Long Covid in Adults

That’s what I’m talking about and after I came out of hospital, last [inaudible], which I was, they found out I’ve fallen at home five times now. They were back very fast [laughs]. They put adaption in and then the hospital people, they put in the adaptation for me and I’ve got push stool now. I’ve got a bath board, a couple of handles, in place to help me to get up. I’ve got the tray, zimmer tray thing help me move around and walking stick to help me but then the community therapist came and because I could not do certain things, I was discharged, just like that. No more continuation. So if I can’t do stairs, they can’t work with me. So, basically, means I’ve got no movement at all. The therapist in the hospital says I can do those exercises, [inaudible] exercise therapy because they gave me a lot of exercises and since I can’t do it and I get tired going to the hospital and that, they discharged me. So, basically, I’ve got no physio at all.

So, the Facebook groups that formed, both internationally, nationally, and Scottish-based ones have been the most helpful. So, there were people in there saying they’d seen various physios, and one was a breathing specialist, so I spoke to her, and she was amazing. And she has helped, I was hyperventilating, and my diaphragm was stuck up, like it wasn’t going up and down, so I was unaware of all that but once you find out you realise that that’s what you’ve been doing [laughs]. And she said she’d worked with loads of Long Covid, and this seemed to be the case that a lot of us have bad breathing patterns anyway, I used to see that in my job, like people with tight shoulders who have often got bad breathing, but this was kind of different because it was so extreme. And she said, “It’s something to do with the virus caused your, even if you don’t have bad lung damage, it’s affected your breathing.” So, she gave me lots of exercises and strengthened my diaphragm, and that really helped with some of the brain fog because that’s, as she explained, “It’s like you’re not getting enough oxygen into your system, you’re just not getting enough, and it’s not getting to your brain, it’s not getting anywhere, so you’re constantly depriving yourself of oxygen.” Even if your, the oximeter that they give you on your finger shows you’ve got a reasonable amount of oxygen, it’s not getting to the right places, it’s not going, so your breathing is really important. So, that was really helpful.
 
And then I’ve sought out a rehab physio as well to help with building up some strength. Because obviously weeks in bed and months of lying around and not able to do anything you start to get completely deconditioned, so that doesn’t help your recovery. So, the rehab physio was…they give you exercises, just very gentle, like ridiculously gentle [laughs]. But it’s all you can manage at the time, so it’s great to have someone show you those, what to do.

And he’s been very good in that he has not, he’s kind of, it hasn’t ever felt like he has been pushing physio solutions, you know, square pegs in round holes. You know, I’ve heard of some people with Long Covid who have, you know, gone to physios and the course has always been just do exercise, do a little bit more every day, and that can push people backwards. It can be a really destructive cycle because their bodies just get overwhelmed that they don’t get a chance to recover, and people want to get better. You know, ‘My body’s pushing back but I’ll just keep doing a bit more’ and before you know it you’ve actually lost capacity permanently.  
 
So, on that level I think that and when I have, in the past said like, to [practitioner name], you know, “Can you recommend some exercises that would strengthen my core? Have you got any exercises that would like—” It was my legs, and my feet were getting quite stiff. And it was like “Can you recommend some exercises for me?” And he happily provided sort of physiotherapy for those. And I mean he’s been doing this for a very long time as well. Like he’s been working with people with sort of chronic conditions for a long, long time. And he’s seen a lot of recoveries. And I think that he therefore was just, as much as anything else, [researchers name], it was the capacity to speak to somebody who’d seen this before. And that it wasn’t new to them. It was, you know, a different configuration. It was presenting in an interesting and different way. But speaking to people who have got, you know, have dealt with chronic illnesses know that everyone is different. That was the thing that was really valuable because it just meant that like me asking him things like, “Will I ever get better?” He’s now speaking from a place of experience like you know, there were times I would ask my mum that question because she’s a nurse and, and she would give me a very kind of like, “Of course you will” answer. But that’s a mum answer more than a nurse’s answer. And I think that was nice to be able to speak to somebody who was like, “Well, you know…” You know, like any, I remember then, I’d ask the question and the answer was basically everybody’s recovery is different. And what constitutes some people’s sort of full recovery, other people are, you know, like the improvement and the quality of life is what matters. And I think that gave me a more nuanced and a better roadmap, going forward. And I, again, I struggled to think about what it would’ve been like for me without having had that resource.

And they have an occupational therapist and a pulmonary rehab physio so I saw, I spoke to both of those people over the ’phone so it must have been ’phone appointments they have. And that’s been really good, particularly the occupational therapist because she calls me up every month or something like that and, and you just talk through what’s happening and they talk about…she’s been teaching me about pacing and things like that. And it’s just really nice to have someone, the same person, talk to you and have enough time to talk to you. She might spend about half an hour, forty-five minutes on the ’phone with me. So that’s good because she remembers who I am and she remembers what I [laughs] told her last time. And she’s unfailingly kind and helpful and positive. So that, that’s been a really good thing.

And I think one of the good things about the occupational therapist there is that she’s quite happy to admit that she doesn’t know yet. That, you know, there’s lots of things that nobody knows. But she has got enough other patients with Long Covid that she’s beginning to kind of…she says that she learns a lot from them and she can listen and try and give advice to the other patients based on, on what people have told her. Or reassurance, or even just to know…well, for example, she said some people have found that the vaccinations helped them, and some people haven’t. So, you know, she…it’s not at the point where we have good clinical evidence but she’s able to kind of share other experiences.

And you indicated there that you, you appreciate the honesty about uncertainty. Could you just say a bit more about why that’s helpful or important?

I think it’s important because it’s not patronising. It’s, it’s helpful because it’s not patronising. it’s a kind of well “okay we’re going through this together what you tell me is important”. And it’s important, I think, that that honesty is accompanied by an earnest wish to help me with it and keep helping me with it. As opposed to, you know, if I went along to somebody and they went, “I don’t know. Nobody knows. See you later.” Then that would be incredibly frustrating. But I’ve always felt with the occupational therapist that she doesn’t know but she’s very willing to learn and she’s not going to abandon me halfway through.

I was told that I needed a referral, and it would take a long time and I was like, well I don’t care how long it takes because I need to see occupational health so in after that I did, I was able to eventually get an appointment. It didn’t take as long as I thought it would and occupational health listened to me and said that any return to work has to be stagnated, it has to be a phased return to work. I have to work X number of hours a day over a period of time, over a month and they asked me to make sure, they told my work, my bosses basically that that’s what needed to happen so I was very relieved that I was able to see them but I, and my conversation with occupational health, they were telling me they’d been inundated with cases of Long Covid and they said that it was very stressful for them as well and it was very clear that they understood very clearly that workplaces are not understanding the magnitude of this and they don’t understand how to react to it.

And in fact, through work, I have access to private medical insurance, so I was able to access a number of specialists. so, I have a long list of things that, it wasn’t, which is quite good. But there was the, I think it was the respiratory specialist who I saw in January, and even then, I think said, and I quote, “I don’t believe in Long Covid”. 

That’s what the respiratory specialist said?

Yeah. Okay, that’s nice [laugh]. But if I flip that around to, only just a few weeks later, it was the neurologist specialist who started off with, he kind of, you know, by that time I'd seen a number of professionals, and kind of, he’d read the notes and said, “no, this is Long Covid, we’re going to, you know, we’ll do the MRI, and we’ll run another couple of tests, but this is Long Covid, and when it does turn out to be Long Covid, I really don’t know what we can do about it”. 

Okay.

So, he ran the tests, and there were a number of things that were discounted, which then got me back to exactly where, the position that he said we would be at the start of the engagement.

So, by last September, I'd heard some. The single, …and no offence to my GP, and no, no doubt everyone was learning about it…the single best source of information that I had, by a country mile, was, the occupational health specialist, that I engaged with through work. Who, and that individual was really on the ball, probably I suspect, because Long Covid was to have more of an impact on occupational health at that point, than perhaps other parts of, of, in case of health. But she, fixed very quickly on that as the likely cause of, the issues. She gave me some recommendations, pointed to me some, a couple of excellent websites, that were focused on supporting folk with ME or chronic fatigue syndrome. 

But, and that was, you know, I think where I actually first, for example, you know, got the information on, you know, I think it’s pacing, it refers to, you know, the don’t push yourself, pace yourself.

So that, you know, in the early days, you know, before it became, there was more information available, that individual was by far, far and away, the best source of information for me. And I fed that back in through, kind of our internal HR, but with a, with a glowing report. and I've been lucky that I've had access to the same person a couple of times, after that, kind of on a regular basis. And again, I'm getting good updates there on, you know, kind of, just suggested ways of helping to manage it.

But I feel that the whole approach using CBT for Long Covid is absolutely not the same as using it for something where you have personal issues that cause anxiety and, sort of, stress and, you know, maybe…simply because the whole Long Covid thing is…
 
It’s a physiological condition. It’s not as…it’s not generated by psycho-…you know, it’s the whole business to do with, you know, how you approach and treat ME. It’s the same thing with Long Covid, I think. And I think just taking a CBT and saying, “Well, you know, you have choices about how you feel about this,” well actually no I don’t have a choice about how I feel about this. I actually feel terrible whether I…[laugh]. So, I think... I didn't think that they’d hit the right note on that.
 
Oh, that’s really useful feedback. But I could imagine that must be…yeah, I would have maybe felt quite annoyed if I was having very severe headaches that come on within thirty seconds and…[laugh].
 
Being told I have a choice about how I feel about it…No, I don’t [laugh]. And that’s the thing actually. This is…so I think…while I think that therapy is potentially quite good in order to…well potentially quite good. I think a sort of mindfulness, sort of, session is probably better in terms of helping people cope with the uncertainty and so on, rather than a sort of, traditional CBT approach which is you have choices about what you do here, when in fact you don’t have choices.