02 - Jackie's Personal Story

Episode 02 of the Long Covid Podcast is a bit of a personal one - my partner and I share our experiences of Covid and Long Covid over the last 17 months, coming from a lifestyle where we were very fit and active together to me having to deal with him going out without me, as well as him having to do so many things for me.

Although my Long Covid isn't as severe as some, it's a sobering lesson in what long-lasting effects the virus can have on someone young and previously very fit & completely healthy.


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(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter  
Welcome to the long COVID podcast with me. Jackie Baxter, I am really excited to bring you today's episode. Please do check out the links in the show notes where you can find the podcast, website, social media and support group, as well as a link to buy me a coffee if you are able, you should not rely on any medical information contained in this podcast and related materials in making medical health related or other decisions, please do consult a doctor or other health professional. I love to hear from you, if you've got any suggestions or feedback or just want to say hey, then please do get in touch. I really hope you enjoy this episode. So here we go.

Jackie Baxter  
My guest on this episode is my amazing other half, who, I'll be honest, he's been absolutely fantastic throughout this whole thing, and if it wasn't for him, I would not have managed to get through the last 1617, months. So I'll just get on and welcome Maggie the podcast. And this is an opportunity for me to talk about my experiences, but also for you to interject how, how you saw it from your side, and also your experiences of being like, really, really fit and active together to suddenly, you having to look after me like all the time,

Malky  
yeah. Well, I think the first time we thought there was definitely something wrong that we didn't know what it was, was when we were out walking some hills in the middle of March in 2020 Yes.

Jackie Baxter  
So this was way back at the start, before the pandemic had really even become the pandemic.

Malky  
It was just mainly something that was somewhere else, in another country, exactly. Yeah, sort of creeping up. But,

Jackie Baxter  
you know, we'd heard about China, hadn't we, and Italy was kind of going on London as well, but yeah, and that started to be cases here and there hadn't there in the UK, but I think at the time that was like maybe 1520, cases recorded in Scotland, you know. So it wasn't really something that we were thinking about at the time and and we we were out on a hill walk, as we normally do, it was actually a very easy to look for, for normal, but I just had no energy whatsoever. And I think my breathing was a little bit off, but it was mainly just that I was really tired. And we just sort of put it down to being an off day, didn't we?

Malky  
Well, at the start, I think I realized when we started going uphill, you were, there's a nice, long walking along the flat. And you might have said you felt tired. And I thought, whatever, it's just one of those things going up more steeply. Yeah, it was quite obvious. You weren't right then. But we didn't really know. We got

Jackie Baxter  
back home and and everything was sort of, yeah, this must have been a Sunday, so, yeah, got back home. I think you drove home, actually, I think I was feeling that tired. Yeah, you were quite rough feeling tired. So I drove home, and I was a lot. I was feeling sick as well, and the symptoms that we were told to look out for, I didn't really have any off. So it just, it hadn't even crossed our mind at this point, and even for the next couple of days, because the next morning, I sort of got up and there was no way I was going to work. I felt awful. But you know, it felt more to me. It felt more like a stomach bug. I was feeling a bit sick and a bit kind of, I don't know, I just didn't have any energy. Did I

Malky  
no two or three days of, Oh, I'll go to work tomorrow. I get all my stuff ready, and then in the morning, you'd wake up and think, no

Jackie Baxter  
chance. Not at all. Yeah, I think I was feeling a bit of pressure from work as well, because this was sort of height of music exam season. So I had kids that were sitting exams that I was supposed to be playing for. So I was thinking, I've got to go through because otherwise these children are not going to have anyone to play for them for exams and and that was probably higher up in my mind than the fact that I was ill, because I just thought it was a stomach bug at this point. And I think, as you know, I think that week was when cases started to kick off a bit as well, didn't they? And I think maybe, I think by Thursday, that was when we realized that this wasn't just a stomach

Malky  
bug. No. Well, why Thursday? I remember Thursday. I remember you feeling a bit better on Thursday, not, not well enough to go to work, and I remember going out for a walk in the park.

Jackie Baxter  
We did because we didn't think it was COVID.

Malky  
No, you felt a bit more perky. Luckily, I'd been able to work from home all week, so I was doing that anyway. And then we went out for a stroll. And I can't remember, you probably made cake or something. I probably did, yeah, and everything was fine until later in the evening,

Jackie Baxter  
and my breathing really started getting quite bad at that point. And I think, as it would generally, when your breathing starts going weird, you start to worry. And I started really panicking quite a lot, which obviously made everything worse. Worse. You know, as soon as you start panicking, that's when your breathing picks up, and then your heart rate goes crazy. This must have got kind of progressively worse throughout the evening. And I remember like I was lying in bed for quite a long time, and my heart rate was sort of going insane, you know, I'd get up to pee, and, you know, half an hour later it would still be going really, really fast, which was quite scary. Yeah,

Malky  
you didn't seem great, so I thought I would do my best diagnosis by Google, which was, yeah,

Jackie Baxter  
you did, and your diagnosis by Google really didn't help, actually, because the more you say, the more I started to panic. Well,

Malky  
yeah, symptoms match up to a heart attack. Seems pretty unlikely, but what you're going to do,

Jackie Baxter  
yeah. And I was, I was struggling to breathe and feeling worse and worse and worse. As as you started, I mean, it wasn't just your fault, but as you started to sort of say, Oh well, that symptom sounds a little bit like it could be this. And it could, well, I

Malky  
just found 999, in the end. And said, I think I've got a suspected heart attack, yeah. Because all of a sentence, someone out. And rather than that moments coming out, it was paramedics that came out initially. I think their initial diagnosis was actually, and you might feel like you can't breathe, but you I think they must have checked your,

Jackie Baxter  
yeah, they did all sorts of

Malky  
things, your your lung capacity or something, I can't remember. Yeah, you're panicking, but you know, it's nothing. You know it's that's not a serious thing. They basically told me that I wasn't gonna die. 99% sure it's gonna be COVID, because that's exactly the sort of thing we'd expect to

Jackie Baxter  
see, exactly. And they were there. They sort of phoned a few people, didn't they? Because they weren't sure what was going on with hospital admissions and tests at that point, because everything was sort of changing by the hour, almost, wasn't it. And I think they

Malky  
did offer, they did offer to take you in, but they didn't make you didn't make it to they clearly didn't want to.

Jackie Baxter  
No, well, I think they were saying that I was okay. All my levels were within a safe range, and that if I didn't really, really want to go into hospital, then it was better that I didn't, I think. And I think by this point, I think I was feeling a bit stupid, because it was basically a big panic attack, wasn't it, coupled with the fact that my breathing was not that great. I mean, it wasn't bad enough to be concerning to a paramedic, but it was, you know, I was struggling to breathe to anywhere near the level that I was used

Malky  
to, basically go to bed. No tests, because they don't do tests. Yeah,

Jackie Baxter  
that was the closest that I ever got to a positive COVID diagnosis, wasn't it? Because at this point, the you only got tested if you were in the ICU or if you were dead, that was the only reason that anyone got a test. It's not like now, where tests are sort of widespread, and, you know, everybody does to a week or whatever. So, yeah, the paramedics basically told me that's what it was to we both had to isolate for the given time, which was, I think, two weeks for you, yeah,

Malky  
I can't remember 12 or 14 days,

Jackie Baxter  
you know, I didn't feel like going anywhere anyway. And that was that. And we sort of just sort of managed symptoms, didn't we? I mean, like, you know, my breathing wasn't great. I had no energy. I didn't really get out of bed. I think I didn't shower for quite a lot of time as well, definitely

Malky  
in bed for a couple of weeks, I think, yeah, remember exactly for a week, he probably didn't really get up at all, apart from maybe the toilet.

Jackie Baxter  
Yeah, I'd sort of Potter to the kitchen for a few minutes, and that was kind of it, wasn't it, you know, I didn't really get out of my pajamas. I was upright. It wasn't for long, and I just, yeah, just stayed in bed. But I never got any of the traditional symptoms. Did? I didn't really have a fever, because they took my temperature. I didn't get a cough, I didn't get any taste and smell weirdness. The only thing I had, really was the breathing and the just complete lack of energy at all, and the stomach bug kind of symptoms. So I still felt a little bit, sort of slightly sick some of the time, you know, now nowadays, that kind of is a symptom. You know, a lot of people have. It wasn't for them. But back back then, it wasn't soon as a symptom at all. So yeah, the first, yeah, first couple of weeks, that was that. And then I did start just to feel a bit better, didn't I

Malky  
think it was because, I think they were saying at the time, most, 90% of people are only going to be ill for five days, and then they're going to be almost back to normal. And you, quite clearly weren't after five days, I think you could barely get out of bed after five days, yeah. So it was maybe, maybe, yeah, maybe two, two and a half weeks, you were starting to get up and pop it around the house a bit, started walking around the park, which was just, just around the corner, yeah. And then yeah, I think you went out, maybe cycling for a short distance. You went out for a couple of miles on the bike, and that was okay, and then walked too fast one day, and that totally wiped you out again. Yeah,

Jackie Baxter  
so I was back in bed again for that, for, I don't know, couple of weeks after that. Basically it was six weeks before I could really get off the couch. You know, I think at work. After about four to five weeks, I sort of moved from bed to couch because I was just so bored. But I didn't really leave the house for about six weeks. And after that, I think I just, I found myself so depressed that I couldn't, you know, we went and tried to walk around the block, and I got so out of breath walking around the block, didn't I that? Yeah,

Malky  
you didn't enjoy even when we managed, I think you did manage to increase your distance a little bit, but weren't too bad that first time, before you crashed. Yeah, afterwards, you weren't, you weren't enjoying it even, even, even if you were doing okay, you weren't. You just hated it. Yeah,

Jackie Baxter  
I just, I found the whole thing so depressing. I just, I would make you do it. You'd make me go outside, and I would hate it, and I'd just want to walk in front of a bus, and the weather was really nice as well, wasn't it, and it just made the whole thing that much more depressing. Yeah, just struggling to even walk, like, 50 meters without getting really, really out of breath. I think it was around about this point when I got in touch with my physio, wasn't it, who I'd seen previously for other injuries, and I think because I'd not done anything for so long, I'd got other injuries that were flaring up, and I got in touch with him about that, you know, I'd mentioned about having had COVID and that I couldn't breathe. And he suggested that actually, I just needed to use my lungs a bit more. He was suggesting gentle interval training, wasn't he, yeah, so

Malky  
not, not don't do much for long, but definitely get your heart rate up for a short amount. Yeah, he was

Jackie Baxter  
basically saying to get my heart rate up for sort of 30 seconds. So whether that was walking or running, you know, obviously it was very slow walking to start with, but then to rest until it was back down to normal, and then to go it again and do that a bit. And actually, very quickly, that did start to work. Didn't it my breathing? It wasn't because

Malky  
I know you weren't enjoying walking. So we'd started doing cycling for a mile. I think we must have started doing that first, because I don't remember you ever getting to like walking, but you must have started cycling and were able to do maybe three or four miles, and then you started doing these little bits of in tool training as

Jackie Baxter  
well. Yeah. And I think to start with, it was walking, but then quite quickly, I was able to sort of gently jog, wasn't I, in order to get my heart rate up, and then, you know, walk slowly to get it back down again. But it all, you know, at that point, things seemed to be starting going the right direction. And I think this was where I was still feeling really crappy, wasn't I, like, mentally, you know, I just, I felt like I'd been ill forever and nothing was ever going to get better. And I think I remember you saying, well, we just cycled 20k and I was just like, so I did, and your 20k was nothing compared to what I'd been doing before it went out. But, you know, compared to so

Malky  
because we were tracking all the cycling and running and walking we were doing, you can track, you can see it day on day, week on week, over the next two or three weeks, you could just see the distances and speeds improving without appearing to be any more effort. So you were quite clearly improving your fitness. You weren't noticing it. You kept telling me that you felt like rubbish. And, you know, it's, what's the point not getting anywhere. But it was quite obvious that you were getting fitter. You were you were building back up slowly, and it

Jackie Baxter  
was taking the time. I remember, we'd gone out for a second, and I remember, you know, I was okay, and the weather was hot as well, wasn't it? But, you know, I'd get back and I sort of crash out on the sofa, but then I'd be okay again the next day, and we'd sort of go off out again. I

Malky  
was lucky. I was quite flexible with work, because we started going out for half an hour at lunch, and then I think at one point, I realized, by the end of May, we were out for three hours one day, including messing around stopping somewhere. Yeah, I can't have three hour lunch breaks anymore. No, but you're quite obviously improving.

Jackie Baxter  
Yeah, things, things were going in the right direction. Yes. So it was start, you know, I wasn't anywhere near back to normal, but five

Malky  
or six weeks into you starting to do, get up and go outside again, you were, you were able to go out and do a decent afternoon.

Jackie Baxter  
And through, throughout June, that sort of continued. The beginning of July, wasn't it? We started hill walking because we were now allowed to travel, yeah. So we thought, well, you know, we'll, we'll start small. But at this point, I thought I was still getting better, you know. I thought, you know, this, this is my recovery. I'm sort of, I'm getting there, you know. I just need to keep going. The nightmare is over. And I think this is where our definition of small, and maybe other people's definition of small varies.

Malky  
Yeah, we go and do something. I think we went out and did early July. We went out and did a walk that was, maybe, I can't remember now, 1010, or 11k and had about 700 meters of ascent in it, which to us is, which is a pretty short one evening. It's an evening's walk, so straightforward walk. And we got on, okay, I think,

Jackie Baxter  
I mean, we went slowly. Yeah, we went we we took it slow, but it wasn't actually that much slower than we normally would. And we sat for a long time on the top. You know, I coped, didn't I? You did. I was tired by the time we got back, but I coped. I. So for the next sort of week or so, we started, we carried on doing sort of, you know, small, smallish things. We did a bit of cycling as well, didn't we? And was it, was it, after about a week of sort of doing this, I just crashed. I'd been getting better. I was sort of 303, and a half months on from being ill, you know, and this was an illness where most people were over it in a week. So, you know, I didn't seem to be being unreasonable at the time. I remember speaking to a doctor, I think, shortly after this crash, and saying, Look, I've been doing this, it didn't seem unreasonable, but I just feel really bad and and he seemed to think that it was probably just lack of fitness, and that I just needed to, you know, go easy, but, you know, just keep doing it, and things should improve, which seemed to kind of fit with what we thought as well. Wasn't it, you know, that I, you know, I'd not really done any walking for, you know, four months or something, more

Malky  
and more walks where you would just hit a wall, I don't know, some some point into the walk, a couple of hours, three hours in, whatever it happened to be, you would you just suddenly completely run out of energy. Yeah,

Jackie Baxter  
and somewhere around about here, I can't remember exactly where it was, but this is where breathing problems came back, and the tight chest that I dealt with at the start, where I felt like I was being suffocated, that all started to come back as well at this point, I just remember thinking, this is where I was like four months ago. Why is this happening and the breathing problems, you know, just something about it coming back again. You know, it was scary enough the first time, but enough the first time, but coming back. There were so many nights where I was lying in bed terrified of going to sleep because I just didn't know if I would wake up again. I just felt like I wasn't breathing. And it was, it was just, it was so scary. And then there were those nights where I was lying in bed, not, you know, thinking that I might not wake up, and then thinking that that might be a good thing. And at this point, long, COVID didn't exist. Women obviously did. But, you know, nobody really knew about it. There was, you know, most people either ended up in the ICU or they got better within a week or so. And, you know, I think it was during the summer, wasn't it When? When, when you sort of realized that there were other people that hadn't got better, and it wasn't just me, and even though it wasn't really being acknowledged by the government or the news or anything, at this point, you did start to hear about it? Yes,

Malky  
I think, I think the advice was, Oh, you'll probably get better in six months or so.

Jackie Baxter  
We'll be right back. I'm interrupting myself for a second to tell you about long COVID breathing. The Fabulous Vicky Jones and I have teamed up to bring you long COVID breathing. We are both passionate about sharing our expertise and experience of the breath and how incredibly helpful that can be with long COVID, we've worked together to develop a course that is specifically tailored to those with long COVID. It's a six week course with 12 sessions, all delivered online. The community feel and learning that we're all sharing is such a joy to find out more information and to sign up for our courses, workshops and other shorter sessions. Please check out the link below long covidbreathing.com or email long covidbreathing@gmail.com to start your breathing journey with us.

Jackie Baxter  
And I think it was you that suggested, because you know, as much as you were able to sort of be understanding. You couldn't really quite get what I was going through. So I think you suggested that there must be some sort of support group somewhere,

Malky  
yeah, I think I did, yeah. I didn't know what to do, and I thought there must be other people going through it. And I think initially I suggested it, and you said, Oh, I can't think of anything worse than this. Is really depressing, finding loads of other people who are really depressed as well. Yeah, you did. You went

Jackie Baxter  
in front, yeah, I did go and look. And actually, in some ways, it was quite reassuring, because there were so many other people that I hadn't realized I felt very, you know, I'd felt really alone through all of the bit where I'd been feeling awful because I wasn't dying. So doctors and GPS and everything didn't, they weren't really interested, you know, they were too busy dealing with the with all the people that were, which is sort of understandable. You just sort of think, normally, if I was complaining of not being able to breathe in chest pains. You know, you'd be into the hospital for a barge of tests before you could blink. But, you know, because there were so many other people that were worse off at the time, you know, they were sort of like, we can't really deal with you, so you just have to deal with it yourself. So finding out that there were 1000s of other people in the same situation. And was comforting, at least. And you could sort of bounce, bounce symptoms off each other as well. Because I think at this point, you know, there were other symptoms that started happening, and you sort of think, Oh, that's a bit weird. And then you searched it on the support group, and you realize that, you know, there were 200 other people that had had this other strange symptom. So, you know, rather than panicking about it and making everything worse, at least I could realize that it wasn't just me.

Malky  
Yeah, I think certainly looking you could never really, you could never really be the judge of whether you were feeling better or worse one week to the next. You just knew you were feeling rubbish, quite a lot. Yeah, and even when you were getting better, before July, when things started getting worse, you couldn't see yourself getting better. It's quite easy for me to see, certainly, especially through exercise. I could look at what we've done, and I could see that after the start of July, I could see pretty much hit a plateau, and you go through weeks where you you were really bad, and weeks where you were not too bad, but you weren't improving anymore. Start of the summer, we'd had a big plan of how by the end, by August and September, will be able to do much bigger things. And suddenly became obvious, after two or three weeks, that that was there was no more improvement, and any any kind of push to get a bit fitter just resulted in a new,

Jackie Baxter  
yeah, my body couldn't handle it. A couple of weeks, you have

Malky  
a couple of weeks of, well, there were very few days when you were on the sofa the whole day, but there were certainly lots of days when you were you'd maybe, yeah, walk around the block and that would be it. I

Jackie Baxter  
wasn't able to do mornings either. And I've always been quite an early bird for work. I was always on the train at seven o'clock or something in the morning. You know, I'd quite happily hike up mountains for sunrise, but I just couldn't get

Malky  
out of bed before 10, which wasn't initially a problem, because it was, it

Jackie Baxter  
was during summer holidays. It wasn't a problem. But I think it was sort of at the beginning of August. I think we had your parents staying for a week, and it was kind of around about then that I realized, I thought, I don't really know what's happening for work in August. You know whether the schools are going back and what me as an instrumental teacher would be expected to do, but it was around about then when I thought, well, if I'm expected to be in school, there is no way that can happen. I couldn't have coped with it at all. There's no way I could even have managed to get there, let alone actually thinking

Malky  
I'm gonna have to go in and etc,

Jackie Baxter  
yeah, I was Yeah, but I

Malky  
think you Yeah, just pointed out you can be sick. You know, you don't have to be in. You can, you can be off sick. And I think

Jackie Baxter  
that was a bit of a revelation to me, because I don't get sick ever. But

Malky  
you wish you didn't actually

Jackie Baxter  
do anything. I didn't. Yeah. I mean, I think

Malky  
the way you were working is that no, no one knew. None of your instrumental teachers were going back for the first two or three weeks. So you were all working online anyway. So you had a a week or two to,

Jackie Baxter  
yeah, I did. I had a few weeks to, kind of, you know, work out where I was at and what we were going to be expected to do. Because, you know, as as an instrumental and music instructor, I cover six schools over four days, and you know, there was no way that they were going to be expecting us to do that, because they were going to be strict rules on, you know, how many children and how many schools you were allowed to be in and everything. And I remember having a conversation with my boss, Nate, I think it was near the beginning of August, and he explained to me that there was no way that there was no way that we were going to be in lots of schools. And I think I sort of was saying to him that as much as I appreciate that actually being in any schools, I think is going to be impossible for me. And to be fair to him, he was very understanding and said that my health came first, and that we could deal with it as time went on, so that was a bit of a way off my mind, at least. Because I think at this point I was starting to get really worried about it, just, you know, with with the sort of the not knowing, and as soon as you put pressure on yourself to get better, then suddenly, that makes everything even worse, doesn't it? And I've noticed that throughout actually, any anything that stresses me out will bring all my other symptoms back and cause all sorts of crazy anxiety, which then affects everything else, which is really strange, because I've never had that before. Well, luckily,

Malky  
you were able to, as everyone else started going back into school, you were able to carry on working from home, the way it ended up working. You weren't initially doing that much. There was a lot of sending emails and recordings to people,

Jackie Baxter  
but I was able to manage my hours myself, manage.

Malky  
You could basically do a bit of work and then have a bit of a break and do a bit of work. There wasn't much. Wasn't too much of a constraint around what you had to do. Yeah,

Jackie Baxter  
and I could lie on the sofa, reply to emails, go and do a couple of, you know, record a couple of videos for kids, and then go and, you know, lie down while they uploaded. So I was able to sort of manage that myself. And although I still had a lot of days where I felt bad, I was sort of just about coping at that point, wasn't I? I mean, exercise wise, we weren't able to do that much. And. And that was kind of the case. I think it was about September when we were going to be expected to go into a number of schools. So at that point, I had to have another conversation with my boss, and he said that they would allow me to work from home, and I must have got a doctor's note to support this as well. But throughout all of this, I'd had a few conversations with the doctor. But again, they weren't really that concerned. Were they? They were kind of, you know, they remember one doctor asking me if I, you know, had asthma or diabetes. And I was thinking, what's that got to do with anything? But I think they were trying to establish whether I was in the net risk category, and I wasn't, you know, on paper, I was 30 at the time. I was very fit, completely healthy, no other health conditions whatsoever. So on paper, I should barely have noticed it. So I think they still really weren't that concerned at the time. They

Malky  
weren't, I think they were happy enough to sign you off, but they weren't really, I don't think they were really paying much attention to what they were signing.

Jackie Baxter  
No, but I think, yeah, there was still very, very little awareness of long COVID. I think it was kind of known by this point.

Malky  
Oh, there was definitely a time. There was a time, was it September, when you got a series of tests.

Jackie Baxter  
So I went for it. I think the doctor that I'd spoken to said, right, well, you know, this has been long enough now, let's get some blood done just to rule out anything else. So I went to get all of that done, and they all came back clear, which which was good, but at the same time, it didn't really tell us anything that we didn't know already. You know, there was obviously something wrong with me, but it wasn't showing up on anything by this time. Case, numbers were starting to rise again. You know, certain areas will get they weren't locked down yet, but they were certainly saying, you know, don't travel, don't, you know, you still stopping people from meeting. And things weren't. They certainly in the central belt as we sort of got into October, and nothing had changed for me. I was no better, just

Malky  
going through better phases and worse, yeah, exactly real change,

Jackie Baxter  
sort of weeks where I was sort of okay, no, well, you know, okay, ish, you know. And then there were weeks where I was really struggling to sort of get off the sofa, which, you know, I could sort of manage to work with with this but ups and downs, but no good improvement. And then I think it was towards the end of November where we were allowed to start teaching via video, which I was really excited about, because, you know, I'd not been able to teach any of these kids live since the second week of March. Obviously, teaching face to face video is a lot more tiring. Is more constricted as well, in terms of you have to arrange a lesson and then stick to it than fitting emails and videos and stuff around. How was I was feeling? We'll be right back. Hey there. I'm just jumping in for a second to see if you're enjoying this episode. If you're finding it useful, maybe you would consider sharing it somewhere, a friend, a group, or even on your Twitter feed. If everyone was able to share just once, we'd be able to get this information out to even more people who really, really need it. So please consider sharing something. I hope you enjoyed the episode, and thank you so much. Yeah,

Malky  
I think you started to have longer days. Yeah, to get up you were reasonably lucky to be able to carry on not getting up much before 10. Yeah, I was starting November, and then you had to, you had to start getting up a little bit earlier and doing longer days and having more structure and sticking to sticking to a timetable someone else had made, or where you might well, I was making the timetable yourself. I was

Jackie Baxter  
able to manage my own hours. To some extent.

Malky  
You still had to, you still had to line people up to teach at certain times and do it. I

Jackie Baxter  
was able to give myself breaks, and I, again, my schools were quite understanding, but I was, you know, I was having to say, right? You know, I can do maybe two back to back, but then I need a decent break. Because I just, you know, I need, I need a rest. And I was generally able to do this, but it still took its toll, didn't it? Because by the end of December, when we broke up for Christmas, I basically spent the Christmas holidays, you know, three weeks basically over Christmas, sort of flat on my back for quite a lot of it, I was absolutely broken, wasn't I?

Malky  
Yeah, you can't have been so bad on the run up, because I think we did a few more things. We probably did too much. You had quite a lot on at work, and then we'd try to go out a bit as well. And we'd had a couple of good days. And then we probably by

Jackie Baxter  
good days, we mean small still, yes,

Malky  
yeah, obviously, but you'd had a couple of good days, so we had managed, okay, and we thought, Oh, the weather looks good. Let's, let's try a couple more. And that was probably a bad idea to all the all the extra. School, work you had, it was

Jackie Baxter  
a bad idea, but I think at this point, I mean, I don't, I don't know if it clicked for you by this point, but I was still naively thinking and getting better. I mean, I wasn't, and it was really obvious looking back that I wasn't, but I thought, you know, given that the amount of time that had gone on, you know, I must be getting better,

Malky  
or I could see you weren't getting better. I could, you know, I guess you were just going through a phase when you had a you'd maybe had a good week. You seem to think you could get away with a certain amount of exercise. So we'd plan around that, which is probably a bad idea,

Jackie Baxter  
I think, as well having so little advice and help from any medical professionals, we just thought that the best way to go about it was to just keep doing things when I was able to, I think it was, I don't know, there was something in my mind that I just thought, Well, I must be getting better because it's this long, and then when Christmas hits, Christmas was just incredibly depressing, wasn't it? Because I just felt so bad, and I thought, well, actually, you know, I think that was kind of where it hit me that I realized actually, I'm not getting better, if anything, you know, I feel worse than I have in ages. And that lasted for the whole of the Christmas holidays. We had a few days, didn't we, where we managed to get out and do the effect. It was really struggling. And

Malky  
we took you well into January before you were kind of back to where you were before Christmas Yeah. And

Jackie Baxter  
looking back, I there were many, many days that I did go out and do something small and really shouldn't have done. I think the only thing that has improved over the past year is that I've got better at realizing when I shouldn't do things. So now, if I don't feel good, I won't try and make myself do something because I feel like I should I will just lie on the sofa and feel like crap. I think pushing myself to do things when I am already not feeling good is probably not a good idea. Probably not. No, even though it goes against my entire way of life. It's difficult,

Malky  
though, because I'm I want to do things as well, and Jackie wants to do things. So yeah, exactly. Think something's a good idea, and we go and do it, and then we realize we shouldn't have done and I should be saying, no, let's not do that. But I'm just as bad at saying it, yeah, you are. Let's go, yeah. We could go a bit further. Yeah,

Jackie Baxter  
I think yeah. The difficulty is that I'm used to being active all the time. You know, I used to cycle to work. I used to cycle and run in the evenings. We used to spend all of the weekends and all of our holidays. I camping and hiking, and, you know, doing things. And even, you know, even my job is quite active. It's, it's not a job where you just sit at a desk all day. So I, I'm always doing things, and even when I'm just sort of bumming around the house, this frustrates you, doesn't it? I can't sit still. I have to be doing something. So I'll be, you know, in the kitchen trying to cook or fiddle around doing something. And that is, I'm finding it very difficult to not do that. We are always looking to go and do things, aren't we, and I think you, you know, you've been very patient most of the time with me, saying, right? Well, you know, if we're going to do something, it's going to be something really small. But I guess at the same time, you're always looking to do things,

Malky  
yeah, so I'm always making the mistake of saying, Oh, well, we've got this far. What if we went further? How would you feel about that? And you usually say, Well, don't feel too bad, actually. Yeah, maybe we should go and try and then, yeah, half an hour later, you think that was, that was a bad idea. I shouldn't have done the extra bit. And,

Jackie Baxter  
you know, yeah, and rather than have a day on the sofa, you're always looking to go out and do something, because that's what we would always do. We don't sit around on the sofa and do nothing because I can handle

Malky  
a day or two on the sofa, but I've had quite a few of them now, both as bad

Jackie Baxter  
as each other, in some ways, but nothing really changed. Did it this year? So

Malky  
January, okay, some bits of February, okay, another crash, I think, in the middle, in the end of February and

Jackie Baxter  
January, February were both very cold this year, weren't they? And it was around about this point when I started noticing other different symptoms. I think, you know, there were all sorts of symptoms that were popping up. I mean, I think the fatigue was probably the most debilitating thing. But my, you know, my breathing got quite bad. Sometimes, even like sitting on the sofa, sometimes I'd find my breathing go crazy and the tight chest thing would come back. So, yeah, one of the symptoms that seemed to pop up early this year, January, February, time when it was so cold, was that my feet would go numb and they would take hours to come back. I think in themselves

Malky  
going numb not a big deal, because mine were going numb as well. Yeah, yeah. They were going very numb, yeah, in strange places,

Jackie Baxter  
yeah. And they'd sort of go quite dark. You'd have sort of like dark bits and white bits all over the place. And at the time, I wasn't that concerned about it, because I thought, well, it's just really cold. Everyone gets numb for gets numb feet. But this persisted, didn't it, to the point where now it's July, and it happened when I was sitting outside in the garden this afternoon, and it's been like 25 degrees today. So this is obviously not something that. Is, that's right. And again, other people have been reporting similar symptoms, which in some ways is reassuring, I guess, but it's also, you know, shouldn't be happening, yeah? I mean, through it, throughout May and June, again, I was, I was still working from home at this point, we had managed to get out and do some things. Hadn't been out

Malky  
camping and not doing long walks, but we've been out doing little bits and pieces and camping, and it

Jackie Baxter  
was nice, even though I couldn't really do very much. It was nice to camp and actually just get away from the four walls that we've been stuck in for so long. It was just, it was nice to, you know, be able to camp on a beach or something and watch the sunrise, even if there wasn't that much else that we could do. So that that was quite nice. But then after that, May to June. Kind of time

Malky  
may was mixed. But June, I remember June you did very little than June when you did try and do things. When we tried to go out for a walk a couple of times, it was a real struggle, even just to do a short walk. I

Jackie Baxter  
mean, we introduced Malki assisted walking, didn't we? Where you would literally push me, push you up hills, and not even big hills, you know, we're talking about gradual inclines. And I just, I was struggling to put one foot in front of the other, and you would just have to push me in order for me to actually get anywhere. I would struggle with my coordination as well. Sometimes when I get really tired and I just find myself stumbling all over the place, yeah, I

Malky  
think you had, I do remember one time when you, you particularly, you tripped over something and fell over and then just put you in a really foul mood.

Jackie Baxter  
Yeah, I was just getting six months

Malky  
of rage, yeah, yeah. I 12 months or whatever,

Jackie Baxter  
yeah. And, I think, yeah, I found as time went on and no improvement happened, it just got more and more frustrating, more and more pressing, because I didn't really know what to do. There wasn't a lot of advice from anywhere as to what I should be doing. Should I be trying to exercise? Should I be doing nothing? There was not really any advice from anywhere. And, you know, as a person that exercises what I do, I just didn't really know what to do with myself. Did. I had sort of little projects, and then I decided to learn the violin, which was one of your favorites, yay.

Malky  
No, it's good. There were good bits to that.

Jackie Baxter  
It's been fun, and it's been something that I could do that doesn't require that much energy. But even concentrating energy, I can't do that much of at once. As time went on, it was just I didn't really, you know, I didn't know what to do to make myself better. And, yeah, there wasn't any advice from anywhere. And I think, yeah, you didn't really know what to do. You didn't know what to say. No idea. And you know, you would say things, and then I would start blaming you, even though it wasn't your fault. But you know, it was. I guess it was hard for you to know what to say, because you'd been watching this for

Malky  
Yeah, well, I guess I realized that just saying, Oh, I'm sure it get better, assuming that's not going to get anywhere. So just to being honest or sarcastic, which is great,

Jackie Baxter  
you know, I mean, I think it's worth saying as well that, you know, throughout all of this, you know, you'd gone from somebody who was sort of in a relatively 5050, kind of thing where we shared tasks. And you know, for the last 16 months now, you've been doing everything.

Malky  
You mean, we shared tasks like I did hardly any of the cooking, but you

Jackie Baxter  
did all of the cleaning, you know, the things like that. You know, yeah, you know, you've, you've now been doing

Malky  
maybe a bit less lazy. Yeah,

Jackie Baxter  
Yes, true. You've basically been doing all the cooking, all the cleaning, all the washing, shopping, whenever we go out for any sort of exercise, any walk, you carry everything, you drive there and back, because I can't handle that, certainly not on top of a walk. Kind of been doing everything for me. And if I, if you hadn't have been doing that, there's no way that I would have been able to actually manage to keep working, even if it is from home, because it would have just taken up so much more energy for me. So you've gone from, you know, basically we went out on the hills and did all whatever we wanted all the time with sort of limitless energy to basically being my full time carer, almost for the last well, now 16 months. So that must have had quite an impact on your life as well. Well,

Malky  
yeah, no, not really. I mean, it would if there was, since everything so weird at the minute, anyway, it's not really made things much weirder?

Jackie Baxter  
Yeah, I guess so, because everything else has been locked down anyway, something

Malky  
that'd be more obvious if think, well, I don't think anything's gonna get any different anytime soon. No,

Jackie Baxter  
it's the summer at the moment. You know, in Scotland, schools broke up at the end of June, and I've now been off on holiday for just over three weeks. I think. Work, and the last three weeks have been about the worst that I've had in quite a long time, aren't they?

Malky  
Yeah, you've just about started to pick up. Last few days, there's been about two and a half weeks of lying on the sofa doing a bit of gardening occasionally. Yeah, we've not really done a great deal. I know there's a couple of times we've been out for a walk around, just for, just from the house, for 40 minutes, and you've, you've really,

Jackie Baxter  
really struggled with that, yeah. I mean, there were, there were days where I literally couldn't get off the sofa. This is now after so much time. Sort of think, how am I this bad still? But the, yeah, the the yoga thing was a bit of an eye opener for me. I mean, yeah, how did you get into yoga? I think it was a friend of a friend via Instagram, which sounds a little bit insane, but the guy who was saying something about long COVID specific breathing classes and trying to gage if there was anybody that might be interested, and a friend of mine spotted this, I think she's a mutual friend, and tagged me in this post. And I was just like, well, I got to the point where I would literally try anything. So I thought, Well, why not? You know, yoga that's quite interesting. Never would have thought of doing that. But, you know, why not? I have literally nothing else to do. I might as well try it. So I sort of signed up to this program, which also gave me access to other yoga classes throughout the week. I had never done yoga in my life at this point. I didn't really know what it was, but I sort of enrolled in this and started going along. And there was a group of, I think about six of us who, you know, started off by sort of trying to describe symptoms and and the guy was that was running it, you know, he's he's got a background in nursing. He's basically saying that long COVID, as well as a lot of other long term health conditions, have dysfunctional breathing. So his theory was that if we were able to improve the way we breathed, it wasn't a cure, but it would certainly not do us any harm, and it would hopefully help the fatigue as well. So I sort of started doing this thinking, Well, what have I got to lose, really? And it was really difficult to start with trying to retrain stuff that you know you didn't realize was wrong. But actually, over the past two months I've been doing this month and a half, I know, actually I make myself get up in the morning for yoga, and my breathing has actually improved quite a lot, I think. And certainly the anxiety has it's not gone away, but I think whenever I start panicking, I sort of know how to deal with it now, which is great, because I basically refused to do anything that involved other people. Didn't I. I would not go near a shop do the shopping. We've not been to a pub or a restaurant where, you know, since they've been open, the thought of being around other people just sends me into a complete panic. But I did actually manage to push the trolley round Asda and do most of our shopping without running out having a headache attack. So that's got to be an investment. Yeah, it's been good as well to have a new hobby. You know, you are like, oh my goodness, stop talking about yoga. What I'm

Malky  
really thinking is yoga is great for you, because you never stop moving and shut up. And yoga makes you do that for

Jackie Baxter  
it makes me still Yes, and actually lie on the floor for 20 minutes and not do anything, because that's the sort of thing that I would really struggle to do if I really need to do, yeah, if I wasn't being made to do it by some guy talking on the screen. So it's actually, it's been really good, you know, it's been good to get into something else, even if it wasn't the thing that I thought that I would be getting into this year. And it can genuinely say that I've actually been enjoying it as well. And, you know, my breathing does seem to be improving. It doesn't seem to yet have made any difference to the fatigue, but I think that was probably more to do with the fact that it's just ups and downs, and I've just hit a really big started

Malky  
doing or you've started getting the hang of it, just as you hit a really bad Yeah, exactly. So it's been hard to judge really, but

Jackie Baxter  
I have definitely noticed an improvement in my breathing. Whoops, is going to be joining me on the podcast in the coming weeks, so it'll be great to talk a little bit more about yoga and breath work and how he thinks that it will help. So I've got about three weeks left of the school holidays, and I think at the start of the summer, I think maybe before I hit that big crash, I was thinking might feel better enough in all this to go back to work, probably not full time, but maybe, yeah, maybe for a day or or something, you know, in some sort of phased return kind of thing. And the fact that I would have had both of my jabs by then would make me maybe feel slightly more comfortable about being around people. But now having. Had a big three week crash. I think it's fairly obvious that there's no way that I'm going to be returning to work in August, whether I'll be allowed to work from home or not any longer. There's a conversation that I'm going to have to have with my boss.

Malky  
Seemed to wear you out last time, even though you didn't notice. Well, it

Jackie Baxter  
did exactly yes, and you know, I've got a responsibility to my students, but so have, you know, the schools and my boss, and if they feel that people are suffering as a result of me not being there, I don't think they are, but it's obviously got to come from them as well. So that's a conversation that I'm going to have to have. You know, I'm actually really, really lucky. I'm tired that first thing I've had a really understanding boss, but also that I've been able to work from home, so I've not really taken any sick leave as a result of this.

Malky  
I didn't start. Oh, that's true. There was a couple of weeks, yes, I forgot about

Jackie Baxter  
but at that point, everyone was in lockdown and panic, and there was nothing much going on anyway, teaching, as far as I'm aware. So throughout this whole thing, I've not really taken any actual sick leave.

Malky  
Obviously, been lucky, also that I'm working pretty much 100% from home, so I'm around to do stuff, yeah? So you're able to do everything for me. Could, in theory, have been commanded to go back to back to the office, or be out on site or something. Yeah. So

Jackie Baxter  
it's been quite lucky for both of us that we've both been able to work from home, and therefore Malcolm being able to look after me. But yes, yeah, the future is definitely. We were talking about this the other night, weren't we were thinking, well, actually, even if I am working from home, maybe I shouldn't be working four days, because that, you know, kept taking its toll on me before, and I'm not very good at saying no, either, am I. I take things on. You've taken

Malky  
on extra stuff, fun stuff, probably, but stuff that ties you out, yeah?

Jackie Baxter  
Because I yeah, I like having things to do, and I'm not good at saying no, so, yeah. So that's a conversation that I'm going to have, and I'm gonna have to hash that out and and see what happens. I don't really want to go off sick because I would be bored out of my mind and Malki would go nuts.

Malky  
Yeah, you'd be pestering me all day, yeah, when I'm a small child.

Jackie Baxter  
And I also don't want to go off sick because you don't know how

Malky  
long, yeah, how long you're going to be off for? Yeah,

Jackie Baxter  
you know, there are so many people throughout this that have lost jobs because they can't do it, and they've run out of sick leave, and they've either had to go back when they shouldn't, or they've lost their jobs because they've not physically been able to to do it. I, yeah, I'm a bit concerned about going off sick, because how long am I going to be off sick for him, and how you know, when am I going to get better? Am I going to get better? So, so this is all kind of a little bit of a worry as as we go on, and I think, you know, I don't think anything is going back to normal, despite all the restrictions getting lifted, I think things are going to be bad for a while, and I think they're going to get worse too. But, you know, as as things do return to normal, I think we're certainly going to notice you're going

Malky  
to notice people are going to forget you're ill, and they're going to forget anyone was ever ill, and they're going to wonder why you aren't there, why? Why Why can't you be in school? Because we don't do this working from home. Yeah, get back here now, I think people's memories are

Jackie Baxter  
going to be quite short, yeah,

Malky  
even, even if, even if your teaching isn't suffering as a result of it, they're just going to assume you should be there. And you know that's, that's what you should be doing, and that some people can be a bit inflexible. Yes, yeah, I guess you'll find out soon enough. Yes,

Jackie Baxter  
I think so, yeah. You know, at the moment, you know everything's kind of online. You know, you go to the online pub and you do it on Zoom, but you know things are now open and people are now meeting in pubs. We are not going anywhere near a pub. But you know, people's expectations are, oh, do you want to come for a pint? And I would be like, No, I don't want to go anywhere near people coming up. Do it on Zoom. But as being in a pub becomes more normal for people, you're gonna miss out. Yeah, exactly, yeah. I'm gonna find myself missing out. That's where you're gonna notice things. I'm gonna notice things, yes, yeah. And if you if your office wants you to go back, which

Malky  
I don't think they'll be too pushy on To be honest, but still, they will. They'll, they'll be expected. Yeah,

Jackie Baxter  
I think, yeah, if you were expected to be in the office and I was on my own all day, I would struggle with things that I would need to do to be on my own all day, like, you know, making lunch and and things like that. I mean, I certainly notice it, you know. And you've, you've not done it that often, but you know, when you've been like, I need a day on the hills, and you've gone off and and gone up something that I wouldn't have a hope in doing, and I I hate you doing it, and I also hate myself for that, because you need to go and do that. You're not ill. You have a life to live. But it just makes me so upset. It when you do, and then that makes it worse, because then I feel bad for feeling like that. And I think as time goes on, you do that more, you know, you go out running and cycling without me a lot, right? You've done that the whole way through. And, you know, I don't like that, but I don't feel the loss quite so much because, you know, there's, it's just another bike ride, or it's just a run, you know, and as much as I love running a cycling it's not like it's anything special so much, but when you go out and have an amazing day on the hills without me, it's horrible for me, but I can't stop you doing that. I don't want to stop you what I'm going to do, but I don't. But as time goes on, if I don't get any better, that's gonna happen more and more. Yeah, with things you know, returning to whatever normal is now. I don't want to say new normal, because I hate that word, but

Malky  
it just depends how much you can do. If you can do a bit, I'm quite happy going out and doing doing stuff with you, but if you can't do anything, then I'm gonna need to go out

Jackie Baxter  
on my own. Basically, you You've often sort of been like, right? We're going to do something. Get off, you know, get off the sofa. Stop feeling like, well, just get up. We're gonna do something. And sometimes, you know, I've managed something small, and I've been glad that you've pushed me out the door. But there's also been times where you've been like, Come on, let's go and do this. And I've been like, Dude, you know, just know. And I think it's really hard for you to judge. I

Malky  
can't judge because sometimes you start doing it and feel better. Sometimes you've just kind of been sitting there so long, you've just lost interest and you can't be, you know, you don't really want to even try it. And other times you are genuinely, completely screwed and have got no chance of doing it. And it's really hard to judge which one of those you're feeling at that time. Yeah.

Jackie Baxter  
And I think, I think you said the other day, it's hard for you to tell when I'm genuinely feeling dreadful and when it's just a mixture of, you know, lethargy and depression. Because I think as time goes on, I mean, I've noticed recently I'm really struggling, you know, it's just, it's been, it's been so long, you know, and I can't do any of the things I want to do, the few things that, you know, maybe I'd started being able to do something I can't do because I literally can't get off the sofa. You know, nothing's got better. I feel worse in the last three weeks than I have in a year. And you know, there is, there just doesn't seem to be any end in sight. And then coupled that with the fact that, you know, everybody else is out there, living their lives, enjoying themselves, with restrictions being reduced. You know, people can travel around and do what they want and they you know, so literally, everybody's up the hills and out enjoying themselves, and they're entitled to do that. But it just brings home to me how much I can't do and how much my life has changed over the last year? Yeah, well, 16 months, and then you get people that are writing off long COVID As well as being, you know, it's not a thing. Well, it's

Malky  
very difficult to describe to people, really, yes, basically I'm telling people that you're ill long term, but then, you know, I'm saying, Well, we're out at the weekend, and it's hard to get people to understand that you can do that sometimes, to some extent, other times, you can't do anything. As it's I just feel when I'm trying to explain what the problem is, it's quite difficult, you know,

Jackie Baxter  
it's hard for them to understand if they don't see any you see it day to day. So you sort of, although you not actually living it, you can understand it in a way that a lot of people can't. You know, they don't see the before and after. I actually went to doctors about a week ago. Was it to get some more bloods done, which all came back clear. And I remember chatting to the nurse, and she was saying, Oh, well, so you're still not right then. And I was like, No, nothing's really changed. And we've sort of had sort of having a wee chat about it, and, and how she was sort of saying, you know, you you you look okay, and, and she wasn't saying that in any sort of bad way. I think she was sort of agreeing with me that, you know, you can look okay, but not be okay. Because what she didn't see was the fact that when I got back from the surgery, this was in the morning. I think the appointment was like half past nine or something like that. That was basically the day after that. Yeah, I got back from that, and I could not get off the sofa for the rest of the day. I think I probably got up for dinner that one act of going to the doctors basically wiped me out for the rest of the day, you know. And you can appear on a zoom call. And I think, I think everybody does it. You know that they like to show their best sides. So when you're talking to people, whether it's on a on an online call, or if it's a nurse in the doctor's surgery, or if it's the postman, how are you doing? Oh yeah, I'm all right. Yeah, you don't want to moan about how bad you feeling, or how bad you've been up to that, and the fact that, you know you were lying on the sofa until five minutes before the call, and you know, as soon as you're off the call, that's where you're going back to. They don't see that. So, yeah, it's hard for other people to really understand, I think. And then I get days where actually, yeah, I can, I can go out on my bike and do a bit. It. And I think, oh, okay, yeah, I'm not feeling so bad today. And then the next day I'm straight back to, I can't move again to, and it's hard to describe that to people as well, yeah,

Malky  
because people are probably thinking, Oh, how can you be out on your bike at the weekend, but you can't come to school during the week.

Jackie Baxter  
There are, there have been lots of weekends where I've managed to work throughout the week, and then I've spent like Friday, Saturday, Sunday, doing virtually nothing, because I've been so wiped out from doing the week. And then there have been other times where actually I've sort of not felt so bad, and we've managed to go out and do a bit of a cycle over the weekend. But then come Monday morning, oh my goodness, it's, it's a real struggle, but I find myself pushing through work because I always feel awful in the morning. So I get up in the morning and think, right, okay, I'm gonna, I'm gonna get through the first lesson, and then hopefully I feel better. And sometimes I do, but they've also been days where I've managed to get myself through the first lesson. I thought, oh my goodness, I feel dreadful. How am I going to manage the rest of today? But I feel like, because I've logged on for the first lesson, I can't call in sick because I've already managed to get up for the first one. Yeah, that's something you need to change. So that is definitely something that I'm going to need to get better at. Is actually being like, you know, actually, no, I'm not coping with today. I need to go and rest. It's so difficult to go from a lifestyle where you're got energy all the time to where I just can't get up. It's hard for me to judge as well, and it's hard for you to judge too like, what I can do and what I can't.

Malky  
Yeah, I can judge quite well once you're trying to do it, but

Jackie Baxter  
exactly by then it's kind of too late. Damage is often done, isn't it? Yes.

Malky  
And again, I can see, looking back over what we've done, where the highs and the lows are in terms of energy over the last sort of few months, but it's hard to judge where you are right at this minute. You

Jackie Baxter  
can always look back and be like, Well, I did too much that week. That's where I felt awful the week after. But at the time, if I'm having a day where I don't feel too bad, then, you know, I want to make the most of it, because, like, I don't get that many good days, so I don't want to waste it by sort of not doing too much. I want to get out there and try and do something. It's hard to know what I should be doing as well. Most things you know, you gradually increase what you're doing and you're fine. But with this, it doesn't seem to be no progression. There's no exactly.

Malky  
You can't get a bit fitter, or get, you know, be able to walk a bit further, or cycle a bit further, or run a bit faster, or whatever, or work an extra day, or work an extra day, or anything. Basically, if you you can do stuff to an extent, and if you do too much of it, that's you back to square one or quite a few squares the wrong side of it? Yes, exactly. You don't know what that point is until you've already gone past

Jackie Baxter  
it. So as it is, we basically, you know, we're not very good at it, but we try to keep doing little bits as and when I feel up to it, and then inevitably, I'll do something that's too much that will set me back. And, you know, kind of just keep hoping that either at some point something will improve, or that, you know, research is starting to happen now, maybe they'll come up with something. And the other problem that I'm coming up at is because I was ill in March 2020 before there was any testing. You know, the first question you ever get asked now, oh, so when did you test positive? And I never did test positive, because no one was tested at the time. So I can't exactly, so I can't say my positive test was March 2020 you know, that was when I had COVID, and that's what it was, because it couldn't have been anything else. You know, it was confirmed by the paramedic, but on paper, I never had it, so therefore I can't have long COVID. I don't think I exist in any statistics anywhere. You know, they're talking about trying to get numbers for how many people have it. How do you count? How do Yeah, exactly. You know, it's difficult to count. They're also making no effort to do so, but it's it would be difficult to do because a lot of people like myself were never on paper. You know, I don't exist as far as COVID statistics go, and there's research stuff going on, but it tends to be only accessible to people with a positive test. I find it really frustrating, actually, because there are lots of people like me that have been ill since, you know, March, April last year, who have the most data to give, but we're not able to give it because none of us got positive test. You know, we're sort of sitting around here twiddling our thumbs, feeling awful, feeling, you know, like nobody's listening to us and we can't even be useful. We're just sort of muddling along, not knowing if what we're doing is making any difference for the better of. Worse, and you're still having to do everything for me. I mean, you've been amazing. It's

Malky  
all right. I don't mind doing things, you know, you've been really supportive.

Jackie Baxter  
But beyond that, you do anything beyond support me. Can you?

Malky  
Yeah, there's no real plan for what happens in the future. We have to keep going like this, whatever the hell this is, and hopes things get better at some point. But you can't even really put a time limit on that, because if you start thinking it will happen at the time, then it'll just be depressing when it doesn't, yeah, as

Jackie Baxter  
soon as you put a time limit on anything that, yeah, I mean, I I remember the first few times that I started to feel slightly better, and I thought, Oh, that's great. I'm getting better. Fantastic. And then, you know, a week or two weeks later, when I then crashed, it was just so awful that I decided that I was going to stop getting excited every time I felt better, which sounds a bit depressing, but it made it less awful when I then didn't get better. So I know I don't really, I'm not really expecting anything. Well, thank you so much milky for joining me on podcast this evening. I think it's maybe been quite therapeutic, certainly for me. Thank you so much to all of my guests and to you for listening. I hope you've enjoyed it, or at least found it useful. The Long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to, please go to buy me a coffee.com. Forward slash long COVID pod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast. It's available on all the usual podcast hosting things, and do get in touch. I'd love to hear from

Unknown Speaker  
you.

Transcribed by https://otter.ai