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.

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 my hobbies, my interest, I couldn’t, I just felt so unwell [laugh]. 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, 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 visual, 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.

So, I was very…got quite high energy anyway, like I’m not somebody that kind of just sits about, that kind of thing, so when I took ill, that…that impacted that, I had to postpone one of my exams for my studying. It affected the amount of studying that I could do, it just happened to be the time where I would be starting the revision for my exams…so that’s really impacted that and stuff. I don’t know if I’ll, you know, if I would really have been able to do it to the standard that I would have been able to do, so I’ve had to put in special circumstances to my university. And so, say and declare as well, I’ve got a disability, through that, process. I was really active as well, so I was doing a lot of activities, in my free time, like hill walking. I was also, doing maybe running three times a week and also just do exercises daily, it was just something I like to do, keep healthy, and it impacted that because I’m not able to do that anymore.

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.

I think I am definitely trying to protect them a bit. I also try to be honest. I think it’s harder, you know, although they are teenagers my children, I think it’s still really hard for them to understand because it’s hard for me to understand, you know. Previously with illnesses, you know, when you have a stomach bug or even the flu actually or something like that generally once you start feeling better than the next day’s better and the next day’s better, isn’t it. So, progress does tend to be linear with most of the other things that they’ve experienced. And I suppose with this not being, I think that’s really hard for them to cope with; you know, the fact that one day I can play table tennis with them and have a good time and then the next day I have to say no, I really can’t. I don’t like seeing the disappointment in their faces when I have to say no. So, I try to protect them from that a bit. But yeah, it’s…I do better at that some days than others.

So how’s your day-to-day family life different at the moment?
 
It’s not how we ever wanted it to be. I mean, our hopes and dreams are pretty much shattered, that would be how I would start by saying. I think we dreamed of travelling the world, and I know Covid has stopped that for everybody, but, you know, I... I dreamt of Vinnie learning to surf before he could walk kind of thing, and, you know, he loves swimming, he loves...he loves sport, he loves the water, he loves music, and we love art galleries, and we love history and we love...you know, that kind of stuff and we love learning about the world in the world. So to be cooped up in four walls is, kind of like, the worst nightmare for us.
 
It’s... it is tough, you know, we’ve been through some really, really difficult times and it’s been probably the hardest time of my life ever. Covid has literally rocked our world and I... you know, I say that I will recover but I don’t actually know if I will if I’m honest with you. My legs...every day I hope my legs will get better, but then I...I can’t walk to the car and I—I think, ‘Jesus, will... will my legs get better?’. And then I stumble for a word and I think ‘God, I thought I was over this’. So...

Or social interactions, you know, things that you would normally do every day, and take for granted, and not regard them as putting any kind of demands on your energy systems. Just talking on the phone, talking to you now, all of these things, have a, an astonishing, ability, or capacity to just drain you. And, and it takes, and for me, one of the difficulties, it takes a long time to get your head around this, because you think, “Well I'm not ill,” and people say how well I look, and, and you know. And I can, for sort of short interactions, I can, you know, smile, and, and sort of be the relatively normal me. Or that’s how you come across to people, who see you. But actually, then, at the end of a ten- or fifteen-minute interaction, you're absolutely exhausted. And you think, “goodness, what’s happened here.” And it takes a long time to get to, to, to realise that you're not fooling yourself. You know, you know, it’s very odd.
 
Yeah, it sounds, just even, like you say, the amount of effort just to be your normal self, sounds exhausting.
 
It’s an effort. Yeah, it’s an effort, and that’s right. So, and, and, and coming to terms with what’s happening is, is, is very strange. Because normally most people are unwell, and they, they, you know, you, you rest, and you start recovering, and you start doing more things, and you push yourself a little bit. And, and that all works fine. But it doesn’t work in this case.

And now I feel I was just so vulnerable and I was just so, all of a sudden I felt, god, it’s like I’m not, I’ve not been known to be an ill person, but that’s how I feel, I constantly feel ill. I think then when I had my booster in September if I remember correctly oh dear lord, it only got worse. It got worse. And then come winter-time which is generally a time where people might get depressed in winter anyway. It was awful. I would, I wouldn't get out of bed. I would just about greet my kids. Give them their food. Come back up.
 
My husband was doing all of, you know, trying to watch the kids and to kind of run the house. And I normally go and see my parents at least once a month or what have you, you know, outside of Covid restrictions anyway. And they were like, “Come on, Ada, you’re always on it. You’re always meeting up and you know, we want to hear.” It was just, “No, no, don’t answer calls. Don’t want to speak to anyone. I don’t want to, I don’t want to talk.” It just felt like a place where I’m like, I don’t understand what this is.

Exactly yeah, yeah. And I, I think another thing that’s quite, quite tricky is people – you know, as I said, I’ve got some brilliant friends and family and great support – but still not feeling like…I’m hearing so many people saying, you know, you’re the least person that we thought would, would suffer from this. And, you know, you’re such a, you know, always such an active person and a busy person. And it feels quite like I suppose I feel like I shouldn’t, I shouldn’t be the one suffering. And I feel like yeah, what, what am I doing wrong, like why, why is it, why am I still struggling. Maybe I’m not doing things right. And yeah, it’s quite hard finding that when I see friends, I find that I’m sort of…I feel like I’m moaning a lot, whereas previously I was quite an optimistic positive person.
 
I don’t really want to be someone that, that moans [laughs]. But equally I want to be honest. So, yeah trying to be honest and open. But, but it…I wish I wasn’t having to yeah…talk about this stuff so much. And yeah, just like the progress is, you know, as I’ve mentioned, not linear so, you know, emotionally it’s hard, that you sort of think oh that’s great, I’ve had a better day.
 

And do you think you have learned then quite subtle cues from your body? Like, what would you say are the very earliest signs that you’ve now learned, right, this is a sign I'm getting tired?
 
A sort of, lack of concentration sets in… sometimes dizziness. You know, my…you…you…I feel dizzy and I just, need to sit down or stand still or rest against the wall or something like that.…, it’s usually… it’s a combination of, sort of, both mental and physical cues that can tell you. But really you know, when you’ve got to that stage you’ve gone too far. You have to stop before you get there [laugh].
 
And that’s…that I still find very hard to do.
 
Yeah. It’s almost like you get no warning until it’s the actual tiredness, then it’s very hard to know when before that sets in, so…
 
Yeah. And if I can just follow up on that, this is …I mean, this has implications for the rest of your health of course because it means that you can't get out and do the normal amount of exercise that you would do., this doesn’t necessarily mean running ten miles but, you know, even just cleaning the house or hoovering or, you know, doing the washing or the washing up or the pottering around in a garden.
 
You know, all of those things. And particularly…I mean, particularly things like doing things in the house where you’re, kind of, moving around all the time. You generally move quite quickly, and you bend over and your turn around and you do this…those sudd…well not even sudden movements but the kind of things that you norm… just take for granted turning round, bending over, doing that quite quickly, all of a sudden you just have to catch yourself before you fall over.
 
And I was going to ask, do you think there’s any level of anxiety? Do you feel, kind of, anxious about things?
 
Well, that…
 
…in terms of balance and…?
 
…that then…yeah, that then starts to build in because, you know, you have incidents when, you think, I can't do this, I mustn’t do this because I'm feeling dizzy or tired or I’ve got headaches. Then the next time you think, well…mm, should I do this, or shouldn’t I do it?
 
So, this, kind of, anxiety then does, kind of, build in. So, and it becomes difficult to know when you should or shouldn’t do things sometimes. And you…because you’ve been told to and because experience tells you, you err on the side of caution. And I don’t know…yeah, that’s just what happens. So, you, sort of, develop, kind of, this anxiety…kind of, almost does build up over, kind of, weeks and months I would say. Yeah.

After my first hip replacement I’d managed to do hill-walking as a way of exercising it and started to do that after my second hip replacement. It’s been really difficult to do since I had Covid, and yeah, all sorts of things contributing to that, but walking on, you know, uneven surfaces and I have a bit of a fear if I’m on my own of being on my own and not being able to get help if I need it. So, it’s affected my confidence about hill walking. I found I was trying to work this out, thinking about this interview actually, I probably haven’t…I’m living in [place name] and I…I would always go [place name] two to three times a week for two or three-hour walks. I haven’t done that or only done it very rarely and with other people. I feel less confident about doing it on my own now. And I really hope that I can overcome that and get…you know, it’s good for my mental health and good for my physical health through exercise like that. So, I do try and focus on walking so I, you know, try and do ten thousand steps a day, probably averaging about eight, eight and a half thousand at the moment. I don’t do as well as I should, but just make sure that I, you know, go and walk round the park and…but I’ve got less adventurous about where I’ll go walking and fearful of it.

And what about in terms of the lung and the kind of asthma type symptoms how do they impact you day to day?

Funnily enough, I mean, it doesn’t…interestingly, I don’t worry about that, I mean, there have been occasions where I’ve been short of breath when I’ve been climbing hills but, you know, going uphill weirdly the…I’ve just recently started going back to the theatre to see…music and theatre and so on, and I feel incredibly self-conscious about coughing [laughs]…and whether it’s because you just think everyone’s going to think he’s got Covid, what’s he doing here, you know? So that… and of course if ever you try and suppress a cough, it, like, makes you want to cough…So I’ve…I have felt, you know, just talking about it now, it’s making me want to cough. You know, that awful feeling of being in a crowded place with other people, most of whom are not wearing masks and thinking I don’t want to be that person who coughs, you know? Everyone’s going to look daggers at me and think I’m some super-spreader, you know? So, it’s…that’s interesting, it’s…you know, I have enjoyed my visits to the theatre but that’s definitely a feature of them.

But even when I…when I have someone come in the house and there’s like a photo of me on a canvas that we’ve got and like, I think the words were like, oh bloody hell, how long ago was that? And I was like, two years. And, oh, blimey. That was the general reaction. And I know that wasn’t meant insensitively, I’m sure he didn’t really think, probably but actually I was really aware. I thought, well it’s not a positive change I know that much [laughs]. And, you know, it does make me feel less confident, I can’t be bothered to make an effort.
 
Like, my partner said to me, oh we’ll go…if you want to go out, you know, next week I’ll have the kids and if you want to…because we’ve moved there’s a couple of ladies who live in the houses next door of a similar sort of age and we were like, will we just get together and go and have some…something to eat and drink or something. And part of that fills me with dread, because the thought of leaving my house any time after like seven, I can think of nothing worse, I just want to be snuggled up and doing nothing at seven o’clock. So, half of that fills me with dread – which is really unlike me because personality typing is extrovert – and you know, true to that form, I am quite extrovert and I love going out. And I love chatting and…and doing things. But I don’t want to do that, I can think of nothing worse.
 
The thought of having to go out and find something to wear when I feel not like myself, or I feel bad, and then having to sort out my hair. And the hair’s just the icing on the cake because it’s just different. And that feels really…it feel…it doesn’t…I don’t feel like it sits well with my values to feel so fickle. But at the same time, I never thought it would affect me like that.
 
Yeah. Thank you so much for…Thank you so much for sharing that.
 
Oh, that’s okay. I feel guilty because my mum, bless her, I remember when she had chemo, her hair…she was so brave. And I think my God, I haven’t had all of that and I feel just as like…I feel traumatised by not having the same hair I had and without a valid…without a valid excuse, if that makes sense? I feel like it’s less valid. And it is, you know, to me, less valid. I’m not going through something awful and yes, I’m tired every day but actually impacts, you know, psychologically, I think on your wellbeing, if you look different, It’s change, isn’t it? Hard to get used to.
 
Yeah, I can relate really to what you were saying and I think lots and lots of people would be able to strongly relate to what you were saying too about how important these things are to many of us in terms of our identity.
 
Yeah
 
What we see when we look in the mirror.
 
It’s about your feeling of self, isn’t it? 
 
Yeah.
 
And I think for me, it made me feel more feminine. Like, and it made me feel more youthful and I’ve never been true to my age, I don’t think. And all of a sudden, I feel like oh my God, I’m literally my age or older and I feel even older than that [laughs].
 

Like last summer when people were a bit more free, I wasn’t well enough to go anywhere so I wasn’t doing anything. So, I think that’s when it kind of hits more is when other people are going out and arranging lunches or something, I think that’s when it’ll be harder if I don’t feel well enough to go.

You know, this…this…this person who doesn’t…who doesn’t even want to speak to the kids on the street because he thinks they’re going to kill him, you know, by giving…by giving him the cold and…and that obviously…I just…I just must look very strange, I think. You know, as I…as I cross the road to avoid people and…and, you know, there’s a little path that goes on to, like, a bigger path where there’s fields round it and that. And I obviously have…the…it’s, kind of, a bit congested to start with so I…I just avoid that. You know, I stand and I wait until people…if there’s somebody coming up, I wait until they come down and, you know, they say good morning and I'm not…I'm not really interested, I just want to…just want to get going. So, I’ve, kind of…I’ll…you know…yeah, I must look like a strange, kind of, recluse, I think, which I…which effects how I think I'm viewed.
 
So, I’ve…I’ve just become this, kind of…not me. You know, it’s really…it’s really made me not me. And, …so the…yeah, that’s the, sort of, medical, sort of, passageway that this… and where I feel.
 
But I went up to [City] the other day to have a face-to-face meeting and that was the first…again the first time that I’d been on a train, you know, and…and a bus or that kind of thing and gone in to the middle of [City] to meet somebody in the past…you know, the past two years. That’s the first time that I’ve…I would have to do that.
 
And it was…it was scary for me. But at the end of it, I did feel quite good, you know, because I…because I managed to do it, you know, particularly the train. You know, I gauged…I gauged the train. And what happened was, it was after the storm…you know, the storm that we just had. So, a lot of…on the way back a lot of trains were cancelled. So, I then had to get a bus, you know, had to change my plan, get a bus to go to the…where I’d left the car. And, so that was quite…you know, quite an achievement for me, but just as I say that now, you know, when I think about, that shouldn’t be quite an achievement for me. You know, that should just be an everyday, you know, an everyday occurrence that I would be able to cope with that.
 
But, you know, I found…I did find myself panicking getting the bus. The bus was obviously more crowded. And, I had to deal with roadworks in [City], so the… where the bus stop wasn’t where it usually was because it was on the [area], so I had to walk away up the [area], you know, to get the temporary bus. And again it’s, sort of, stuff that I would…you know, normally wouldn’t faze but it…I was really agitated, you know, by the time I got home. So, that was…that was quite a strange feeling. You know, that bit of pride that I’d managed to do it but yet, you know, another reminder of what I wasn’t again, sort of thing. So it was, quite a…aye, you know, very…very good and very bad in the same kind of breath, sort of stuff.

And it’s hard for the kids to understand. I do feel for the kids, because they have things like, can we have friends over – yes, but you have to stay outside. But they're allowed to go into other people’s houses, but they're not allowed to come in our house. We do have the excuse of, Dad’s working from home, so obviously if Dad is working, you have to stay outside. But it’s just that risk factor. And if they're going round to a friend’s house, well I don’t really want to let them go to someone else’s house, and no harm to them, I mean, they're in the class with them, all day. And it’s just, it’s trying to make sense of what’s the right thing to do for them. But it’s hard. Can I have a sleepover – no, you can’t have a sleepover. Can we go to soft play – no, you can’t go to soft play. It’s just, there seems to be a line for us of what’s risk that we will take, and what’s risk that we won’t take. But the kids find it hard to understand.

And how much of a change is that for you, would you have said, before COVID, were you kind of a risk averse sort of person, or…?

No, no, not at all, no.

…is this something new?

Oh yeah, this is completely new. No, we just did everything, I always sort of encouraged my kids to take risks, climb trees, try and swim in the sea, go and try and swim in the sea, it’ll be fine, and if it’s not fine, you know, we’ll find a way out of it. Very much tried to encourage them to do things on their own, and yeah, I'm not a risk averse sort of person, at all. Yeah.

So it must be hard to be going through that change, it must be quite, almost like a conflict, in a way, to kind of always be trying to work that out.

Yeah, because the automatic first answer to everything is, no, we can’t do that. And then you have to rationalise it, well is it, how much of a risk is it, will we do it, are we willing to take that risk, is it worth that risk. It’s exhausting, and it’s with everything all the time. My son, my youngest son needed new plimsoles for school, so on Saturday, come on, we'd better go and get them, and we arrived at the [shopping centre], and it was so busy. And I'm sitting in the car going, am I going to get out of the car – yes he needs plimsoles. Do I want to get out of the car – absolutely, I do not want to go in amongst all those people, because they're not wearing masks. And even when you get out of the car, and, oh mum, it’s really busy, and I'm saying, yeah, but we need to go and get your plimsoles, and we need to go quickly, and we’re going to keep our masks on outside, and we’re going to rush into this shop, and then rush back home again. It is exhausting.

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].

And so, yeah, like even external events that cause any sort of anxiety or stress in my mind can then trigger my body and then it, and then it can be vice versa and sometimes when I, if I’m walking somewhere and again, I always try to take it really slow and really easy. But there are some days when I’m trying to do that and I just feel, you know, if I can feel it start to, I suddenly start to get more exhausted. And then I think, ‘Oh God, I need to lie down.’ And at that point, I kind of, it almost starts to set off some of the breathing and then that then makes me mentally a bit stressed. It’s so hard to know sometimes where the boundary is between mental anxiety and stress and then the physical stress. It seems like either of them set each other off.
 
So, it’s honestly the most weird, weird, bizarre illness I’ve ever had. Well, I’ve never really had a proper illness like Covid. It’s such a bizarre beast.
 
On many days, I feel like I’m almost normal like or close to normal. But I still know that I can’t go further than, I can’t, I still just very conscious to not push myself. You can sit talking to your friends and feel almost completely normal and feel switched on. It’s just so bizarre going from being like that to not wanting to talk at all and not being able to move. So, yeah, it’s quite a lot to put your head around. I guess I’m just trying to feel that by keeping a positive enough mindset. I still think it’s important to go see your friends, I don’t go out to like big places or I’m try and see them in the house or go for a short walk.
 
I make sure that I, I know often when I wake up if it’s gonna be a not so good day like yesterday and Sunday, I knew would not be good days, I just felt quite tired. I am trying to be at the mercy of my body. Always try and be somewhere where I’m capable of lying down, where if I do start to feel tired, I can just give in. I’ve slowly been, most of my days I’ve been doing that like always. Monday was the first time that I would say I’ve pushed myself a tiny bit. I went to go, I haven’t been to a football game in ages, I wanted to go and watch Arsenal. I just wanted to for all sorts of reasons because I haven’t been for a long time and I miss it, and I just wanted something that would be a lift for my mental wellbeing and mood.
 
I also just wanted to prove almost like I just wanted—there was an element of wanting to prove my independence a touch like to know that I could go somewhere in an environment that perhaps is a bit more busy and uncomfortable than I’ve been in for weeks and not crash. I, I just almost wanted to know that I could get on the Tube, go to football stadium, sit there, watch a game and that I would be fine. I felt pretty bad halfway through. I’m not gonna lie. I wanted to lie down. But obviously, I just sat back down and had some electrolytes and stabilised myself and the only time I wanted to go and lie down in the stadium concourse behind the stand and just like do that again. But I just, by having like mini shutdowns and I just kind of like don’t talk. Try not to engage my brain too much, just like zone out a bit, 10, 15 minutes I find it can just help steading it back down and I felt extremely tired on the way home. I was very, very tired on the Tuesday. But I just and I’m not gonna make a habit of pushing myself like that.

Yeah. Well I mean, yeah, like kind of, but I actually think, you know, I’ve managed to work around it a little bit. Like, you know, I played football once a week or at least I did, previously. And now, I just play in goal [laughs]. You know, and so I’ll maybe have like a couple of minutes of playing out and you know, playing mid-field or whatever. But then after I’m done, you know, my teammates understand when I say, I need to go back in goal now, you know. So, like, you know, we you know, I’ve managed to adapt, I guess and still to you know, try to find joy in those things even if I can’t participate as I would like to, if that makes sense. But no, oh my God like people have it so much worse. Like that person that you were just talking about who like can’t get through a sentence. At least I can do that, you know.

People see you and say, “You look all right. I don’t see illness in you.” Because when people say disability, they expect a person to be always gloomy, in a wheelchair or basically, that’s what they look. If you say, “Okay, I lost my physical strength.” So, when they say illness, they say, “Okay, wheelchair, look gloomy, look unclean.”  That that kind of pigeon holing. So, when those people see me sometimes, they say, “What’s wrong with you?” But they don’t see me as me. They see, when they see the label, they only read the label and that’s very sad because I believe that even with fibromyalgia, I lose sixty to eight percent of my normal function level but, hopefully, in the first two years or three years, if I can prepare myself, engage myself, hopefully, I know I set a very high standard me being type-A Asian person, will hopefully get back fifty percent [laughs].