chris holds me back. If it was up to me, I'd be absolutely outrageous with them. If I ever had kids, I'd struggle a lot to not ...

Katya  30:49

make room for them with your cat? (laughing) Yeah. Like, if I had children, I'd really struggle to not neglect them. Because Tinker came first! (both laugh).

Katya  30:58

Do you want to cover the things we have to think about in terms of getting through the festive season as someone with a chronic illness? Yeah, how are you going to look after yourself and make sure that you can have this time but not aggravate your symptoms?

Hannah  31:13

For one thing, people like to do a lot of social things around Christmas. That's been something that I've had to already be planning and prioritizing. What I have done is I've met up with friends sort of more recently, like in November, I'm not trying to pack everything into December. So it's like, okay, well, if I can see people kind of within the months around Christmas, I've done well. And yeah, for me, it's been about doing that thinking about Christmas presents. I've got to sacrifice some things. I'm not going to be able to wrap everything up beautifully and post it myself.

Katya  31:50

Yeah, you know, you know, those people. I didn't understand them before I got sick... people who would perfectly wrap a Christmas present, attach a ribbon and a gift tag. It's one of the things like I've always wanted to be one of those people. But I just... even when I had a full jar of beans, I didn't do that!

Hannah  32:10

Yeah, now that's not happening. And I mean, yeah,

Katya  32:12

it's like in a Sainsbury's bag, like Merry Christmas kids! (laughing)

Hannah  32:18

I think you know, the people that are close to me and that love me know what I'm going through. And they are not going to be offended by a gift that's not wrapped, or oh, I didn't receive a card from Hannah this year. It's like, well, no shit!

Katya  32:32

That's what you think Hannah.

Hannah  32:35

And I'm actually just mortally offending everyone I know (laughing)

Katya  32:39

I didn't even get a bow! No, you'll be fine.

Hannah  32:42

But I mean, I'm not writing Christmas cards for anybody this year or anything?

Katya  32:46

I'm guessing you're not carol singing either

Hannah  32:50

Oh, no. (laughed) I was never the one who knocked on everyone's door and sang them a carol!

Katya  32:58

I can't think of like a less a less Hannah thing.

Katya  33:02

My things for getting through the festive season is to have a buddy to help get you out of kind of tiring social situations.

Hannah  33:14

Yeah, if you can, you know, if you don't have a partner ...like for me, Chris would be my buddy. I guess. in a  a family situation like my sister Livvy has got a very good barometer for how I am. Yeah. If you don't have someone that immediately comes to mind as being like maybe your your buddy for a social situation, I think, I don't know, maybe think about who you could have that conversation with beforehand. Be really honest with them and be like, Hey, I'm a bit worried about that this day. Or could you please just kind of be  my wing man as it were...

Katya  33:49

Yes it's finding time to tap out

Hannah  33:52

Yeah, yeah. And I think if you've got a buddy, that can kind of see that you're flagging, they can just be like, Oh, Hannah, shall we let's let's take a breather, or let's go and like sit in that room. Because what I find is that I get a bit paralyzed with with exhaustion. I kind of I stop thinking I atop processing. I'm kind of just in there a bit stuck. Yep. So that's what Chris does is he will then intervene and say, Oh, should we go now? Or is they'll step in to help me get out of the moment? Because I feel like I suddenly lose the ability to kind of do that.

Hannah  34:28

And one thing I just remember was so kind! I had this when I was giving a lecture, and I got a horrible brain fog moment where I just suddenly lost everything I was talking about. I was trying to formulate my sentences and I couldn't get the words out. And I was so mortified and frozen and stuck. And everyone was just staring at me obviously because I'm the lecturer. And I just was like, I'm so sorry. I can't... I'm really sorry. And then I just kind of like started to well up but a student got up and then took me by the hand and then actually walked me out of the room. Tthey were so lovely those students. A couple more kind of came out. One of them brought me a hanky and they were like, It's okay. Just take a moment. But that moment where you, you freeze, and you can't really help yourself, you need that person to step in and take your hand and be like, Okay, let's leave the room.

Katya  35:30

Yes you need it to be acknowledged and to know that it's okay. And that people will stay with you in that. Yeah, you do need someone to help you tap out.

Katya  35:39

For the losing focus... My little brother can tell when I'm gone. I'm not sure why other people can't because I imagine that it's quite an ugly thing to see. But I start mouth breathing, breathing through my mouth, probably because I feel like I'm not getting enough air. And my eyes go super glazed. And I'm just like, I look a bit like I'm on drugs. (laughs) Ande maybe I am ... maybe like, when all the science has done, there'll be like, Yeah, at this moment. You were, technically, like this brain fog really was like being stoned. So yeah. You need someone to help you tap out.

Hannah  36:18

Oh, definitely.

Katya  36:19

I'm conscious of time and energy, shall we move on to new year's resolutions. Because I I do think we should share this. Especially because this comes out too late for Christmas. (both laugh)

Hannah  36:29

Yeah, definitely. Yeah. So if you're kind of thinking like, well, Christmas has come and gone.

Katya  36:36

Guys, I'll listen next year!

Hannah  36:41

In terms of new year's resolutions, I'm going to be really honest, I haven't thought about it, because I don't. I haven't really done New Year's resolutions for years. But I mean, especially for me with long COVID I just find that the whole idea of setting goals or expectations for myself, that scares me. In terms of goals that I've set for myself. Sort of unrelated to New Year, I really changed the way that I set goals for myself. So now, I think I remember mentioning a goal I'd set which was to tell more people about my long COVID. Like, stuff that I know is actually going to help me manage my illness and it's nothing about I will improve, I will be better.

Katya  37:25

I'm gonna cure myself in the month of January. Yeah. Yeah, that wouldn't be a very good news resolution. I get the whole - it's  just a day and we picked it. You know, I don't know my history, but I'm sure we picked it a while ago, like, New Year's resolutions isn't a new thing!

Katya  37:44

But for me, I, I have always set new year's resolutions. This year, mine is to learn more about long COVID. I had reached a point a few months ago, of just like, this, is it. I don't know what's wrong with me, doesn't really seem like anyone else knows what's wrong with me. I've read all of the books. And I'm kind of done. Because I had said, "I'm not going back to the doctors". And I think I expressed this to my to my dad really and seeing the fear on his face of just "please don't give up" has made me think I am not going to give up. And I'm gonna keep trying stuff.

Katya  38:28

I was listening to our self help episode just thinking like, there must be more stuff! I want people to tell us what haven't we tried. And so in a view to action that I have signed up for a talk which happens on the 28th of January. So hopefully I can tell you all about it. And it's with Oxford Open Immunology. And it's a talk with specialists in the field of immunology, and specifically long COVID from Yale, and St. Mary's Hospital in London. I ordered all of the books that looked useful on long COVID on Amazon, and I'm going to read them.

Hannah  39:10

That's yeah, for one thing, really well done for doing that. Because I know you've said in the past that you find medical literature and all of that quite triggering and can make you feel worse about yourself and the whole situation.

Katya  39:24

I do I've totally avoided it. I can't bear to read 'blood clots' and or 'stroke'. I just, ugh!

Hannah  39:32

I know. But yeah, well done for doing that. And I think, you know, what I was talking about in terms of finding peace with your condition and that radical acceptance of limitations. And I do think you know, it is about finding that balance, isn't it between accepting where we are in the present moment, but then also still having that hope and that motivation to keep searching for ways to improve? I liked that idea of setting goals that are actions rather than states of being. So it's like I will do these things to kind of, you know, see where that gets me to. That sounds, oh, that's really good. I'm really interested to hear what you find out

Katya  40:21

But I was thinking I could use the podcast to tell you how it goes.

Hannah  40:25

I'd love that I think other people would love to. And if you do read any books about long COVID, you know, we can have some episodes that are like book reviews, you know!

Katya  40:35

That's what I was thinking, I have so many books on my room. I was like, well, it looks a bit depressing, because they're all like 'fatigue', 'a history of fatigue'!

Hannah  40:43

Well, I'm about to read a book that came out, I mean, in 2008, but it's by a woman who kind of specializes in mindfulness for chronic pain. Vidyamala Burch, her book is called 'Living well with pain and illness'. what the book is about is being able to cope with day to day kind of physical pain and, and limitations, and kind of how you how your brain manages that day to day. And I think just generally, you know, the fatigue as well, you know, is a kind of a type of pain, in a way. So I'm planning on reading this book, just to see if it kind of gives me any insights into how to kind of live day to day with a chronic illness.

Katya  41:29

I think I think we'll figure this out together. I want the podcast to be something positive. So yeah, that's, that's for the new year/

Katya  41:40

I was thinking about this this morning, you have gotten so much better. I know, you will find it really hard to tell. But I can remember what you were like a year and a half ago and you would not have done a call at six o'clock for an hour and a half.

Hannah  42:02

I can't see it. Because it's so gradual. Chris put it like this, which I thought was really helpful. He was like, "well, it's just really slow". He was like, "If you were at the bottom of the stairs, you know, at your worst two and a half years ago. And the top of the stairs is normal. It's like you climb one step every six months".

Katya  42:22

Yeah. And this is a big staircase, by the way. It's not like... (both laugh)

Hannah  42:31

Yeah, if I have moved up like a few steps, it's hard for me see it and that's really nice to receive that feedback.

Katya  42:38

Yeah, you have. All right. Well done, Hannah. Oh, yeah, we should say Have a wonderful new year.

Katya  42:47

Have a wonderful new year.

Katya  42:50

Thanks so much for this thing. We hope you enjoyed this episode. And that you join us next time when we'll be talking about long COVID at work

Hannah  43:00

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to boundedenergy@gmail.com Or find us on social media at bounded energy.

Katya  43:11

And yes,that is me singing the jingle. A huge thanks to Harry Gould, the talented musician who lowered himself to produce it. And Ellie Atkinson, the illustrator who made our rather joyous log

Episode 2 - Long Covid Self-Help

Bounded Energy

Episode 2 – Self Help

SPEAKERS

Hannah, Katya

Katya 

Last night, I couldn't sleep. I was too excited about the podcast.  In the middle of the night I burst out laughing because I just had this image of you, I just imagined someone had to go into your flat and they would just find you half naked in your robe surrounded by dirty plates and clothes with greasy hair and electrodes all over your body from the TENS machine! And you in your goggle glasses just looking really stunned! I couldn't get that image out of my head. (laughter)

Hannah 

(laughing) It's a strong image! Also like really not very far from reality! You've essentially summarized my Saturday mornings.

Katya 

Hi, thanks for joining us in this second episode of bounded energy. In this episode, Hannah & I discuss the self-help tools we’ve tried in our long covid journey. The strategies that worked, and the ones that didn’t. You can find all the resources we mention in the resources tab of our website.

Questions/comments? or maybe you have a self-help strategy we haven’t tried yet? Reach out to us at boundedenergy@gmail.com or find us on social media.

Hannah 

Medical disclaimer: we are not doctors and are not giving advice. If you're struggling with any of the issues discussed in the podcast, please seek professional medical help.

Katya

I like what you’re wearing

Hannah

Thanks! I buy all these second hand clothes and then I get loads of compliments

Katya

Me too! The whole idea of buying new clothes its like - to do what in? To wear in my house? I’m on holiday with my brother Luke and the other day he realised I’d taken my bra off. And it’s because that whole level of clothes and comfort…

Hannah

I don’t wear a bra, I think it’s the breathing thing and then having a bra strap around my ribs

Katya

To any men who are listening, long covid makes me feel like I’m slowly suffocating sometimes so wearing a tight strap around my chest is just not…

Hannah

In my mind if I don’t wear a bra my breathing is freer

Katya

Yeah it’s like if a photo is going to be taken, fine. If not it’s like if you can handle it I can handle it (both laugh)

Katya 

I found something that I thought would... I don't know it cheered me up. I went through my phone to find the first message that I sent to you when I realized I was ill. So I got my dates right!  It was mid September 21. And I said, Hey, Hannah, just called and was feeling really upset and thought I should speak to you. I've been struggling with a really horrible fatigue since mid August. And I imagine you know all about that. I think I'm still struggling to accept it. And I just cancelled  plans last minute today with some friends for like the 10th time and had a bit of a meltdown. Anyway, it'll be really good to talk about it sometime because I haven't really found anyone who understands yet. And then you responded a couple of hours later saying Hi, Katya. Oh, no, I'm so sorry. Sad face. I'm absolutely here to talk about this. Ironically, I slept through your call, because I was napping. (This was this was your time of naps)! But then you said are you free to speak this afternoon and about an hour? I need some time to wake up properly and eat and I said hey, that works for me cool when suits you. But turn  around time Hannah! One hour! For long covid!

Hannah

I'm, like, really impressed with myself? To be honest, I thought i'd be three days late in responding!  But no, I did well, yeah. Oh, credit to you for, in that really difficult moment, actually constructing that text and sending it to me because I know that is really hard to do as well.

Katya 

I remember where I was that day. I was in my London flat and I was lying on the sofa. I think I had literally just finished this uncontrollable sobbing session and I sent you that message and and then we had a call and I can't remember the call. But ya know, I'm smiling so much, which is really weird. Because it's like, it's not a happy thing. But yeah. And one hour! Yeah, I just can't get out of my head because I still have WhatsApp messages on my phone from people that are months old. And it's like well- I'll get around to that when I get around to it. But someone would have to be dying for me to call them in an hour! (laughing)

Hannah 

(laughs) well, you know, you're a friend in need, and also the the whole fatigue long COVID thing I was like, oh shit. You know, because if you do have the same thing as me, yeah, then yeah, that should be followed up on

Katya 

Should we start?

Hannah 

Yeah, yes.

Katya 

I'm gonna set a timer and should we say in 20 minutes, we either stop or we take a 10 minute breathing space? Practicing what we preach.

Hannah 

Yes.

Katya 

We had this as a talking point for the last episode but we didn't actually get to it: What would you say to someone who was just diagnosed with long COVID or chronic fatigue, and are at the start of this journey?

Hannah 

I tried to remember what it was that I said to you on that phone conversation. And I really can't. But I think my, my biggest tip to anyone would be to get yourself out of the boom and bust cycle, if you can. Because being on that roller coaster of frequent spikes and crashes in your energy is really, really hard psychologically. And I felt much better once I was able to accept my energy levels and achieve a much more consistent level of energy. So that would be my biggest thing is, yeah, look at your like the patterns of your day and just try to get off the roller coaster.

Katya 

I just really want to cut you off there. Because I remember what you said in the phone call. Yeah, and you said it to me at the very beginning. You said you need to stay in your energy envelope. You said that to me in the very beginning. And that concept of - your energy is drastically reduced and you need to start adjusting your life so that you are not ending each day completely debilitated. Yeah. You did say that me at the very beginning.

Hannah 

Yeah, yeah. Oh, I didn't even realize I told you. (sounds very happy with herself)

Katya 

Gold Star!!!

Hannah 

Yeah!!

Katya 

So you're a great teacher Hannah, but I'm a terrible student because I'm constantly overdoing it. I can't help myself. Sometimes when there's music playing. I try and dance as much as I can without moving my body. (laughs)

Hannah 

Me too!  I find it really hard as well, to stay within my envelope. But I think the other thing I wanted to say, to anyone who is listening is it's really normal to feel scared that it's all in your head and to question yourself constantly. And I think if you can accept that as part of what the experience is like, of just having those doubts, and yeah, worrying about what other people are thinking of you, it's kind of unfortunately part and parcel with it. And I mean, I'm still working on this, which is, you know, feeling confident and sort of like, I've got conviction in... Yeah, this is real. This is happening to me. I know myself better than anyone else. And yeah, I don't know what you would call it like ...Gaslighting yourself?

Katya 

Yeah the first thing I put is this is real. It's not imaginary. You're not crazy. You really are sick. And you need to, not to sound too heavy or dark. But you need to take it seriously and kind of look after yourself in a very responsible way.

Hannah 

Yeah, yeah. Yeah. What else did you have to say?

Katya 

Well, I had another thing which my occupational health nurse said to me, because  I have this thing in my head which is : this is my fault. I've done something wrong (to end up with long covid). And with that brings all of this shame. Something my OH nurse said to me was, even though you're surrounded by many people who have emerged unscathed from this pandemic, globally, millions of people died. And you're a survivor. Which is really interesting, because then it's not saying, Oh, why me? Why did long COVID happened to me? It's, well, why didn't I die? Why am I still able to talk?

Hannah 

Yeah definitely. I hadn't thought of it from that perspective. I think it's so easy to just compare yourself to the people that have got COVID and have just recovered from it. Thinking of yourself within that bigger picture. Yeah. I mean, I find it hard to think in that way. And I was on the front line, and worked with people that died from COVID... many people that died from COVID, many people who were hospitalized for a really, really long time and, yeah, yeah, it's a good reminder.

Katya 

Yeah, and also: the road to recovery isn't straight. There will definitely be setbacks, but most people are getting better.  Because I do think you need that hope at the beginning. And that's true. Yeah, I remember reading in New Scientist ... it was an article called something like 'The end for long COVID is in sight', not the kind of thing I would normally read just because I hate disappointment. But it was saying at that time that 16 million people in Europe had been diagnosed as long COVID or post COVID syndrome. And it was basically just explaining that with COVID being everywhere you now have all these people with long COVID and a bunch of scientists looking for solutions. I feel more like yeah, it's just a matter of time before, you know, there are drastic interventions available to us.

Hannah 

Yeah, yeah, that is very true. Long COVID isn't being ignored and like it can't be ignored.

Katya 

I keep discovering long COVID. The more I speak about it, the more I find other people who say, Me too.

Hannah 

Yeah!

Katya 

I was speaking to a guy the other day, I was asking him what he does for fun. And he said, I travel. That's his hobby- traveling. He visited 22 countries in a couple of years. And then he said I can't travel anymore, because I got COVID in January, and I have no energy. And I was just like, dude, do you want to hear my podcast? And he hadn't given it a name. He hadn't thought about it. But it was just like, you know - I used to be a traveler. I don't travel anymore. And that's just my story. Yeah. He actually called himself lazy! That was the word he used.

Hannah 

Really?

Katya 

Yeah. He said, I've become really lazy since getting sick. And I thought, huh, you need to spend some time with me and my buddy Hannah! We’ll show you what real lazy is! (laughing)

Katya 

Yeah, yeah!

Katya 

Should we? Should we dig in to self help?

Katya 

Yes.

Katya 

 Okay, um, I was going to change the order and suggest we start with what doesn't work?

Hannah 

Sure. Can you go first this time?

Katya 

Yeah, I'll go first. I actually wrote in bold letters GOOGLING THIS STUFF. Googling long COVID cures is just a, like a dark rabbit hole of like madness and despair.  I googled chronic fatigue. And I watched this video that was like, This is Jessica. One day Jessica starts feeling tired. Two months later, Jessica's in a wheelchair. One of the comments was just like - right. So if you get diagnosed with fatigue your life is basically over...

Katya 

I don't know what the point of that video was. But I watched it. And I just remember thinking like, Dude, I wish I ...Why did I ?.... so I feel like number one, don't google your symptoms, get someone you love to Google your symptoms and feed your back the useful stuff. Preferably from  the NHS website or the Centers for Disease Control.

Katya 

Okay. There's so much stuff. I actually just want to say for me something that didn't work and that messed me up mentally, was ultra healthy eating. I had this weird thing at the beginning where I read this book of this woman who claimed to have chronic fatigue and to have cured it by drinking smoothies and doing yoga and eating salad. I know...just.... Anyway, for the first few months of my long COVID, I was just so militant. No sugar, must have spent a fortune on fruits and vegetables, no alcohol, I gave up tea and coffee!  And then a few months in when I realized that it wasn't making much of a difference, I started eating really unhealthily. And now that I'm  more  stable, I've gone back a bit to my healthy eating. Because I recognize that it does make me feel a little bit better if I have salad every day and fruits and vegetables, but I'm no longer under the illusion that chocolate is going to set me back. And I also don't think that a salad with pomegranates and avocado is going to cure me.

Hannah 

Yeah. Yeah. I think that. Again, it's kind of getting sucked in by enticing self reporting and it's just a case study. It's just this one person saying I did this and it works. And I think that one of the real dangers is when there isn't much research yet out there on what works. Instead you just get loads of single people saying, well I did this and it worked.  You can never know whether it is that thing that they did or whether they just got better by coincidence due to something else. But yeah! Oh my gosh, I totally feel you on the diet front because I've had similar things where I've tried to cut certain things out and I just I haven't been able to maintain it. And yeah, I don't think it's really that healthy to be being so militant and then denying yourself the stuff that you enjoy.

Katya 

Long COVID is hard enough without not allowing yourself a piece of chocolate.

Hannah 

Yeah! That's what I found is like, it's difficult as someone with long COVID, many of my avenues to have fun are no longer open to me. It's like simple pleasures, like having a G&T, having a bag of crisps watching a film on a Friday night, is the stuff that I really look forward to and keeps me going. (both laughing)

Katya 

yeah. With that I also have fancy and expensive supplements. That's in my list of things that didn't work. (I think when we talk about the do's, I definitely want to put in the probiotics. There's definitely a lot of genuine science there). But God my first supplement and vitamin routine was like £90 a month. And I mean...  I think it's sort of the expectation. Yeah, a supplement / a probiotic is definitely a good idea if you have long COVID. But you don't need to spend 90 quid. It's not going to cure you, basically.

Hannah 

Yeah, yeah

Katya 

And the last thing I had is exercise, because I tried to exercise at the beginning.

Hannah 

Yeah, that was my number one thing on my list of stuff that didn't work - exercise. Yeah, I really thought that was going to be the answer. Because that's just how I've always understood managing tiredness and fatigue in the past. And that really didn't work for me. I kept trying to go to these classes, which I, you know, I enjoyed so much before I got COVID. And I was so desperate to keep going with them. So I kept trying, and I was managing maybe about once a fortnight, but it was just like... Yeah, at what cost? This is only making me so much worse, and just destabilizing my energy for the rest of the week. But then I have looked into like, you know, that graded exercise thing of doing really small amounts of movement and building that up over time. I did do like a six week course of physiotherapy with the long COVID clinic, really, I just didn't see, you know, any real gain. I was gonna say maybe it would work if I had nothing else going on in my life. And I was literally just lying horizontal the whole time. And then the only thing I had to do was, like these small bits of exercise, but when you've got a life going on, and chores that you do have to do, you can't keep putting off forever, and a job to hold down. Trying to put bring any form of exercise into that... even small amounts, can just be the straw that breaks the camel's back for you that week.

Katya 

Well, yeah, the problem with graded exercise therapy is it's the idea that you would just increase your levels of exercise every day, without respect to how you're feeling and what else is happening in your life. And I definitely tried graded exercise therapy in the beginning in the sense that one day I would go for a two minute walk around the field. And then the next day, I did three, and then four, and then five. And I think I probably did this for like two weeks before I realized that it was getting worse and worse and worse. And I think that's the thing - graded exercise therapy is is really dangerous. The NHS and NICE have come out advising against graded exercise therapy for long covid patients. Because it's that forcing yourself to do more when actually there are periods with these illnesses where you just shouldn't do any exercise.

Hannah 

Yeah, yeah. I think as well, a self help strategy isn't going to work if it's not something that you can enjoy doing or something that you can maintain. Yeah, because I think lots of people have different ideas of Oh, try this. Try that try the other. But if you personally feel like you are literally forcing yourself to do these things every day, it's not going to last. So like for me, I was trying to drink this probiotic thing, which tasted like, oh, no, it was the most foul thing I've ever forced down myself. I just like every morning was talking myself up to it and in the end, I was like, I can't do this anymore. I was like...

Katya

I choose death!

Hannah 

Yeah! (laughing) I choose death!  Every time over this horrific yeasty drink! But anyway,  I tried that. But then also so I know that some people really say that cold water swimming, for example, really helps them in their fatigue. And, it's that thing of like, I hate cold water. And I've always hated it. It's not the type of thing that I've ever enjoyed doing. And yeah, I just, it's not sustainable. If it's if it's me, dragging myself to an activity that I hate. Because that mental energy, and that emotional energy that you use in trying to, do stuff you don't enjoy. It also takes your life energy beans away. You just won't sustain it. And then you'll be like disappointed in yourself and like you've let yourself down as well.

Katya 

(joking) Yeah it's your fault. If you had just taken that cold dip two years ago, we wouldn't be here! (both laughing)

Katya 

Speaking of cold dips, do you remember in Guernsey, jumping off the pier with your sisters? I thought I was gonna die. I was blue! I remember going back to your house and your mum looked really concerned.

Hannah 

(laughing) It's one of those things that as a Guernsey girl, I feel like every time I go to Guernsey, I need to do it at least once. But, you know, my family loves it. You know, my mum does it every day, but I just don't I just don't have the genes. I just...

Katya 

I now take cold showers and I find it really helpful.

Hannah 

We should move onto stuff that does help.

Katya 

Should we take a break and then move on to the self-help strategies that did work?

Hannah 

Yeah, let's go and let's have a break.

—- Jingle plays —-

Katya 

I'm laughing because we've just had a break. And Hannah's just pulling herself up right. You know what helps long covid Hannah? A cup of tea and a chocolate biscuit! (both laugh)

Hannah 

Now, lying horizontal definitely is very nice. When it gets bad, and you literally feel like you are just sort of being pulled into a horizontal position by like magnets or something that you're resisting. No, stay upright! And when you finally like, let go and lie down. It's just bliss.

Katya 

Yeah, my parents were in Spain for a month when I was at my worst. And this week I had just a normal day at work. I finished at three. But I had to do some scanning for my mom.( I didn't have to I wanted to I wanted to help her.) But I just yeah, oh my god, I had overdone it. And she I could see she was kind of shocked because I was sat at the dining table, head and top... as much of my body as I could lie on the table while still technically being seated was laying on the table. My mouth was open and I was like stunned. And she was kind of like, oh, I don't know what to do!.

Hannah 

It's, it's good for people to see you at your worst. I think it's good that people see it.

Katya 

I agree. And I put that at the top of my what works self-help long COVID list - telling people. Now that people know I'm sick, the expectations are less, people don't mind if I don't do things. It's just every part of my life has changed for the better now that I've started telling people I have long COVID. Long COVID is bad enough but it's it's worse if you have to hide it.

Hannah 

I definitely felt a pressure to always sort of talk about COVID to other people with a silver lining or sort of sugarcoat somehow so It would always be Yeah.  I haven't been doing so well, blah, blah, blah, but you know, I'm getting better slowly or it will get better with time! Yeah. And I would always feel like I had to present this narrative of improvement when I really wasn't necessarily improving. And I think I also tend towards euphemism of oh, you know, not been not not been so great. But you know, the, the fatigue hasn't been great. But otherwise, I'm fine. And I do think that it then means that well, of course, my closest friends and family aren't going to understand what I'm going through, because I'm not being honest. So I've set that as something for myself to work on now when I'm messaging or speaking to my friends or family, particularly my family members, I'm really consciously to make sure I don't present a better picture. And I think it's working, you know, I think it helps them to understand, then it means that they're more likely to reach out and more likely to be able to anticipate my needs.

Katya 

Something I've started doing is answering the question How are you? honestly, I've started saying, you know, I'm not great. And sometimes they don't know what to do. But if I keep saying I'm great, and then they expect me to be great when they see me in the flesh!

Hannah 

Yeah, that's true.

Katya 

But it also I also actually had to tell my family & partner to stop telling other people you know, when people say How's Katya? yeah, I had to say, Could you stop saying that Katya is fine. Because then I meet people, you know, who are maybe in my family or in my friendship circle, and they don't understand maybe why 20 minutes in I've stopped talking or why I didn't come over for a birthday or ... a while ago, now, my partner Matty's brother had his 30th birthday. And I've known Matty's family for ages and, and I was in a real brainfog and I went to the party, and obviously, no one knew there was anything wrong with me, but I didn't know anyone's names! And not only did I not know their names, I didn't know who was related to who. So I was saying to brothers and sisters, when did you guys meet or saying about someone's Aunty like, I was talking to your mum. And one young man who obviously I've known for ages came up and gave me a big hug, and spoke to me for 10 minutes. And when he walked over to me, I was like, Oh, my God, I know you but I don't know who you are. And yeah, basically, I just felt like a mess. Because I was thinking, they don't know I'm sick. So they all know I'm really weird! -  odd that Matty's girlfriend of 10 years forgot my name! Do you know what I mean? Yeah, everything's better now that other people know basically.

Hannah 

Yeah, yeah. Wow, that brain fog sounds really awful.

Katya 

I get it all the time. I had it at the start of my recent setback. I got lost on the way to work.

Hannah 

Really?

Katya 

Yeah, I was standing in... I'm not good with directions anyway, but it's like not this bad. I was standing at the crossroads, and I had no idea which way to go to get to my building. It was ridiculous.

Hannah 

That's scary.

Katya

Yeah. And I was like, I remember, like walking in [to the office] and sitting down. And just a bunch of people coming up and talking to me and me being like, no idea who you are! Act Natural! Like, if you can get through this interaction without them knowing that you don't know who they are (both laughing)! Anyway, sorry. So from my top of the list of what works is telling other people and talking about it.

Hannah 

Yeah, yeah. Yeah, I was gonna say actually, I think your brain fog sounds really profound and scary. I've never had it like that. But I definitely have it where I like reach a limit. And I stopped being able to process what people are saying to me, like, group conversations when they move really fast and and it's multiple voices. And after a certain point, I'm just there like smiling, laughing like, Oh, I have no idea... I've lost the thread of this convo completely!

Katya 

I get really irritable, I don't smile, I'm just like, can you please  just shut up please. I get really irritated. It's the overwhelm.

Hannah 

I just, you know,  I think I just channel a grandma! You know, like when when old people are deaf in conversations and they just sit there with this little smile and nod. I can literally just channel. Yeah,

Katya 

yeah, yeah. (laughing)

Hannah 

Yeah, were you did you have more things to say?

Katya 

I mean there's more you can do to help than just talking about it! (both laugh)Yeah. I was gonna say we should explain what pacing is Hannah.

Hannah 

Yes. Because they're those three P's aren't there. There's pacing, planning and prioritizing.

Katya 

Yeah,

Hannah 

They are essential tools. So yeah, the concept of pacing is doing things slowly and in chunks and manageable chunks and not trying to do too much too soon. So it's about spreading something out. So I did this the other night, actually, where I was really determined. I was I am desperate for like, a really good pasta dish. So I cut my vegetables earlier in the day. And covered them up, and then did the cooking later in the evening. And yeah, that's because I was just really motivated for this pasta. I was like, I will do this.

Katya 

(bursts out laughing) -Yeah, like 9am in the morning. Like, you know what? It's pasta day! 10 am. I chopped my carrot sitting down. 11 o'clock. Take the peas out of the freezer. (both laugh)

Hannah 

A Stellar example! The next one - planning. So planning in advance. Working around what you predict your energy levels are going to be kind of across a whole week or within a day. And then the prioritizing is always asking yourself that question of what is the most important things I need to give my energy to today? And what things can be deprioritized and left to another time? Yeah. And yeah, I definitely feel like those are really helpful kind of principles to follow. They really are. But, you know, obviously, there comes a limit when I read that, and I'm not having a good day. And I just feel like, oh, like, it's all easy and good to say that. But, you know, I have like...

Katya 

When you've got one bean, and you're just choosing which seat to sit in?

Hannah 

Yes. Yeah. Yeah! And I think I always feel like there's that point where, no matter how much I pace and plan and prioritize, there are jobs that are important that I just cannot seem to be able to do. And yeah, so I get really frustrated with that. I just sort of think, yeah, you know, I've been on my own in this house for a week. Without Chris here to help me with the chores.

Katya 

I had to ask you what your house was like?

Hannah 

You know, it's really messy. I've got clothes all over the place. After a while the things that you don't prioritize, yeah, it comes to a point where you're like, What do I do now? I'm gonna have to prioritize this. I don't know, I just, I find it really hard seeing jobs stack up. That for me feels really stressful. So you know, that it's, you know, it's not like a completely straightforward answer of just prioritize. It is complicated. making those choices about what to set aside and what to let build up and when to address those things that you've been putting off.

Katya 

I think the three Ps are kind of all you have, in terms of what we know works for long COVID. Because it's the other side of, well, you definitely can't do everything. So how do you do what you can with what you have? And it's interesting, I find it interesting now, because I've realized how much I have learned since the beginning because I do the three Ps across the course of a day. Knowing I want to do this podcast means I have said no to various things, spent my morning lying down. I do it across the week, so I have to work So that means that Sunday, I need to do nothing. And then I do it across the course of a month. And that's the three Ps.

Hannah 

Yeah, definitely. I think broadening out and looking at your whole month and Looking at what you've planned for yourself and be like, can I actually do social things? Two weekends in a row?

Katya 

Yeah. And the answer to that is...  hell no. Who do you think I am???

Hannah 

(laughing) Yeah, it does mean I end up booking things with friends way in advance, because I'm like, Well, yeah, I've kind of maxed out on my availability for like, the next couple of months. So I'm gonna have to go into December or whatever.

Katya 

I remember in the beginning I wanted to see you and you were like, I'm doing something this month. Next month, I have to see my sister, can you do the following month? And I was like, living free and footlose. And I was like, why is everybody so busy??!! But weren't busy. You just need a month between catch ups!

Hannah 

Yeah. (laughing)

Katya 

You want to say anything more about the three Ps?

Hannah 

No, I think I've said my piece I wanted to get across like, It's not simple. You have to make difficult decisions.

Katya 

Yeah, you do. And you have to be so flexible with it, don't you? Because  you just have to reevaluate everything, constantly. But that, for me is why it ties to the first telling everybody, because I do an awful lot of last minute cancellations. But if people know, then it's just the sense of well, you know, when I thought I had this much energy, I planned this. Now I have this much energy. So I can't do this now.

Hannah 

Yeah, yeah. I tend to accept invitations with that caveat of it may not come to fruition

Katya 

Well, yeah. Because at the beginning, at the beginning, I said no to everything. At the beginning, I was more afraid of letting other people down, than spending an extended period of time alone. So at the beginning, I just said, no, no, I can't come to a birthday party. No, I can't have a phone call. But then I spent months on my own. Whereas now that I'm saying, Yeah, I'll come and then canceling last minute when I have to. I'm happier. Because I see my friends more.

Hannah 

Yeah, for one one situation, I was invited to a friend's wedding, but I was invited to kind of the the ceremony and the reception. And I said, Oh, I will, I'm really sorry, but because of my energy. I'm not going to cope with the full day. Can I just come at the end for the reception? And you know, she understood completely. So that that worked better, In that I could still say yes, but….

Katya 

that's the prioritization. Right? For me, I really want to see my friends and being with my friends is the thing. So I will get a cab there and then get a cab home. And that comes from a place of great privilege being able to afford the cab but it's it's also Yeah, money. Money is another type of energy. Right? And I spend, I spend a lot of money now on cabs and no money on makeup or clothes.

Hannah 

yeah, yeah, definitely. Yeah, like the self care stuff. I mean, you may may have noticed Katya that my hair is very greasy this morning.

Hannah 

no I didn't

Hannah 

,oh, okay, well, that's kind of you.

Katya 

But now you mention it... eww! (both laugh_

Hannah 

The self care stuff is like, so I had this when I went to go get my hair cut, because I had been putting it off and putting off I was like, No, I will do this. I will go and get my hair cut. And then my hairdresser was just making, you know, chit chat and talking about like, hair conditioning and shampoos and stuff like that. And she was saying, Oh, well, you know, how often do you moisturize your face? And I was saying, I don't. I just that is like, I've cut that shit out of my life. I'm like, I don't really moisturize my face. She was like, oh, oh, and she was like, I was gonna say, you know, the number of times that you moisturize your face. That should be the number of times you do your hair.

Katya 

 What?? That doesn't sound very scientific!

Hannah 

Yeah, I know. I know. And then what's the other one? Oh, yeah. Like she was asking about like, what hairdryer do you have? Yeah, you know, how often do you like to blow dry your hair very often?

Katya 

As if you're gonna spend precious energy holding a heavy machine over your head for 10 minutes!

Hannah 

I know! I know!  I I felt like I was really letting her down because I couldn't have this, like nice kind of social chat about my self care routines because I was like, my self care routine is just soap and shampoo. (both laugh) And yeah, she's told me to do two rinses of shampoo and I was like, I can really only make it to one. And then she was saying, Oh, well, you know you should at least dry your roots because you can get a fungal infection in your hair if you don't dry your roots. And I was just like,

Katya 

Oh my god! Like how stupid does you think you are that you like wash your hair and then put a swim cap on and just like sit in a really humid enviroment. (both laugh)

Hannah 

(laughing) fungal scalp is that a thing?

Katya 

It's not a thing Hannah!

Hannah 

I just don't need this. I've literally cut out everything to the bare minimum for my routine. I’ve become okay with that but it’s weird when you get that insight back into the world of womens self-care. That stuff has gone from my life.

Katya 

Something we should add to our list of resources is an electric toothbrush. Because it’s not two weeks of being too tired to brush properly its a year and a half, two and a half for you. Even in peak long covid crash you can still sit on the floor and hold it against your enamel and know its doing something.

Hannah

Yeah its so weird these tiny things!

Hannah

you were going to talk about how the cold showers and stuff actually have helped you.

Katya 

So for me, I've been doing the Wim Hof Method. And I find it enormously helpful. So I don't do everything. Wim Hof isthis really, what's the word? Kooky strange man!

Hannah 

he's eccentric

Katya 

  He is the opposite of us, energy wise. he's like 70. He has run marathons in the Sahara Desert, he spent hours in freezing ice baths. He's just so vibrant. I watch him on YouTube. And I just think I want what you have. But there are two main parts of his method. One is this breathing exercise. That's just like Tumo breathing, which is this form of it's called cyclic hyperventilation. So you over breathe for like 30 seconds, and then you breathe out and retain your breath. Anyway, there is some science around it supposedly reducing inflammation. I don't know if that's true at all. But I find it really relaxing. that's one thing. So I do the breathing every morning.

Katya 

And then the other thing is his method has you do daily ice baths or cold showers. I do cold showers. And, gosh, for me, it's amazing. I think the first thing I just want to say is I don't do these things religiously. I'm extremely gentle. And some days when my lungs don't feel great. I don't do the breathing. Some days I do one round. Some days. I feel great. And I do four rounds. For cold showers, some days, I can stay in for three minutes. And I love it. Some days. I'll do one minute. Some days I kind of you know, I talkto myself, and I'm like, I really don't want to do this today, Katya. And then I say, Okay, well, could you do 10 seconds? And some days? I'm like, Yeah, and I do 10 seconds. And some days I say like hell no. And i wash in the sink and just go about my day.

Katya 

 I'm very gentle. The cold shower - Oh, my goodness, it has a transformative effect on my mood throughout the day. So I get a boost of energy,  this is after the shower. But I am just much, much happier on days when I've had cold showers. And my tolerance for cold has massively increased. So the cold showers at the beginning were extremely challenging. And I had I literally built up from 10 seconds going upwards because I was so afraid of overwhelming my system and making my fatigue worse. It didn't and so I did 20 seconds and then I did 30 and most days I do a minute now. I love it. I have this very precious morning routine where I meditate and I do very gentle stretching, Wim Hof breathing and a cold shower. And the days when I do it are better than the days when I don't. But if anyone's listening to this and is thinking Hmm, interesting. Yeah, it's not a cure. And Wim Hof has like a huge disclaimer, thebreathing isn't for everyone, run it by a doctor and just be really kind to yourself.

Hannah 

Yeah, yeah. It's really reassuring for me actually to hear you say how you've kind of modified his method and you modify it day to day, depending on how you're feeling. I think that's really good idea. And I think, I don't know if you feel this, but when people talk about stuff that they do, or things that work for them, I feel anxious that I'm not doing enough to help myself. And I feel this sense of guilt of like, oh, gosh, that sounds really like impressive. Gosh, I don't do that. Do I not have enough willpower? You know, it comes down to that fear that like I'm somehow to blame for the way that I am. And I just Yeah, I have to kind of put  those thoughts aside and be like, Okay, this isn't about you. This is about someone else having a good experience from doing something. But actually, kind of the way that you described it was that you've found just a fulfilling morning routine that you adapt depending on the day to yourself, and like, that's really nice.

Katya 

For me, the Wim Hof stuff is the same as my food. Initially, I was like three minute shower every day, three rounds of breathing. And then I just found that I started not doing it and yeah, started actually feeling worse because I just wasn't doing it at all. So for me, like, gentleness is the only way that I can do it at all. Yeah, I'm not a soldier. I can't really do anything religiously anymore.

Hannah 

Yeah, yeah.  I think it's really common to think about self help stuff in that all or nothing category. But yeah, I like the sound of that.

Katya 

Yeah. And anything else on your list, Hannah for stuff that helps?

Hannah 

Um, I did have like a, like a mental list. But I've kind of lost track of what I've said and what I've got left to say,

Hannah 

okay, top of Long Covid Self Help dos: Write a list! because your intermittent brain fog will stab you in the back!

Hannah 

(laughs) Oh, yeah, I think something that did work for me for a while was going to see an acupuncturist.  I would leave the sessions feeling a lot better, more at peace with my condition for a start. Yeah. Andl I would leave feeling lighter in my body, like my muscles would feel a bit looser bit less achy. You know, I didn't notice some, you know, miraculous transformation. But, you know, part of the reason that I stopped was because work got in the way, getting to and from an acupuncturist takes energy that I don't have. And it was a cost as well.

Katya

So I tried acupuncture too. But I stopped because I experienced a side effect of acupuncture that my acupuncturist had warned me about. The side effect was a termporary worsening of my fatigue. DUring the session I felt really relaxed but then on the way home exhaustion set in and it stayed for 24 hours and it would dissipitate and I’d go back to my normal state. But I’m curious to know if anyone else has experienced this? Or is able to explain it?

Hannah

I didnt have that with acupuncture but i did go and see an osteopath during long covid and after I was wiped out for 12 hours at least. So maybe its a similar mechanism?

Katya

I wonder if the fatigue is evidence that something is happening? But i just couldnt find enough science on it to assuage my anxieties. Why did you see an osteopath?

Hannah

For general tiredness and backpain. I sort of went there as like well let’s just give it a go it may be the thing that lifts my fatigue. But when you go for a session and you pay for a lot of money and you dont see results immediately, I gave up. I can’t afford to go for multiple sessions, unless I’m feeling noticeably better after the first session I’m not going to go back.

It’s that commitment you have to make with time energy and finances without knowing at the end if you’ll feel any different. It’s a risk/gamble that I’m not willing to take.

Katya

So yeah, accessibility and cost. It's It's such a shame that these really helpful treatments are not accessible for everyone. It's the same with talking therapy. Do you know how much it costs on average talking therapy in London? This is only from my experience on Bupa this is not a survey. One hour Skype therapy London.

Hannah

Oh gosh. What £50, £60?

Katya 

£100!!! One man wanted to charge me £120

Hannah 

For one session????

Katya 

Yeah.

Katya 

 Oh my gosh.

Katya 

And I was like, what is what is it that you did exactly for £120 an hour? Because like, I know you're not going to cure my long COVID?

Hannah 

Gosh, yeah,

Katya 

Do you have anything else that works?

Hannah 

Oddly, in the way that you've said how much cold water helps you for me, my soothing thing that like relieves my pain when I get out is having a hot steamy ...bath. Sounded like I was going to say something really dirty! (both laugh!) but it's just a bath!!!

Katya 

In the beginning  I had a boiling hot bath, sometimes twice a day, it was the days where I didn't leave the flat, I was just constantly dragging myself to an unbelievably hot bath. So yeah, I remember Matty being like, how is the flesh not melting from your face from that dangerously hot water? And I was like, this is the only exercise my heart gets.

Hannah 

Yep, pretty much. And I have recently got a Tens machine, which is something that pregnant women use. And you have these little pads that you put that you stick to your skin and a little machine that sends an electric current. So I've been using it on my legs and my arms and my areas of muscle pain, which actually does help. Yeah, I've only been using it for a few weeks, kind of roughly every other day for like, you know, half an hour to an hour or so. And it does actually relieve the pain temporarily. So it is again, I don't know, you know, it's not a cure, but it is just symptom management. It just helps to afterwards, my muscles feel looser, and they feel less achy.

Katya 

I'm gonna Google that. That's interesting. Yeah, muscles, something I guess that I have on my list is really gentle yoga. There are a couple of Yoga with Adriene videos that are pretty much seated stretches that really help because a year of sitting down Oh, my God, my body, my muscles are tight and sore. And I love the gentle yoga that I do. But sometimes I don't even have the energy for that. Yeah. So if there's a way to stay seated, but also get the benefit of movement... (both laugh)

Hannah 

 I'll send you a link to the one that I got

Katya 

Okay. I have also probiotics and prebiotics [on my list]. I feel like I'm not going to go into that. But just I take the phyto V and Your Gut Plus. From the long COVID trial.

Hannah 

me too!

Katya 

 Have you noticed any change with that, Hannah?

Hannah 

I don't know.  not really. But I'm still taking it because it's like it's reasonably priced. And I just think it can't hurt. I'm sure it's doing something. So I am going with it. You know, it's easy. Yeah, it's affordable. Yeah. I'll see if I can find the name of that, like disgusting probiotic drink. Just if anyone wants to try...

Katya 

I don't think you can name them! Yeah... you can't be like  Jeffrey dadada, who made this disgusting drink. (laughing)  But yeah, so yeah, for me probiotics made a difference. But then I just found that going from a really expensive probiotic to a cheap one didn't matter. So now I take the cheaper Your Gut plus.

Katya 

Something I really want to mention is non sleep deep rest. There are lots and lots of free non sleep deep rest tools on the internet. My favorite one is Andrew Huberman NSDR on YouTube. It's  10 minutes, like yoga nidra. So you lie down, close your eyes, he tells you how to breathe.  I work from home and I find that if I put one in my morning and two in my afternoon, they revive me a little bit. I did one in our break. I couldn't recommend that enough, especially because meditation is something I would really recommend. But meditation is the kind of thing where it's hard to start meditating when you're already in mental stress. But the non sleep deep rest tools that you can find online.. I feel like it's more beginner friendly.

Katya 

I just wanted to mention one more thing for me: my breathing physio exercises. And also, I don't do them at the moment, but my singing lessons. From March 22 to this August, I went from a 15 minute singing lesson up to 45 minutes. And my breathing got so much better. And like the first few singing lessons we just did breathing and we didn't even sing. And by the end of it, you know? Yeah, like we did breathing exercises. We did lots of sitting down. But we also sang a whole song, sometimes twice in a lesson, which for me was just unreal. To sing a whole song start to finish!

Hannah 

Yeah, yeah, definitely. That sounds like such a nice way to work on your breathing in a way that actually is fun.

Katya 

Yeah. Breathing physio is being used to help people with COVID. So I would definitely say if it's something you struggle with - ask your GP. I didn't even know I needed it I just got referred by my GP. And it was only when I went to the physio, that I was like oh, yeah, you're right. My breathing is not good.

Hannah 

Gosh, yeah, maybe I should see a breathing physio because yeah, I haven't. I've just went to this exercise classes for the physio that I saw for long COVID. Yeah, but that sounds really good to have a professional to give you just really dedicated advice and training on just your breathing. Yeah, yeah.

Katya 

Should we stop there, Hannah. I just think, how are you doing energy wise?

Hannah 

I'm feeling tired. Yeah, let's, let's stop there.

Katya 

And we can just put things we wanted to mention here we can put into the next podcast. I really want to complain about the annoying things that other people say so we can just do that next time.

Hannah 

Yeah, definitely, definitely. (laughing)

Katya 

We'd like to thank you so much for listening. I really hope you enjoyed our conversation and that you join us next time.

Hannah 

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to bounded energy@gmail.com or each out to us on Twitter at bounded energy.

Episode 1 - Post Covid & A Podcast

Bounded Energy

Episode 1 – Post Covid & a Podcast

SPEAKERS

Hannah, Katya

Hannah 

Chris has gone away today!  He's gone away with his mates on a little lads’ trip. I waved goodbye to him at 11:30. And it’s just that, since I had COVID, we just haven't been apart. So it just feels really weird that he's gone. Also, he does so much around the house! He's gonna come back, and the house is going to be a complete state. I won't have done the dishes. There's going to be cat hair everywhere. Oh, God!

Katya 

I totally have that. I have that because I just don't do housework anymore. But I remember - it wasn't at the beginning of COVID, but I was still really bad - I had been alone in the flat by myself for a week or something, and I would just take stuff out and put nothing back like I would take off my clothes and just walk away from them… And then I think something happened that meant Matty went back to the flat before I had gone home and done an emergency clean (which takes a whole day anyway). And I think he sent me a message that was just “you live like a pig love”!  And it's been a year now, so it's really hard to still be like … but I still... genuinely cannot tidy this shit up!

Hannah 

Yeah. We'll see what this week brings. Yeah, I feel quite anxious that he's gone. I feel quite nervous. I'm like, I don't know what I'm anxious about. I just feel a sense of unease in my body that he's not here, which is a bit weird…. I don't want to be dependent on him and his cleaning abilities!

Katya 

Sings: I'm having a good day (minute/hour/week). What to do and how to be, with the beans  given to me, me and my bounded energy... Hi, you're listening to Bounded Energy with me, Katya.

Hannah 

And me, Hannah.

Katya 

We met at uni and have been close friends for over 10 years now. In this series, we discuss the ups and downs of living a life with less energy than you'd originally planned to have.

Hannah 

Recently, our energy has been bounded by long COVID. But we also want to hear about your experiences. Send us questions and comments at boundedenergy@gmail.com. Or find us on social media at bounded energy.  Medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya 

Yeah, I was thinking about this yesterday, just that sense of like, not only are we not doctors, but I also deliberately avoid medical literature on COVID Because I just find it Yeah, triggering.

Hannah 

Yeah.

Katya 

Hi, this is Katya. And just before we begin, I need to do a quick intro. Because Hannah and I are old friends, but total noobs. And in this first episode, we just dived straight in. We were so excited to talk to each other that you'll probably notice we seem to forget anyone else is listening. So just an FYI. When Hannah mentions Chris, that's her partner. And when I talk about Matty, he's mine. An American friend of mine mentioned that our voices sound really similar. So for the record, the lady with the soft croaky voice is Hannah, and this is me.  But if you really can't tell who is who, there are transcripts on our website. In this episode, Hannah and I talk about how we ended up with long COVID and how it's changed our lives for the worse and the better. I hope you enjoy listening to it as much as we enjoyed making it.  Okay, yeah, should we start them? 

Hannah 

it's really hard for me to remember... I got COVID I think for the first time in March 2020. And I had mild symptoms, but the fatigue set in pretty quickly. And I've just never been the same since that time. And the long COVID initially was breathlessness, extreme fatigue. But since I've had COVID a subsequent two more times in December 2020. And then in June 2022, my long COVID symptoms have shifted slightly. So after the second time of getting it I started to get weird neurological symptoms which have subsided now. Since the third time of getting it I've noticed now my long COVID is characterized by much more like muscle aching and muscle stiffness. Yeah, so what my long COVID has looked like has changed over the two plus years that I've had it

Katya 

When did you get diagnosed as having long COVID and what were you like then? You just had it for so long! You got sick in March,  and it's not until the next year that it has a name. I think the really hard thing with long COVID is when do you know it's long COVID. When do you stop waiting for yourself to get better? I have a memory of one day in August 2021. My fatigue was slowly setting in. And it didn't have a name, and I wasn't really believing in it. And I rode my bike to go and get a flu jab with Matty. And on the way there, I thought I had a flat tire. I thought I had two flat tires. And Matty checked my tires. And he was like, no, they're totally fine Katya. And  I made him switch bikes. I just didn't believe that my tire wasn't flat.  I felt like I was cycling through water. Yeah. And I just had that memory. And it's because I was in denial. So much denial that I didn't think there's anything wrong with me. I was like the bike is broken!

Hannah 

Umm that would have been in 2021. It was probably then because when I started really giving it a name and being like, 'Yes, this is long COVID', was when I got referred to the long COVID clinic. And that would have been in 2021, you know, over a year after actually getting COVID. Because when I first got COVID, there were no clinics. So it was something that I had to wait for.  I remember at the start of the pandemic, people just didn't know that long COVID was a thing. It was just like, wow, these symptoms are hanging around, and like, I'm really not getting better. And I've heard other people aren't getting better as well. And then, just over time, our awareness grew. And yeah, I was like, Oh, crap, I think I'm one of those people. Yeah, where it's just sticking around.  Oh, god. Yeah, it took me a while to accept it as well. I mean, you know, a good few months before I was like, right, this thing is here to stay, and I need to start living differently. When I was first recovering from it. I thought that my breathing would get better by gradually training myself to get back into exercise. So I was taking the stairs all the time,  and then I would be getting up to the wards panting! Oh, my God! I thought this is what I had to do to build my strength up. But all I was doing was just like making myself so much worse.  I was really just tackling it as if I was just trying to get back on track after a cold or something, you know?

Katya 

What were the worst symptoms?  By the time you went to the long COVID clinic, what were you still suffering from?

Hannah 

By the time I got to the clinic, I was still suffering from the fatigue. So just the extreme exhaustion and feeling like, I had no choice but to lie down. And dizziness, dizziness was a big problem for me. It's not so much nowadays, but it was at the start. And the breathlessness. The shortness of breath was still there. And it would creep in after really, really light activity. And it would creep in when I was doing nothing. Yeah, I mean, I remember trying to come back to work after having been off ill with COVID. And then I was sitting in a meeting and I could just feel my breathing, just start to get really, really, like labored and I was just trying to keep calm and be like, 'Look, it's fine. Just take some deep breaths and it will pass' but it wasn't it was just getting worse and worse. And then my boss turned to me and was like, 'are you okay?' And I said, 'I'm sorry. And she my poor boss had to drive me home! So then I kind of had to stay at home for a little bit longer and try again. Yeah, it was so strange because the breathing would come out of nowhere and it felt so just out of sync with how I would be feeling! So like in the meeting, I was feeling pretty relaxed. I was feeling really excited. Because I was starting something new at work. And then yeah,

Katya 

And then your body 'ahh! Your mind is like 'oh how great' and your body is like 'I'm in hell!'

Hannah 

Yeah 'shut this down now!'. So I think when I got really scared was when I was getting neurological symptoms and yeah, like just weird sort of shooting and tingling sensations like electric shock sensations in my neck and feeling really dizzy and like when I was walking, I was veering off to one side. All of that has subsided now, but yeah, that was when I was like, Ah, I'm Yeah, this isn't right. This isn't okay. I think I need to go to the doctor.

Katya 

The verring off to one side I've had. And that's terrifying because that can happen on the side of a road! Yeah, I've had it for I think I'm walking straight. And then I'm, I'm not, I'm somewhere else.

Hannah 

Yeah! And I would have it where I felt like I was keeping central, but I was having to work really hard to keep myself working walking centrally...

Katya 

It's a bit like, when I would play Xbox with my brothers, and I'd be given the rubbish control. Yeah, you'd be jamming to the left, but your own body is malfunctioning. Yeah.

Hannah 

Yeah.

Katya 

 I remember being surprised or noticing that it didn't get better with sleep.

Hannah 

Yeah. I would wake up feeling like I hadn't slept, or, or feeling like I was jet lagged or something.  I mean, I've never been a morning person. Like, I wake up. I'm always groggy. And it takes me a little while. But I mean, this was like, on a whole other level. Where it would take me like, a couple of hours, to feel like I was sort of functioning anywhere near what I would expect for myself in the daytime.

Katya 

I had the opposite. I had the devastation of waking up in the morning. And for 10 seconds feeling okay. And then the realization when I tried to move some of my part of my body, that actually I still wasn't okay, just crushed me. It reminds me of when I lost my voice for 12 weeks, I would dream that I could speak. And then in the morning, when I tried to speak, and nothing came out. I just had this huge wave of sadness. And the same thing happened at the start of long COVID. I would forget that I was ill overnight while I was sleeping, wake up in the morning and just, it all comes back. Yeah, it's just like...

Hannah 

yeah. Would you kind of have a period of time in the morning where you were moving about feeling normal? And then it would creep in?

Katya 

At the beginning? No. But as I got better, yeah, yeah. As I got better. Yeah. And I would say  there were times when I actually would deliberately tire myself to remind myself that I was sick. So because my mornings are slow, I would maybe deliberately make myself climb some stairs just to... because that sense of unreality is a real thing. Yeah, I regularly forget that I'm sick because I've adjusted my life so dramatically! Like these last six weeks, I barely left my flat. So if I have a day where I'm comfortably walking around the fat, I can forget that - laughs- there's a reason i've been in the flat for 6 weeks!!!

Hannah 

Yeah, yeah, totally.  I do that all the time. I mean, my life is so so low in activity now I forget sometimes just how ill I am. And then when you try to do stuff that's like anywhere near what you used to do, and it's like...!  But that sense of unreality though, a feeling like this isn't real, like this is just all in my head.

Katya 

Yeah. Yeah. (joking voice) Have you ever thought that maybe it is in your head Hannah? -both laugh-.  You know the day someone told me to try exercising, and I thought about explaining that I can't possibly exercise. And then I just thought ... I'll think about it. Okay, I've thought about it.

Hannah 

-laughs- Have you tried pushing yourself further down a hole?

Katya 

Have you tried not being a whiny little bitch? 

Hannah 

-both laugh-

Katya 

Is there anything else you want to say about what long COVID was like at the beginning?

Hannah 

The thing is I don't want to tell a sob story or be like, oh, woe is me. I had such a hard time. I don't want to reach out for sympathy or anything. But I think because I had COVID so early in the pandemic. It was pretty lonely at the beginning, because I heard of people that were struggling to bounce back from COVID after getting it around the same time as me, but they were signed off sick at home and they weren't colleagues I knew. So there just wasn't really anyone to talk to. I'm sure if I'd really looked, I could have found people online. But like, I just didn't have the time or energy to do that. And so yeah, I just didn't have anyone in my immediate circle that was going through the same thing. So yeah, it was pretty lonely.  And then Katya came along. -both laugh - Yeah, but what about you? When did you get long? COVID? And what was it like at the start for you?

Katya 

So I got COVID for sure in May 2021. And then just like you, Hannah, I just didn't get much better. It was like I had a brief improvement from May. But I just had this fatigue lingering at the back of everything. And fatigue isn't the word. I had to explain it to one of my colleagues yesterday, because I feel like you say, you know, by September, I have chronically fatigued and they're like, oh, yeah, yeah, they think they know. I said it's like running a marathon on no food and then being given bad news at the finish line. It's that complete exhaustion that for me is always just the other side of hysteria. And from my, my May downhill walk to September, September, almost through to end of October, November I was basically bed bound. Literally just going from the bed to the toilet to the kitchen and back. And I just... who knew that watching television or reading books, or even listening to someone talk to you would be so difficult and be tiring? Yeah, but then, then I just slowly got better. I didn't get better in that I was ever exercising or dancing. But I slowly returned to normal working hours. I would say August 22 was my absolute health peak since COVID. But that was still like sitting or lying down. 22/23 hours a day.

Hannah 

Yeah. I do remember that time because you... you sounded a lot more hopeful around that time.

Katya 

Yeah. Yeah,

Hannah 

I know. Yeah. And  in my head that was the story. It was like, okay, Katya is gonna recover. -laughs- And leave you on your own!!! -laughs- But but then then that didn't happen. That kind of period of hope that you had over the summer just didn't then materialize into recovery.

Katya 

Yeah, I guess I got sick in August last month. And it was so awful. I can't explain it. I had almost let myself forget what long COVID is like at it's worst. I took a month off work. I spent pretty much all of September in bed. And just something I want to mention is just the loneliness of it. Because when you don't have the energy to talk or to sit up, it's so hard to not spend a lot of time by yourself.

Hannah 

Yeah, definitely. I think like, oh, I should reach out to someone. But yeah, that requires energy I don't have and being on the phone listening to someone talk at me and trying to formulate my responses in a conversation is really hard to do. And yeah, exhausting in its own right. So yeah, that stops me.

Katya 

So yeah, Hannah, for you now. What's long COVID like?

Hannah 

Umm, for me long COVID is just a very small, slow, quiet life.

Katya 

-laughs- I haven't been to your house, but I can just see you in your garden.

Hannah 

Yeah!! Just like sitting on the bench in my garden staring into space. -laughs- It's a sad... -laughs- No, I mean, one of the great things is that I am still able to work full time, but I've changed job. And I try to see friends maybe like once every two to three weeks. I try to do something. But it can only really be one thing a weekend. Yeah. But I mean, outside of that, I mean, I really don't do much else.  I read, I listen to audiobooks, I rest and lie down a lot. I don't really do any exercise, hardly any activity. The only activity I do is occasionally if I'm feeling up to it, I'll do a bit of gardening but otherwise,  I save my energy to allow me to do the short walks that I need to do around the house or to get from my car to the office. I save my energy for those essential things I need to do.

Katya 

I was gonna say to the exercise thing... because I have a friend who messaged me the other day because he is starting to get long, COVID symptoms, but he's still exercising. And his question to me was, should I still exercise? And I kind of said, I've no idea. Yeah, I have no idea. But it is that thing of ... your energy is less than it was. And you have to choose what you do with it carefully. I don't exercise because I need energy to talk to my family and to be present at work. And if I were to, like, go on a bike ride, and then take three days off, I mean, I couldn't imagine going on a bike ride, but... living a normal life. It's smaller. It's my house and my garden and work and friends, but not all in one day. And, yeah, exercise is something I gave up so I could have that normal, small life. But I worry about my health. What does it mean to have not done any exercise in a year?

Hannah 

Yeah. What does that mean for my long term health? And no, I do battle with those thoughts. But  I don't know what the alternative is. Because it's like, yeah, if I, if I exercise, then there's all these other things that then have to be sacrificed.

Katya 

Yeah, I guess we should probably just say like, run 100 miles away from anyone who suggests graded exercise therapy, because... it's bullshit...

Hannah 

yeah!

Katya 

So I I have all of that Hannah. Like, yeah, the fatigue, the shrinking of the world. That's something I wrestle with, because I still, I still say to myself, Oh, but I should be able to do this. It's been a year and I still will like, go on a walk somewhere that doesn't have a pitstop in 20.

Hannah 

Yeah, yeah. No,  I do the same where I just massively overestimate my abilities, even now. And then I'm sort of shocked, or really disappointed whenI realized that oh, yeah, I can't do this, and I really overestimated what I could do today. And I think because we still don't have a clear understanding of why some people have long COVID and some people don't it adds to that sense of, oh my gosh, I've just had really shit luck! Yeah. But then there's that thing of like, oh, was I doing something wrong in my life to mean that I put myself at more risk of getting long COVID? I've no, you know, you just kind of go around in your head with weird thoughts like that.

Katya 

Yeah, speaking of weird thoughts, something that I I kind of now have, which is gonna sound weird., is I dread happy events in this social calendar. Two of my best friends are getting marrie, and each time they told me my first thought was like, I hope I'm well enough to go. I don't know, I just, I've recently missed a hen do and a 30th birthday party, and you just Yeah, someone tells me something great is happening. And my first thought is, yeah, shit. I hope I can go.

Hannah 

Yeah, yeah. And it's that knowledge that like, even if you make it there, you're not going to be able to engage with it, perhaps to the level that you would have been in the past. I imagine, you know, it could be linked to that... and the thought of like, oh, this is another great event that I'm going to miss out on in some way or, you know, there's a sense of loss there isn't, perhaps?

Katya 

Yeah, it's a sense of loss, but it's constant. It's not a single loss. And then you adapt to it and keep going. Because of the ups and downs. It's like the losses keep coming back. Because I get a little bit better. And so I start reaching for something else. And then I have a bad day. And it's like, well, there goes that!  I was asked if I could give a speech at my friend's wedding. And oh, my gosh, I'm still going to do it. It's in April and, like a speech is okay. I mean, yeah... But my, one of my thoughts was, I'm going to do a rap! I had this like rush of energy. And I found a beat and I watched a bunch of YouTube videos on how to do a rap. And I like wrote a rap, and it's just, and I had this image of we'd dim the lights and it would be really funny and just ridiculous! And then it's like... you can't go for a walk! Why do you think you could do a rap in front of like 100 people?!!!! -laughs-

Hannah 

-laughs- Yeah, I mean, I've never rapped before but I assume there is like a lot of breath control! And you'd be super puffed out.

Katya 

it was something like... oh my god, obviously like this will not be in the podcast! . but it was like.. "chilling in my jammies nerding out on my phone, hashtag kim k, hashtag vacay, hashtag real-deal couple goals, Jay-z Beyonce, Kanye Kim K, Bennifer, Shaggy Scooby Doo? Enough? I need a power couple to relate to!"  -Hannah's silent laughter-Like you don't know what to say but I really did...

Hannah 

-laughing- I'm impressed!

Katya 

And now I'm thinking can I write it out in advance? And can someone like wheel me on to the stage?

Hannah 

Like how how could you make that work? Would you do it sitting down?

Katya 

The speech or the rap?  Okay, yeah. -both laugh- Do you find your tolerance for confrontation has changed?

Hannah 

-pauses for a sec- I mean, I am the least confrontational person you will ever meet! -laughs-

Katya 

-laughs- You know, those screaming arguments that you have on a regular basis? All those times you put your hand up and say, I don't agree with this. -both laugh-

Hannah 

Yeah. I mean, I've always run away from confrontation. But I think I'm, I mean, I do have trouble asserting myself. Particularly when it comes to my COVID symptoms and my needs, I have real trouble being like, oh, no, I need this. I need that. I always feel really like I've got to super over justify it to people or I literally have to like, ask really nicely, I'd be super apologetic.

Katya 

I still apologize for my long COVID. You know, I also realise, I can't say no, like, I was supposed to help out at this work social. And I basically couldn't do it because I couldn't get to the building, let alone carry like 20 cans of beer in! And I called my my teammate, who is just the kindest man ever. And I said, I'm so sorry. But I'm really sick. And there's, there is no way I can do the part like I can't help you with the social. And I'd written down on my to do list like BACK OUT OF SOCIAL and I was looking at it and I was like, I can't do it. But if you need any help, please let me know. And I'll I'll help and I'm just like, why are you saying this? There's nothing you can do! - both laugh -

Hannah 

I offer help that I like, I really hope they don't follow up on that. Yeah!... But what were you saying about confrontation? that you feel like you're less confrontational?

Katya 

No, it's not that I'm less confrontational, I still have to ...  I noticed it more at work. I now have a physical response to stress, which I didn't before. So I used to be able to have a difficult conversation, but not physically shake or feel close to tears. Whereas now when the stress goes up, I just lose all of my energy. I have to sit down. I have to slow down, which is yeah, it's not great... Considering I work in quite a high stress environment. Well, more more an environment that's high stress, but where you need to... Yeah, high stress and you need to stay calm. It's like it's hard to stay calm if you're like physically vibrating!

Hannah 

yeah. Yeah. That's so interesting.

Katya 

How has your life changed since long COVID? Is there anything that changed for the better? I think that's a good one to cover.

Hannah 

Yeah, yeah. Yeah. Did you want to go first? Or do you want me to?

Katya 

You go first, and then I can just listen and breathe. -LOUD EXAGGERATED BREATH- -laugher- Okay. That's gonna be really hard to edit out because it was straight after... - laughing-

Hannah 

-laughing- I know!... Yeah. Okay, so how has my life changed since getting long COVID. And has anything changed for the better? Well, my lifestyle has changed dramatically

Katya 

-bursts out laughing- Sorry. I just felt like we could focus on the second part of that question more. I think - I'm tired so i'm getting a bit hysterical! but it's the understatement of the last two and a half years that your lifestyle has changed dramatically -laughs-. Yeah, we should say like, Hannah once did a five minute plank! God, you were so strong at uni.  Hannah lifted weights with the boys. It was ridiculous.

Hannah  

Oh, god. Yeah. -sighs-

Katya 

 What's changed for the better Hannah?

Hannah 

I think I mean, the thing is, it's gonna just sound super, like saccharine and cliche but you know, it does.. it does make you view your life differently. It has I think it's brought me even closer to my partner Chris, who really gets it and has done so much to look after me. And it's helped us kind of get our sort of priorities about life in order a little bit. You know, I'm not kind of five year planning anymore. I just feel like life is so uncertain. But I do think it makes me a little bit more in the here and now and kind of, I do feel really, like appreciative and grateful for  the small things that I do have. I mean, they're not small things like, you know, I've got like a comfortable home and a partner. And I've got, you know, I can still hold down a job, and I've got a family and all those things kind of feel.... I think I appreciate them more now than I did before. Yeah. Because yeah, my life isn't kind of so crowded with other competing

Katya 

Trim the fat?

Hannah 

Yeah I've trimmed that fat! -laughs-

Katya 

I just remember this girl at my old school who was one of the funniest people I've ever met! Once a year, she did like a friend cull. Like, oh, I remember something like I refused to let her like, copy my notes or something. And she's looked at me. And she was like, "it's culling season Katya". I just love the officialness of it. And like the warning she gave everybody! -laughs-

Hannah 

Oh my god. -laughs-

Katya 

Okay, but this is something we spoke about ages ago. I don't know if you remember this. We spoke about long COVID. And how you only had time for the really important people or it made you made you think about who really who are your real friends? Who are the ones who come over and just wantch you sob on the sofa? Yeah, but i thought  you also need those acquaintances, those little people who you just have, you just hope that you stand next to them on the coffee line, or, you know, a colleague who doesn't sit next to you, but they're on the other side of the room, and you've always really liked them.

Hannah 

Yeah, yeah, those little interactions, they, you know, they they add to your life as well.

Katya 

Sorry, I've taken you away from ... was there anything? Anything else, Hannah?

Hannah 

No, that wasn't anything else. I was gonna ask you what you feel is changed for the better?

Katya 

Um, so for me, so funny, I wrote things you can do sitting down was the key theme.  I learned to draw, I learnt sign language at the beginning of 2022. Because I was just spending so much time alone in my room. And speaking was really tiring, I got up to level one BSL and I absolutely love that and just felt. I think I feel a sense of kinship with people who have some kind of disability. I've never really had an experience of serious illness or an illness that stopped me from doing stuff. And I think it just made me realize, oh, our world is very much made for people who are able-bodied. Like when you have 1000 steps to spend over the course of the day, food shopping is hard.

Hannah 

Yeah, definitely. Yeah. It makes you really hyper aware of how many stairs there are everywhere. Definitely. It's weird that you say that because I was looking at the hidden disability website the other day, because I was looking up, you know, over the pandemic, I saw a lot of people wearing these green lanyards with yellow sunflowers on and I never really knew what they were so I just looked it up the other day. And yeah, it's a symbol of hidden disability. And I just kind of went down a rabbit hole on the on that website, and I found the long COVID pages. And I was like, Oh, wow, there's a whole community of people that have hidden disabilities and Yeah, there are things that they can do about it or and ways that they can signify that they have a hidden disability. And yeah, maybe I should start thinking of myself as being one of those people.

Katya 

Yeah, that's funny. Interesting. That makes me think of an experience I have fairly regularly actually working / commuting in London of there not being a seat on the train. And I look like I can stand for half an hour. But there are days when I can't and I have got on a train and just been like, like, what am I going to do? Because can I you know, say to someone, can I please have your seat? I'm feeling really ill.

Hannah 

Yeah. And I think Well, if I do take an empty seat. I then worry that yeah, I'll be judged for taking that seat and not giving it up for someone else that looks like they might need it

Katya 

 Yeah. I've thought about getting a badge just like 'please offered me a seat'. It makes you realize how much stigma there still is. Because if you were saying that to me, I'd be like yeah, Hannah wear a badge, but it's, it's hard. Yeah, I guess it's also part of the the sense of unreality that I have with this illness. There's almost a part of me that doesn't think I'm ill...  I am ill!!! I'm not!!! - both laugh-

Hannah 

-laughing - -sarcastic- Actually, maybe I'm not! maybe i'm fine after all!. Yeah.

Katya 

-laughing- -joking- Did I mention that I only sleep for an hour a night? -both laugh- It's not true. I, whenever I I tell a doctor about long COVID The question is always Are you having trouble sleeping? And I'm just like, No, my sleep is amazing. Yeah, yeah. I sleep really well.

Hannah 

Yeah, I have heard that that's a symptom of long COVID that some people do have trouble sleeping. And I've, I feel super grateful that I don't have that. Because that must make it so so much worse. To feel that exhausted and not be able to sleep. But yeah, I mean, I would say I sleep, like a normal amount of hours now. Whereas actually, that is one thing that's changed about my long COVID is I don't have to sleep so much now. Whereas in the early days, I was sleeping 10 hours at night and then at every opportunity, I was napping forseveral hours.

Katya 

Yeah you and your naps!!!

Hannah 

Yeah, I would nap for like three, four hours like so heavily as well! Like no dreams. I'd Wake up really disorientated. Like what happened? Yeah, and it would be dark outside. Yeah. I mean, Chris said he'll always remember when I had a week's holiday (his is when I was still trying to work at the hospital) And my parents were coming to visit for a week. pretty much they turned up, andI just slept the whole week. And Chris was there just trying to entertain my parents for like, multiple days in a row!!! And I was just like, Right, I'm off! -both laugh-

Katya 

It sounds almost creepy, though. It sounds like he just just propped you up and went about their day. -both laugh- Yeah, I also just put briefly my relationship with my brother, Luke. Luke has insomnia. And I never understood insomnia until I got long COVID. And I guess  there's something amazing about saying to someone, I really, really want to do this, but I'm so tired and them being like, yeah, I completely get that. And Luke would come over to see me once a week, twice a week. And we would just eat pizza and watch TV and not not speak. And just that. Yeah, our relationship, just that sense of understanding.  And I guess also actually Hannah us! Because that's something I'm so grateful for. It's I tried to say this to you ages ago. It's hard to come out, right. But as horrible as long COVID is. Like, I'm really glad you have it.- both laugh- It's not quite it, but it's like, I'm glad. I don't know how to say it. It's like, I'm so grateful that i'm not alone! -both laugh-. And I feel like like you were my best friend at uni. And when we left uni, I really missed that. Yeah, you obviously got sick and I didn't get it and in your first year of illness we weren't in close contact. But then when I got sick, I can't tell you it was the best thing in the world. I think it actually saved me to message you and be like, There's something really wrong with me. I genuinely have no idea what to do. I feel sadder than I've ever felt in my life. And you were just like, yeah, I completely get this and your advice was just, it was just everything. Yeah, it just meant so much to me. Yeah!

Hannah 

well, you know, yeah -laughs- You've been it's been really... it's been super it's been really nice having you 'join the Club!' -laughs-. Like, yeah, it's weird. It's hard to say it without it making without it sounding really bad! But yeah, it is really nice to have a friend who's going through the same thing.

Katya 

That's it! Hannah

Hannah 

you know, if anyone's gonna have like, COVID with me, I'm glad it's you -both laugh-

Katya 

And on that happy note, we'd like to thank you so much for listening. I really hope you enjoyed our conversation and that you join us next time when we'll be discussing self care.

Hannah 

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to boundedenergy@gmail.com Or find us on social media @ bounded energy.

Katya 

A huge thank you to Harry Gould, the talented musician who lowered himself to produce our jingle and Ellie Atkinson, the illustrator who made our rather joyous logo!