Long Covid in Adults

Memory is the other side of it. I can be told something in one room and then I literally go into the other room, and I’m like ‘What was the answer to that?’ ... I can’t recall conversations very well and I often end up with a different answer to the other people in the conversation that we’ve agreed on. And that particularly for work is very challenging to manage. It makes you really question every memory you have, every answer you have. You think ‘Did I come up with that? Did someone else tell me that as the correct answer?’ It strips you of your ability to make a decision yourself, quite often.

And I’m very aware that there are some circumstances where I’m trying to play down my symptoms. So, for example it, it might be for a certain friend that I, I don’t want to worry about me or it might be at work where I want them to be confident that I’m still [laughing] able to do a good job. Despite my symptoms, in the restricted work that I am able to do. As I’ve said, it’s very restricted, but I am still working a little bit and, and when I do I want obviously to come across as professional and, you know, I don’t want people to think that my symptoms are stopping me doing a good job.

[I] went back in June. I was quite glad to go back, I still didn’t feel well, but I was glad to go back to get a bit of normality.  And to be honest, I probably shouldn’t have went back because I was still struggling, but like I said, I just wanted that wee bit of normality in my life, and a wee bit of……just like a regime back, if you know what I mean. Getting up…I think a lot of people have realised that work is sometimes a good thing [laugh], to go and take your mind off things, and try and…but I probably wasn’t ready. 

I thought to myself, ‘Well I might not ever get any better, maybe this is as well as I’m ever gonna get,’ and I felt bad being off. So, I said I’d go back on a two day a week phased return and be kind of part-time furloughed …But to do two days a week of my old output was taking me more than full time, including evenings and weekends and I wasn’t sleeping hardly at all. And, it was horrific, it was, I was, it was awful. I don’t even know how I, what possessed me to even think I could do it because I’d really hardly ever sat up for very long, and I was having, I remember that first week back I was having to have three naps in the day and stuff. So, all in all I don’t know what possessed me, I kind of scraped along for about nearly three months, and I was like, ‘What am I doing? There’s absolutely no way I’m gonna recover, and in fact I’m making myself worse’.

So, employment at that time I very much felt like I was trying my absolute best and I was trying my hardest and I was perhaps to the point of me pushing myself a little bit ‘cos I wanted to see a progression. I wanted to see my hours going up. I wanted to see me getting better. I wanted to see me getting back to work. But that wasn’t possible, and I think in November was when I was working my most hours. But I really did myself an injury in November. I overdid things and I had a bit of a crash and in the December, I had to really reduce my hours back to like 1, 1½ hours. 
 
I remember [the Christmas party on Teams] really being a struggle like, the feeling when I’m that level of strain feels like, you know, like at a village fetes and stuff, you’ve got the bungy cords on the big inflatable…you know, and you run and you see how far you can go and it’s like a competition and then it snapped and pulls you back. When I’m that level of strain, it feels like I’m absolutely at the limits of, of the kind of elastic tension like it's on the verge of just wanting to just like pull me right the way back. And remember then like even that thing of just being on a Teams calls for a couple of hours with …thirty odd people like it knocked me out for a week.

By this time I’d got inhalers and just tried to get on with it. Tried to build my life back but I couldn't do anything [...] nothing at all. I tried to go back to work on a phased return, I can’t remember something like two hours a day it was for the first week, building up slowly. On the second week I relapsed; started getting electric shock pains in my chest. Started to feel really unwell again and ended up at A&E hospital - July, August relapse. I was off work again till April 2021. Trying to go back to work. This time with the help of the Union, I returned to work was one hour, sorry two hours for the whole week but it doesn't matter what time you do it. So, your two hours can start at eight o'clock in the morning and finish at eight o'clock at night. First week was fine. Second week was fine. Crashed, again. So, my body was just saying ‘I can’t cope with this.’ And this is home working by the way. This is just going from one bedroom to another. Anyway, back to work. Didn't manage it. My nurse came one day and she says, “You’re gonna have to stop working.” She says, “You’re gonna have to stop. You, you, you’re damaging yourself because every time you get to a certain stage and you try to work, your body is fighting against it and you put, you’re making more damage and then you’re going back to where you were before.” So I ended up being off work again.

So when I first was diagnosed I had a chunk of time off work then occupational health said they advised I could return to work on a stagnated return and I went back and I lasted two weeks and then I had a relapse and that was a shock to my system and I now understand why it happened because my GP actually advised me to take two months off work and I thought this was ridiculous because I’ve never had two months off work even though I trust my GP and I sort of negotiated that, “Could I just have a month off?” and he said, “Well, okay” reluctantly but said, “you need to come back to me before you return to work.” And so, when I had my relapse, I understood that I should have listened to my GP and because obviously that two months was the exact time I needed. So, in my relapse I then had to take some more time off work. So, what this has enabled me to do is understand better what my needs are.

And at first, I was signed off for, I think it was six or eight weeks [and] then of course it comes to the end of the line, at eight weeks, and I was like, there’s no way I can go back. And this just kept rolling on. And every month, I would email in and say, ‘I'm hoping this is the last one, I’m hoping I’ll be back’. And this just went on and on for the full year, of hoping that at the end of that period of time, I would be well enough, and then just, every month feeling really disappointed that I'm just not going to be able to go back, again. And I think if there was a – maybe another thing that would be helpful – if the doctor had said at first, you need six months off your work and just doing that. Because I would feel the sort of, the pressure towards that phone call with the doctor of, ‘can I go back? I want to go back but am I able to go back?’ or is he going to say, ‘right I think it’s time for you to go back, I don’t want to give you a line’. Which is not realistic, but it was that sort of anxiety of, what’s he going to say, and am I going to have to go back to work next week. Or am I not going back, and if I'm going back, what am I going to be doing… And it was all just, it would be really helpful if the doctor had just said, ‘right, it looks like you’ve got this, and you need time to rest, you need six months off your work, and that’s it, just rest for six months, and then I’ll speak to you’. Rather than, every six or eight weeks, having to try and get an appointment, for one, and then have that conversation over and over again. And not necessarily, because it was telephone consultations, it wasn’t always with my doctor, so it would be speaking to all different people, having to go over it all again, and saying, ‘I'm not ready for work’, which was soul destroying, every six or eight weeks, the same conversation.
 
I can imagine. And it’s just the lead up to it, even, like knowing you need to make the appointment knowing that, who is it you're going to speak to, and all of that sort of stuff.
 
Yeah, and waiting all day as well, because it’s a telephone conversation, you have to wait all day, they can phone anytime. So that was the day that I had to not go to sleep. And it was just, all day, you’d be sort of tense for this conversation which wasn’t good.
 
No, no, like you say, just having the six months. And even if you had felt better within the six months, you’d have been delighted to get in touch with the doctor and say I think I'm okay.
 
Yeah, absolutely.
 
Yeah, that was, in hindsight, that would have just been…because I remember thinking that, in one of our conversations, thinking, if something had happened, whatever that illness would have been, they would have said a rough timescale, because they would know more about it, and be able to say, ‘maybe you should have X amount of time off’. But it was just,’ right, we’ll give you so many weeks, then get back in touch’, and ‘give you so many weeks, and get back in touch’, and the having to try and get the letter posted into work, and emailed in. It wasn’t nice, that was a really difficult part of it as well, actually, now that I think about it. That whole cycle. And by the time you sort of finished all of it, it was really only four weeks until you had to start it again.

I've never had any form of serious illness before. I have no chronic conditions, you know, I, I've always been a kind of relatively fit, and slightly overweight specimen. ... I enjoy challenges, I had a difficult job, which I enjoyed, and partly because it was difficult. I enjoy the challenges of managing teams, and having to engage in really complex projects, and figuring all this stuff out. I, It’s quite painful, only being able to do it in small bite-sized chunks, now. And really, so, you know, I recruited my replacements, I basically, I, the team that I'd built, I'd developed from scratch. I'd handed over to a chap who worked for me. And you know, it’s, you're giving your toys away [laugh].

I then attempted a return to work following consultation with the doctor at occupational health. Initially I was working a small amount of hours, so working kind of two hours a day, next week three, four, five. I then had a relapse, so a lot of my symptoms then came back, so I had to take some more time off work, and I have now since this year, so 2021 I’ve now returned to work again in consultation with the occupational health on a four hours per day basis. And I am still balancing that with managing a lot of my symptoms... But that’s the point where I know where I am able to manage my symptoms that I can do four hours of work, but that is very much the maximum amount I can do.

Just tired, just have this fatigue you can’t explain it. You just feel tired and sometimes getting starting the day or ending the day you’re just getting so tired and I’ve had instances where I’ve called my boss like, ’Oh please can I just start two hours later with work because I’m just so tired.’ And they were fine, you know, you know, she said, ‘It’s fine, you can start two hours later, but also I found out I have to do two hours later as well, finish two hours later and that start crushing with the evening chores and then you continue getting tireder and tireder because your day’s so prolonged with the rigid things to do because you can’t delay dinner time. You have to keep on working because you started late, you have to finish late so I’m just in that cycle of trying to find the best way to manage it and you know, it’s very difficult, you can’t say, ‘I’m sick, sick, like I’m off sick,’ per se but you just want people to understand like you are on a very reduced capacity kind of thing.

So, I'm still on very reduced hours, probably about half my full-time hours. But what I've found is, when I'm working, the cognitive side of things is quite difficult, and really tiring. And when I've finished for the morning, the afternoons are spent recovering from that. So, I don’t, I don’t really, I don’t do anything for the rest of the day, because I'm having to get past that cognitive fatigue. And it can accumulate, as well, so by the time I get to the end of the week, I'm feeling much more tired than I was at the start, having worked one morning. 

I pay for it afterwards. So, I'm still not completely out of the woods, unfortunately, a lot of things have got better, but in terms of interests, doing things, seeing people, I'm still a bit hit or miss, and I often just don’t have the energy to do it, if I've been working.

So, I’m not quite sure what I’m going to be able to do, and for how long or…because this is all the unknown, and that…that’s the one frustrating thing with this condition, while you understand it, there’s…there’s no answers. And there’s no policies that fit it [laughs].
 
Could you say a little bit more about that, about just exactly what…why the existing system doesn’t work for…for conditions like Long Covid?
 
Yeah, a lot of the…the conditions are for long term conditions, but because Covid’s so new, nobody knows the outcomes of every…every individual journey [and] like I say, I’ve never been off work, I’ve never had to have HR meetings and things like that, and when I first got asked to do one, I think I’ve done three or four now, oh, I was really, really worried…because I just thought, I’ve never been to a meeting where I’ve had HR, two managers and then, ‘do you want a…you know, your representative?’ and…so I did, but it was fine, and it was all to do with supporting me. However, I find them frustrating, because nobody can actually offer support, because nobody actually knows, and I’ve gone with questions, and it’s usually, ‘no, don’t know anything about that’, and it’s me that’s had to go and find out things.
 
What kind of questions?
 
Well, one was the phased return situation. I asked about that early on and I was told it would be a four-week thing, because you need to know. I know that’s the normal for other conditions, but this is an unknown condition.

My employer was very supportive. There was no pressure on me at all. The only pressure really was that what I put on myself. I’m lucky, there’s only one person more senior than me in the organisation and, as it happened, he got Covid about two weeks after I did so he was more than sympathetic because he really struggled with it too. I couldn’t have asked for a more supportive response, really, from work. The only pressure really was self-imposed on going back that…that I felt bad, that I wanted to be there, and I wanted, you know… But I did…I did take it easy at first. I did properly do a phased return, so …on the days that I wasn’t in work I didn’t work which wouldn’t always be the case before then. So yeah, that…that worked okay for me. I hope anybody who had Covid in my organisation had the same experience but, you know there’s no doubt that I had a good one.

Was the phased return…was that your idea or was that something suggested by HR or occupational health?

So, it was…it was suggested to me and I think generally in my organisation that’s the approach we took with people. We suggested that, you know…I mean, obviously it affected everybody in different ways and depending how severely you’d had it [Covid] but as I’d had three weeks off anyway, as part of our HR process, there would always be a conversation about whether a phased return was necessary or desirable.

I must say the work has been very, very supportive, you know, my I can speak for my own department, honestly they’ve been very, very supportive, you know, the [most senior line manager] has been always, you know, sending messages every weekend, end of the week like, ‘oh just go and enjoy, just chill out, just have fun, if you can do what you can do if you cannot do it, don’t kill yourself. It is okay.’ So that assurance and I hope all employers do that to their, you know, to their work, to their employees because the last thing you need to survive an external pressures of, ‘This must be done now, this must be done now!’ you know.

So, I saw a neuropsychologist, who’s fantastic, really good, She did cognitive testing with me, but she also started doing, in essence, I think, a bit of CBT, really, around, cognition, and rehab, getting back to work. Because that was my goal. So, she really gave me the tools to help me see that these thoughts are not helpful, cut myself some slack. I, It will happen when it happens. I think that stopped me from getting depressed again, worry about work, really. I've been back for, I think, seven weeks now, but on a phased return.

So, it’s, I think most people now have an appreciation of Long Covid exists and what it is but there is still a complete lack of understanding or, you know, from the management I guess, and colleagues and I mean it’s the hidden disability thing, completely. You know, and the fact that you, I don’t look like I need support or help. But even sitting, you know, if I’m waiting in the chemist, for instance, I might sit down. And then think, but there’s an older person there, I should maybe be giving her my seat? [laughs] Or him my seat. And it’s, you know, it’s, you don’t want a big flag but also, it’s, well, it’s given me a far better appreciation and understanding for anybody who has hidden things.

And even my HR meetings, when I talked about this [symptom] diary and sending it, they didn’t want to know, they said, no, it’s fine, we don’t need to see it, that’s for your benefit, and I said, actually, I think moving forward, it’s bound to help HR with other…because I said, I’m not going to be the only one you’re dealing with, and in the future, I think it is a good awareness for you, and I did say to the managers, you know, I’d quite like to send it because it stops me having to explain how I’m feeling all the time, if you can just see a visual. [um], so I did send it, eventually they did say, okay, just send it, so I felt…I was annoyed at that. Because I know it’s for me, but it was also to…to…because they do need to be more aware, and they actually on my last call, she did say it actually was such a good insight as to what my daily life is. Seeing it in black and white. And she said it was so helpful, she said, it’s a lot of work, she said, but don’t feel you have to do it, and I thought, well, I’m not doing it for you, I’m doing it for me anyway. But they did appreciate it, and they do have a better understanding now, so…

[My employer said] ‘You go and look at what job is available that you like on [inaudible] website ... and if you can’t fulfil those jobs, I’m sorry, that’s all we have for you.” So that’s really not like really much to talk about, isn’t it, because that’s basically it. So, they’re protecting themselves. They say, “Oh we have this, we’re giving you the choices [and] since you can’t find anything suitable, we are letting you go.’ So that that’s the way it is. Unfortunately, I believe a lot of other people in my situation were faced some [inaudible] as well. I believe I’m not the only one, it’s easier to [inaudible] than, basically, to face the reality that more and more people are going to have this, yeah. And, basically, they put it in a way that, ‘We gave it to you but you didn’t find anything suitable so that’s it.

So, legally, they are not wrong but ethically, if you look at it of a person contributing to service in your company for over two years, picking up extra hours when you need it and helping out and that’s where I told you about the feeling of abandonment come in over the seven stages of grief that you actually felt that let down and why me and all those things again. The grief of losing my self-identity as a contributing member of the of the community and at the same time, feeling like I’m abandoned. T… It’s sad but there’s no point fighting because I’m just so ill, I’m just sick and tired. I just want to just get well. Put myself first, put myself first, and [instead of] trying to reason with people which are unreasonable. And choosing, it’s not, it’s not worry, some battle, you’ve got to choose the correct battle. And this is one I’m not going to battle with because there’s no point.

I remember crying to my line manager in mid to late January because I said about muddling words up and not being able to think and stuff. I remember really crying and being frightened. I was like ‘I’m worried I can’t do my job, I’m worried this is my career over because I can’t do it, I can’t think. I don’t have the function’ and I was scared, I was really scared because my career matters to me... I’ve worked hard at it. I have worked part time with having children and stuff but it still matters to me and it’s still something that’s important. So, I was scared you know, you hear so many stories about people’s cognitive functioning never returning and it frightened me. So that was almost worse to deal with because it was this Groundhog Day of constant symptoms, constant debilitating pain and pressure and the inability to think and tiredness and breathlessness.

I’m suffering tremendously mentally, tremendously because I’m not working, I feel like a failure and every time I think about going back to work, I can’t even imagine myself going back to what I was doing ever, there’s no way … [My GP said] “when you do go back to work, you’re not going back in the same capacity.” I had such expectations, I can’t hear that still I have to come to terms with that still, I have to work my brain around that. It hurts me every time I talk about and think about it so I don’t at the moment [sighs].

I was told I was being made redundant. And I still think the company did the most that they could have to sort of support me in that way. But it was still a shock. And it was still, I guess I wasn’t in a place to really work. And it was a shock to then be unemployed …and I was suddenly a big part of my identity. A big part of my life. A substantial part of my earning capacity all gone overnight. And that was really hard. I took it very badly. On the call where my boss was telling this, I was just crying. I was just in tears because it, it felt like such a solid and …an unmoving and permanent loss because of the illness. And, up to that point, a lot of the things that I felt like I had lost felt temporary or that I could recover I could get back and that, it was just gone. And, you know, there were very, you know, I still think my colleagues were incredibly nice about it, you know, my former boss like, I understand their position. I don’t think that I, there was very much else that I could’ve done because me stopping work was a good stage in my recovery. And being able to do less helped me do more rather than me just trying to like muddle through […] And, I wasn’t in any rush to get a new one. I kind of understood that I would have to be unemployed for a bit. I’d have to just be sick for a bit.