Long Covid in Adults

Thoughts about recovery and the future

When we spoke to people about Long Covid, most had been ill for many months – sometimes for over a year. Our interviews took place between April 2021 and July 2022, when Long Covid was a relatively new condition and little was known about how long it might take to recover, or even whether everyone would fully recover. In the interviews people talked about whether they were on the road to recovery and about their worries in the short term and in the longer term. They also talked about their thoughts and hopes for the future and whether they would be able to get back to living their lives as they had done before they got Covid-19.
 
This page covers:

  • Ongoing worries
  • Uncertainty about recovery and the future
  • Symptoms over time
  • Signs of improvement and recovering 

Ongoing worries

Felix worried because his parents didn’t know whether he would get well enough to work again and whether they would have to continue to take care of him in the future after they had planned to retire. Hannah said, “I just worry that it’s never going to get better.” This was one of Charlotte’s many worries too.

 

Charlotte described lots of worries - whether she would get better, and the impact of her illness on her family life and her job.

Charlotte described lots of worries - whether she would get better, and the impact of her illness on her family life and her job.

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Yeah, I worry if they get Covid and be like me. Because there has been talk of these like POTS 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 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 for years you’ve not worked, you lose it. I’ve done coming up 18 months. So, lots of worries.

 

Hannah, a young woman in her 20s, wanted her old life back but she worried that she could not manage her anxiety symptoms if she moved away from her parents.

Hannah, a young woman in her 20s, wanted her old life back but she worried that she could not manage her anxiety symptoms if she moved away from her parents.

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Yeah, 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 okay, 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.

 

 

Uncertainty about recovery and the future

The people we interviewed talked about their hopes for recovery, but many voiced uncertainties about whether they would ever get better or if their health would get worse. Some people we spoke to worried a lot when they thought about what might happen in the future. Vonnie felt there was “no end to this. We can’t say I’m going to be better in six months’ time. I didn’t realise Long Covid meant that.” For Lyn, thinking about the future was like “walking on thin ice and not knowing which part might break.” When we interviewed Felix, he was feeling “pretty terrible” about the future. He said, “I have no idea how my future will be. Maybe it [Long Covid] will go away eventually, I don’t know.” Sonal had been through a period when she felt “I will never recover.” When she looked out of the window and saw people walking in the street, she had “that kind of fearful feeling that I will never be able to do these things that other people are doing.” Fiona B tried to “think positive” and had “good pockets” when some of her symptoms improved, but she didn’t know “what the end game is” or “how long that rollercoaster’s going to go on for.” 

Xanthe was sometimes “completely terrified” when she thought about the future. She talked about how Long Covid affected young and older people in different ways.

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Xanthe was sometimes “completely terrified” when she thought about the future. She talked about how Long Covid affected young and older people in different ways.

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If you look forward, like if you're looking at the future, how does that look, or how do you feel about that at the moment?
 
Sometimes completely terrified. I don’t know where I’ll be health-wise, financially, career-wise. Most of the time I feel terrified, and at the same time I think I am 26 and I’m lucky I’ve been able to get my qualification, so I’m not sort of a child suffering trying to even get through school, so I’ve got that. I’m sort of stuck, and I think actually maybe being stuck is okay because I’ve got a huge amount of qualifications behind me, experience behind me, skills, and that I have so many years ahead of me, I can’t possibly be like this forever, but that’s what I try to remember. At the same time, I’ve met many middle-aged people with Long Covid, I would never minimise anyone’s experience, but the people I’ve spoken to, I don’t know if I’m making an assumption, but the middle-aged people with Covid have seemed to be managing much better? Because I mean I can’t imagine having to take care of kids, that must be awful, but you know you've had your career and I know that you know you think that there’s more life ahead of you, but you've had some...you know, I don’t know, so I think it really is a unique position being in mid-20s and you know you're just ready to leave the nest and you're stuck. So. I think at the same time there are so, so many years ahead of me that something’ll...hopefully I’ve had my life’s worth of bad luck [laughs].

 

 
One strategy that some people used to deal with living with uncertainty about the future was to focus on everyday routines and the immediate future. Helen X tried “not to think too far ahead.” She didn’t want to plan for the following year in case she and her son still were not well. Julia said Covid had “literally rocked our world – it’s been probably the hardest time of my life ever.” It was hard to make long-term plans whilst wondering if she would get better.
 

Lucy doesn’t like to talk about the future because she doesn’t know what it will look like. She’s taking things day-by-day.

Lucy doesn’t like to talk about the future because she doesn’t know what it will look like. She’s taking things day-by-day.

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I don’t know whether you’re comfortable about me asking your thoughts about the future. I realise it’s a challenge.
 
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 and EDS 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 going to 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. 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 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, I know that much [laughs]. 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.

 

Christian tried not to think about the future because he didn’t know how hopeful to be about getting better.

Christian tried not to think about the future because he didn’t know how hopeful to be about getting better.

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You know, do you have hope for the future that you’ll improve or how do you feel 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 is 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 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.

 

Michelle’s hopes and dreams were “pretty much shattered” because of how Long Covid has affected her and her son. She could no longer “plan years in advance”.

Michelle’s hopes and dreams were “pretty much shattered” because of how Long Covid has affected her and her son. She could no longer “plan years in advance”.

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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...

 


 
Michael also said, “I don’t really look too far in the future anymore...as I would’ve done.” One of his hopes for the future was that he would become well enough to finish his medical degree. He told us he’d “learned an awful lot” from having Long Covid which would affect how he would treat patients in future. He said this would involve “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.” 

Symptoms over time

People we spoke with had different experiences of their symptoms changing over time.

Penny accepted people had different responses to their Long Covid symptoms. She felt she just had to “ride the storm”.

Penny accepted people had different responses to their Long Covid symptoms. She felt she just had to “ride the storm”.

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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.



Some people said their symptoms had stayed the same. When we interviewed Robert, he had been living with changes to his sense of taste and smell for over a year without any significant signs of getting back to normal. Although Faatimah felt that her symptoms hadn’t changed over two years, she said she did have a “different understanding and way of managing it.”
 

Robert had not experienced any significant improvement to his sense of taste and smell. He finds it difficult to deal with the uncertainty of whether his sense of smell and taste will return to normal.

Robert had not experienced any significant improvement to his sense of taste and smell. He finds it difficult to deal with the uncertainty of whether his sense of smell and taste will return to normal.

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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. 


 
Some people felt they had improved to a degree but then their recovery had levelled off. Fiona A felt like she had “definitely” recovered but had “hit a plateau.” She said she was “definitely a lot better than I was but probably in the last three, four months I just seem to have got stuck.” She wondered whether she was now “as good as I’m going to get.” Ellen said her illness felt like “a long haul.” Keeping a diary had helped her to see “how fluctuating a disease or illness this is...it just doesn’t’ follow a pattern, and you just think you’re going mad. Absolutely mad.”
 

Sarah kept symptom diary to track her “up and down journey.” She had felt hopeful over the summer, but recently thought that she wasn’t improving.

Sarah kept symptom diary to track her “up and down journey.” She had felt hopeful over the summer, but recently thought that she wasn’t improving.

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So, I think over the ten months I’ve tried a few different things as the journey’s gone on, and yeah, some things have been sort of less and more effective [laughs]. One thing that’s been sort of helpful I think has been keeping a bit of a diary. So, I sort of started quite early on keeping and giving myself a mark out of ten for each day and keeping a record of that and just to sort of be able to monitor, you know, the ups and downs. And that was what I think that’s what helped me realise quite quickly that it really was a very up and down journey, a real rollercoaster [laughs]. So, I might have, you know, a day that I thought oh, that wasn’t too bad, my symptoms weren’t too bad, I feel okay, and give it a seven or eight out of ten, and then the next day could be a two, and then go back up to a six. And so yeah, so that was a bit of a crude measure but keeping a little bit of a diary of my symptoms and how I was feeling that’s been quite helpful. Less helpful definitely was me trying early on and realising that I couldn’t set myself targets or goals in the same way as I might do or might have done previously.
 
Do you think you’re better just now or are you somewhat the same? 
 
Yeah I don’t…I haven’t recently felt like I’m improving, which has been quite hard. So, I think over the summer I did feel a bit more hopeful that I was having a few more better days and things but it’s hard because obviously over the summer our timetable was different over the school summer holidays to normal so there wasn’t as much racing around as a taxi service for my children and so on. It was just like this, and obviously summer’s a bit nicer and warmer and lighter and, you know, cheerier generally. So, I’d say then that I’ve found it a bit more discouraging recently that I don’t feel I’ve really had more better days than I was having. And in fact, if anything I feel sort of more down about, about the fact of not getting better. As I say, I’m not sure how much of that is to do with the fact that it’s winter and darker nights and yeah, the fact we’re approaching obviously December. Next month will be the anniversary if you like, corona-versary as people call it [laughs]. And the fact that I’m approaching a year has made me feel a bit more despondent. It’s sometimes hard to separate out what is sort of me feeling emotionally better versus physically better sort of thing. But I wouldn’t say recently I feel like I’m on an uphill trajectory at the moment. So, yeah.

 



Some people were still feeling very unwell when we spoke with them. Jennifer said she felt worse at the time of her interview than she did when she first became unwell with Covid-19 more than a year earlier. Anthony didn’t feel that he was in a “recovery phase or a recuperation phase,” even though he had been ill for a long time. He felt “in a different state now, which has not got any better...it’s as bad as it’s ever been, now, for nearly two years.” Mahabuba had a chronic health condition before she had Covid-19, but since having Long Covid she has been in more pain and has less interest in life.

Mahabuba continues to be in more pain than before getting Long Covid and has less interest in her life.

Mahabuba continues to be in more pain than before getting Long Covid and has less interest in her life.

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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.

Signs of improvement – the beginning of recovery

Amongst the people we talked to, there were some who were seeing signs of improvement. Hazeem felt optimistic about the future. He said he knew he wouldn’t “be living like this forever or that long” and his faith helped him to be positive. He thought “there is a bigger plan that God had made so, you know, we never know what’s going to happen, but we should always think positive.” He felt “sure” there would be a cure for Long Covid in the future. When Paul looked forward, he was trying to see having Long Covid as “an opportunity to sort of re-evaluate” who he was, what he could contribute, and “issues of identity” in relation to his work, his family, and wider society. He said “and that’s quite scary because in a way the rug’s pulled from under your feet, everything that you thought was true, you know, those things aren’t necessarily any longer the case. But it’s trying to see it as an opportunity as well.”

However, getting better was not usually a steady and predictable process. Zoya was “slowly kind of recovering” but said “it seems like it’s a cycle, an ongoing cycle.” Sophie felt like she was getting better generally, but the severity of her symptoms could still vary. She said “still it’s not like you get better and then you keep getting better. You go back and you have some really bad days, and you think, oh, you’re not improving, and then you get a wee bit better.” Jennifer described her progress as slow and fragile. Adele said she was feeling better than she had done but was “not completely out of the woods.”
 
Many others described the ups and downs in their journey to recovery.
 

Six months after contracting Covid-19, Penny said she was “definitely better”. She could “juggle work and the kids” but sometimes she was still “tired out”.

Six months after contracting Covid-19, Penny said she was “definitely better”. She could “juggle work and the kids” but sometimes she was still “tired out”.

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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.

Some of Fiona B’s symptoms had mostly improved. Her sense of taste and smell was beginning to come back but duller and she was glad she hadn’t had phantom smells.

Some of Fiona B’s symptoms had mostly improved. Her sense of taste and smell was beginning to come back but duller and she was glad she hadn’t had phantom smells.

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How far do you feel like you are down a road to recovery at the moment, would you say? So, it sounds like the chest pains have largely subsided unless you do too much physically.

Mm-hmm.

The headaches have gone, is that right?

They’re subsided, unless you’re overly tired, but I mean we can all have headaches when we’re overly tired, so I’m trying to think that way more than they are like the Covid headaches. The cognitive side is improved, but it’s not when I’m tired. I’ll go backwards again, so that hasn’t gone [coughs]. My taste hasn’t come back properly yet.

So, what’s…can you…

Smell.

Can you describe a little bit where you’re at with the taste and smell? I think you said before you could taste…you could distinguish between sweet and sour, but that things didn’t…so do things taste as they used to?

I have been fortunate, I mean, again, when you talk to friends, I have a friend, close friend, and she had Covid, and after a few weeks, she kept smelling diesel in the house, right, to the point that she had people come out and check the house and all sorts for things, but it was probably one of the phantom things after Covid, that’s what we put it down to [laughs]. But I haven’t had any of that. So, I haven’t had the phantom smells that I’ve heard and I mean, she went on for a while with this, and she still does, I think, and that’s months after. Myself, as I say, I was probably about five or six days into having the Covid illness itself, and that’s when the taste and smell went, and it was just like bam, it just went with me. It wasn’t a subtle degeneration in taste and smell, I was literally eating something in the morning, and then lunchtime I couldn’t taste it. And I had breakfast, and that was a long time of nothing, just literally nothing, taste and smell. Now, we’re looking at from November, what are we looking at now, November, December, January, February, March…four, five months.

I’ve got a taste of minimum, so I can taste sweet things and I can taste spicy things, so anything else though that’s a plainer taste like this Easter, you know, with chocolate, I couldn’t really taste chocolate. It was there and it kind of had a nice texture, but I couldn’t really particularly taste the chocolate per se. Same with things like cheese, I can’t…I love cheese, and I can’t really taste it, so I’m buying blue cheese all the time, or I’m buying the strongest one you possibly can think [laughs]. I was never a great one for oranges, I found them too sharp, for example. Now I like an orange, because I can just about taste it [laughs], which is probably not a bad thing, and when it comes to meals, it’s more spicy things, so I’m trying to eat more…make my own stuff as much as possible, so spicy curry things or adding a chilli in. I definitely can have a higher threshold to like chillies and things like that than I ever, ever had before [laughs]. Because a lot of other things, a bit bland, and smelling, I could smell bits now more than I could, but not much. I can smell perfume now, which I couldn’t.

And does it smell like perfume, if that is not a silly question?

Yeah. Yeah, it does, but it’s more like it’s taken…it’s as if you’ve taken the…you’ve dumbed it down, it’s duller. So, I have to probably be careful if I put it on, because I probably put too much on, but it’s taken the edge of it [laughs]. It’s just a duller sense, so it’s coming through, but it’s smaller, but it’s not everything I can smell, so lots of things you just can’t smell properly yet that you would have done, so…

And again, do you feel there’s a gradual improvement in that, or is it just a little bit hard to say?

It’s hard to say. You think you’ve probably got some of it back, and you think, is this it? I’ve got a bit back, so it’s better than where it was. And I can taste a few things now, which is better than nothing. But is it going to improve any further, I don’t know, I don’t…I hope so.

Ben described himself as 30-40% of the way to being better.

Ben described himself as 30-40% of the way to being better.

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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.

Tom’s fatigue is not triggered as much as it used to be by physical exercise but is still triggered by mental effort.

Tom’s fatigue is not triggered as much as it used to be by physical exercise but is still triggered by mental effort.

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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. 

Although Helen still had some symptoms that she could “deal with,” she felt “I’m definitely better. I definitely feel like I did before.” She described her improvement as being “quite sudden [and] you don’t realise how bad you felt until you’re better.” June, Irene, Laurie and Ada also described positive signs of recovery. June felt “95% recovered.” She just needed to watch herself because her “old me” had a tendency to “do loads of stuff because you feel energetic” which could lead to a “mini burn out.” Irene said she “felt more like me.” Laurie felt a “gear change” after having her first vaccine. She said, “Suddenly I thought ‘Oh hang on.’ It was like the sun had come out, like the cloud had gone from my brain and I suddenly felt like myself again.”

 

Ada described one day when she felt “I’m back, I know who I am.” She has been able to go to Friday prayer, one of the things she really valued.

Ada described one day when she felt “I’m back, I know who I am.” She has been able to go to Friday prayer, one of the things she really valued.

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So, I’m beginning to find myself. I am doing much, much, much better. I think, for me, Ramadan was, I remember standing washing up and I was like, “I’m back.” Oh my god, she’s back like I love it. I know who I am. This is what I was trying to find. I’ve found it. I went up to a friend and I saw her because she had one, you know, we opened our fast at her house and I said, “I think I’m back.” I started laughing and she goes to me, “You will be tested again. Come on you’re in this whole rut. We all are. We’ll go back to normal.” And all of a sudden she goes, “Just try and do one or two things and try and keep to them, consistently. Whatever it is that’s going to pick you up. Whatever it’s going to give you that boost. But keep to it.” For example, as I mentioned earlier, I went to the Friday prayer today, that’s who I am. And I go, I reset myself and I try and find the energy for the rest of the day.
 
Yeah, I’m still exerted. Yeah, I’m still exhausted and shattered. Probably am going to nap later. I probably will snap up. But knowing I’m so much better than doing that then from being in bed all day every day, being miserable and headachy and a completely different person. So, yes, it’s having a conversation with you it’s like you don’t know how much miles I’ve come away from that. Am I 100 percent, no. I’m not 100 percent. But, again, I do know the tools to try and pick myself up. Try and go back to the gym. Try and, you know, watch my diet and all the external factors that would help me. I’m definitely looking into that. I’m hopeful that it’s going to be slow, but I’m going to get there. I’m going to get there [laughs]. [Pause] But you won’t find me queuing up for a vaccine [laughs].

 


 
Lyn made a video once a month to document her Long Covid journey which she hoped would help others with Long Covid and make them feel less alone. Like Lyn, Kate felt that it helped to accept that Long Covid was not “gonna go quickly.”
 

For Lyn, acceptance and taking things as slow as possible were important keys to her recovery.

For Lyn, acceptance and taking things as slow as possible were important keys to her recovery.

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I agree with you that it can be difficult to hope for like full recovery when there’s no full understanding of what that might look like.
 
Yes, that’s the reason why, even though I’m tired, once a month I do a video to show other people my journey. To hope to make a difference for that, you know, even though I am like this, it’s okay to not be okay. And I think the most important part is acceptance. Once you have accepted, then you have look at possibilities of moving forward in your life. It’s like the pigeon, you have a pigeon in a cage. Even though the cage door is open but if you are in fear, as the pigeon you will not fly out from the cage, even though the door of the cage is open. So, I’m hoping that I can give some motivation to people that, even, you are not alone. There’s a lot of us going through this and we will all support each other to get through this and there’s a lot of things you can do even though you are not in a good place and need help, there are things you can still do, and I hope that that will help others as well. It means taking things as slow as possible in life, yeah.
 

 

Kate was feeling more optimistic about getting better but still had “blips” and “horrible relapses.”

Kate was feeling more optimistic about getting better but still had “blips” and “horrible relapses.”

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I think I feel optimistic about the future at the moment because I think I am getting better. I think things are improving. So, at the moment, I’m feeling that I will get better and I will still be able to do a lot of things that I want to do. Whether that’s denial, I don't know. But I think it’s just optimism at the moment. I feel like I’ve accepted where I’m at. A big part of it initially was just having to accept that you've got this and it’s not going to go quickly, but you know, just hang on in there. So, I suppose every month that I can look back and think, okay, I did just a tiny bit more that month. I feel, okay, that’s good. It’s all going in the right direction. 
 
The difficult thing is when you have the blips and sort of horrible relapses and they happen quite a lot when you think, oh, actually I am getting better and then one of those kicks in. And that’s really quite depressing. It’s quite hard to hold onto the days when you’re feeling that bit better. Thoughts I’m never going to get better. Just going to be with me for life. Lots of negative thinking around it. But generally, I think I will get better. So, I think there are things to be hopeful for in the future. Definitely.
 

 


Even when people felt optimistic about getting better, they still had the uncertainty about when they would “be themselves” again. When asked if she was optimistic about recovering Poppy said “Absolutely. Yeah. Just got no idea how long.” Frances was one of the few people we spoke to who said she felt fully recovered and back to being able to do what she normally would do.
 

Frances said it was “liberating” to able to say, “I don’t have Long Covid” but she thought a little bit of her would always wonder “Is this going to come back?”

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Frances said it was “liberating” to able to say, “I don’t have Long Covid” but she thought a little bit of her would always wonder “Is this going to come back?”

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So, you know, the gap between them will lengthen. The height or the depth of the trough, if that’s the way it is, will reduce. But it certainly went on an awful lot longer than I had hoped. And, and I don’t suppose…it’s only very recently so, you know, two years on I’m now well, you know. And people say, “How’s your Long Covid?” And I say, “I don’t have Long Covid.” And that’s a really liberating thing to be able to say now, because for a long time it would be ‘Yeah, it’s okay,’ because I always had a kind of anxiety or just kind of this gremlin is just sitting here waiting to come back again. So, you know, trying to book to do nice things or to go away or to do anything it’s like, ‘Oh I wonder if I’m going to be ill – will I be, you know, will I be up to it?’ So, a lot of the sort of enthusiasm, looking forward to stuff, you know, for two years was kind of tempered with, but what if I can’t do it?


 
You can read more on other pages about the impact Long Covid was having on people’s work, their families and their finances. All of these impacts could cause people to worry about their futures.

 

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