Long Covid in Adults

Tom
And, and in terms of the symptoms, so what does it feel like? so I’ll wake up in the morning, half past seven, eight o’clock, and I’ll almost always feel fine. then, if I do anything that involves mental exercise, or physical exercise, and actually, mental exercise tends to trigger it more quickly, then tiredness will kick in.
 
And, when I feel tired, it’s weariness, it is fatigue, it’s not just I'm feeling a little bit sleepy just now. but what’s much worse is the way it just completely destroys my ability to concentrate.
 
From the GP perspective, I absolutely get the fact that, you know, I am not dying, and that there are more people with more serious conditions than me that the kind of medical profession needs to give its time to. But my life has been completely turned upside down and the lack of support has been galling.
 
Judy 
And I think, you know I mentioned that I’ve been signed off work. That, I’d been avoiding that, like I didn’t think I needed that. I thought I was managing, I thought I could do the pacing thing. And when the doctor said that I should go off work, I was just so relieved because I didn’t have to keep trying every day to, to do my work and do all my things at home [erm]. But it was also hope because until he suggested that taking off time, taking time off work would help me to get better I didn’t have any particular reason to believe that I would get better. And kind of, some point I was just thinking, you know people get chronic fatigue and they maybe don’t recover to where they were, ever. Or maybe it takes a long time for them to get there. And I just didn’t really know whether I was going to be in that category or not. So, I suppose I was trying to, to accept it but actually I tried to accept it too early in the sense that the doctor reckons that I probably am going to get better with enough rest and so on.
 
Grayson 
I’ve never suffered from asthma, but I currently have a set of symptoms that look very like late onset asthma. Not acute wheeziness but shortness of breath and difficulty getting lungfuls of breath, particularly when I’m sitting in certain positions, or lying in certain positions. Not brought on by exercise or anything like that particularly 
 
And in terms of the doctors’ care, what I’m experiencing is what I’m sure a lot of other people are experiencing is they don’t know. They’re speculating.
 
Ben 
I think I’m at the point now I feel considerably better, I think I’m at kind of thirty or forty per cent of the way to being better.
 
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, to recovery.
 
It’s, it’s taken its time, but I am, yeah, I’m finally somewhere that I think, okay, 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.
 
Jennifer 
I would think, I would say that the healthcare people, whether they are already supportive or they’re not, you know, they’re kind of those people who are a bit hm about it, I would say they all need to have a very open mind about long Covid. And these other, things like ME as well I’m sure are going to benefit from this, because it, it is not a normal thing, it doesn’t fit into their boxes. And that’s the trouble with, with, you know, when you see someone, and they want you to fit into this box and you don’t because it’s not…it’s a multi-systemic thing.
 
Callum 
So, but I was unemployed for yeah, just, just over a year and during that time I applied for universal credit and also personal independence payment as well which is a big whiplash. That is a massive culture shock is going from, you know, like being in the professional, professional, like profession as an engineer and then like, and everything about that and like I’m very conscious of, I’ve worked with a lot of people who are on benefits and on, on that side of life. And I, you know like, I was always very aware of well like if ever I was in that position I would, I would, I would you know, take that money. I would ask for that money because it’s, it’s owed to me, like it for my support for the situation. But it’s still very strange to find yourself in that position and especially while sick. Especially while unwell.
 
With universal credit and that I signed up for universal credit side of things was, was almost fine. It was almost, you know, like it’s, it’s built for people who are unemployed. It’s very straightforward. You fill out a form online and you just get it and it’s fine. But everything that’s tacked on to help people with disabilities or with long-term illnesses is so arduous and I’m still in the process of fighting my PIP claim and I’m now taking it to tribunal because I was one point short previously of getting the award and it, like my, my, it, the entire process of PIP has been so dehumanising and horrible to the point where I feel like over and over again I have to prove and articulate and specify specifically how my illness, my disability makes my life worse and makes it difficult and, you know, open my entire life and existence wide open for them to say no. To specifically denigrate and to give frankly insulting means of rebuttal of me, you know, saying x, y and z.
 
Fiona B 
Interviewer: And just…just thinking, you know, ahead about, you know, messages that you think are really important for either people working in the health professions or for employers or for family members or just the general public, do you have key messages that you think it’s important to really draw out for any of those groups?
 
Yeah, I think so, for each of them, I would say. If we take the healthcare profession first of all, I was fortunate that I was already in a system, and I was fortunate with the GP, who was a young GP, whether that’s any relation to it, I don’t know, but they listened.
 
And I think just listen. It’s quite obvious when you talk to somebody what they’re feeling and what the symptoms are, and I think a lot of people will have… were different, probably. I mean, the symptoms for Long Covid, as I say, I mean, I never had the shortness of breath or the cough, fortunately, or the lung problems that seem to be with so many people, I was fortunate, but I had other symptoms that were.
 
Just the chest pains and the head, so I think everyone’s individual, but everyone’s probably, as well we’re under the same banner, and if you don’t just tick a box, think that it’s…it probably has been related.
 
Interviewer: And why do you think…why do you think that is, why do you think we do that?
 
I think a lot of us are prob…professionally as well, we’re probably quite stoical and we kind of just think it’ll go away it’ll be okay, and probably we’ve been in society with Covid, that some people have been okay and some people haven’t, and you kind of think, oh, I don’t want to make a fuss, maybe it’ll go…but then when you get so poorly, you have no choice.
 
You’ve got to go and get the help, because there is help there, it’s just getting the right GP to talk and help and support you as well, but I think…and I think the GPs need to listen just to, you know, if you don’t have one that does, or the healthcare professions themselves should be reading the research out there, they should be looking at the research everywhere and being up to date, ‘cause things are changing all the time.
 
I mean, I can just say that our profession academically, keep looking around and what’s happening and be up to date with it, because there’s probably lots of people out there that don’t want to go in and say it, and by the time they build up the courage to say it, like I did, and be in tears, which is not me…then you…come on, we’re not saying it for nothing, listen to them.
 
Iain 
You know, 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 must look very strange, I think. You know, as I cross the road to avoid people 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 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…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.
 
Anthony 
Or social interactions, you know, things that you would normally do every day, and take for granted, and not regard them as, as, as, 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…
 
And it takes, 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 coming to terms with what’s happening is very strange. Because normally most people are unwell, and they, you know, you rest, and you start recovering, and you start doing more things, and you push yourself a little bit. And that all works fine. But it doesn’t work in this case.
 
Sarah 
I don’t know. I mean, I think probably increasingly it is being better understood. Most people now at least have heard of it and know what it is.
 
But I think it’s a bit like anything: they might have read one particular article and if it’s not particularly relevant for them and their life they might then think that that one article they read is sort of all that there is to it.
 
So, you know, for example if there’s someone that’s…if they read an article for example on someone that’s got a particular set of symptoms and they’ve found doing a particular diet helpful they might think that’s what Long Covid is. So, I found with my own friends and family – and obviously, you know, I’m lucky, I’ve said before that, you know, people are willing to listen to me and I am quite open and do share a lot about things I’m trying and how I’m feeling and that sort of thing.
 
But yeah, it’s a bit like anything that I think people [sighs] the general public only understand as much as they, if they haven’t actually got personal experience of it, as much as they…what they have heard or read about it which is probably less than someone that is going through it [laughs].