Family experiences of Long Covid

Yeah, I worry if they get Covid and be like me. Because there has been talk of these like PoTS [an abnormal increase in heart rate that occurs after sitting up or standing] and the things they’ve told me have been genetic. I think it’s, will I pass that onto them. Will they react badly? I worry that I’m not gonna get better and it’s gonna be some sort of autoimmune condition and I’m not gonna be here for it. And I worry that I’m gonna stay as I am and never be able to be part of their lives. I worry me husband’s will want somebody else because you know, I’m poorly and not bringing a lot to his life, but stress. So, yeah, lots of worries. Worries financially. What am I gonna do when my pay stops and I worry I’ll lose my nursing qualification if I can’t get back soon that if…years you’ve not worked, you lose it. I’ve done coming up 18 months. So, lots of worries.

But school does pose massive challenges and being around other people, but it’s just, I don’t know what the...how the future is ever going to pan out because every time...like, over Christmas he was on a course of antibiotics, two courses of steroids and two courses of antibiotics, we managed to clear up the previous infection that he had, I think we’ve had about seven days of wellness, he went back to school for...he’s been back at school for a week and he’s gone [swish sound] straight back into a period of un-wellness.

Yeah, I'm...when I think about moving out and being away from my parents, I literally get so anxious because the only person that can stop me from having a panic attack is my mum, and when I have panic attacks like they are like genuinely one of the worst things I've ever experienced, and they last for like hours, so I'm nervous about that, but obviously that won't be for a few years, I need to like be work and have a job for like a few years before I move out. I am a bit nervous that when I...obviously the job I'm going into is going to be nine-to-five, I'm nervous that I'm going to...because I do get tired easily, and obviously I was doing a lot of work for my degree, but it was on my terms: like if wanted to lay in a bit later and do work later, that was OK, so I'm nervous that that schedule’s going to make me really exhausted and I'm not going to be able to cope with it and I'm not going to be able to perform as well as I want to.

I also do have a trait to just like even like just push through and be like, ‘you're doing it anyway,’ and so am I'm worried that I'm going to make myself worse, which I don't want to do at all. I'm not worried for the anxiety to go, I'm really excited if that goes, but that would be amazing if it did go. And I want normality, I want my old life back where I can like...not even...no, I'm not bothered about the alcohol, but just like be able to have fun and not sit there worrying I'm going to throw up, if I stay out then I'm going to get like a sick bug, or I'm going to get poorly, that I want that part of my life back, like I miss that part of me a lot; it was fun, yeah that.

And how are you feeling about the future?

Yes, pretty terrible you know like to be honest my whole world view like just broke after I got Long Covid. You know, you get an illness and like the health system, most of the doctors don't take it seriously, most of the researchers don't take it seriously and yes, that's really bad you know. I have no idea how my future will be. Maybe it will go away eventually, I don't know. Would be great, maybe there will be innovative treatment, but I don't see how because with no money or basically low resources, you know. Because of course in 2020 we managed to develop a vaccine in one year but it is also only possible because of the massive support for the research. So, I think it would be obviously possible to treat probably the Long Covid which is a probably a similar condition, I don't know, but yes that’s also shocking thing for me to learn why I got Long Covid.

Yes, like the insecurity. My parents don't know if they have to care for me like my other life, they don't know. My parents are actually going to retire in I think like three or four years, and they have saved enough money for both of them and yes, it's also pretty hard you know. They don't know if I'm able to work or do anything in the future.

That’s very interesting.

They may need to care for me so at the moment it's actually not that bad, in the current moment because I'm here, I'm helping a bit in the house, they're working so it's pretty much not that - like there isn't that big of an impact, but the long-term issue it’s like the big elephant in the room I would say.

That's very interesting. So, it kind of ripples out to the impact on the family that you're uncertain about your future, but that makes they're also uncertain about their futures with you?

Because yes, you know they might need to care for me, they might need to set money back for me to care for me, or they have to consider now I might save them for the long term. And yes, of course like I told you before, I'm actually trying to get some disability benefits, but I know it's pretty hard, especially in my age and my physical appearance you know because if you talk to me, you don't find anything like, unusual because when I get my post-exertion, there's no doctor near me, you know. That's the issue. Like I think that's also another big issue. Like those doctors get the impression that the people are healthy because they are healthy at the moment, but they will get a really bad relapse maybe on the next day when they're not in the doctors’.

It’s interesting, me and mum discussed this yesterday because I think up until recently, I had a lot of hope with it being this Long Covid but I would slowly improve, but now I’ve got different diagnosis such as PoTS (Postural tachycardia syndrome - an abnormal increase in heart rate that occurs after sitting up or standing) and EDS (Ehlers-Danlos syndromes are a group of rare inherited conditions that affect connective tissue) which are lifelong syndromes. My outlook has changed and I feel like it’s not, life sentence sounds really dramatic, but it’s a lifelong, they’re lifelong syndromes, so, although I kind get stronger, I hope, I’m gonna have to get used to this changed way of living but it was funny, mum said yesterday, quite a while over the last two years, I just wouldn't talk about the future and I found it really difficult to plan anything.

Sorry, can I clarify, did she say she wouldn't talk about the future or you wouldn’t talk about it.

I wouldn’t.

You wouldn’t.

I don’t talk about the future. I would shut down the conversation just because I was so fearful of what the future would bring and still am. I, I can’t imagine what my future will look like at the moment. I just try to take it day by day because I think I’m quite a logistical person and on a day-to-day basis, I still need lots of help and I know what the social services are like and I know what the council is like because I used to work with deaf people and deaf people that have additional disabilities. And I know how hard it is to get carers and things like that. And I obviously think it’s one thing relying on your family but having to have someone else come in is a completely different scenario to get my head around. Yeah, so at the moment, I’m taking it day-by-day, can’t really answer that one. I know where I live it would have to be ground floor [laughs] I know that much. And an adapted bathroom because it’s really difficult washing with the temperature and with standing. And career wise, I find that incredibly difficult to talk about because it took me ten years to become an interpreter. They say it takes a minimum of seven. And I’m not quite ready to admit or give up on the profession. But my cognitive dysfunction depends on how it does and not being able to process two languages at once. I have to really assess that at some point.

You know, do you have hope for the future that you’ll...you’ll improve or how do you feel, sort of, currently about that?

How do I feel about whether I’ll improve?... I mean of course I would like to be who I was before I had Long Covid, very much be the father I envisioned I would be. Whether I’m hopeful? To be honest, I try not to think about it because I don’t know how hopeful I am. I know some people have had Long Covid for a bit and then recovered. Some people have been more drawn out, like myself. We don’t know enough and that’s both a blessing and a curse in that regards, right? One of...and given that Covid’s going to be more pervasive as a disease more generally, I actually had Covid again for a fortnight...no, sorry, a fortnight ago and I was, kind of like, maybe it will function similarly to a vaccine and it’s too early to tell but actually my health seems to be getting worse again, so I don’t know. I would say I’m not...it’s not that I’m not hopeful for the future, but it’s that I’m not hopeful that there would be any substantial change in my condition because I don’t see any reason why it would change from theories or papers I read online.

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 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 can’t walk to the car and 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...

We were wondering, is it going to get better? What’s the cause of it? How can we help that and there still aren’t really any answers. So, a lot of uncertainty to deal with about, you know, what’s happening to his body and what the mechanism is for that and do we have any effective treatments, not really. We don’t know the problems, we don’t know how long it’s going to last and what the likelihood is of recovery whether it be a full recovery or not. We just don’t know the answers to any of those questions. And whilst he’s, you know, I’ve found that when he’s kind of making slow improvements, we can handle that and that’s good or we take each improvement and I’m really pleased about it and even though he’s not functioning as he should do and not able to go to college and or see his friends, lots of things he can’t do.

Thinking about the future, how do you feel looking forward?

It’s hard to—I think, you know, I think we’ve kind of come to a place of kind of accepting where we are at a bit more. And I think that that’s helpful with your, you know, initially I was thinking, ‘Oh that’ll just be a couple of weeks and he’ll get better’ or I might be thinking as time went on, ‘Oh another month or two and he’ll get better. He’ll be better in time to go to sixth form.’ He’ll be, you know, and that was actually said to us, he’ll be better in time to go to sixth form. And so, I think with the big crash he had in October I realised that actually this was going to go on for longer. I don’t know how long, and it might be years, might not just be one year, it might be several years or many years or forever. I don't know. I hope, I really hope it won’t and I hope he’ll get better in the next few months. And that’s really what I’m expecting. But there is the possibility that actually that’s not going to happen.

Can they, can they? Because it’s so new, because it’s so…are you going to get better? Is this going to get better? Is Vinnie going to get better or is this our lives? Like because we don’t really know, I suppose we’re just trying to muddle through and make it work. In the last sort of three months Michelle has started to say things like ‘Oh, you know, this is my life now and this is, I’ve got to deal with this, and this is how I’ve got to live the rest of my life.’ I’m not there yet. I’m not ready to accept that yet, I still think there is hope that people could get better. Do you know what I mean? It’s a virus that has damaged this, you know, people recover from viruses, viruses are not permanent things, it’s not like a disease or something like that, it’s a virus. But because they don’t know whether the damage is permanent, I suppose, and because we don’t have any answers, I don’t know it’s like a loop, we’re on a loop.

You know, and then you think has it got any long-term effects, you know, you read on social media and things, has it had any long-term implications? I’ve just had my HBA1C check because I’m at risk of diabetes because of my parents. But that came back fine, but you just kind of think does that exacerbate things that could potentially happen or make them younger, you know, a younger onset of things like the menopause and diabetes and other conditions and, yeah.

Mum: “I think we’ve kind of plateaued, I think this is what I think is as good it’s going to get,” and she kind of agreed with us in a way because we haven't seen any kind of like massive improvement, and so is it easier to kind of just accept this is as good as it’s going to be and you've lost, well, we’ve never lost you but that vibrant girl. And this is what and you, but then you think, ‘No, you can’t give up, you can’t give up, there’s got to be something, is it going to be too late to get her back to baseline?’ It’s heartbreaking, isn’t it really? It’s quite upsetting talking about it and looking back through all the notes that we’ve got—

Gracie: It makes us upset seeing that old self, and when I see photos of me in the summer around that time, it’s sad because it’s just when it’s about to happen, literally like—

Mum: Yeah.

…Seeing her go through so, so much in—from that very beginning to thinking...or struggling to get her things to eat was an absolute…it was awful, seeing her crying because she couldn't eat the things she used to eat and then you would get a couple of foods that she could eat, but then the weight’s fallen off her, and then it goes from that to this the fatigue, and this little girl who—

Gracie: I used to do cartwheels.

Mum: Yeah, like the life’s been sucked out of her, and then everything else happening after that, and then it’s like every day’s like Groundhog Day, there’s no like—

Gracie: What’s that?

Mum: Every day’s the same.

Gracie: Okay.

Mum: There’s no, you know, improvement when you’re seeing a glimmer of her being able to be that child she once was, and it just, it just, it breaks your heart.

Gracie: Literally, when I do be the child I once was, the next day, I’m flat out, you know?

Mum: Yeah.

Gracie: I like swings though because, and you can sit like and have fun.

Mum: Yeah.

Gracie: [uh-huh]

Mum: It’s hard, yeah, and it’s that not knowing, not knowing, is she ever going to be back to the way that that she was? Yeah.

I wondered if you would just be able to tell me how things have been, you mentioned in your e-mails that there’s sort of, [your daughter] was starting to show some signs of improvement when I spoke to you the last time but that that’s continued recently?
 
Yes we’ve been thrilled, yeah definitely she’s going from strength to strength so she’s stopped the Fortisip drinks that she was having and started eating again, yeah. Her mobility’s improved and she’s started to use her left arm which we were quite worried about, so…and she’s wanting to go out, she’s started to come in the bus, in the car to the bus stop. And she’s seen a couple of friends, she’s got dressed again so her skin problems are improving. Not, not entirely gone but all going in the right direction, so. She’s even started wanting to do a bit of schoolwork [laughs]. So we’re really, really pleased yeah, she’s at home, just building up her eating and her strength and then we’ve had a meeting with the school about a very gradual return which really just helps her socially reintegrate before we try and address what she may have missed.

Lucy: It’s going to be a while. And I know that, but I’m just, I’m glad that we’re actually making progress because like back then if I’m in a little bit of progress, it wasn’t that obvious [laughs]. And it would, I would lose it in like a day. So, it wouldn't really be progress. And I couldn't actually see a genuine change. And I know it’s going to take a long time, but it’s fine because I know I’m actually on the road to recovery and it’s not just something, you know.

Mum: Yeah, I mean she’s still obviously, if she does too much, it’s still causing problems. But the Long Covid physio said it’s going to take months. All the effort she’s putting in now, she’ll see the fruition of it properly within hopefully a few months.

Interviewer: That’s absolutely great. And are you feeling better in yourself as well then?

Mum: Yeah. I kind of, I lost hope for a bit. I was like, ‘It’s been over a year. I’m not going to…,’ you know, but yay [laughs].

Interviewer: You’ll keep those, yeah, keep those, keep those fists going [laughs]. Yeah, that’s so good to hear. And do you think, it sounds like you’ve had quite a whole combination of things then. You’ve got your advice from the Long Covid clinic and the acupuncture and better sleep. Do you think any one of those things has helped in particular or do you think it’s a combination?

Mum: It’s all of them, definitely. I think they all help in their own little ways. Yeah, there were definite signs of improvement before we started the acupuncture just from getting the sleep routine down and it seems it went against everything to stop her napping when she was so exhausted. But I actually think that made quite a difference—

Lucy: It helped the sleep routine more.

Mum: Yeah, it just helped you reset everything, even though it was really a struggle.

Lucy: That was definitely one of the really hard parts is not napping, because I just, I couldn't open my eyes sometimes. I just, I needed sleep.

Lucy: Yeah, I haven't been able to go into town in months. Like ages, I haven't, like so many shops have changed. And I was like, ‘Oh my god this is a new shop’ and everyone is like ‘That’s been there for ages. What are you talking about?’ It was really nice, yeah. It’s definitely. It’s cool [laughs].

Interviewer: That’s great. It sounds like you’re feeling much more like your old self Lucy, would that be—

Lucy: I’m definitely more excited about everything and yeah.

Mum: Hopeful.

Lucy: Hopeful, yeah. I’ve got positivity. Yeah.

I wondered if you would just be able to tell me how things have been, you mentioned in your e-mails that there’s sort of, [your daughter] was starting to show some signs of improvement when I spoke to you the last time but that that’s continued recently?
 
Yes we’ve been thrilled, yeah definitely she’s going from strength to strength so she’s stopped the Fortisip drinks that she was having and started eating again, yeah. Her mobility’s improved and she’s started to use her left arm which we were quite worried about, so…and she’s wanting to go out, she’s started to come in the bus, in the car to the bus stop. And she’s seen a couple of friends, she’s got dressed again so her skin problems are improving. Not, not entirely gone but all going in the right direction, so. She’s even started wanting to do a bit of schoolwork [laughs]. So we’re really, really pleased yeah, she’s at home, just building up her eating and her strength and then we’ve had a meeting with the school about a very gradual return which really just helps her socially reintegrate before we try and address what she may have missed.

Yeah. And, I’ve had a very up and down relationship with my sense of hope, with my sense of what like reasonable expectations and outcomes are from this. So, at the very start like I held, I hung on for a very long time to the idea that I’m just a week or two away from like getting better... And, you know, there’s still a part of me that obviously, that thinks that could be possible that like, you know, like I could wake up in, you know, some period of time away and it’s just gone. And that has happened to people before and not just through acts of God or like Mother Theresa, you know, but I think that…there’s another part of me that kind of thinks that that kind of hope is a bit counterproductive that rather than me hoping that it would get better, that there’s lots of things that I can do, I do which improves my quality of life now. And I’ve kind of evolved from that sense of desperately hoping that I just, I’m able just to get better. That it just happens. Through to occasionally having like moments of optimism, which is pinned on medical advances, and understanding that research is happening. Some very promising things are coming through.

It just may take, you know, a long time for that to filter through. But I’m gonna be here for the long run. I have made that decision. I’m not going anywhere as long as I can help it. So, I think that helps, that sense of ‘Well I’m here like I’m in, I’m in my life like I have enough value. I have enough things that are going on.’ If I just wait around long enough, maybe spontaneous remission will happen. Maybe like medicine will find a cure. Maybe my quality of life will continue to improve. Maybe I just get a little bit better and it’s good. And I think that again like I, my recovery at times has felt very non-linear.

But on the scale of years, it has, it looks more linear and it looks more like a slow, steady recovery. So, it also makes me feel like well, you know, that’s the case. But I don’t pin too much of an idea of what my cure looks like or my recovery looks like because, you know, even six months ago, the things that I’ve managed to achieve for myself and quality of life improvements that have come from like, you know, understanding my pacing better. Recently, I bought a lounger, like a camping lounger luxury bed because I’m a bit extra! And that meant that I was able to attend an event where I was able to lie down, just be on the bed and do a bit of work on my laptop and then lie down for a bit.

But I don’t mind jumping those hoops if it means that I have a day in bed and I’m not even really in bed like I’m at 60% of my baseline. I, you know, like I’m still able to like get up for tea and stuff or like you know, like I feel comfortable getting up, going to the toilet because sometimes when I’m a bit overdone it’ll be quite uncomfortable for me to go use the loo. So yeah like I yeah, I feel like the stage that I’m at now is one where I can more confidently make those changes that I need to. And, I guess that had tied into my whole means that I don’t have to hang a carrot in front of me. I can just live. I don’t have to necessarily think about getting better. It’s something that’s maybe in the back of my mind pinned to like I said I get better or you know, a cure is found or whatever or treatment is found. But my day-to-day isn’t pinned on me getting better. It’s pinned on me trying to optimise my life better from my disability.

She can’t engage with school beyond occasionally I manage to get her in for an art lesson. Art is really what she wants to do; art is what she loves. She wants to go to art college, and cognitively, it’s easier for her to do that than try and do A Level Psychology which is, you know, it’s just pie in the sky at the moment. But if we can support her and work with the school to at least get her through the art, that would be a massive achievement I think, and would make her feel better about things.

So, she’s actually looking and exploring this, might be something you want to ask her about? About interpreting her experience of Long Covid through her art as her, sort of, project that she has to do a project this year, so her teachers encouraged her to think about ways that she could look at that. So she’s thinking about how she might, she might represent, you know, her old self as a dancer and her new self as a bed-ridden, you know, so that’s—at least that’s something that she can do.

It’s quite, it’s really strange because there’s so much going on but then not at the same time. Like, I don’t have all the stuff happening that used to happen, so I’m, sort of, worried about missing out on that, and there’s, like, the aspect of school that I don’t know what’s going to happen with my AS Levels, so I don’t know whether I’m going to be able to do them this year or whether I’m going to have to just redo the year next year and then I’ll be a year behind, which is a bit upsetting because then all my friends and will be in the year above and I won’t have them in classes and stuff like that. It’s mainly just upset that I miss out on things and I can’t do everything that I want to do, and then going to do something and just knowing that after I’m going to feel terrible, which is not a nice feeling really.

I don’t think I’m worrying that much. I think I just want to get back to doing stuff really. I just want to do stuff I was doing before, and it...I want to be in school, I don’t want to be out of school, and I want to be doing the club activities out of school, doing my hobbies and stuff like that, I want to be going out and just doing things and not being stuck in the house, and being in bed and for the whole day. That’s...I don’t know if there’s a...and I haven't really got a clear aim at the moment, I’m just hoping I get better and going from there, and taking it, kind of, day-by-day really.

Yeah. And with...you know, there’s still lots unknown about Long Covid, that’s why we’re doing this kind of work. What sort of things would you want doctors or scientists to find out?

I think finding how long it can really affect...I think this is something you can’t find out now, but in the future, just finding how much it does affect you really and how it can affect you in all different way, just finding out which...where it can affect you in your body, how long it will affect you. That will take ages as it’s only been around two, three years now really, Covid, so, stuff like that really. Finding out what treatments are...and medication you can...are the best for it really, treating different things. I think the key thing is the treatments for it because if you can get a quick treatment for Long Covid, if you can get the treatments for different parts of it, you’ll recover a lot quicker.

Lucy: I’m excited. I’m ready to get better. I’m ready to go back to school full time. Like because loads of kids will be like, you’re so lucky, you do get to miss school and stuff. But I would give so much to be able to go back to school full time. I miss it a lot. And I can’t wait – I’m ready [laughs].

Mum: I think for the first time in a while it feels like there’s some genuine hope that we might be on the right road.

Lucy: Yeah.

Interviewer: That is such good news to hear and that seems like, you know, that seems like such a big change because it’s four or five weeks since we spoke, isn’t it.

Lucy: Yeah.

Interviewer: That’s absolutely tremendous. And that must be nice for you all as a family as well as for you.

Mum: Oh yeah, amazing. It’s been so nice just seeing her be able to get stuck into things and cope with a bit more and just, yeah, to feel like there’s a chance that things might be on the right, going in the right direction. Yeah, definitely.

Yeah. Well, I think what I try and do is I try and plan for the best and kind of, but I stay kind of in reality. So, with the university, every year I plan to do an intercalated degree, maybe part time and then I make the decision last minute because the university have been good to me. So, far, they’ve let me choose what, what I do, which I’m very grateful for. So, I had a plan for the best, I hope that I try things out constantly. So, I’m constantly trying out kind of you know, safe kind of therapeutic options that hopefully would improve me. To varying degrees of success. So, yeah, I think I don’t really look too far in the future anymore. I think as I would’ve done. I would’ve been like what specialty am I going to go into. Where am I going to live? I can go to Australia, you know, all these kind of things like that. And then it’s like once, once Long Covid hits, it’s like, oh, nothing is certain. I wasn’t expecting this to happen to me. Imagine what could happen next. You know, it’s not like in a catastrophising way, but in a philosophical way.

I just hope that I can be well enough one day to complete my medical degree and become a doctor and help and believe people, basically. I think I’ve learned an awful lot from this experience about how I would treat patients if I could become a doctor. And it’s basically just the foundation of kind of believing people and doing everything that you can to help them, even if you don’t have all the answers, all the guidelines in place.