Long Covid & My Body

In which Katya describes waking up from the matrix to realize that we are living in a brutally ableist society, Hannah sings and laughs like some kind of music box, and both agree that perfectionism has no place in the Long Covid landscape.
Oh, and there's also a surprise. Who doesn't like surprises???

Trigger warning: This episode contains themes of suicide and discussions around body image. If you feel this may be unhelpful for you – please skip this episode. 

References: 
The Body Is Not an Apology -  Sonya Renee Taylor
Exercised - Daniel Lieberman
Watching the English - Kate Fox
Suzy Bolt - Rest Repair Recovery Programme - https://360mindbodysoul.co.uk/
Sarah The Long Haul Yogi - https://www.youtube.com/@LongHaulYogi

We want to hear about your experiences! What do you do with your bounded energy?
Email: boundedenergy@gmail.com
Twitter/Instagram: boundedenergy
Transcripts available on our website: www.boundedenergy.co.uk

Theme Song: Harry Gould
Artwork: Ellie Atkinson

Transcript

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. Anyway, do listen through to the end. Because there's a surprise. I actually didn't tell Hannah about this one. Hannah listens to the podcast before it's out and gives me her seal of approval. Though, to be truthful, she does sometimes send me panic texts last minute, and we have to do some five to midnight adjustments. I'm sure she has saved us countless embarrassment with these. But I've made an executive decision to surprise Hannah with this because I think it's one that she'll like, because if there's one thing I know about Hannah, is that she's not afraid to laugh at herself. 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.

Hannah

Yeah

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