Long Covid in Adults

I think with any kind of post-viral situation because you’re using so much energy trying to heal, that you’re unaware that you’re using because you’re, you’re not aware of that, and the average person, average healthy person has no concept of how much energy they’re using to do the slightest task. So, like I mentioned I could only read for ten minutes. You know, that’s ridiculous to me, I used to read all day. And things like watching TV, I couldn’t concentrate on anything that was too complex. Like I couldn’t have watched a subtitled programme because that would be too much. I managed to drive myself to the shops to pick up the order, and I put the radio on because I used to always have music in the car, and it was like I couldn’t stand it, it was too much. But that’s the energy it takes to listen and drive, it uses so much energy, you just don’t realise how much brain energy you’re using. I was doing jigsaws and I was- I fell asleep on top of a jigsaw because I was so exhausted doing it after about twenty minutes [laughs]. And it’s like, because jigsaws are really hard on the brain, they’re really good as a, a thing to do, but they’re hard on the brain because of using different aspects. So, you think you’re pacing because you’re doing jigsaws and you’re not doing anything really, but you’re not, because that’s still using energy. So, to pace properly you need to have a very strict almost timetable of rests. So, it starts with, with me it was like I could do something for fifteen minutes and then I’d have a half hour rest, and that would be my day. If I didn’t do that I would have to sleep all afternoon. If I had a morning of doing something I would be in bed all afternoon. And that going to bed is not a choice that you make. It’s not I think I’ll go to bed this afternoon; it’s like if I don’t go to bed now I am going to fall down. Like I said, I fell asleep on my jigsaw. So, it’s, it’s just, bam! You’ve gone.

Today I got dressed up like this is because my, the support worker took effort to dress me up. They put effort to help me, say, “Okay. You do your bit, I do my bit. We do it together.” She helped me say, I washed my hair today, “Right, let’s do this together. I’ll put the blower on you, hairdryer on you, you do this part, while I do this part, okay.” “You use the power and you try to rub to take out the wetness while I do this part. All right, let’s, shall we change?” “All right, you try to do this and I try to do this with you.” “Right, how do you feel?” “What else do you, shall, what else do we need to do?” Than rather like, “okay, that’s it”. It’s being a positive enabler and that really makes you feel that you are not useless. You are an able bodied person. It’s more client centred rather than just doing what you want because you just want to finish the job. And that helps you make a shift in your mental and physical aspect and that’s important.

Yeah, if you wake up in the morning and you think I could literally roll over and go back to bed for another twelve hours. And I was trying, hours-wise, I was trying to get consistent, going to bed at a consistent time, trying to wake up at a consistent time, just no, improvement on the tiredness, the achiness, and that’s when kind of fatigue comes into it, that this isn’t just a week, this is multiple weeks of feeling this way.

So that’s, yeah, that’s been one of the hardest symptoms to kind of deal with. Previously active, previously playing rugby, going clay pigeon shooting, living a, a normal life, and now this is, this has probably been the one that’s impacted the most that makes life now, everything has to be planned. Everything has to be, right, where am I going to park? How close am I going to be to that? Will they have trolleys? I’m going to have to lean on something. Like how, previously I could just leave the house without a concern, now it’s like where am I going? Is it a sensible drive? Do I need somebody with me? Just everything becomes planned, which is quite hard to, to adjust to, I would say.

So that obviously takes all spontaneity out of life but that must be exhausting in terms of the planning as well?

Yeah, it’s constant planning, constant, and you just end up falling into ruts potentially, you know, okay, I can go to that shop, I can park nearby, they’ll have a trolley, right, we’re going there. It takes away that kind of, oh, what if we were going to get that from somewhere else? No, this is where we’re going because I know it will be okay.

And it takes away that kind of ability to, like you say, that spontaneous. I’m usually someone that’s very kind of go with the flow, oh, let’s do that, let’s do this, and certainly in the early stages when I wasn’t aware of how to manage the fatigue, that, it really kind of, it just sucked any energy out of it into kind of what do I have to do? That’s what’s going to get done. None of the nice stuff gets done. It’s the, what has to happen. Bills have to be paid, we have to eat, we have to cook, and it’s that kind of stripping back, okay, this is what I can do today, this is what I want to do but this is what I can do.

So, a couple of weeks ago, three weeks ago, I went to the, the first time in a year and a half, I've actually left home for work. I went to an all-day workshop. Very much on the understanding that, you know, from my employer, that if it became challenging, I could just leave. But I viewed it almost as a test, I wanted to see what I would be like. So, it started at eight thirty in the morning. By the time I got to about one o’clock, I was struggling really badly. By the time I got to, about four o’clock, I was of no use to man nor beast. Apparently, it finished about six o’clock, and then I left. I know that because I was told that subsequently, because I can’t remember. And I certainly couldn’t tell you what happened the day after that, that Friday, no idea. It was just, well, my first kind of conscious recollection, really is, waking up on the Saturday morning, having completely lost the day before. Apparently, all I did was, kind of, sleep, and doze, and rest. So, if I sum all of that up, as I say, I, kind of the lesson I've learned, or the mistake that I made at the start, was thinking that, you know, if I can manage four hours today, well I’ll push myself, and then maybe tomorrow, I can manage four hours and ten minutes, and I’ll push myself and maybe the day after I can manage four hours and twenty minutes. That was the absolute worst thing to do.

What works is, you know, I've been working for a period of time and I'm feeling tired – stop, you know, rest. And if I, if I've got a meeting at four o’clock in the afternoon, you know, I'll work, I’ll start work in the morning as usual, I’ll work to the point that I'm tired, I’ll go and lie down for a couple of hours, if I can get some sleep, all the better. And then I'll be, be able to function. Because, if I keep working through, a complete waste of time, me attending anything. So, it’s as I say, the absolute lesson that has worked is that don’t fight against it, because you're not only going to be, you know, kind of be useless today, you’ll be useless tomorrow and the day after, and maybe the day after, depending how far you push it. When you see the signs, ease off, rest, and kind of manage the energy levels that I've got.

But the fatigue lady, she said, “What you also need is positive rest” which is when you’re doing nothing, which is the hardest to do of all because if you lie down, and you’re like, I used to listen to an audio book or a meditation or whatever, but you’re still using, your brain’s still having to do something there, even if you’re feeling relaxed it’s still working. So, you have to have periods of time when you just lie down, and you don’t necessarily fall asleep, but you just lie down. So, they actually give you back your energy quicker if you can make yourself do it for like ten, fifteen minutes. It’s, it’s a long time to just lie there and not do anything. And you’re not trying to stop your thoughts, you’re not trying to be like meditation, it’s just lie down. I usually put an eye thing over my eyes and, if there’s noise, I’ll put earplugs in and just relax. And it just lets your system, and to be honest I usually do sort of fall asleep slightly because you are actually that tired, but you don’t know you’re that tired. So, as soon as I lie down, I generally I will fall asleep, which isn’t something I would have done before.

But that just shows you’re still tired, even if you feel okay, you think you feel okay, you’ve still got this level of exhaustion in you that you, you want to sleep all the time. So, the pacing is, it’s a really important thing to do and to get into the habit of doing quite early on. I think the sooner you can get into that and realise that you’re going to have to be slow and careful and not plan a day of busy things anymore, you’re going to have to have a little bit of time doing this and then rest, and then a little bit of time doing that, and then rest, and it, it, it sounds very boring but it’s actually how you start to see yourself heal. So, it’s very important.

And I do think a massive thing was about the childcare responsibilities and the inability to rest and recover. And I think that’s why we got ill longer, it’s probably why I was ill longer than my husband as well [laughs] because I just wasn’t able to rest in a way that my body was telling me it needed to, I couldn’t do it at all. So, both of our children still wake up in the night as well. So even at night-time our bodies weren’t getting that rest because we were up and down taking care of the kids. So, I do think that was a massive factor in our slow recovery, and the longevity of the symptoms, because we just didn’t give our bodies a chance to get better in a way that we would have done had we not had kids. Or had we had older kids that we could say, you know, just play on your PlayStation for two weeks we don’t care, just let mummy and daddy rest [laughs]. But you can’t do it with littlies.

Are there other factors you think that, that sort of slowed the pace of your recovery other than not being able to rest and looking after the kids?

I don’t think so, I think that’s a key thing for us actually. I probably needed to stop working but that was something, and my husband would get frustrated at me about it. In a loving way, you know what I mean. But then, you know, so I was doing bits of work while the kids were at school or the childminder. I was grateful though for having the school and the childminder while I was working because it actually gave me a break. So, because I was still suffering with symptoms, my working days I could be a bit quieter and a bit slower and I didn’t have to like do you know, be dashing everywhere and, being entertaining or anything like that. So, I think working possibly didn’t help but then by working I got access to childcare, which I do think helped me. So, it’s double edged.

So I need to do pacing, resting and be compassionate to my body. I only do three things a day to accomplish myself and, if I want to, one big task, not two. I will collapse. Like today, I did my personal care. I did a small talk with my, with my, [Name] my well-being coach for about half an hour because I knew I’m going to have a long hot day. My big task today is to talk to you longer. Another small task is to get my meal sorted and that is all in the Tupperware because I get ladies in the morning cut my vegetables and put it there. So that is important so that is what I do. 

And are you starting to sort of see, see signs of healing from implementing pacing? Or is it too early to, to say?

No, I would say the weeks I do the most wellbeing stuff, like I remember to do the meditation and I’m careful with my pacing and I really have nothing to drain me, I’ve had weeks where I’ve thought actually I am feeling fine, I feel fine. And then you’re sort of, oh but wait a minute, am I fine, because I don’t want to have a relapse. But it’s hard then to keep yourself back from just going oh I could walk the dog a bit further today or I could, I could cook a nice meal, because I can’t stand to cook too much. But then I’ve had a few times when I’ve done these things and then I’ve been back, like I say, I’ve had a relapse, I’ve had a bad week [laughs]. And then you’re not, you don’t come out of that relapse to where you were. So, that’s probably, the hard bit is keeping doing it when you feel better. It’s like I used to say to my clients, it’s like I gave them stretches for an injury and they would stop them when it stopped being sore, but that’s actually when you need to keep doing them most because that’s how you really feel it. And it’s the same with this is that you have to remember to keep up with the good stuff as much as you can, when you’re feeling better.

And I spoke to someone who had ME and they got better by doing this really careful pacing and all these good things over, over several, they took several years by the time they got to know about doing it. And I said, “How did you know you’re better?” because she’s better. And she said she just had a patch of time where she suddenly felt she had extra energy, she had more energy than she, you know, she needed. And she did a couple of things and she didn’t get ill again, so she was kind of like, okay, I can sort of tentatively start to go back to normal. But it’s that extra energy that you don’t have. So, even when I felt well on the weeks I’ve had a good week I wouldn’t say I’ve had extra energy; I’ve just started to feel like, I feel almost normal, I feel, you know. But you’re not really, but you have to just be tentative about getting back to it. But it does give you hope that you can get there. And that’s why it’s worth doing the work, because it’s a, it’s a job to have this kind of thing and do all the self-care. It is, it’s a full-time job some days [laughs].

And then how that now works is that I have a weekly check-in. I'll just get my diary up. I have a weekly check-in with my what they're calling a rehab specialist and we then, through that we talk about the last week, kind of mood, food, how things are, any pains, any different kind of things going on with yourself. And then that's one to one, it's about half an hour/forty minutes every week and then I have a live class that we deliver via Zoom, which class is kind of a loose term, so it's a group exercise that we do. And they started with really, really basic, so they were all kind of chair exercises. But then they split them into mobility, strength and cardio and I think the initial session was probably just stretching, like we stretched for forty minutes. Now we're moving it up so we're doing a variety of exercises and that changes on a cycle of every few weeks. We increased the intensity a little bit. So, it's…it's close to but isn't called yet a graded exercise therapy. But we are doing [inaudible], we are doing a structured team meeting of intensity of different motions. And that is done every single week. We also have a repeat of that every Wednesday, we have repeat of [audio distorted] YouTube link on Friday.

So, you were just saying that you'd had, that it was building towards a kind of structured, a gradated increase in physical activity. So, you were saying that every couple of weeks they're increasing the intensity of the stretching and the other exercises.

Yeah, so you're given, during the sessions you're given the exercise, you're given a regression, a progression, to allow you to take those options as you go through. The general trend is increasing the movements and increasing the intensity. So last rotation, so last week, we were doing a jog for thirty seconds. Up until then we'd only been doing kind of a marching walk, or kind of a sped-up march, kind of [inaudible]. Then there's this kind of progression slowly, but there's also regression and progression yourself around how you're feeling. Linked to that, if you do have any kind of stretching that you do additionally, your PT will give you those. So, with my lack activity, it's a muscle I haven't work out in a while, I now have to do some additional stretching around that. So, you've got that support in that way. You then repeat that session. So, we do those every Wednesday.

By Friday the YouTube link's been sent, so I can actually repeat that class that we did. Throughout that they're checking with you, how's everyone doing, heart rate okay, and stuff like that. It's a good structure to stick with. And then you do what's called your build your own workout, so you do your own workout as well, which incorporates some of the activities we did in the group session but doing them yourself what's particularly going to benefit you in what you're looking to achieve.

So, the first week of it I was kind of I was open to what's going on, open to ideas. So, feeling pretty groggy the first week, a lot of aches and pains. And slowly definitely kind of improving, there's not been any other changes, I would say, in what I'm doing other than doing this that I could attribute that to. I was able to do the first week, I think I could walk maybe a hundred metres, two hundred metres, and I was busy falling over. I was able to do I think we set a goal of five hundred metres without my heartrate spiking. I was actually able to do four times that, I was able to walk two kilometres without it spiking. So, I think having the structure of it is really helpful. And having that one-to-one connection with somebody and setting the goals that matter for you and how we're going to get to those.

So, I mean, I never actually, I probably should have mentioned this. Another example of something I've been referred to. So, live in [City in Scotland], and here, there is a, so it’s, it’s a targeted, six-month targeted exercise programme, it’s run by, the Council’s local led body through their gyms. But it requires medical referral to get there. So this is me going back to managing my GP. So, I kind of found out this thing, it’s called, [name of initiative], I found out it existed, CFS is one of the conditions that they look to support. So, I went to the gym, got the form, took it to my GP, and said, could you please fill this in for me. Took the referral form, went back, and got myself on that, about five weeks ago, now. And so, is that helping? It’s not, not helping, but it’s, you know. So, three times a week, I’ll go to the gym and do light exercise against a certain kind of, you know, CFS tailored programme for an hour. And the first time I did it, when I got home – this was early July – and, and to quote my wife, “I thought you were drunk”. And it was just, it was, it was an hour of very light exercise, it had completely wiped me out. You know, today, it’s only five weeks later, and I'm doing more exercise, you know, each time I go, than I did then, and I’ll get home and my legs might be a bit sore. So that is, as I say, it must be helping, because I can do more exercise, physical exercise, than I could five weeks ago, with nowhere near of the same impact, as a result.

Looking back, do you think there’s anything that sort of slowed rather than helped the recovery, that you know, that you might have done?

I think, I’m a walker, I’m a keen walker and what I did was I started to just walk a little bit. After a month and a half, was it a month and a half or two months, a month and a half, I think I started to walk a little bit more. So I was able to walk ten, fifteen minutes, and then twenty minutes, so I walked, tried to make a small walk every day. And then I tried to build it up, and I think you felt like rubbish after it, and you thought, oh, this is taking me back, but my gut instinct is that it’s actually helped me. Because like it’s like I’ve been able to then walk a wee bit more, like…

Okay, you’ve been able to build in time…

Build, build, yeah, but even though you weren’t sure if this is going to help or not, and it felt like it wasn’t going to help, because you would feel maybe really tired after it, or the kind of shaking would get stronger after it and stuff. And you thought, mm, this isn’t doing me good, but then it was next time you tried to go for a walk, you could maybe go a wee bit further. And then a wee bit further, so I feel like I’ve been able to build myself up. I don’t know if that would have been the same if I’d just been sitting about. So, for me I feel like that’s been a help.

Well, personally I feel like I’ve still got lingering symptoms where, I’ve got like kind of nerve issues throughout my body and stuff, and I’ve still got shortness of breath, so for me that’s concerning, especially because I like to be active, so I want to know if I’m functioning less, so I don’t know if this has, possibly like damaged me in some way. So, for me, I’d like to know, because I’m starting to walk a bit more now, is it okay for me to do that? Can they give me some sort of maybe like a lung test or something like that to make sure that there’s not, you know, or maybe even, I don’t know if this is me just being over-anxious now because I felt so bad, but [inaudible] if there’s maybe been heart inflammation or something. I’d like know that there’s not been anything damaged, really, so I feel like I should actually get a body check, to be honest, but I don’t think you can get that from the NHS, you’d probably need to pay for that private, but I actually feel like I need that, I feel like I want to know that I’m okay.

I suppose I touched on this already but I’m just thinking about what, what kinds of information is available for people about Long Covid? And how easy that is to access? Is there anything else that you wanted to say about that?

Yeah I think so there’s, there’s various things like British Heart Foundation maybe or some kind of lung charity, I forget. And then, Your Covid Recovery from the NHS so there is information there and you can tell it’s been written very clearly so it’s easy to understand when people aren’t feeling very well. The problem is though, for me, is that they lack detail and particularly when you’re trying to build up the exercise gradually. So I spent a while thinking, “Okay, we’ve got the, the whole increasing ten per cent each week of activity but is that only for a walk that you set out from your front door and you walk down the street? Or do you count incidental steps within the house? Or if you’re in the garden just pottering around, does that count?”

Normally, it wouldn’t make a bit of difference to most people but if you’re only walking about ten minutes it actually does because by the time you’ve wandered around and made your dinner then you might be at your ten minutes, kind of thing [laughs]. So, I think it would be really helpful to have clear guidance on that. And I think some of the guidance about pacing as well tells you quite a lot about the principles of how you might start with it but maybe to have more scenarios, more kind of complex scenarios, would be useful. Everybody’s circumstances are different but sometimes it’s quite hard to go from the principles to put it in practice.

It just is really, really constraining a lot of the time. You know, it’s quite difficult to adjust your life to that point. So, I think those things would be useful. Also, more guidance about, so I’ve got an Apple Watch with a heart rate monitor. And I’ve read that you can do pacing to keep your heart rate within a particular threshold, but I don’t feel confident about being able to do that. So it would be useful to have more advice on that kind of thing as well. Because I kind of feel that we’ve got quite a lot of technology which could be useful but what’s missing is knowing how to, or having some advice from a healthcare person about how to put it into practice and how to really use that tool as something which helps you.

So, I downloaded Headspace, not really thinking it would be great for me, to be honest, I was a bit of a cynic, I am a bit of a cynic, but started doing it, and what a difference. And I think it’s the breathing exercises, they’re really helpful to [stimulate] your vagus nerve.

Doing the breathing exercises, and, you know, the meditation with it, really, really made a huge difference. I've got out of the habit of doing that now, and I really must get back into it, because it really did help. When I could, I did gentle yoga. So, if you go on YouTube, there are lots of yoga videos for people with PoTS. So, you know, not, you don’t want to be doing the fast-paced, crazy stuff, but more of the, the gentle stretching, and breathing, is helpful. So, I found that good, as well.

What has been the biggest sort of challenges you’ve come across?

Getting clear information, because [coughs], it seems to be, I don’t know, it just seems like there’s so many different kinds of symptoms associated with [coughs], excuse me, Covid, so it’s hard to say, you know, like this symptom I’ve got just not, is that Covid related or is this something else? You know, there’s no sort of clear answers really to say, well, this is going to happen and then that’s going to happen. [coughs] And to expect that, you’re left kind of worried, thinking, oh, is this, this normal to be feeling like this, I need to find out if this is something that’s okay to feel like this if you’ve got or had Covid. So, I know that it’s okay, because it’s expected or has it damaged something, should this be investigated, I don’t know if this is normal, but there’s no real answers, really, for that, I’ve found, really.

At what point in time did you think to yourself, I think this is me, you know, the stories that other people are sharing about prolonged symptoms, and kind of how many weeks in, or months in, did you identify?

Hmm, that’s a good question. I think it was quite late, I think it was quite late. It was after I had seen the neurologist, so we’re probably talking about three months in, before I understood that other people were having the same thing, and that it was quite common. So those first few months were really difficult, because I couldn’t understand why I wasn’t getting better. You know, the Government had said, this illness will give you a bit of a cough for two weeks, you know, take two weeks off work, here’s your fourteen-day certificate. Then, there I was, you know, months down the line, with evolving symptoms, different systems affected, things that the news hadn’t spoken about, or the press conferences hadn’t spoken about. It was really confusing, and overwhelming, and worrying.

If somebody has looked at your lungs and they can tell they are not permanently damaged which is the case for me, so chest x-rays, everything, it’s all clear, it’s fine. There’s no fluid on there, you know, that’s all been checked, you know, once you’ve ruled out lung cancer, which is the slightly more terrifying kind of prospect, and then you have to think about, well, it’s damaged and affected me in a different way that nobody quite understands. And I mean, you know, I’m very aware of the importance of psychology in medicine, so, you know, I’m alive to the fact that some of this may be me things that would have happened to me anyway that I’m convincing myself are to do with Covid, that’s quite possible. But, you know, at the same time. So, for argument’s sake, I could have got late onset asthma anyway, but the fact really it kind of came seamlessly out of a set of chest problems that I had during Covid with no interruption to that, just slightly changing its form. It makes me believe that it is linked. So, it is tricky work because a lot of us who’ve been through it are traumatised by Covid, to a greater or lesser extent and so we may be attributing things that are nothing to do with it to it.

I think it’s difficult isn’t it because in terms of Covid I guess people’s responses when they get Covid and their recovery, seems so different doesn’t it. Everyone you talk to it’s so varied. So, I think it, it must be hard to have a clear idea of how to manage patients necessarily going forward. And I guess there was probably concerns about at that point particularly it was January, about NHS overload. So, they weren’t possibly that eager to get me in to, to assess me because they didn’t want me in there. So, this was obviously after I was my isolation period. They probably didn’t, they weren’t eager to get me in to assess me, but it probably just sounded like Long Covid, which it was. And I was probably quite like I need a signal, these are my symptoms, I need to just get on. So, I wasn’t really pushing for anything either because I was probably of the mindset where, you know, I just need to ride this storm.

So, I’m accepting of that, I didn’t really expect more. Maybe if I’d gone with a different, maybe if I was a bit more, sort of, hopeless and overwhelmed in the management of my symptoms, they might have responded to me differently in that initial phone consultation. I think I was quite accepting of I’ve just drawn a, a bad straw but I could have drawn a worse one.

I was going to ask you whether you had any idea about what might have made the difference?

No, and I think that’s one of the most annoying things is that you can spend a long time trying to guess what you did to try, like what you did to make the symptoms happen and or get worse. And actually, I think sometimes it’s random. Like, the virus does what the virus wants to do. And it’s obviously some that you use which are going to make worse because sometimes it’s just chance.

And how is it to be in that situation? What impact does it have on you?

I think it’s tiring in itself, it’s a long time to have had the same condition. I’ve found it really confusing as well. I think that’s one of the things, trying to understand what’s going on. And actually, already there’s quite a lot of seemingly contradictory advice and, you know, I’d be trying to read it and understand it and work out what it would mean for me. But then it maybe didn’t apply. And I think, you know I mentioned that I’ve been signed off work. That, I’d been avoiding that, like I didn’t think I needed that. I thought I was managing, I thought I could do the pacing thing. And when the doctor said that I should go off work, I was just so relieved because I didn’t have to keep trying every day to, to do my work and do all my things at home . But it was also hope because until he suggested that taking off time, taking time off work would help me to get better I didn’t have any particular reason to believe that I would get better. And kind of, some point I was just thinking, you know people get chronic fatigue and they maybe don’t recover to where they were, ever. Or maybe it takes a long time for them to get there. And I just didn’t really know whether I was going to be in that category or not. So, I suppose I was trying to, to accept it but actually I tried to accept it too early in the sense that the doctor reckons that I probably am going to get better with enough rest and so on. So that’s been a kind of rollercoaster that’s been confusing. And there’s been lots of healthcare people who, who’ve tried to help me who have been helpful but it’s just really confusing and frustrating.

Yeah, before getting unwell, I was really busy, I was working full time as a [job role], so forty hours a week. I had a social life, I would see people, I had interests, and hobbies. So, one of my, one of my main interests is plants, and gardening, absolutely love that. So, that would take up quite a bit of my time as well. I had, you know, I had basic interests like watching things on TV, and watching films, and reading, and drawing, and things like that. So, life was busy.

And how does that compare with life living with Long Covid, or Long Covid ongoing symptoms?

So, all of that, pretty much, went in the bin [laugh]. My hobbies, my interest, I couldn’t, I just felt so unwell. I certainly wasn’t able to do things like look after pot plants, and do gardening, so a lot of the plants died, or got given away. The garden grew wild for a year. Reading, I couldn’t do, I couldn’t concentrate, TV programmes, I would sit in front of, but it’s not being taken in. And it just felt like there was no joy to life. So, I could understand why people perhaps thought there was a stronger element of depression, because your interests, and your pleasure just go, when you're sick and not feeling well. Social interactions obviously became difficult because of lockdown, but also, they were just so mentally draining. There was a while, a period of a few weeks, I think, when I really struggled to have any conversation, it was difficult to follow the conversation, very difficult to take it in and digest it, and then formulate a response. And I had fairly marked word identification as well.

So, speaking to me was a little bit challenging, because I just couldn’t compute what people were saying, and the time, so the long delays before I would reply, and often, I just got the wrong end of the stick. And the socialising kind of went out the window, and work, of course, I couldn’t work. I tried to work through the first week, though, and then, I think I was pushing myself to do it, but words were jumping about on the screen. I was working from home, but I just couldn’t focus on anything, concentrate, and then the video, the flashing lights, the scintillation started. And I just, I stopped, around about a week in when I got really unwell.  So, not working was difficult because you miss the social contact, you miss, having a role, you miss having a purpose.

But also, I was really worried about the future, how was I going to have an income, what was I going to do with myself, what was I going to be able to do. So, all of those thoughts were going through my head, and I just felt like I needed to be back.

It took me a really long time before I accepted that I wasn’t well enough to work. I probably drove my managers mad, because I would email every couple of weeks and say, “Right, I think I'm getting better, I'll be back on Monday”, and then lo and behold, I would be ill again, you know. It was like a roller-coaster of symptoms, you know, these waves of feeling better, not feeling better. So, I accepted that I needed to be off. I was off for a really long time before I tried to go back to work, so about six months. Obviously, that didn’t work out, which was difficult, and then I had some more time off, and I'm trying again, and it’s going much better this time. So, I finally feel that I'm at a point now, fourteen months in, although I've got some symptoms, they’re mild enough that I can start doing some of these things. I feel like I've got the joy back, a bit.

I can, you know, I've started gardening, it’s tiring physically, but I'm doing that. I'm reading, listening to audiobooks, podcasts, watch TV. Seeing people which is fantastic, much more able to speak and hold a conversation, although it is tiring afterwards. So, I feel much more like myself, I feel I completely lost myself for about a year, and gradually over the past few months, things have been coming back. I'm pleased [laugh].

By allowing them slowly to go hand in hand to work with you, give them some level of accomplishment and view their self-esteem and moving forward. That is what we’re talking about and understanding, which is really important because now I could do a bit more than what I could do in April because I got the support. And I’ve been making people understand how to support me like in cooking, how to cut the vegetables, how to prepare my meals and telling social services what is the difference between putting a cold meal salad out or sandwich, to cutting the pak choi to carers? What’s the difference? In order for me to help with my meal prep because ready meals are all high, most of them, as you know, the sodium level is quite high and sugar content is not ideal, it’s Western food. But by eating a nutritious meal to help me, also allow me to lead a more meaningful life and that helps in recovery because when you have something to look forward to, you don’t feel like you are a prisoner in your own home and you have no control of your environment.

That is very important because I like dressing up. Dressing up make me feel better. Just putting on a simple dress than just stuck in a bathrobe all the time for weeks and weeks when my mum say, “You are the bathrobe queen.” I say, “Yes mum, sorry.” [laughs] It’s always the same colour. [laughs] So I mean these are things, simple things, even putting on a lipstick and lip gloss. I look pretty now. You know, it helps. I’m a girl, after all, you know. And it’s my, it’s my identify and that’s important and that’s why I said that I try to do thing with communication passport, helping them understand about my culture and don’t treat me like I’m a doll, you know. I’m not a doll. I’m a person.  Understanding how to make Chinese tea, you know. Many things in the way I like helps me and having a little control of my environment because that improve my mental health, communication, communicating with me and these are the three aspects and that’s very important for me, for person like me in chronic pain. It’s what I feel for me and because now putting things in more perspective, it helps me to see that there is hope. I have some control. I am not hopeless. I am not only a mere existence.

So, I would say honestly well from mid-February onwards it started to improve slowly, and it was like intermittent days of feeling good and bad. And I would say it was the end of March when I started to think “okay I’m feeling like me again”. So, yeah, the worst of it was really. So, there was that intense period when we had Covid and we were isolating, where we felt really rotten physically as well with the aches and the pains. But for me I think the worse period was that January to mid-February because it scared me and, and that. So, that was probably, actually the symptoms in the first period were probably worse because it was more intense. But it felt like a discreet period, and I was just waiting for it to end.

I think I still have days where I’m tired out of, inexplicably and I still have sometimes where I need to catch my breath a bit more. But I would say actually I’m better now and I’m out running about doing stuff with the children. I didn’t exercise at all until May because I didn’t, so that was, yes, so in May because I didn’t feel like I was able to have the sort of, lung capacity to exercise. So actually, even though I’m saying I’m better by March, actually I still don’t feel like I could do any exercise because I didn’t have that strength in my body, and I didn’t feel like I could breathe properly to do it.

So, I also put a lot of weight on in the beginning of the year as well because I wasn’t exercising. But now I’m at the point where I feel like I can exercise again, I’m running around with the kids, I’m able to juggle. I mean, as much as anyone can, able to juggle work and the kids, before I just couldn’t comprehend it all. But I’m definitely better, there’s just the odd lingering thing that’s, kind of, there. But, yeah, I definitely feel like we’ve come out the other end of it.

Do you want to just kind of reflect on where you feel you’re at, you know, at this point?

Yeah, certainly, so when I look back over kind of since June, July time, I was quite unwell at the time, really pretty unwell… the combination of the pain, the tiredness, the brain fog, just everything, there’s a lot of interactions, there’s a lot of kind of the pain prevents you sleeping, the sleep makes the brain fog worse, there’s so many kinds of interconnections. I think I’m at the point now where I feel kind of, I would say, I don’t want to be swayed by something, I read yesterday that talked about kind of how me having kind of structure can kind of have a really marked impact, I feel considerably better, I think I’m at kind of thirty or forty per cent of the way to being better. I think for me, I was very, very lucky that I didn’t get the, the chest infection side of the, the Long Covid symptoms. The only thing was the shortness of breath linked to kind of activity.

If I feel, like I said, a couple of days ago, I was able to do most of the day out of the house without having to be too rigid in my planning, and that’s, that’s the first time that’s happened in quite a while. So yeah, starting to, to at least feel like I can start making decisions that have a positive impact on what I’m doing, and could set me on a course to recovery.

That must feel like a major milestone.

It’s, I’m still pinching myself. I’m still thinking am I having a lucid dream that I’ve actually managed to get somewhere with it. It’s quite cathartic to finally get there, and you pinch yourself and you think, okay, as long as there’s no huge relapse miles out there, I feel like I am finally on a, a good trajectory to recover, which has taken, well, kind of twelve, thirteen months to get myself to that point. 

That’s fantastic to hear that you feel like that’s where you are.

It is, yeah. It’s taken its time but I am, yeah, I’m finally somewhere that I think, okay, I can, I can see the light at the end of the tunnel now. It’s not, at the early days it was very much a, we are down the coal chute, there is no light, there is no, this will be me forever.

Whereas now recently I’m like, okay, I managed to do that five hundred metres, I actually managed to do four times that. I can set reasonable smart goals with support to get this recovery on its, on its way, but I think it’s certainly been a learning experience for me to have to be so involved with that.

So, to begin, if I go back to the very early days of it, I would say that, you know, kind of physical exercise and mental, mental exercise were both on a par with regards to how they triggered it. Today, the physical, I need to do more physical activity to trigger it now, than I used to. But the level of mental activity requires the same. Basically, the physical side is getting better, the mental side isn’t, or not getting better perhaps, but improving. So, if I think back to kind of the dark days of December, so, from home into town is less than, into the centre of town, is less than half an hour’s walk. So in December, if I walked into town, I couldn’t have walked, I just couldn’t have walked back again. And even going for like a twenty minute, half hour walk, I'd have to, I'd be home and I'd be lying down, and you probably wouldn’t get me, out of a horizontal position for, for hours. 

And through, kind of November, December, January, there’s, we’ve got a couch downstairs, that has got a fantastic mark in the arm now, which is all the oils from my hair, because I just lived, pretty much, lying on, lying on that couch for large chunks of the day. And physically, you know, twenty minutes, half an hour’s physical exercise, that would wipe me out. Today, so for example, yesterday, I did, I had yesterday off work, went through to [City in Scotland]. So, half an hour’s walk to the train station, train into [City in Scotland] three hours walking around [City in Scotland], with lots of breaks, train home, walk home, I was tired, but not wiped out. Now, if I rewind a year and a half ago, that would have, I would have been neither up nor down with that, that would have had no impact on me at all. Whereas, when I got home, you know, I had to sit down, l had to, I had to rest, but I didn’t have to lie down and go to sleep. 

Whereas, on Friday, Friday was actually meant to be a day off as well, it was a colleague who was stuck with a project, so I jumped on to help them out. I started about eight o’clock in the morning, and by half past eleven, and it was quite intense, again there was a lot of thought involved, I had to, you know, figure out how all the moving parts would fit together. By half past eleven, I was done, I couldn’t keep going, so that was three and a half hours of that, that kind of, you know, lots of mental exercise, totally wiped me out. And that was me for, I was wiped out for most of the rest of the day. 

But, you know, it’s, kind of, you’ve got to try and, I don’t know, hope, hope it comes back as well. I mean, yeah, I don’t know. I don’t know what you can do really. There’s not a lot you can do at the minute, is there?

No, I mean, you talked about this recipe book. Is that something that has been developed by somebody who has had similar symptoms themselves?

Yeah, I’ve just, I'll [inaudible]. It’s sponsored actually by, obviously, it’s just something my wife got online and they, the first sort of few, few copies, and it’s just purely for long Covid, sort of, symptoms. So, it’s just got about ten, twelve, thirteen different recipes in it. Which is a, just seems to be quite good to try out, so, I've tried a couple of them out and they're quite nice. There’s a good, like a, they call it an ‘Any Salad Dressing’ so basically, it’s a nice vinegary salty salad dressing that you can stick on stuff and it gives it a nice hit. But the trouble is it’s all, none of it’s real. None of it’s getting, none of it’s getting your taste and smell back. And it’s, kind of, like, looking for little ways around it and things like that. And the underlying thing that sits in you is the fact that all this stuff isn't, I'm not getting my taste and smell back basically [laugh]. You know, it’s, kind of, you know, you can look for other things that spark you a little bit but, it’s just a bit depressing [laugh] I suppose that you, you don’t, sort of, there doesn’t seem to be anything you can do about it. You don’t know how long it’s going to last. You don’t know whether it’s going to come back. You don’t whether it, you know, if it’s going to come back in part of not or, or what really. So, it’s, sort of, almost, sort of, just waiting really.

And how’s that changed over the months? Did you feel like you were, sort of, anticipating every day, would it be back today, or…?

No, no, not, not really. I mean, I accepted that it was what it was and that’s what, that’s what it is until, until it changes basically. But always checking to see if it changes. but, yeah, it’s, not like a daily thing you wake up and go, oh I haven't got my sense of taste and smell. You, kind of, almost forget it because you’re not getting anything, any feedback in there. So after a while, it's just, there’s nothing making you go, oh I haven't got any sense of taste and smell, because it’s, you know, there’s no, sort of, spark in there. It’s not like you're smelling horrible things particularly or anything like that, so you kind of almost forget about it. And then go, oh gosh, yeah, I can't, and then when it comes down to something where you actually need to use it, you realise that it’s not there so much. But then I feel, I do feel like some days, I have, are better than others. So, I don’t feel like some days I can, it might be all the different food I'm cooking and stuff, but some days I feel like I can get it a bit more. And other days I feel like it’s just completely gone.

And it’s just, yeah, it’s a difficult one to have to, sort of, you don't know whether you have to, if I knew I was never going to get it back, then I, I would deal, or if I knew that I could probably get it back, that’ll be enough to get your head round it, I think, you know. You, if I know it’s never coming back, okay, you get your head round it and, you know, that’s, that’s the way it is, you, but if you, if you knew you were going to get it back, then again that, that would be nice. But it’s just the, kind of, this is what’s happened. You know, what’s going to happen now, you know, and what’s going to happen next week. Is it a, you know, it might, should I expect to have it come back, should, you know, is going to or not? And it’s, sort of, that, sort of, definition would be really nice. Because it could help you get on with it a bit more, if you know what I mean. 

So, living with the uncertainty of it all is a, an extra downside to it, is that what you’re saying? 

Yeah. Yeah. Because you can't, it’s harder to deal with what it is, if you know what I mean. Is it a temporary thing or is it a, yeah, is it going to be there forever. It, it’s, yeah. I mean, I’d rather it wasn’t there forever but if it is going to be there, there forever, I’d like to know. 

Very much, you know. It’d be like, right, okay, you know, if you’ve got, you’ve got, get on with it[laugh]. You know, you’ve got to try and work something out with this. Whereas if you know it’s coming back then it’s, kind of, well grin and bear it for a bit, you know, maybe or, or, you know, it’s not so bad. But, yeah, some, sort of like, indication would be good. 

If you compare yourself to before the pandemic, do you feel kind of, because for you being recovered is just still maybe going back to the same place where you started which still wasn’t great for you so.

Yeah. For me, I feel I’m in the same place that, like before corona where I am. More than that I’m down now because no smell, not no smell means I can hardly smell but not like, similar, you know the strong smell, I can’t [inaudible] or anything that and is affecting me a lot as well, my like when I talk a lot, it is affecting my talking everything and that’s like then feel tiredness. Still got the thing. It’s got similar but I feel like it’s gone bit more than yeah, anything interest not that much. I will do it. I will not said not do it but if not done, not feel that after okay, it’s gone it’s gone. So in my way I try to finish thing as early as possible, not wait for long so I feel that thing, so I feel it more tired, more everything, you know, more pain in the body. Still got the pain, you know, breathing and this pain. 

You’re in even more pain. It sounds like you had a lot of pain before. 
 
Yeah. It’s ongoing like more pain going on, more thing, more tiredness and like still not feel like you know, like what I can do enjoy before. Sometimes if I can’t, don’t do it, I don’t want to, sometimes, you know, want to take a jacket or sweater, I don’t want to take it as well, sit down but when I have to do something else I have to do it that time so like this.