After years of living with long Covid, we still catch ourselves wondering: am I doing enough to get better? Am I doing too much? Has someone on the internet found the one supplement I haven’t tried?
In this episode of Bounded Energy, we give four familiar long Covid claims a bullshit rating. Is it psychosomatic? Can you cure it with positive thinking, enough rest, or the right diet and supplements? Are the 3Ps keeping us sick? We get into why some of these ideas are so tempting, what we’ve found helpful ourselves, and how easy it is to blame yourself when you’re still ill.
We also catch up on where we are now, from Katya going back to work after maternity leave to Hannah getting back to cooking and taking short walks on good days. Plus, a brief case for counting a night out as a recovery milestone.
Contains swearing, as advertised.
Katya: 00:01
I have started drinking socially again, which for me is a massive bonus. It's like one of the great joys in life. Yeah. Is like getting a bit drunk. And I feel like that is the type of exercise. You know, that's like a strain on your body that I now feel well enough to accept.
Hannah: 00:21
That's what we look for. It's what it's what recovery is all about.
Katya: 00:24
Exactly. Recreational drugs. So just a couple of things before we start. Firstly, you'll notice that I changed the jingle. I just couldn't listen to myself singing anymore. I had a little help from our AI overlords. I'm sure that one day very soon they'll come to collect my firstborn child in repayment. But um I think the piano version's nice. So yeah, I did actually play around with a very aggressive dubstep star version, but I think I'll keep that for when Hannah's a bit further along in her recovery. Secondly, there's some swearing in this episode, which I haven't bleeped out, um, because the title is Long COVID bullshit, and we do return to that theme a lot. But also because there's a moment at the start where Hannah says the F word like five times and bleeping it out felt like I was trying to minimize her distress. Um, and it just didn't didn't sit right with me. So yeah, adults only please. Or very cool kids, if God forbid any children find this relevant. And finally, we'd love to hear from you. So if you ever want to say hi or you have thoughts or feedback, please write to us at boundedenergy at gmail.com. I always respond, though I am slow.
Katya: 02:02
No further ado. Here's our conversation. Hello? Hey. How are how are you, Hannah?
Katya: 02:15
How are you doing today?
Hannah: 02:17
I'm okay. I I've had a bit of a rough start. I've had just some unexpected things this week that have been quite draining. Um, and so I've been feeling a bit more depleted over the past few days and feeling like I really need a day of rest. I can feel it coming on. Um, and so yeah, this morning I woke up and I was hoping I'd feel refreshed after a big sleep, but I just woke up feeling really achy and sluggish. So it's taken me a while to get going, but I've been trying to do things. I don't know. I had a cry, went into the garden, I've had a hot bath, listened to classical music, and I'm feeling more like myself now. I was just, I don't know. I had like a moment this morning where I was like, just fuck this, fuck, fuck, fuck this. Like, I'm so fucking sick of feeling this shit. I had an hour or so of feeling really sorry for myself and wallowing, but I've moved through it. I'm on the other side now, and I'm like, okay, I'm okay. I don't need to like go into despair about this. And yeah.
Katya: 03:26
So maybe a little chat with your with your old friend will tear you up.
Hannah: 03:31
Yes, that's what I'm hoping. How about you? Do you want to just like get people up to date on where you're at in your personal long COVID situation?
Katya: 03:40
So I would say that I am doing pretty well. I have returned to work after a year of maternity leave, which is very strange. And I'm working four days a week. My long COVID, I would say, is almost invisible to me a lot of the time. So I'm now on a good day able to walk for maybe two hours across the whole day, or sometimes even longer. I see friends every weekend, but I definitely still have long COVID. I'm in I'm in I'm in quite a good place, I would say. I'm very, very functional.
Hannah: 04:16
Yeah, yeah. I mean, that's just so fantastic. Compared to when we first started the podcast, you've come on in leaps and bounds.
Katya: 04:23
Yeah. What about you, Hannah? How are you doing?
Hannah: 04:27
I am like, I have like a more severe case than Katia. I'm not as like well as she is. Most listeners will know I got COVID back in 2020 and I've had long COVID since then. So it was about two years ago that I finally stopped working after I had such a terrible crash that I just was basically housebound for like multiple months. I quit work and I've been slowly building myself up. Progress is happening, but it's just so freaking slow. But you know, I have gone from like barely functioning to being able to move about the house with ease. I've returned to cooking and like small household chores. I see friends fairly regularly and I can manage short, slow walks on good days and gentle yoga, gentle Pilates on my good days. And at times I get really frustrated thinking that my progress isn't fast enough and I worry like I'm not doing the right things. But yeah, we'll we'll talk more about that kind of stuff in this episode, actually. But yeah, I've still got a long way to go before I can be back to work fully. I I want to get to that point, like you, where you kind of just feel like, okay, maybe I still have it, it's mild, but most of the time it's kind of invisible to me unless I really push beyond my limits in a noticeable way.
Katya: 05:45
Yeah. Should we start then? So, yeah. So, right, let's get into it. Yeah, so I have used this podcast to talk to you, Hannah, about all of the aspects of long COVID that I had been ruminating on. My progress has stagnated to the extent that I often doubt whether I am actually sick, whether I actually have long COVID, whether long COVID is even real. And then I sometimes swing the complete opposite way of kind of questioning: is this my fault? Am I just lazy? Have I just become really unfit? Is my diet not good enough? Is this all in my head? And I think that I had been experiencing those thoughts a lot since we last spoke. And so I I came to Hannah with these ideas. And it the podcast seemed the natural place to lay out the main ones and actually see uh see where we landed on them.
Hannah: 06:47
Yeah, yeah. And I think as the years have gone by, more research has come out about long COVID and more ideas for its potential causes and more potential treatments have appeared with varying levels of evidence to support them. And there's just an ever-growing amount of noise online about what's causing long COVID and what we should be doing to recover from it. So, what we're here to talk about is um we want to take some of the claims and beliefs that we regularly come across about long COVID, and we want to decide how much bullshit we think they contain. So, what we personally feel, you know, is the truth, or what we think is just kind of conjecture, or what we think is just absolute BS. Um, and we're gonna label things either all bullshit, mostly bullshit, partly bullshit, or not bullshit at all. We think it's true. So, yeah, you happy to start? First statement? You ready?
Katya: 07:43
Okay, so the first claim is long COVID is psychosomatic. Shall I can I start speaking about this, Hannah? Yeah, you go for it. So I think this one crept into my brain after I read a book that was recommended by a friend called The Age of Diagnosis by Susan O'Sullivan. She is a doctor and a neuroscientist, and she actually wrote a book before the age of diagnosis called It's All in Your Head, which I had read years and years earlier.
Katya: 08:14
Me too.
Katya: 08:15
Yeah, did you read it as well? Yeah, all about functional neurological disorder.
Hannah: 08:19
Yeah.
Katya: 08:19
Yes, yes. And so um, I'll begin by just defining psychosomatic. Um, I've had a couple of conversations with doctors um because I have a very educated friendship group, many of whom are doctors. So psychosomatic comes from psyche, meaning the mind, and soma, meaning the body. So basically the mind acting on the body or the mind causing the body to then express certain symptoms. And medics seem to distinguish psychosomatic illness as being where something has gone wrong functionally in the brain, but not structurally. And by that they mean when they look into the brain, either by scans or what's that thing where they hook you up with little electrodes all over your brain? They I don't know, whatever that is. Don't ask me. Someone will tell me. Um, they can't, they they just can't see anything actually going wrong. But the symptoms of psychosomatic illness are very real. So it's it's the idea that a process in the mind is causing an effect on the body. Um and maybe if I explain the argument for this from The Age of Diagnosis by Susan O'Sullivan, we can then talk about like whether or not we think it's bullshit. So in her book, um Dr. Susan explains that the diagnosis for long COVID is extremely broad, and she observes that symptoms shift around the body in spite of negative test results. Um and she talks about the idea that there are psychological factors that predict illness. So long COVID patients might have been aware of long COVID as an illness before they got COVID, become very anxious, expected severe illness as a result of contracting the disease, and they then become hyper attemptive to symptoms. Apparently, it's called the nocebo effect when expecting harm or illness causes real symptoms, or maybe makes existing symptoms worse. And she does acknowledge in the book that social circumstances like the loneliness and the isolation of the pandemic would have exacerbated this. Um, but she has three pathways to long COVID. So, firstly, she thinks it's either a result of sustained organ damage from COVID, chronic fatigue syndrome is the second presentation. And then she says that the third presentation for long COVID is it's psychosomatic. And she actually makes the claim that most sufferers will fall into this category. She says some things in the book to support this argument that I that don't seem to be very well evidenced. So, for example, she mentions that she sees mild forms of chronic illness overlapping, but never the severe forms. So she observes that people might have clusters of mild forms of autism, ADHD, hypermobile Ellis Danlos syndrome, and POTS, but that these don't cluster in severe forms. But when I read some criticism of the book and did a bit of research online, there seems to be a lack of solid evidence for that claim. It just seems to be like that's her contention, as opposed to like an established rule.
Hannah: 11:50
And just because like they cluster in mild forms together, why does that mean that it's psychosomatic? It may just mean that there's just a different, there's just a different underlying mechanism going on, as opposed to someone who say has severe chronic fatigue or severe POTS, or you know what I mean? I I don't quite get why then why then she's saying therefore it's psychosomatic.
Katya: 12:15
Yeah. Yeah, that's a good point. Do you want to talk about your gut reaction to this idea that long COVID is psychosomatic, Hannah?
Hannah: 12:24
Yeah, I mean, I oh I've honestly I've gone round and round and round in circles, like wondering about this, reading about it, trying to sort it all out in my own head, because it's so confusing. Um and I think the thing that has confused me the most is really trying to pin down what psychosomatic really means. Because I feel like depending on who you speak to, the definition kind of changes. So from what I've been able to sort of pass out, you have kind of one form of psychosomatic, which is sort of psychogenic. You have psychological processes like anxiety, illness-related fears and beliefs that are the primary cause behind behind your symptoms. And essentially, it is all in your head. You are imagining things like kind of like a your classic sort of hypochondriac. And then there's another form of psychosomatic illness where the symptoms are real, but they have psychological causes. So psychological or emotional processes are actually producing genuine physiological changes in your body. They're changing the way that your autonomic nervous system functions or the way your immune system functions and creating real symptoms. But the root cause of it all is psychological. Um, and those, I think those are two slightly different things. And I, yeah, I am inherently skeptical about that. Um, I do think that our thoughts and beliefs, our feelings can affect how much we suffer from the illness that we have. It can kind of modulate the severity of our symptoms. I think that's the case for any illness that someone is living with. Um but I think an idea I've been more interested in, which I think is adjacent to this psychosomatic idea, is the concept that there may be a nervous system or sensory processing explanation behind long COVID. The idea that the original illness, the COVID virus, has altered the way that our nervous system is functioning, um, altering mechanisms like sensory processing, how our body perceives threat. And in like layman's terms, it kind of makes you stuck in fight and flight. And being in a dysfunctional nervous system can increase feelings of anxiety and paranoia. And so, therefore, sometimes when people have long COVID and they feel increased anxiety, increased paranoia, it's actually a symptom of their disre of their nervous system not functioning the way it used to rather than the cause. And I feel more inclined to believe that because of partly because of my own experience, I don't relate to this narrative of, oh, you were afraid that you were gonna get long COVID and therefore you got it. It's like when I got COVID at the very start of the pandemic, before anyone really knew that it could last for so long. And, you know, I was experiencing real issues with no idea what was happening. Um, you know, I hadn't even, we didn't even have tests at that point. So I didn't even know at that point if I'd had COVID or not. But like, yeah, I wasn't sitting there in fear, thinking, oh God, I really hope I don't get long COVID, because, you know, I I just didn't have that, those kind of fears. I was just in my head thinking, well, you know, I'm young, I'm fit, and I'm healthy, this is just like a flu. And I spent ages treating it like, oh, this is just God, this is just like some post-viral fatigue sticking around, but I'm sure I'll push through it, I'm sure I'll be fine. And I was doing all sorts of things I would usually do to try and just shake off a bug in the way that you do, you know, like you gradually go back to exercising again and you know, sleep a bit more, like make sure you feed yourself well, and before you know it, you're back to your normal self. And that's what I was expecting, and that's what I was trying to do, and it just wasn't happening. Yeah. Um, so I don't, yeah, and also I wasn't isolated either. Like I was working in the NHS surrounded by my colleagues who are my friends at the same time. I just don't relate to that narrative at all. Um so that's personally why I don't really buy into that. But I think that long COVID is usually multifactorial. And I think that the idea that the the virus itself changed the way our nervous system is functioning. I think that is possibly a factor that's coming into play with a lot of people. And for some people, the nervous system stuff might be the dominant cause, and for other people, it really might not be. Um, I think that's, I personally think that's why some people respond really well to nervous system regulation protocols and other people don't. Um, I think research is showing that there are different like phenotypes or subtypes of long COVID that are emerging based on different clusters of symptoms, meaning that there's potentially different underlying mechanisms going on for lots of people. So um and I think this is probably a bit of a controversial point. Um, but I'm gonna say it. I think because of long COVID, similar to MECFS, being so poorly understood, with such a wide range of symptoms that are hard to measure, like fatigue and often like it can't be diagnosed with just a blood test or a scan. I think there are probably hypochondriacs or people with a psychogenic illness who take on the mantle of long COVID or MECFS when actually they don't actually have that condition in all of its complexities. So then their experience of the illness and then their experience of what helps them to get better will be different to someone who like genuinely has long COVID and I think that muddies the waters. I don't know.
Katya: 18:29
I think I've Yeah, I mean that's gonna be true for any illness, though, right? And I wish those people would get off the bus. We need some kind of group.
Hannah: 18:39
I've I've heard so like I came to that conclusion on my own, and then I'm gonna go.
Katya: 18:43
I should make a Facebook group. You know how people get power mad when they own Facebook groups. I shouldn't make a Facebook group, and people have to write a letter explaining like how ill they really are and if they deserve to be there. Because you're yeah, you're you're you're definitely not wrong.
Hannah: 18:56
Yeah, I I I think some people will really push back on that. Like I've read, you know, some people saying, no, no, no, that's not true. Like, you know, I really did have it, and I really did get better with I don't know, this supplement or this brain retraining program or whatever. Yeah. But it's so hard. Like it's so hard to know where no one can really prove with like a ha, this blood test or this scan proves I have it. So it's really hard to know, isn't it? And yeah.
Katya: 19:26
And also like there's an element of all illness will have a psychosomatic aspect because being ill is very, very stressful. And you know, even I I know the benchmark for long COVID, I think, is three months before someone will say, Yes, you have post-COVID syndrome or long COVID. But like three months of postviral fatigue, like that that can have a profound effect on your life. Like it's being ill in our society is so isolating that three months of terrible fatigue, um, that's gonna trigger depression, that's gonna have an uh that's gonna show up in the body in other ways, and you can, you know, you you can run with these things. For me, psychosomatic does not resonate for the one of the reasons you said, which is like completely the opposite of being very nervous and anticipating illness. I ignored every symptom of my long COVID. Like I gave myself a week with COVID to be in bed, and then I went straight back to work, I went straight back to the gym. I literally like myelong COVID forced me to my bed. And whenever I had any energy, for months I was like desperately trying to go back to my Zumba and be in the office every day. I must have spent like thousands of pounds on getting cabs to the office so I could be present and be normal and healthy. So yeah, to me, like long COVID is psychosomatic to me is mostly bullshit. I feel like, and maybe this is me being a cynic, I feel like doctors say it is psychosomatic because they're not comfortable saying we just don't know yet. To me, you know, the the answer is we just don't know. Like something's going wrong with your brain, but we don't know what. And I feel like even talking about the mind and the psyche feels like a way of medics getting around this. Because if a doctor were to say to you, we believe this is caused by your brain, well then you'd be like, Oh, what part of the brain, doctor? And then they might be like, huh, we should really look into that. Whereas if they say this is caused by your mind, you're not then gonna be like, What part of my mind, you know?
Hannah: 21:53
Yeah, it's such a it feels like a it's such a slippery, like elusive concept, isn't it? That doesn't have like a location.
Katya: 22:03
Yeah. Why would just say we don't know? You know? It feels like it's it's psychosomatic, get out of my office kind of thing. Yeah.
Hannah: 22:12
I think that a lot of people have experienced it in that way. Um for sure.
Katya: 22:19
Um, Hannah, long COVID is psychosomatic, all mostly, partly, or not bullshit at all.
Hannah: 22:25
I think it's mostly bullshit. Uh I I I don't say fully because I think that in major most illnesses, like there's like people's thoughts, emotions, beliefs will mediate the way that they experience the illness. I do like accept that completely, but I think in the majority of cases there's a lot more going on than that. I think it's predominantly like biological mechanisms going on. But you know, working with your mind or doing like nervous system-related stuff can improve symptoms for a lot of people. But yeah, I don't think it's psychosomatic.
Katya: 23:02
No, I I think like one of the interesting things is I feel like many people with long COVID say that the most helpful thing was therapy. But I don't think that the fact that many people cite therapy as something that helped them means that the cause was their mind. I just think that in the complete absence of a cure, talking therapy helps people to live with chronic illness and it it also helps them to make space for their own recovery. Yeah, yeah. Um okay, should we move on to the next one? Yes. So the next idea was you can use positive thinking and self-talk to cure your long COVID. Do you want to go first?
Hannah: 23:41
Yeah, bullshit. I mean, like I said, you know, just now, I think there's I think that positive thinking and like yeah, positive self-talk or whatever you want to call it can reduce suffering and it can motivate actions that might improve your condition. But in most cases, I think it's bullshit to say that it will cure long COVID. Um, I also think we need to be wary of false positivity, where we like bulldoze or suppress our real feelings and sensations by forcing posity. And I think that might work in the short term, but then it can really backfire um in like the mid to long term when you have an inevitable crash. Because yeah, I mean, that's what happened to me a lot in the early days just complete denial of what I was going through, and just constant like, I'll be fine, it will all be okay, oh, I'll manage. Um, yeah. And I don't know, uh it it brings to mind some of the worst manifestations of brain retraining programs for chronic illness. Like I know there's a lot of variety in these programs, and some are better than others. Um, and some people do report significant improvements with them, but uh for the majority of people, um I I think that it's not going to cure them because long COVID, I think, is a multifactorial complex illness with lots of things going on. So yeah.
Katya: 25:07
Yeah. What about you? So this this thought came to me because of the book that we that we were sent that we read. Yeah. Um yeah, so Hannah and I read a book. I won't say who it was by just because we'll probably trash it because I thought it was nonsense. It was a book that was basically all about retraining the brain. And the the the author's argument was that long COVID and chronic fatigue syndrome involved the body being stuck in this like active survival response. This is this is can I just say this is literally a hypothesis. I think one of the things that annoys me about the wellness sphere is there's a lot of there's a lot of hypotheses, which is basically just an idea that then somebody piggybacks on and writes a book on. The idea that your body is stuck in this like ancient survival mode, like almost like a hibernation thing, is just an idea. Um, and so the cure that the author presents is that you need to constantly tell yourself you're safe. Practice gratitude and self-compassion, and that will signal somehow to your body that the protection is no longer needed. So you need to kind of like when you see these symptoms, so your debilitating fatigue, the chronic pain. Do you remember we we spoke about all of the weird neurological things that we had earlier in our long COVID? Like you had electric shocks, I sometimes couldn't walk in a straight line. You're supposed to kind of view these things as your body trying to protect you. And um basically just like notice every small improvement and celebrate it, and every challenging symptom, you're supposed to thank your body for trying to protect you, but tell your body that this isn't needed anymore because you're actually fine. To me, like you can tell that I feel like my voice is dripping in, you know, um, I don't know what the word is, but I do not I s I really dislike this. To me, it feels like total bullshit. Like I get it is known that um psychological support, like um CVT, although to be honest, I I hated that, but we know that that can help people with chronic fatigue and long COVID. Like those kinds of interventions can improve your well-being and reduce how distressed you are, but it's not a curative. Your illness is not caused by these kind of abnormal beliefs, you know. I think it for me, I view this as basically in the same vein as the first statement that long COVID is psychosomatic. Yeah. An unhealthy mind, and you just need to make that shift. So yeah, for me, that one's all bullshit.
Hannah: 27:54
Yeah, I think those two claims go hand in hand. You're right. And yeah, I think the word you were looking for is maybe like contempt. Like you're contempt, yeah.
Katya: 28:01
I'm just dripping with contempt. It is, and I think that actually what led us to start this conversation for me was a sense of outrage because the book that we read has hundreds of reviews on Amazon. This woman's making money from it, and I just it does make me um frustrated, maybe borderline angry. Um, yeah. I had an interesting conversation. I think I told you this, Hannah, with my cousin who is a doctor, and she was talking about, and I'm just gonna paraphrase, but basically, my cousin was explaining that people do cure themselves with things like positive thinking or like specific behavioral changes. But if it is a cure, it's only a cure for them because the behavior will act on their, I guess, brains. I can't remember any of the words she she was using, but in such a specific way that, for example, for this one person saying these positive phrases might trigger the release of certain chemicals in their body, such as dopamine, which might dampen their pain signals. And if someone believes they're suffering from chronic pain and they find a behavior that then relieves this, they kind of are cured. But she was saying that the mistake they will make is to isolate the product and say the product is the cure without acknowledging specifically the product worked on me in my circumstances with my biology and neurochemistry, which I think is so fascinating because you then have this. I'm just thinking again of this author who wrote this book about using language to cure her long COVID. Like she seems like a lovely, sensible woman. And I do believe that this cured her. I just think she's wrong to package it as a book and sell it to other people as the cure for long COVID.
Hannah: 30:02
Yeah. Number two. Number three, you can rest to cure your long COVID. I think this is mostly bullshit. I think that rest is really important. I think it's an essential part, but I don't think rest on its own will cure long COVID. I think it's key often, it's often the majority of what we should be doing, especially in like the early stages when we're in that, like when we're have our most severe symptoms, we should be doing deep rest. But I think we need to do more to start building our abilities back up. I I mean, I use rest now, I think quite strategically to relax my nervous system and replenish my energy stores when I'm feeling a crash coming on or if I'm I'm I'm in a crash. I I've I've had so much resistance to rest in like the early days of my illness. And yeah, I think one of the challenges as well is like when you do rest, resting in the deepest way possible and not just like, I'm resting, but you're just like on the sofa scrolling on your phone, kind of thing.
Katya: 31:07
Yeah, when you said that you had a deep resistance to rest, like I think that's twofold because it's firstly you don't want to rest. You don't want to, you know, after an hour of being awake or whatever, go and lie down for a little bit. But but then you resist rest twice because the nervous system disruption that we experience as part of long COVID means that it is much harder to rest. Like I I haven't had it in a while, but one of my main symptoms of long COVID was an inability to rest. I would lie down and my heart would be going so fast, and I would feel like I was on the edge of a cliff. I would like wake up in the morning having and like sleep would be very difficult. Like I just didn't enter deep sleep for a long time until I was quite a lot better. So rest is so confusing. Um, it is har it's hard to rest in both ways when you have this illness, you know, psychologically and physically.
Hannah: 32:07
Are you are you kind of in agreement with me that like it's mostly bullshit that it will cure you, but like it's still a really important thing to do?
Katya: 32:16
Yes. And I also think though that I'm very skeptical of all of the wellness stuff out there, all of the yoga courses, and I get that um post-COVID autonomic disruption is pretty established, right? But and I've I've written this out because I want to say it correctly. So the fact that COVID disrupted our like nervous system regulation, that doesn't automatically imply that teaching the body to feel safe will reverse it. For example, you can have, and this is from my research, you can have like sympathetic activation as compensation for another problem. So, for example, if you have some kind of problem maybe with like blood returning to your heart, your body will make your heart beat faster to maintain circulation. Like that's a separate issue to nervous system dysregulation. Do you know what I'm doing what I'm trying to say there? I find I find, and I experience it myself now. Um whenever I get a cold, I know I'm going to get a cold because maybe two days before I start sneezing, I feel so anxious and I feel like I'm about to fall off a cliff, and then I get a cold. But I understand now that I don't get the cold because I was feeling anxious. The the anxiety is a symptom of my body reacting to infection.
Hannah: 33:53
Yeah, your nervous system is reacting to other things going wrong in your body. It's going like, we need to get into gear.
Katya: 34:00
Yeah. And resting and meditating doesn't stop the cold happening. It maybe makes the cold much more tolerable. Yeah. But I still get sick. So I maybe actually am even. I feel very I feel maybe more skeptical. I think I'm just gonna say you can use rest to cure your long COVID. To me, I actually view as mostly bullshit. Yes, calming the nervous system may help your symptoms and support recovery. But that doesn't mean that the body will cure itself once it feels safe. But then it's so confusing, isn't it? Because we know we know that that stress makes things worse and rest improves our symptoms. But I can see a world where I become a nun and retreat to the mountain and effectively live a symptom-free life. But that to me is not curing my long COVID. That is so dramatically altering my reality that I don't have to face it anymore. You know, I'm definitely not going to get fatigued at a Pilates class if I'm living in a cave.
Hannah: 35:03
Yeah, yeah. It's like removing all pressures on your body, removing all potential triggers like temperature or noise or yeah, all of that. Exactly.
Katya: 35:14
Just wrap yourself in cotton wool, high benefit.
Hannah: 35:17
Yeah, and yeah, you're right. Like that may mean that you're symptom-free, but it doesn't mean that you're cured of your illness. Because being it might, for me, being fully cured of long COVID means that I return to having a body that has the resources to manage everything that life throws at you.
Katya: 35:33
Yeah.
Hannah: 35:33
Um I think that actually brings us on quite nicely to our fourth statement, which is um oh, one that I personally get on my high horse about because I hate this one, which is that the three P's, so what is it, pacing, planning, prioritizing, um are keeping us sick. So doing these act doing these things is what is actually keeping us stuck. Um and I think we should quickly define.
Katya: 36:03
Can I quickly define these, Hannah? Yes, please do that. Um so these are tools that we both used in the early stage of our long COVID. They're like, if you read any of those, like um the Long COVID handbook, um, they they all define these as like a key tool. So pacing is breaking activities into manageable chunks and putting rest in between your daily activities. Planning means that you look at your day and you spread out demanding activities and you build in rest. And then prioritizing is deciding what matters most for you. What do you really want to do each day or each week? And then learning to just delegate the rest or to postpone the rest. So it's basically a way of organizing your life that lets you stay within your current energy limits and avoid this like boom and bust cycle. Hannah. Yeah. So yeah.
Hannah: 36:59
You is it keeping us sick? So I think this is mostly BS. Um, I think for the vast majority of people with long COVID, the three Ps are being used in a really helpful way. I think where this idea comes from was kind of demonstrated in that book that we were reading, where the author was very critical of pacing and was giving examples of people using pacing to unnecessarily limit themselves when they no longer needed to, and they were developing an association between certain activities and then terrible symptoms. So they had lots of fear around um, like bouncing the boundaries. The idea was that three the three P's are just this unnecessary restriction fueling our fear and keeping us trapped in this illness. And just both Katia and I, we spoke about this, didn't we? Like when we were reading the book, like we're not relating to this at all. Um we just didn't recognize ourselves in the case studies that the author was giving. Um but I can see how some people might end up in that place where they use the three Ps in a really rigid way that is restrictive. But I think for many people with long COVID, myself included, the three Ps have helped to help me to stabilize, help me to stop living in this constant push-crash cycle. And it was only from that place of stability that I could actually start understanding what is my actual baseline energy level. And then it's helped me to like really gently, gently build up from that. Just slowly, slowly, slowly bouncing the boundaries a little bit forward, a little bit back, a little bit forward. And I've been gradually able to increase my activity levels over time. It's been really slow, but I mean, the three Ps for me are a vital way of living my best possible life with this with this illness. That's why I say that it's it's mostly BS, because I think most people are using the three Ps appropriately. But I think maybe there are some people out there who've now used it as a rod for their own backs when actually they don't need to be so restrictive with the.
Katya: 39:10
I can't answer the phone to my best friend at 11:30 because that's my nap time, you know? Yeah. Yeah. You could be so inflexible with it. Yeah, I agree. It gave me a sense of structure and boundaries, right? At a time when I really needed boundaries because I think the three P's helped me to accept that I was ill. So I found them a very useful starting tool that I have somehow like absorbed into my brain. Um the three P's are keeping us sick, then I think that's total bullshit. Yeah. Okay, the last statement we had was you can cure your long COVID with the right diet or with supplements. For this one, I must say that I think that my objection to this is more philosophical rather than from the back of self-experimentation because I have done very little. I, you know, have followed a good diet, I have tried a probiotic, and I have also had phases during my long COVID of having a terrible diet. And I haven't really noticed a change in my long COVID for many of these things, but I'm very wary of the sample of one, right? I know that like that doesn't really mean anything. Um I think it's interesting. I think there is something very human about wanting a cure all, right? You have like manner of the gods, or like the Greeks had ambrosia, like a magical nectar that would like cure you of any illness.
Hannah: 40:42
Yeah. Um it's such an attractive idea, isn't it? Yeah.
Katya: 40:46
Yeah. And I think the idea, I think, behind supplementation is that something is lacking, therefore you're sick. If you can identify what it is, you will be better. And we know that it works in some instances, right? So we know that if you have scurvy, you are lacking vitamin C. If you take vitamin C supplements, your scurvy will be cured. But with something like long COVID, which is so poorly understood, you know, is it mitochondrial dysfunction, is it viral persistence, is it inflammation? The like the idea that you could take a supplement to cure it is just for me, like we we just don't have enough knowledge, like which supplement um do you just take all of them? I I like I'm not aware of um evidence for supplementation as a cure for long COVID.
Katya: 41:38
Yeah.
Katya: 41:39
I see the supplement industry as quite like um what's the word when you're taking advantage of somebody?
Hannah: 41:45
Um like exploitative. Yes, I see it as exploitative. Like I suppose you could even say like predatory in some cases. Like, yeah, you know, like when we had that like email wanting us to advertise like an algae supplement for long COVID or something, you can kind of see it's a space where like grifters can can earn a lot of money.
Katya: 42:06
Yes. Um I see on the when I go into work on the tube, there's a big advert for um iron supplements. And it's like, are you tired? question mark. Here's the iron supplement. And I'm like, of course these people are tired, they're all in the city at 7 a.m. Like, of course they you know what I mean? Like maybe I I think it's also I don't like the idea of putting responsibility on the consumer. Like, you're unwell, maybe you need to optimize your diet, maybe you're lacking this. Have you tried all of these things?
Hannah: 42:39
Yeah, yeah. It is, it is really complicated. I think I do think that there for me, I sort of see it as a balance. I think there's an extent to which we can use our diets to try to improve our health or manage our risk for things, but I think there's only so much of an effect that will have. There's so much about our health that's beyond our control. Um, I think it can like contribute to like a healthy body, but I don't think that the right diet or the right supplement is going to be the thing that cures your long COVID. I think a lot of this stuff comes from the fact that there are conditions out there where people are genuinely lacking in a certain vitamin or mineral, and then you give them that vitamin or mineral, and then they get better like B12 deficiency or vitamin D deficiency, that kind of stuff.
Katya: 43:30
Oh, I remember being so hopeful that I would have a B12 deficiency. Yeah. Just please don't let this be a B12 deficiency.
Hannah: 43:37
Yeah, yeah. Uh, same, same. Yeah. Bitterly disappointed to find out that my vitamin D levels are within range.
Katya: 43:46
Yes, I know, I know. I think one doctor almost looked sorry for me and was like, Well, I suppose they are in the lower end of normal.
Hannah: 43:56
Oh dear. Um, I think in relation to long COVID itself, I Think there's some interesting hypotheses. There's some emerging research out there around certain supplements which might support stuff like mitochondrial function or inflammation or the immune system. And I have seen online there are individuals out there who report really improving in response to a particular supplement. But that's very different from having evidence that a particular supplement will cure long COVID and will be a silver bullet for everyone. I just, we're just not there yet. And like I said, I know I keep going back to this all the time, but I do think that long COVID is multifactorial. And I do think that there are perhaps different underlying mechanisms going on between individuals. So a supplement might be the thing that really triggers an improvement in symptoms for one person, but it might not work for another. For me, where diet has helped me is maintaining a stable blood sugar. I think has really helped me with reducing how dramatic my symptoms are over the day. And I am taking various supplements because I work with a nutritionist at the Optimum Health Clinic. And I do believe that they've contributed to my gradual improvement. Possibly because they are just perhaps helping my body to function better in some way, which means that I've got more reserves to like manage my long COVID. You know, it might not actually be targeting the long COVID itself. I don't really know, you know? So yeah. I would say partly bullshit.
Katya: 45:38
You're an interesting case, Hannah, because um you have undeniably made enormous progress with the support of the Optimum Health Clinic, but their interventions are in multiple areas. It's not like they just gave you supplements. No.
Hannah: 45:52
Or they just overhauled your diet. Like it's Yeah, it's been uniquely tailored to me, and they do it in stages where they I think my nutritionist said early on, like you can't just throw supplements at someone and expect them to work because it's all about, you know, is your body able to actually absorb and use that supplement effectively at this point in time? And yeah, so it's I can't package that and sell that to someone as like a no one size fits all situation. Okay, should we come to a conclusion?
Katya: 46:26
Yeah. You can cure your lung COVID with the right diet or supplement. For me, I think that it is um mostly bullshit.
Hannah: 46:35
Yeah, and I put partly bullshit because I think I do think it can really help. Um, but yeah, I don't I don't think it's gonna necessarily cure you, particularly not one size fits all situation. But yeah, I know we've got some things to say as we wrap up. Um our kind of final topic really was so after all this, like what does give us hope? What do we think actually works? How do we move forward?
Katya: 47:00
Hannah, can I intercept? Yeah. Just because before we got there, I was looking on the WHO, they have a Mythbusters page, and I realized that these statements that we've been looking at, long COVID is psychosomatic, you can cure long COVID with rest, you can cure long COVID with diet, etc. Um, these are all really common myths, and it was very strange to me to read the long COVID myths on the WHO mythbuster page and realize that they literally mapped the thoughts that had been going around in my head. So, and so I did a bit of research, right, as to how can somebody who has had long COVID for like five years and made a podcast about it then spend months thinking, is long COVID actually real? Am I just doing the wrong things? Am I just super unhealthy? And my research led me to this idea of normalization around illness. I'm reading a great book called Being Ill around our book club, Hannah. Like, how dare you read other books outside of our book club? I know. Um, and so the book is amazing, but they talk about this normalization, which is when you've had an illness for a really long time, you just desperately want to be normal. And so you do everything to hide the illness from yourself. So for me, I like don't do any exercise, but it's I also don't even really listen to other people when they talk about exercise. It's almost like a blank. Like, like I've even told people that I'm like cured and don't have long COVID anymore because my life is so changed so that it's invisible to me. So then when I am blocked by my symptoms, they feel unreal to me. And I think that is why I came to you with these thoughts of like, maybe I'm just really unhealthy, maybe my diet is wrong, maybe long COVID is bullshit and I'm just lazy or deluded. And it was very interesting to read these myths. Yeah. Do you recommend people like if anyone else is dealing with those thoughts? Like the WHO page is very good at being like, this is a real condition, people are still developing long COVID.
Hannah: 49:16
I'm really pleased to hear that from such an official source, there's this acknowledgement of all the myths going round and an attempt to put those in context and establish the facts a bit more. Um yeah, I love that.
Katya: 49:28
I'll put I'll put the link in the description. So, anyway, Hannah, you were trying to conclude and then I um hijacked.
Hannah: 49:36
No, I was I I think those are really interesting points, and they're good points to conclude with as well. Um, so what gives us hope? Um, I have heard and read of people who've recovered from long COVID, and you're an example of someone who's really improved a lot, um, um, even after having it for several years. So that sort of thing is what gives me hope that one day that will happen to me too. And I think working with the Optimum Health Clinic has helped me to maintain that belief as well without just falling into despair because working with practitioners that you put your trust in, it takes some of the responsibility away from you as the individual for all the researching, all the decision making. It gives me a structure and some accountability so I can just kind of keep persevering with my personal self-care routine, gradually introducing more activity. Um, but yeah, feeling like I can kind of offload some of that burden to someone else. Because trying to do it just all totally on your own is can be very lonely and stressful as well when you're second-guessing yourself all the time about am I doing the right thing? Um and I think I think to some extent it is helpful to learn from other long COVID sufferers. But for me, a way that I keep going is actually to just block all of that out to a certain extent and to be like engage with it to some extent, and then to be like, okay, I'm now stepping back. Because I think regularly immersing yourself in that online world has caused me to be really confused, really overwhelmed, leads me to negatively compare myself to others. And I just I've found being part of say online forums or big group discussions where everyone's sharing their opinions about the illness and what does or doesn't work for them. I just I often leave those situations feeling less empowered and more despairing. Um, I don't know. I mean, I know there are some people who really need that community and that feeds their soul, but for me, it often just makes me more stressed. And I prefer to kind of have my blinkers on and be like, I've got a few trusted practitioners that I where I follow their advice, but then I keep my blinkers on and I just focus on my own lane, my own journey.
Katya: 51:48
It's so interesting that you said that because I often think about where does our podcast sit? And I think we straddle those worlds because I feel the same of like I need to feel normal because I want to participate in our quite ableist society. So I do I do want to go out into the world and see things, but then I also know that I mustn't deny this illness to myself because that is just confusing and leads to like this, you know, spiral of myths that that I that have been going around in my head for the last like nine months. And I I do think that this podcast lets me go between that, and that for me is like the happiest place is to remember that your illness is real and you do have to take care of yourself, and there are many ways that you can, and there are loads of wonderful resources out there, but also remember that there is a world outside of the sick room, and there are ways of being in it. Do you know what I'm I mean? There's something about going between those two worlds that feels very important.
Hannah: 52:59
I think for me, there are certain types of communities that I've found really helpful for me in terms of giving me motivation to keep going. I recently joined the online community of a charity called Breathworks, founded by Vidya Mala Birch, which focuses on mindfulness for living with chronic illness. And there are no claims that it will cure the illness. It's just about helping people to live better with whatever they have. And there's a weekly free live meditation and other free events they do, and then there's paid courses. But I found that type of community where you're just sitting in a live meditation with others who you know are probably also experiencing similar stuff to you, but you're just being with your illnesses together. It's a place where I feel deep validation, and that for me is really sustaining. Whereas if you're in a community where there's just constant kind of um, try this, try that, this worked, this didn't, then you're you're entering a space where you feel like a pressure to fix yourself. Whereas, yeah, I think being in a community where you can just experience validation and just compassion is really nice.
Katya: 54:12
I think the community part of it actually for me is what resonated the most. There's something so individualistic about the wellness industry, like you by yourself need to focus on your body and your journey and make yourself like the healthiest person. And then that idea actually of joining in a community where you can participate and you are yourself, your illness is visible. You're I imagine that you're really seen in that kind of community. And I do think that that maybe that's what sick people need is they need to, they need to be seen for who they really are, which is yes, you're Hannah and you're charming and intelligent and ever evolving, but you are all you also have a chronic illness. And like there aren't that many spaces where you can be all of those things, and it sounds like you found one. And that that sounds extremely helpful, curative almost. Almost.
Hannah: 55:09
Almost. Yeah, yeah. So no, I have found that really helpful. So I just I just wanted because I know like earlier on I was like kind of bashing online forums and communities, but I just wanted to make a distinction that I feel like I feel like it it depends, right? It depends what sort of spaces you're in.
Katya: 55:26
Also, for Jamala Birch is a very tenured meditation teacher, right? Yeah, she's not gonna be like kicking people out of the Facebook group.
Hannah: 55:38
Yeah, and she's not gonna be selling me an algae supplement or anything like that.
Katya: 55:42
You can't use. We don't use crash burn cycle here, please.
Hannah: 55:48
Yeah, yeah. Um thank you for this lovely conversation, Katia. I hope that our listeners get something out of it as well. Um I hope it just triggers, I don't know, people to maybe think a bit more deeply about some of these myths or um or just feel comforted maybe that they're not the only one in this space who's just kind of like confused and has to has had to kind of work out their own positions on all of these beliefs and uh claims about long COVID.
Katya: 56:21
Yeah, I think this conversation has been really, really helpful for me as well. I think it's funny, when we began, I think one of the senses we had was like there were all these vague ideas, how will we ever come to some kind of conclusion? But for me, this conversation is helping me to realize the extent to which I hide the illness from myself. And like these pernicious myths, these vicious myths that I found very easy to denounce and ignore at the very beginning when my illness was like smacking me in the head every day, start to creep in as you recover.
Hannah: 57:00
That's really interesting.
Katya: 57:01
It it's very refreshing for me to realize like these things are real.
Hannah: 57:06
Yeah.
Katya: 57:07
So yeah, thank you, Hannah.
Hannah: 57:09
I'm I'm glad to be of service. And yeah, I know thank thank you as well. Like all the research you've done behind the scenes, it is really helpful to me as well. It helps me keep my feet on the ground too, because I, you know, as someone who's not as well as you, there are times where I'm feeling a little bit weak. I can be like susceptible to the idea of like, well, maybe I should try this, this new fad. And it's just being able to step back and get a little bit of perspective. Talk to someone in the real world who's done some more thinking about it and be like, okay, yeah, all right, it's fine. I'm doing I'm doing you know everything that I I need to be doing at this point in time and I'm seeing progress. Yeah.
Katya: 57:49
You look after yourself in a very loving and maternal way, Hannah. You should be very proud. Thank you, thank you. Yeah. Um, if anybody has any thoughts, um, please email us at boundedenergy at gmail.com. It's lovely to hear from our listeners. Unless you're selling something shit.
Hannah: 58:07
Yeah. Please. No algae supplements. We're not interested.
Katya: 58:12
Yeah.
Hannah: 58:13
All right, Hannah.
Katya: 58:15
See you soon. Lots of love.
Katya: 58:16
Bye, lots of love. Bye, Hannah.
