03 - Chiara Berardelli - Singer Songwriter, former GP & Covid Longhauler

Episode 03 of the Long Covid Podcast is a chat with Chiara Berardelli; former GP, now Singer Songwriter. We talk about how being ill for such a long time impacts on our mental health, frustration with certain medical professionals & society as well as the difficulty of going from being healthy and active to often housebound and isolated.

At the end of the podcast we hear a song that Chiara has written about Long Covid; "Tyrannosaurus" is her pet name of LC because the headaches were like a monster in her head. Please do check out www.chiaraberardelli.com for more of her work.
Photo credit - https://www.facebook.com/ronnie.wark


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Transcript

Jackie Baxter  
Hello and welcome to the long COVID podcast. The long COVID podcast is currently entirely self funded, so if you've enjoyed what you've heard today and are able to please do go to buy me a coffee.com. Forward slash long COVID pod. You can also follow me on Facebook at long COVID podcast, or on Instagram at long COVID pod. My guest today, Kiara beradelli, is someone I've known for years and under better circumstances, played music with, so it's wonderful to welcome her to the podcast. Thank you so much, Cara for coming onto my podcast and

Chiara Berardelli  
my pleasure.

Jackie Baxter  
It's it's lovely to see you. You too, haven't seen you for

Chiara Berardelli  
ages, ages

Jackie Baxter  
and ages as it's been probably years. So I thought maybe we could just start off by you introducing yourself a little bit, if you're sort of comfortable with saying a little bit about what you do or what you did before COVID hit.

Chiara Berardelli  
So I'm, what am I? That's always a difficult question to answer. I am. I'm a musician, and I'm a songwriter, and I used to have a different job. I used to be a GP, and I just say that because I left that job nearly four years ago now, so I'm still in the process of, kind of building a career in music, having done something else for a long time. So that's why I always struggled, slightly struggled to answer that question, because I basically do a bit of this and a bit of that. And on one hand, that's been, you know, since sort of getting ill, that's been quite an advantage to not have, basically not have a fixed job. Because I realized that for an awful lot of people, the stress of it has been not been able to work and not really having the sort of full understanding of what a sort of, kind of long, protracted thing is about. So I'm kind of grateful that, you know, realize that that's a huge part of the stress, and I don't really have that, but I also find that part of what I found difficult about it is just allowing myself to be ill. I think, you know, yeah,

Jackie Baxter  
I think I sort of am obviously familiar with with, sort of, what, what you do, and the sort of a lot of the aspect of that is that you end up having very busy weeks, and then you have weeks where you don't have so much, and it's a little bit sort of unplanned sub types. It's not always set hours, which, as you say, is a benefit and a curse. Yeah,

Speaker 1  
I think what I found difficult is that at times, I've thought I just had a job that I went to. I wouldn't, you know, because a huge part of it for me has been, you know, when you're ill, or kind of, when you're just past the little acute phase of being ill, is not having any motivation, and when you're trying to do creative things, having no motivation, you're just this void. I've just felt like this void a lot of the time, and I've thought, Oh, if I just had a job that I just went to, I'd just get on with it. But then, you know, like, is that actually, you invited me to the Facebook group, and I read that some of the, you know, a large part of what people talk about is the stress of maybe going back to work and then it's too much and not being able to work part time, or their boss not understanding. And I mean, obviously that just makes you more ill, doesn't it, you know, just

Jackie Baxter  
adds to the stress, doesn't it? Yeah. And I think what I found, which I never really realized before, because I've always had boundless energy, is that how much sort of mental stress is takes away your energy as well. And, you know, you get stressed about something, and, you know, it's it just, it's all tied in, isn't Yeah, maybe we could sort of talk a little bit just about, you know, when you got ill and sort of what happened, and did you get any support? Because if you were anything like me, I didn't,

Speaker 1  
I mean, it was a bit different. I know you've told me that, you know, when you had it, you were really, like ill, like, really short of breath and almost going into hospital. And it wasn't like that for me. And in fact, it took me a long time. And also, if same as you, if you like me, and you had it at the beginning and there was no testing, then you never, you know, I've only assumed or calculated that this is what I've had on the basis of reading and, you know, seeing what other people have got. But I got it. So the very first week of lockdown, and it was a, you know, at first I just thought I had a not very nice virus, but it was different to anything I've had before, mainly because of the headache. That was the thing that really stood out for me. And you know, when you've had viruses before, you kind of know how your body reacts to to things. And this just felt really different. You know, I had nausea, I had these bad headaches, and I didn't have the classic things. I didn't have loss of taste, or, you know, a bad cough or anything. So I didn't think. I just thought it was a virus, basically a non just, you know, non important virus. And then a month later, I had exactly the same thing. It maybe lasted a day. Less, you know, maybe six days rather than seven days. But it was the same thing. It was all the same symptoms. I was in bed for a few days, exhausted, the headache, and then I got it again another month later. So that was, you know, March, April, May, and I was thinking, what? What's going on here, you know? But, I mean, I'm, I don't know. I think, having been a doctor, I can sometimes be a bit slow about seeing things in myself, you know. And I always think, oh, there's nothing wrong with me. I'm a bit like that. So again, I wasn't really pinning it onto anything. And obviously at that point, it was all talk, wasn't it about loss of smell, loss of taste. And, you know, these are the symptoms. And they

Jackie Baxter  
were, there were the three symptoms. And if you have the three symptoms, you didn't even, I mean, I was very similar to you, you know, I didn't get any of those symptoms. It was until I started getting the shortness of breath that I thought, oh yeah, this, you know. So I guess I probably realized a lot earlier than you did, yeah. But I think as well, at this point, long COVID didn't really exist. No, you know that they were saying you'll recover within a week, and then they were saying, Oh, well, you might take two weeks. It might take up to a month, but there wasn't really anything else was and also, for

Speaker 1  
the people that were in hospital, you know, the people that were ventilated, there was obviously a very, you know, then there's, then there's a recovery from that. But if you're not in that situation, you don't expect to be ill for a while. And, I mean, I guess nobody knew anything about anything, really did they at that point. I guess that's how it was. So that that sort of went on. And then June, July, August, it started. I still wasn't thinking. I spoke to the doctor, I spoke to the GP, who, have to say, wasn't very helpful. And I had some blood tests. Because I'm on medication, I get blood tests anyway. So I had some blood tests done, obviously they didn't show up anything. And then for the next two, three months, it started getting better. It would just come on, but it didn't last a week. It would last a day, you know, sometimes two days, and then it would be gone and and it would just come over me, like, all of a sudden, you know, this kind of, you know, weak feeling and slightly achy and, you know, but then the next day it be gone. It was really strange. So I just thought, Oh, well, you know, whatever that is, it's not lasting as long as I did. It's going away. And then on the end of August, I went on a cycling holiday, which I hadn't really done a lot of cycling. Obviously, over the period of time, and normally I would, you know, go on a cycling holiday, and I'd be absolutely fine, because I love cycling. I do lots of cycling. So I went, and we did, you know, three days of more, more miles than I'd done for ages, and probably drank more than I had for ages as well. And basically, after that, I just that was, that was when it kind of all really kicked off. And I don't know whether it was the, you know, I obviously thought I was okay, and maybe I set something off by doing concentrated exercise in a few days. I have no idea. But the next few months, leading up to Christmas, we just were just terrible. Basically, through the whole month of October, I pretty much had a permanent headache. You know, it just I had about three days I didn't have a headache, and I just felt, I was trying to describe to people how I felt. I felt like I was poisoned, you know, I felt like my physical body wasn't my own in the sense that I didn't feel like I normally did. And it wasn't just being a bit tired or a bit this, or a bit that, it was much more than that. So I think in December, I ended up going to see the GP who referred me to a neurologist. Because, I mean, obviously she was trying to rule out

Jackie Baxter  
brain thing, anything else, yeah, but

Speaker 1  
I said to her, funnily enough, the reason I actually went to see her was I wanted to find out, you know, did she think it could be long COVID. Because at that point, I started to

Jackie Baxter  
think, hearing about it by that point, yeah, there must have been sort of support

Speaker 1  
groups stuff by that Yeah. And I wanted to, you know, when it all kind of kicked off in September, I was trying to get the antibody test to see whether, you know. I thought, well, if I just know what it is, then I'll feel that'll be good. So I thought, if I get the antibody test, and I've got the antibodies, I'll know that I had had it, and that's what it is. And then at least that will give me kind of some kind of peace of mind. But then I couldn't get the test anywhere up here, and then obviously you could buy it in the chemist, but then it all sold out. And a friend of mine is a GP said, Well, you know, it's not consistent. Usually, when you get antibodies to the virus, it stayed. They stay in your bloodstream. But with COVID, it seemed to be that they can fall off. And so she was kind of saying, well, if they're not there, you don't know that you didn't have it. And that was all what my doing. And then eventually I got to this point, I thought, well, it doesn't matter if I, if I, it doesn't matter whether I've had it or not, like I still have these symptoms to deal with. So I managed to just kind of accept that, which was really good. But funnily enough, whenever I tried to share with people how I was feeling, everybody then went into the did you get the test? And have you had the you know? Oh yeah. When I asked the GP, Have you, have you? Do you think it could be long COVID? The GP said, no, no, no, because. So it's only people with shortness of breath and chest pain that have long COVID. I said, Oh, okay, you know. And she said, anyway, there's nothing we can do about that. Yeah. Well, the thing is, like, I know that, but that wasn't why I wanted to know if I had it. And that really struck me that, like, long, you know, chronic things, managing a chronic thing is a lot about managing it. Was all about managing it yourself. So it isn't that you necessarily go to the doctor for a fix for it. You go to the doctor for just from some help with managing it. Yeah, you know. And

Jackie Baxter  
sometimes I think having, at least having a label on it, it gives you sort of an idea, doesn't it? Sort of know what you're dealing with,

Speaker 1  
of course, of course. And then you can read about it and you can so that kind of really struck me. Um, so then I spoke to the neurologist, and he decided that I had chronic menopausal migraine. Because clearly, sorry, I'm sounding really negative here, but clearly I'm a woman of a certain age,

Jackie Baxter  
so many people have been told the same. And I

Speaker 1  
know, you know, you know, I anyway, I know I don't have, or I didn't have chronic menopause and migraine. And so I said, or did he think it could be long COVID? Of course, that's not his specialty. And he was saying, Well, you know, it's not. Most people with post viral stuff. It doesn't last as long as this. And I was thinking, well, that's roughly,

Jackie Baxter  
very helpful, because here am I with with all these symptoms, this long post, viral, you

Speaker 1  
know? And I said, What about the fact that it comes on when I exercise, you know, when I try and do anything physical? Oh, no, no, no. Anyway, he wanted to put me on medication. And so what we decided was I was just going to try a migraine tablet if the headaches came on, but it wasn't migraine. The headaches weren't migraine. I tried to tell him this, but anyway, I ended up not taking them. You know, I was still trying to do exercise when I felt Well, partly because I wanted to for my mental health, but all those things, and I realized that I got obviously worse after it. So that's the point at which I stopped doing any exercise. Or I think it was few weeks after that and that, and things started to improve, headache wise, when I stopped doing any exercise. I mean, I can imagine that the medical profession, obviously, there's this new thing happening, and so, you know, they haven't caught up with that. And also, there they were really stressed at that time with with COVID Generally, and all the hundreds of millions of people coming along with symptoms and not being able to see a doctor in the waiting list, and I didn't really find my interactions very helpful, is what I'm trying

Jackie Baxter  
to say, yeah, it's a funny one, isn't it? Because you sort of in any normal type, any person presenting with any of these symptoms would, you know, they'd get sent off to all sorts of different specialists. And you know, I mean, if I said that I had chest pains and shortness of breath, which I did a lot of the time, they'd be sending you off for all sorts of things just straight away. And yet, because we're in the middle of the pandemic, you know, and there are so many different things going on, and so many people in worse situations, people with actually quite worrying symptoms, sort of, you know, and you can sort of understand why, but it doesn't make it less frustrating,

Speaker 1  
no. But I also think in my situation, that I know a lot of people do hang on the test and the blood test, and I know from being a GP that often you can have a chronic thing like this and or a kind of post viral thing, and there's nothing wrong with any of the blood tests, you know. So sometimes it isn't about the test. It's just about really listening to what that person's telling you, about their story, and working out, and that's the thing that's helpful. That would have been helpful to me, to someone to help, to talk about, well, I don't know what virus it was, but it sounds like a post viral thing, but everyone was trying to go, Oh, could it be, you know, headaches? Could it be a brainchild? Could it be this? Could it be that? Well, actually, the bigger picture is, is that it's a post viral thing, which kind of worked out for my self. But that's the thing about the medical profession. I think it's, it's, um, it's kind of geared up to making a diagnosis about something that you can do something about, not about something that you can't do something about.

Jackie Baxter  
And I suppose, you know, you having medical knowledge of your own. I suppose it's a double edged sword, isn't it? In some ways it's helpful, because, you know what you need to worry about? I mean, like when I was having horrible test pits and stuff, you know, it was sort of like, do I need to worry about this? And having zero medical knowledge of my own? I had no idea. So I had a panic attack, and my partner called the paramedics. But I guess, you know, having a bit of knowledge might help you in some ways, but does it make you more frustrated in other ways?

Speaker 1  
I think so. I think, I think I because I'm generally not someone who worries. For example, when I was having a really bad headaches, I think somebody probably said, Oh, maybe you should see the doctor. Maybe it's a not that. And I never worry about things like that, you know. I never think, oh, it could be a brain tumor. It could be this. Could be that. It's more for me. It was more about, you know, what? Why do I not feel normal? How do I feel normal again, you know? And what can I do about that and to manage something? As you say, it is actually helpful to have a label, because then you, if you can, because then. You know what you're dealing with, and you can find out all the information that there is about it. But without that, you're kind of in the dark, can't you?

Jackie Baxter  
Yeah, you don't even know what to look into. Was that, you know, I guess a lot of problems with long COVID is that there's so many different elements of it as well. So yes, there's still so much, but at least having that label, you know that it's not something else, you know, you don't have to worry about whatever else it could be, and you can sort of just focus on trying to find your way through it. I

Speaker 1  
think also, again, having been a doctor, you know, I just thought, well, what's wrong? I mean, we are in a pandemic. Maybe I'm just reacting to that, or maybe I'm my relationship was splitting up because my then partner couldn't come over from New Zealand. So I'm thinking, Am I just, you know, is it to do with that? Am I sad? Am I this? Am I that and, and? Or maybe I'm just being lazy that I can't, you know, all of these things, all of these things that you and every time I would have a bout of it, then when I feel bad, when I would feel better, I would sort of think, well, I wasn't well, you know, but when I was in it, I just thought, What's wrong with me that I'm feeling like this? Put yourself together, you know, that sort of thing, yes,

Jackie Baxter  
isn't it? You know, you people tell you to snap out of it, stay positive. Somebody I know that, who also struggles with, not with long COVID, but with different sort of longer term thing. And she said that the most helpful thing that anyone had ever said to her was that if anyone told you to stay positive, to imagine yourself punching in the face. And I could totally understand that, because I think you know, people mean well, but they have no idea, unless they've actually dealt with that or something like that, they have no idea what you're dealing with. And I think because of that, they don't know what to say, no, so they often end up saying completely the wrong thing.

Speaker 1  
If the hardest thing I found was myself not being critical of accepting I'm not. You know, in fact, what I do? Think I've learned a lot, but like I think everybody, I'm sure you have, sure everybody does with something, but I've learned to be more patient with myself, you know, and just to accept the way that I am okay. This is how I feel. I mean, I'm not saying I do every time, but when I look at the whole, you know, the light, the sort of length of time of me having it from the start till now, I mean, at the beginning, and I was so hard in myself, and actually the for every about I'd have when I was in bed, you know, first couple of days when you feel really bad and you're in bed, in some ways, that wasn't the bad bit, because usually I just sleep through that, and that's okay. When you're asleep, you're asleep. It was the few days between feeling like that and feeling like well enough to do anything where I wasn't. I was just sort of mooching around feeling it's sort of non specifically ill. And I found those days really, really difficult, because I'd just be going, come on, Kiara, get something done, and I couldn't, and I'd get so upset and so frustrated and and, Oh God, I just barely held it was hard.

Jackie Baxter  
Yeah, no, I completely understand. You know, you're lying on the sofa, and you think, Well, I'm not, I'm not that ill. But as soon as you start trying to do something, you just can't, you can't cope with it, you know, you sort of think, when I had a couple of days ago where I was sort of sitting at the sofa, and then I got up to go and put the shopping away, and I found myself like, you know, like having to hold on to the counter to stand up just by putting the shopping away. And you think, this is ridiculous. And then you go and lie down for a bit, and you sort of think like, Okay, I don't feel so bad again. I'll try something else. And then you just, you know, and it's, it's those sort of days where it's, it's invisible. Anybody looking at you would think that you don't look that ill, but they don't see what happens.

Speaker 1  
It's when you realize that energy is you never think about not having energy until you don't have energy. I mean, what is, what is that like you just like you live your life and you've got energy. I mean, some days you're tired, but and then when you have something like this that just seems to literally take away your energy so much that you can't do anything, you think, oh, it's like, it's like an engine, isn't it, with no pet in it? And, you know, it's really, it's like, you can't really, you can't really surmount it. You can't get over it by being positive or pushing yourself. Just is how it is. And in a way, once I kind of started to accept that, it's sort of certainly mentally, things got a lot easier for me. Yeah,

Jackie Baxter  
I think that's what I'm struggling with, is the acceptance bit you get better at managing things and thinking right when I'm feeling tired, I'm going to try and do less, you know? I'm not going to go out and try and walk around town if I'm feeling tired, whereas before, I would sort of make myself do it because I felt like I want to get outside, you know? So, yeah, actually accepting that this is the new you it's especially for somebody who's generally active, like, you know, we're both sort of normally quite active people. And a lot of, a lot of what you do for work as well is quite, sort of physically demanding as well, as you know, and it's, yeah, it's very hard to accept that you can't do that. Definitely, you sort of were talking a bit about what you. Got from your GP and everything. And you had, you know, it sounds like you had a few sort of chats and appointments and you saw your neurologist. Was there any other sort of support that you felt like you needed?

Speaker 1  
Funnily enough, well, you, you introduced me to the Facebook group, and I tend to look at it when I'm feeling bad, because I try and see, oh, is there anything new that someone's doing that? And the first time I looked at it, I read this post that said, you know, ever had a I've had a headache for 282 days. And I just thought, oh, no, this, this isn't, you know, because I'd had a headache, say, at that point for like, 20 days. Have I got another 240 to go. You know, it's quite hard going. And sometimes people, I mean, I get it's good that people have just got somewhere to rant about it and to kind of empathize with each other and and sometimes people do right? I like to know that some people have got better. I think we need to know that. And there was one guy wrote something I found really helpful, because I think what happens? Because I'm sure I've been there myself with other things, you get better, and then you just, you don't, of course, you're not going to look on the Facebook group anymore, you know, yeah, because

Jackie Baxter  
as long as you go back to that depressing of your life,

Speaker 1  
this guy had written something like, oh, well, I just wanted to let people know that, you know. And often it is very active people that get it. I mean, you know. So this guy had been, you know, very active, and he said, I'm back to doing pretty much everything. And he said, You know, I think he had it for a year or something. And he said, Oh, you know, my advice is, listen to your body and try and accept the way you are, and don't, don't try and push that. Try and avoid drama. So, you know, drama, things in your life drama. He said, Only don't watch anything. He said, Just watch cartoons and singing dogs or something like that. You know. It was like, you know, basically, try and make things light hearted around you. And weirdly enough, I'd, I'd started watching, I like, Scandinavia stuff. And just because I wasn't feeling well, and I was kind of like, like, you know, in the evenings, I'd ended up watching loads of really dark stuff, and I think that's absolutely fine when you're feeling okay, but I kind of realized that maybe that's not helping me. So I stopped to stop watching any of that. And I think that was a good thing, you know, and I thought his advice was really good. It wasn't like, Do this, do that, don't eat this thing. Don't eat that thing. It's just kind of take your time and rest if you need to, because that's actually the only thing that you can do, you know, try and sort of simplify your life. And at times, I have found the Facebook group helpful. You know, sometimes I felt a bit guilty because my thing hasn't been as bad as a lot of the peoples that I read, and then I try and tell myself, what so, you know, so it's just my experience. It doesn't have to be a band for a year to find it difficult, you know, it's but, you know, there are, obviously, are a lot of people that are really, really bad at it. Um, I started going for counseling probably about this time last year, just online about other stuff, but that that has been really helpful to me through through this. It's just a private counselor that I've been seeing every week, and what's really helped me about talking to her is in the line of the acceptance of it, because it's very much pushed me to the limit of my patients with myself, and if you're frustrated with yourself over it. It's just, it's just completely unhelpful, just just makes you feel worse, makes you feel stressed, yeah, yeah, upset and physically ill. So I have to say that the timing of that was really and the other thing that I think happens when you have I mean, I think probably everyone's like this as a human, that we the things that we do in our lives that we enjoy, but they also distract us from stuff, you know, stuff going on in our heads. And if you're ill, you're not used to kind of sitting about that much. Then I think there's and the pandemic. I think we've all had more time to think, you know, which can be helpful, but it can also be quite difficult. And so, you know, various things are sort of coming to the surface, which is why I went to speak to her to begin with. But then, in the end, it's been really helpful. Just how do I treat myself through something which is, like you said, it's open ended. You don't, you don't know when you're going to get better. And and lots of things, lots of interesting things came up, like not having a diagnosis and not being able to explain to people what it was. And she was kind of saying, Well, why do you why do you need to do that? And I would sort of say, well, suppose if I can explain to people what it is, then it's real, you know. And she's saying, well, it is real. If you're feeling it, it's real, you know. So that's quite interesting, I think. And you know what? What difference is it going to make if someone or because, then they'll be able to accept that there's something wrong with you and and she's very much helped me with, well, it doesn't really matter what everyone else thinks, actually, you know? It's about you and how you cope with it. And so that's been really helpful. I wouldn't say, Where else have I got support, some of my, you know, just some of my friends and family. But it's a very, it's a very difficult thing to understand. I think I've got a friend who's had chronic fatigue type thing in the past and still gets, you know, Ill occasion, if she does too much, and so she, she totally understands it, and that's been really helpful, because she actually just gets it. Basically,

Jackie Baxter  
it is, it's hard to understand. Yeah, not had it. I mean, I'm very lucky. I've got Malki, but And he, he's sent me every step of the way through it, so he understands it to an extent, and he knows sort of, you know, without really having to ask by looking, but at the same time, he doesn't get it through it in the same way. And, you know, you think even, even somebody who's sin, you know, is still doesn't quite understand. So it's, it's, I think that's why things like support groups, they are helpful to an extent, yeah, like you say, you know, you've got to, you've got to be in the right mood for it. I suppose sometimes

Speaker 1  
it's just a place to say, I feel this and I feel that, but not actually give support, you know, and that's fine, but when there's just a lot of very frustrated people, and I have to say, I, you know, because I live on my own, and it's been like, I think one of the things that I found is that that being that living on my own is not a problem in normal times, because you can go out and see people and people come around, and that's fine, but through the pandemic and having this, it's so isolated. Yeah, there's been a lot of times it's been really, you know, when I went through the real kind of headache phase and you don't really feel like phoning anyone, because you feel you just feel ill, and you don't want to say, I feel ill again, because that just seems, you know, like I'm a broken record, you know, and so you end up not phoning anyone, and no one can come around anyway, and you can't go out and place. I would say I've had the most support is I've got two, two neighbors of mine, who we spent a lot of time together in the kind of early days of lockdown, because we're, you know, we're all in the same block, and we got into the garden and sort of doing stuff in the garden together, because they've seen it from the start as well. They've they just know, really, how it is, you know, yeah,

Jackie Baxter  
I think that's maybe, you know, having seen it all the way through, yeah, that makes people realize how, how it's sort of it's been, I mean, I find, you know, I don't post that much on things like Facebook, certainly not about how I'm feeling, because, you know, I don't want to moan in public, in a way. I'll moan in private, and I'll moan to myself, and I'll kick things and I'll get frustrated and I'll get upset, but publicly, you know, you want to put your best face forward, don't you? So you know people that do know, you know, they sort of forget. So then, you know, you get the Oh, are you still little? You not better yet? And you think, Well, no, of course, I'm not. But because you've not been shouting from the roof,

Speaker 1  
I actually tell you know, I mean, I'm kind of, I've had a couple of things in my life I've had to deal with which are difficult to understand and have gone on and on. So I have got quite used to just talking about things that people don't understand and things that make people feel a bit uncomfortable. And I now I just tell if I haven't seen someone for a while, and they say, how are you? And I say, Oh, well, I've had long COVID. And you know, I just say it, I just talk about it. And people are a bit sort of, oh, oh, you know, but I just think, well, I'd rather just talk about it and get people understanding that there's this thing out there. And it's not easy. It's

Jackie Baxter  
not, is it, especially when you're used to being fit and healthy and energetic and things, it's, it's, it's

Speaker 1  
hard. One thing I definitely found with it, aside of the difficulty of accepting it and kind of learning to cope with it. You know, when I've been ill with the bouts of it, it really affects my mood. And I know you get that with any you know, if you're ill with any virus, it makes you feel a bit down, doesn't it? Well, that's not what I felt like with this. That was much worse than that. And I've had depression in the past, and it was kind of very similar to, you know, on a sort of brief week of whatever I was feeling it. It was very similar to being depressed, you know, I wouldn't say that, then I would get better. I wouldn't say that. I've been like, you know, permanently depressed with it. It's just, but those few days of being like, really ill with it, my my thoughts were just, oh, you know, really, really down and that that's quite, that's quite hard to cope with and hard to explain, you know, you know, them are getting depressed again, and, you know, and all that sort of thing. And then I would start to feel physically better, and my mood would lift, you know,

Jackie Baxter  
yeah, I think if we've maybe had things like depression in the past, when I also, you know, had things like that, and and you sort of, you start to notice the symptoms, don't you, and you, and then, then you start to worry about it, because you think, Oh, I don't want to go back there. You know, it's so, you know, the way I deal with stress is to. Exercise, you know, I will go out for a time or run, or I'll, you know, spend a couple of days in the mountains, and I can't do those sort of things anymore, which makes it more difficult to deal with, doesn't it? But, you know, mental health, I think, and over, you know, long term health stuff, you know, it's, it's a huge thing, isn't it? Yes, you know, you're, you're not yourself, like you say. It's not just, you know, a short virus where you're feeling like rubbish for a week. It's, it's, you know, I mean, I've been ill now for nearly 17 months, which is, you know, it's such a long time. And you know, your similar length of time, yeah, how on earth are you supposed to deal with that? You know when, when you're used to being active? And,

Speaker 1  
yeah, we had some snowy weather that I'm sure you remember in January. Oh, it's gorgeous. So I went for a walk, just, I just, just a little hill. I went for a walk up one of the Kilpatrick hills. And so I thought, right, okay, I'll, you know, I'd been feeling all right for a week or so. I'm gonna go and do this. And then, you know, I was with a group of folk, and we got up to a certain point and they, I said, Right, I'm not gonna go to the top. Got, you know, got down. And then, you know, the day after that, or sometimes two days after that, which is, you know, what it's like. Sometimes it's, you know, crashed again. And then I think a week after, I went on a maybe an hour and a half bike ride, something like that, and it happened again. And that's when I just thought, I have to stop doing anything. I can't, because it's not worth it. And it definitely is affecting it. It's, you know, I was quite slow to sort of put that together, but so I still, that's when I stopped, and that's when things, you know, the headaches, started to improve. And, you know, maybe not the fatigue, but definitely the headaches. And so it was, it was a good thing to stop doing anything, but oh my god, it killed me. It killed me because that walk in the snow on a bright day in January was in the middle of lockdown. Was just amazing. It was amazing, you know? And it does, it does everything. It totally lifts your soul, doesn't it? So? And then, you know, there's a, there's the WhatsApp group of people going walking every weekend after that, and eventually you have to come off that, because it's, it hurts, it does, doesn't it? Yeah,

Jackie Baxter  
I've had to unfollow groups and unfollow on Facebook because, you know, when these people are my friends, and you know that you usually posting pictures every week from the mountains, and, yeah, something about seeing everybody else doing it. And when you can't, you know, it's not just like a weekend where you're busy but you can't go out. You know, it's a year and a half of not being able to do these things, the

Speaker 1  
thing that I got into that I find I couldn't do it all the time, but I got into wild swimming last year, and I got to, I did it right until December. Oh, that's brief in a way, in a way, in a way, but, you know, I could see, because I was thinking, well, it's not really, I don't really swim, swim. I just, I just, you know, dunk, really. And I didn't really think I was doing exercise, but it was making me feel good, you know, but, but as it got colder, it even that temperature, the fact that your body loses temperature and you have to heat yourself up, that uses energy, so I had to stop. I realized even that was making meal, and actually I didn't want to get in the water in December, because I didn't feel like strong enough. So I stopped in about December, and then I really missed that as well, because that's really the only thing I was doing. So I started again in about April, when the weather got warmer, and again, I had to be careful, like, you know, depending on how I was. But the last I've had, you know, little spells of doing it a couple of times a week even. And now the water's warm, so now I can do it in a swimming costume, without a wetsuit, and the water's actually warm. You know, it's wonderful because it's really short. It doesn't involve a lot of energy, but it makes you feel like you've had contact with with nature, and it gives you a little bit of that feeling that you get when you get to the top of the mountain, of that sense of perspective, but without the effort, without the time, and I'm really hope I can keep doing that this year, but it's been really, really good. You know, that's

Jackie Baxter  
great. Yeah, it just, it just makes you feel like you got outside, I guess, yeah, makes your body feel alive? Yes, it's all about trying to find ways to make yourself feel alive. You feel like you are still you, yeah, but without setting off all these symptoms, and I don't know, I found, as time goes on that, you know, I'm not that good at it, but I can work out some of the things that are going to set me off. So, you know, exercise is obviously a big one. So I'll do sort of bits of things if I'm feeling okay, but I'm getting better at not pushing it and and things like stress and avoiding, you know, sort of different things like that. If you find avoiding triggers, you can sort of work it out a bit.

Speaker 1  
Yeah, the thing is that you've got things, I mean, like you say when you. That took me a long time to work out that when you feel well, you also can't do stuff, because then you get ill. And that's really frustrating, because you think, well, actually, I feel alright and I want to so I find that one quite difficult. And also, if you then do set it off, not to give yourself a hard time about that, and the stress side of things, I mean, like I was saying with my work, I'm lucky in a way that, you know, don't have that thing. But my mum isn't very well, and so we take turns in the family to help, you know, help with her, basically. And she lives about 100 miles north of here. So what I find whenever I've been up for a few days with her, I don't know if it's the drive, I don't know if it's being with her and but I normally crash a bit after that, and the last couple of times, it's been not so bad. And I think I hate saying this, but I think I'm getting better. The last few weeks, I started feeling better. I've had a good, yeah, I've had a two, three week spell now of being all right, apart from the odd header. So I think things are getting better, I really do. But I know that that that takes me sort of down a level, and therefore, then you've got to be careful about that. And I mean, I stopped drinking ages ago to see if that helped. I maybe have the occasional beer, but on the whole, I don't drink anymore, which is a big thing. And just, you know, making sure you've got enough sleep. But that's another thing that. So I got back from mums last week, and I thought, I'm all right, you know? And then couple of days after, I got back, like the headache started, and I was, like, knackered and all. That's probably just a delayed reaction of it. And then I can't sleep when I when I'm sort of, I mean, I'm not in it as bad as I was before, but I've had a few nights that I haven't slept properly, and I don't know if it's because when you don't, when you don't have energy, then you can't, you don't really do much, and then you can't sleep, I don't know, because you don't feel

Jackie Baxter  
tired. Yeah, I find exactly the same way. I have sort of weeks where my sleep is awful, and when you don't sleep, it makes everything else so much worse. And when you're fit and healthy, you'd have a bad night's sleep. You feel a bit groggy at work the next day, and then you speak well the night after you're fine. But when you're ill with something like this, you have a night without sleep, and it can set you off, can't it? Yeah, you risk it.

Speaker 1  
It's like you and like you say, it's a kind of mental it's almost like a physical it's an it's a mental tiredness, but not a physical tiredness. I mean, like we were saying before, for, you know, if we came on, we were talking about yoga. And I'm a very sporadic yoga person, so I would go to classes and then not. And I was all, I used to think, Oh, I'd really love to be one of these people that did yoga every day. Well, that's what I do now. Although I as I've started to feel better, I've noticed that I've already stopped doing it. But for several months, I was really, you know, I did, because that's one thing I can do, and it's not vigorous yoga, and it's just sort of, I did loads of the yoga for headaches. I did that every morning, and just a kind of 1520 minute thing. What I found really good about it is you felt you were doing something. And also the nice, the nice voice of the yoga teacher was telling you to be good to yourself. And I found that really it's like the voice of self compassion every day. You know, sometimes

Jackie Baxter  
you just need to hear it, don't you? I mean, it's funny you say that, because, yeah, I had never done yoga in my life. I've always been told that it's a good thing. And I thought, oh, yeah, you know, sure, yeah, great, but I'd rather go for a run. And then I was through a friend of a friend got put in touch with this guy who was doing this long COVID breathing kind of classes and yoga and things. And having never done yoga in my life, I've now done yoga pretty much every day for the last two months, and it is exactly what you say. It makes you feel like you're doing something if you're lying on the floor holding a pose for five minutes, which is not very energetic, but it's something. And the thing that I felt, I think we touched in earlier, is, you know, my brain does not stop. I find it really hard to switch off. And this, this yoga has, it makes you be still, which is what I find that I need,

Speaker 1  
the breathing. The breathing was good. Well, you know, you've had problems with breathing. I haven't really, apart from just when I get to the top of my stairs, I'm a bit short of breath, which I didn't use to me then. But I don't know if that's just because I'm unfit now, or I don't really know the reason for that. Yeah, I haven't had these sort of acute thing or chest pain or anything like that. But I think to breathe into your body, especially when you can't do other stuff, is just really, really, really important, you know. And also, if you spend, you know, the times when you're really ill with it, and you have, like, lots of time that you're in bed, you know, and you're just kind of crunched up in bed, and just to even kind of stretch that out is, and it's like having a bit of contact, positive contact with your body. When, I think a lot of the time, when you feel when you're ill with this, you just, you really hate your body, don't

Jackie Baxter  
you? Yeah, you feel like you've been betrayed, don't you? Feel like, No, exactly, it's totally let me down.

Speaker 1  
Totally let me down. I hate it. Like, why can't you do this? Why can't you do that? So you're sort of going, it's okay, buddy. You know? So I know you're in there and

Jackie Baxter  
we're working on it, we're working on it. Yeah, some of that sort of self love, but yeah, I think, like, yeah. Like, you say we are not very good at that. I

Speaker 1  
know this is a difficult question to answer, but maybe it's because I used to be doctor. I always have to find out the reasons for things. I'm like, why is this that, and why is that that? And, and I kind of think, well, why did I get ill? Why did I get this? You know, my counselor was actually, we talked about what, you know, what was happening the year before you know this, this happened. And my dad died, and, you know, he was really ill for, like, quite a few months, and we looked after him and, and I was, you know, in this relationship that was toing and thrown to New Zealand, all of it. And I just want, I sometimes wonder whether it's not, it's not to doubt that there's a virus and that I've got some kind of post viral thing, but it's just about my susceptibility to something. Also, I had two courses of antibiotics that year for infections which I've never would normally get. So I just wonder whether my system was affected in a certain way that then when you get the virus, you can't fight it, or whatever. I mean, have you? Have you ever thought about that, like, what my

Jackie Baxter  
interesting? You said that because, you know, I like, I like answers. If something happens, I want to know why. And, you know, I'll sort of talk my roundabout in circles, you know, like, does this cause that? What does drugs, milky nuts. But it's interesting, you say about what before? Because, sort of January, February, just before I got ill. Because I got ill week before lockdown, you know, I felt like I was fighting off a cold. You know, when you sort of, you've got a cold, and you're sort of fighting it, fighting, you know, and being in schools at that time of year, you know, germs, you know. So I was sort of doing everything I could, you know, someone said, Take echinacea and, you know, steam, steam bowls and all of that, just to try and fight this off. So, yeah, I wonder if maybe my immune system was a little bit, you know, out of work at that point. You know, it was a little bit off. So then when I did pick up COVID, and who knows where I got it from, you know, when you when you're in schools and on trains and stuff, you know, it was everywhere. We didn't realize did we?

Speaker 1  
I kind of wondered. Obviously, more people have had this virus in a concentrated way than viruses normally post viral symptoms or syndrome, whatever you want to call it has been around forever, but just we. We've probably never recognized it as much as we do now, so

Jackie Baxter  
much numbers, yeah, exact situation of it. But

Speaker 1  
you also, it also has made me wonder how much people are under stress and various things before, you know, and are just kind of muddling through, and then you get this thing, and their bodies have just gone, no, I can't deal with this. And they've had this you just, you know, or whether it's just because COVID has got, has caused that more than other viruses, I don't know, because people lead very, very stressful lives, and they and we just manage that. You know, we think we're all right, and we just manage it. And it

Jackie Baxter  
takes something like this to completely take the floor out from under you, to realize that actually you need to, sort of, you know, change things about your life that you know, should probably be permanent changes even I'd like

Speaker 1  
to think that I will always do I've already proven that that isn't the case, because I've not been doing it enough. I'd like to think that I'll do yoga every morning, you know. But I'd like to think that would be the case, but we don't, you know, I'll do that when I feel the need, rather than as a permanent thing, you know.

Jackie Baxter  
And when, when you're busy, you forget about the things that you should be doing, yeah, treating the things that have to be done, yeah? And that's human nature and the fun things, yeah, yeah, exactly, you know. Oh, well, I'd, you know, I'd rather go out on the hills than, you know, stay in and lay on my yoga mat.

Speaker 1  
Have you found playing music helpful? Yes, and

Jackie Baxter  
no, I've actually just, I learned violent last year. It was, it was a sort of, I need something to do that's not energetic. And, you know, playing an instrument is energetic to a level, but at the same time, you know, you can set this over and play violet, and you can do it in bits, and it seems a little bit less physical than the cello, which is much as well. So I've really enjoyed having that to sort of get stuck into. Feels like I'm achieving something. It drives me up crazy. Yeah, but it's been, it's been quite good fun. And, you know, I've done some sort of music videos and bits and pieces and things of recording and all things that I would maybe have done before but didn't have that much time. So I've definitely done things, and it's been quite nice to feel like I'm achieving something, because there's so much of that, you know, like you were saying about, you know, self worth, feeling like, you know, you're kind of useless. You know, if you can achieve something, even if it takes you three days longer than it would normally have done, it's quite nice to

Speaker 1  
have I did that, and also, and also that you've kind of done something positive out of a difficult situation, isn't it? If you, well, you wouldn't have done that if things had been kind of ticking along as normal. So you can say, Oh, well, although things are rubbish, this is what I did with it. You know, that's a good feeling. Yeah,

Jackie Baxter  
yeah. I think it is. And I, you know, I'm always doing something. I. So at least it was something that I could kind of do in my own way, sort of thing. So I, I'm not really one for sitting watching TV all day. I've never done that. And just, you know, I have the sort of mental capacity of a three year old. I can read for quite a long time if I'm feeling up to it, but watching stuff, I just get so bored, and then I start doing something else. So I'm sort of using double the energy. So it's almost worse. Sometimes I found your energy levels are so different day, day to day, it's hard to know what you can do. Because you know, right? You know, I'm feeling quite good today, right? Well, I'll go and do this, and then the next day, you think, right, well, I did that yesterday, so I can do that again. And you realize the next day, your levels are so low that actually it needs to be a sofa day that's going back to acceptance again. As a tech

Speaker 1  
noted, I was working in a youth club, and I just, I stopped doing it. It was only once a week. It was every Tuesday. But I just it was so unpredictable, how I was, you know, and kept being ill, and I just felt like it was better if, you know, they got someone else, or at least they knew that I wasn't coming and and that was just one day a week that that's why, why? I think that if you've got stuff that you have to be at regularly, it's and you don't know, and you don't want to give it up, but it's unpredictable, and the

Jackie Baxter  
unpredictability it means, you know, it's making any sort of plans. You know, could meet up with a friend tonight, but I don't know how I feel. It's difficult to deal with. And I think what I've certainly noticed that over the last sort of few weeks, maybe a few months, as things have opened up, it's all becoming a bit more obvious that we can't do things and everybody else can. When everyone was in lockdown together, it was I think that's most easier. I

Speaker 1  
think that's really true, because you were just sort of in and kind of nursing yourself in the evenings, and suddenly people were out doing stuff, and the weather was good and this and that. And, yeah, that's really interesting. You say that I'd not really thought about it like that, but for me, I was feeling that, and I thought, Well, maybe it's because I've spent quite a lot of time on my own, and it's just an adjustment to people. But it wasn't just that. It was the fact that suddenly people were going out and doing stuff, from arranging things more like together, and you couldn't fit physically. You couldn't go and do that. And it's like another It's like another hurdle that you sort of have to kind of go, right, okay, I need to accept this, and I need to let that. And now I feel it's more I've got into a sort of groove with that. But it's like every new change of what people can do and you can't, is a thing, isn't it? And actually, a friend of mine organize a couple of holidays, and probably I wouldn't have organized them, because I don't work full time. I don't really think I need a holiday and but I'm really glad that she did. And they were just places like where I could just kind of really chill out. And but even even then, one day we were up north, and one day, a few people going cycling, and that's what we would normally do, and having those people, like, they were just getting ready to go cycling, you know. I mean, I knew that's how it was going to be, you know, you know, taking my guitar, and I was quite happy just to play music, but then I was watching them sort of get ready and be excited and go out, and I just, I just had, like, I had a big cry, you know, and it wasn't because I knew I wasn't able to go and I was fine with that. It was more that I think I was just having a big cry for all the all the times that I couldn't do stuff, you know. And it's

Jackie Baxter  
something about seeing someone else doing something, yeah, can't do and want to Yeah, that, you know, makes you feel all of those things again, yeah,

Speaker 1  
and it's right in your face. And she just sort of gave me a big hug, and then I was fine, you know. And they went off, and I spent the day having a bit of a walk and a bit of a swim and a bit of a guitar play. And I had a lovely day. But right in that moment, all I wanted to do was get on my bike and go for,

Jackie Baxter  
yeah, it's not fair. You just, you just want to go inside, yeah, yeah, you know, and be

Speaker 1  
and just be like feet, having that feeling and and I am a bit, I am a bit of an all or nothing person. So, I mean, I've hardly been on my bike, you know. I'm a bit like, well, if I can't do a 30 mile bike ride, and not that, I mean, I'm not, I don't do lots and lots of miles, but if I can't do what I normally do, I'm not going to do it at all. I'm a bit like that, you know. But also, I think it's that thing about not knowing how much you can do before you make yourself ill, you know?

Jackie Baxter  
So if you set off on a bike ride, you've got to get back. That's the

Speaker 1  
ability of a swim or even, like, this is kind of really sad. But I've got into gardening in the last year. You know, with lockdown in the garden, have you? Have you? Well, it's not just an over 50 thing then, oh no,

Jackie Baxter  
I have it was more of a guilt thing actually. You know, the gardens around us are absolutely beautiful. And there are people that have obviously spent, you know, a lot of years and years and years doing this and and the driveway here, we haven't even weeded it, yeah. And I thought, right, so I've just, you know, bought a few pots, and there I've had to do it in bits. You know, I can't do too much at once, yeah, but if it's finding that something, even if it's not what I'm gonna do, and it makes me smile, if I've been out, and I come back to the house and I see my hanging basket, and I think that's really nice, I

Speaker 1  
know, Oh, absolutely. And I think, like, even with that. Yeah, I sort of started doing more of that and thinking, Oh, well, it's not exercise because I'm not on my bike or I'm not quite physically, yeah. And then I did, yeah. I did. I did something, yeah. I did a day of it at some point, and I was knackered the next day. And I thought, well, it is exercise actually, that I sort of realized that everyone says or gardening is exercise. I used to think, no, it's not Yeah. So that's, again, you can just do a little bit of that, and then you can stop. And it's about finding those kind of things, you know? And actually, do you know what? I think it's quite good practice about what it's probably going to be like when we get old, you know, because you're not going to have the energy that you have when you're really young. I mean, you're just not really, are you? And so I think to have that patience with yourself about what can I do and what can't I do, and not to be frustrated about that, which is really, it's a real learning curve, but it's really important, I think, you know, and not you know, just to be like, All right, with that. And that's, I mean, that sounds really simple, but if you're used to, I mean, I tell loads of people about you and you and Jackie and play the cello with and she usually climbs 15 mountains at the weekend, and they stays in a sleeping bag on the top of them, and now some days she can't get off the sofa. And I tell people that because it makes people understand what it's like. Because people think, Oh, well, this person's like this, and now they're like that, and they go, Oh, that's terrible. That's really, that's, that's what it does. That's what it can do to people. I'm like, yeah, it's not, you know, this isn't someone who wants to lie down or sit on the sofa or

Jackie Baxter  
it's, yeah, I mean, I my symptoms aren't anywhere near as bad as a lot of people's. And, you know, you get that sort of like, oh, well, is it really that bad then? And one of my friends said to me, he said, Just because someone else has it worse than you doesn't mean that it's not rubbish, you know, it doesn't validate how you're feeling. And I thought I was quite useful, because, you know, I do sometimes look at some of the other people who, you know, have much, much worse symptoms, and I sort of feel like I'm almost a bit of a fraud sometimes, and then actually, I look at my own symptoms and I realize actually it's totally awful for me as well.

Speaker 1  
The bottom line is, you can't live your life the way you did. That's the line, exactly. That's a problem. That's a problem that's, you know, and it's something that, well, you and I, and everyone that's got it. It's like a it's like you're dealing with it all the time. You're dealing with it. Yes, it goes away. How am I today? What can I do this? Can't I do that? Can I organize that thing? Can I do that? Oh, now I just feel ill. I need to lie down. You know, whatever it is, it's like, it's this thing, isn't it? It's that didn't used to have that. Of course, it affects your life. And sure, yeah, we're not. We're not sort of lying in bed the whole time, thank goodness. But that doesn't mean that it hasn't kind of had a massive impact on your life. You know

Jackie Baxter  
exactly, you still can't do all the things that you should be able to do, that you need to do and want to do. Yeah, yeah. Exactly. You know, you your life isn't all about literally working and existing. You know, have some quality of life as well, exactly, exactly, you know. And if you can't do that, then you sort of, you know, it's hard. So with, with work for you, I mean, you're self employed, aren't you? Do? You find yourself worrying about being able to take on work and then not being able to do it. And,

Speaker 1  
yeah, I do. I do. I mean, like I was saying about the youth club, I had to stop that. And actually, quite a bit of teaching. You know, maybe people have not been able to come to teaching because they've had different things going on because the pandemic, it's been very Bitsy and, and actually, sometimes I think, Oh, that's not good, and I should be building it up. And, and then I just think, actually, it's quite good. Otherwise I would be constantly having to contact people saying, well, I can't do a lesson this week. And so in some ways, that's not bad. And I, you know, in fact, I'm trying to think now about what I do next, about getting another job or taking something on regularly, and, and I do have to think, am I? Am I up to it? Just because I've started feeling better for a few weeks now, maybe I need to leave it a bit longer before I see what I'm up to. And I'm a number

Jackie Baxter  
of people that on this oil again, on the Facebook group, you know, they've, they've said, Oh, I feel better. I'm going back to work and all of this. And then two months later they're back, and they said, Yeah, yeah, don't do that. And I sort of think, how long I need to have this hanging over you? Yeah, for three months, and, and then is it still going to come back? And it's, you know, it's again, it's a mental thing.

Speaker 1  
I know I need to give myself a bit time to seem okay. I applied for a job recently that, I mean, I didn't get an interview for and in some ways, I thought, Oh, well, then maybe that's quite good, because maybe I'm not up to it. And, and actually, do you know, when I went on this week away up north the other week, and the same friend was talking about organizing something in September, and I was thinking, no, no, I need to. I can't go on another holiday. I need to work. I need to this, I need to that. And then I just thought, actually, it's exactly what I need this year, another holiday she's going up north in September, so I think I'm going to take the week, and it's just sort of a week of just being somewhere deaf. For with my guitar, and, you know, maybe going for a walk, if I can, and and some other people there, so that you're not on your own. And I feel like, well, I haven't worked really hard, so I don't deserve the holiday. But actually, you know, an ill for so long, yeah, so maybe I deserve a holiday. And who didn't need to deserve a holiday anyway. And I know earlier on this year, I kind of thought to myself, I think it's going to take this year to get better, and I don't want to think that I'm going to get better before the end of this year, because then if I don't, I'll be disappointed. And I mean, it's very unpredictable, isn't it, but I have, I do feel like I'm physically getting a bit stronger, you know. So mentally, I've sort of given myself, you know, into next year of if I'm all right, then, then I can say, right, I could take on a new job, or more regular teaching or whatever, and really sort of put my back into organizing the next thing. But maybe this year is for sort of going, Okay, I'll try and do a bit of stuff, and then, oh, there's a week to go up north and sit, sit with my guitar and just take in the view.

Jackie Baxter  
And we've sort of just got to chug along as we can, haven't? We give ourselves that time and hope that time will,

Speaker 1  
yeah, and, you know, we might want another lockdown or whatever. So if there's a holiday to go on in September of just sitting, taking the view, take it, you know, and then, yeah, give yourself the time. And just think, well, maybe, maybe next year, you'll be able to go, right, okay, I'm this bit stronger. I can manage as humans, we struggle with the lack of not, of not being in control, and the uncertainty, the not being able to say, I'm going to be able to do that. A friend that was saying to me, Well, I hadn't spoken to for ages, and she was saying, Well, you know, are you okay to just have the day in bed and not do work and not this? And I thought, well, yeah, I am, actually. And she said, Well, that's great. That's a good position to be in. And I thought, it really is, you know. And you know, fundamentally, the bottom line is money. Money is the stress. Money is the thing that that you know, apart from it's rubbish to feel ill and not being able to go for a bike ride, but actually, what's everyone terrified of that they can't look after themselves or look after other people, and we're a slave to that. And that's a that's a really awful thing, that when we're ill, we can't just go, yeah, just be ill until you're better. Be ill because there are people to look after you. Or, you know, unfortunately, we're all, you know, this is where I get all Marxist. But we're all tied into the capitalist system, aren't we, of the fact that we need to earn this thing called money.

Jackie Baxter  
We don't have money, we can't look after ourselves. And then we get worse, and possibly

Speaker 1  
other people and and actually, you know, we're not, we're just not well, we're not any of those other things. We're just not well. We put all those other things on it anyway. That's the end of my Marxist,

Jackie Baxter  
yeah. Well, thank you so much for for talking to me. It's so nice to hear your site. Well, it's horrible to hear it, but you know, you know what

Speaker 1  
I mean, we can, we can identify with each other. And that's, that's a that's a very helpful thing, isn't it?

Jackie Baxter  
Thank you so much. Care for being on the podcast and to you for listening. I'm going to close out the podcast today with the song that Kara has written. It's called Tyrannosaurus, which is her pet name for long COVID, because the headaches that she used to get were like a monster in her head. Thank you so much for listening, and please look out for the next episode of the long COVID podcast,

Unknown Speaker  
taking care of myself.

Unknown Speaker  
Looking after my health, lining up.

Unknown Speaker  
Wash them down.

Unknown Speaker  
One by one. I losing my rock and roll.

Speaker 2  
It's my body, but I'm not

Unknown Speaker  
in control.

Unknown Speaker  
I don't know your name

Speaker 3  
and trying to get along with you, Tyrannosaurus, you get the best of me. Tyrannosaurus, go on. Take what you can see. To rhinoceros if you live. To make this whole easy on me, please. We.

Unknown Speaker  
Lying here in the dark.

Speaker 2  
It's my body. I'll show you who's in charge. I don't know your game.

Speaker 3  
Shall just trying to get through the you Tyrannosaurus, you will get the best of me. Tyrannosaurus, go on. Take what you can see, Tyrannosaurus. If you have to make this home,

Unknown Speaker  
go easy on me. Please light the fire.

Speaker 3  
Open wide. Kick your shoes up. I got the

Speaker 2  
time if you really have to make this house your home. Go easy on me. Go easy on me.

Unknown Speaker  
See

Unknown Speaker  
my please. This is my home.

Transcribed by https://otter.ai