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.
