Grayson
Grayson lives with his partner and works full time. They have three children aged 17, 25 and 28. Grayson describes his ethnicity as white
Grayson was in the process of recovering from a hip operation when he fell ill with Covid in late 2020. He has been told that Covid may be responsible for exacerbating the constant hip pain he experiences, and he worries that some of his symptoms may be long term or permanent. Grayson was interviewed in October 2021.
More about me...
Grayson felt ‘pretty healthy’ for his age before getting Covid. He had ‘gone years’ without going to the GP. He had two hip operations, the most recent one 3 months before catching Covid. He feels he had become somewhat overweight after giving up active sport in his late 40s, and he wonders whether this may have affected his resilience to Covid.
He developed horrible, ‘classic’ symptoms of Covid in late December 2020 – he said it was the most ill he’d ever been. His wife was very ill with Covid at the same time and needed to be hospitalised. His son had Covid at the same time too. After feeling very unwell for about three weeks, he felt the worst was over but he went on to develop some new symptoms which came in two distinct phases. This was at the height of the ‘Kent’ variant in the UK, when there was much discussion about the dangers of Covid, and he feared getting very unwell, being in hospital and possibly dying.
His first, ‘post-Covid’ phase was very intense and unpredictable. He said the symptoms ‘all kind of swirled around and it was like they were playing some kind of game of tag, you know, handing the baton to the next symptom.’ His symptoms included ‘incredible’ bouts of soreness and tenderness of the muscles around his hips and back, fatigue, acute dizzy spells, tinnitus, wheeziness, headaches, brain fog and diarrhoea. An MRI scan showed inflammation in the muscle sheath around the hip.
After about 9 weeks (week 12 after getting Covid), everything seemed to calm down. The dizzy spells, diarrhoea and headaches disappeared, and he went into a new, more settled ‘Long Covid’ phase where he was left with hip and back pain, which affects his sleep, and an asthmatic-type cough, discomfort in the lungs and difficulty breathing. These ongoing symptoms have been detrimental to his quality of life and he fears that some may be long term or possibly permanent.
Whilst he is thankful for what the NHS was able to offer him, he found it shocking and frightening to see the NHS ‘under siege’ at that stage. He is very conscious that medical science does not yet have answers about what will happen to people with Long Covid. He finds the absence of scientific understanding around the causes and potential cure for Long Covid unsettling.
Apart from during the initial three weeks of having Covid, Grayson was able to carry on working in his very demanding job. His employer was supportive and he had a phased return to work.
He isn’t taking any regular medication for his symptoms, though he used painkillers during the more acute phase of his post Covid symptoms.
His message to others is that everyone deserves to be heard, no matter how serious or different their symptoms are. He feels that people who were seriously ill with Covid early on in the pandemic are likely to have been affected psychologically – it was a frightening time to have an illness that totally disrupted day-to-day life in society. He feels that because post Covid symptoms are so widespread and varied, there is a need for more specialist services, support and advice for people with Long Covid – both in hospitals and primary care, including for people who like him now have less acute symptoms which nonetheless affect his daily life. He thinks health professionals need to be more upfront and honest with their patients when they don’t yet have answers to explain the condition.
Grayson had difficulty breathing, muscle soreness and pain, acute dizzy spells, ringing in the ears, headaches and brain fog. His breathing problems developed into asthma and his dizziness could be frightening.
Grayson had difficulty breathing, muscle soreness and pain, acute dizzy spells, ringing in the ears, headaches and brain fog. His breathing problems developed into asthma and his dizziness could be frightening.
There was probably then about nine weeks after that of slightly different post-Covid symptoms. So, I’m…I’m just looking at some notes I made at the time of those. So, I continued to have quite acute shortness of breath, difficulty breathing, had to try and keep upright all the time, it was difficult to breathe when lying down, still had a cough though not as bad as during Covid. I acquired dizzy spells this was something completely new. I should have mentioned on my original Covid symptoms that the first place I felt the infection was in my hip where I’d had a hip replacement three months before I caught Covid. And you could definitely feel it in the muscles around the knee joint. In this post-Covid era, the sort of weeks three to nine, I suffered incredible soreness and tenderness of the muscles in both of my hips, particularly the one most recently operated on, but I’d had the other one replaced about eighteen months before. Sorry, about a year before. So, I had a year-old major surgery wound and a three-month-old major surgery wound and around both of those, incredible soreness and tenderness of the muscle sheath. The doctor told me that that’s what he felt it was.
I can only describe it as feeling like a combination of cramp and how you feel after you wake up the next day after you’ve run a marathon. All of the muscles were incredibly sore around that joint and that kind of soreness and fatigue in my hips spread out from my hips. I also had it in my back. But that was probably one of the most acute post-Covid symptoms. I also had quite acute dizzy spells and tinnitus which I had during Covid as well, but it continued quite acutely into that sort of weeks three to twelve period. And also a slight feeling of like having a bad hangover. If you know what I mean by that? It was almost like having a hangover every day, feeling kind of fuzzy, not, you know, brain fog people call it. And all of that lasted until April sometime, in fairly consistent form. It did evolve over time, so these acute dizzy spells which really did quite worry me came for about three weeks and then they went, and they seemed to be associated with the tinnitus in my ears and some of the headaches. I used to, I don’t anymore, suffer from migraines and it was a bit like a post-migraine fog, very similar feeling, which is also a bit like a hangover [laughs].
So just, you know, really feeling not yourself, I was quite, I developed a lack of confidence, a slight wobbliness on my feet, partly I think because Covid interrupted my rehab from my hip replacement and I still haven’t really recovered my confidence of balance and moving around and some of those things. So, it kind of slowed everything down. And then, from April onwards, I have kept what now appears to be, and the doctors are in the middle of kind of diagnosing this, it’s morphed into a late onset asthma. 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 lungful’s of air, particularly when I’m sitting in certain positions, or lying in certain positions. Not brought on by exercise or anything like that particularly. So, that’s accompanied by an asthma type cough, not a Covid type cough but, if you know what I mean? If you go like that, it makes you cough, and I can feel like a physical pain in my back and my lungs. And so, I’m still having a few more tests but the doctors think that it has now turned up as late onset asthma. And in terms of the doctors’ care, what I’m experiencing is what I’m sure other people are experiencing is they don’t know. They’re speculating. So, you know, I’m receiving some long Covid treatments, but I’m certainly not in the, like, most acutely affected group, there are people, you know, far worse affected than me but yeah, it seems to be the final manifestation of the lung problems that I had during Covid.
In that sort of middle period, was there anything that you noticed that seemed to particularly trigger flare-ups in symptoms? Was there any pattern to it or was it, from your perspective, quite random?
Yeah, in terms of the dizziness, there did seem to be something to do with my head being at an angle to the left so I was speculating it was in the inner ear. So either an infection or swelling or something in the inner ear, and it would be triggered by sudden movement like that, suddenly you get a dizzy spell. There was a really frightening phase in the middle where it would just come as I was, I could be walking along and suddenly absolutely everything would be kind of, you know, all over the place. Way back in the past I’ve experienced a little bit of Meniere’s disease, I mean you lift your head off the pillow and the whole world swims round. But I’ve never had feeling dizzy when I was upright, so there was a little bit of what felt a bit like Meniere’s when you’re kind of just resting and you move your head suddenly and it triggers something. But this was …but this was, you know, I would be walking in a straight line and literally I had to stop and everything’s moving and if I could get to a chair I’d sit down, but sometimes if I was out walking in the park, I would just have to sit on the ground. And it would go crazy for thirty seconds to a minute and then go. That was frightening because you never knew, you know, it never happened to me when I was driving but I was obviously really worried it might happen when I was driving, or when I was, you know, going up and down stairs or you know, somewhere where I’d be particularly vulnerable. That kind of suddenly stopped about week twelve and didn’t come back.
Grayson said a lot of people who had bad Covid symptoms had been “traumatised to a greater or lesser extent”.
Grayson said a lot of people who had bad Covid symptoms had been “traumatised to a greater or lesser extent”.
If somebody has looked at your lungs and they can tell they are not permanently damaged which is the case for me, so chest x-rays, everything, it’s all clear, it’s fine. There’s no fluid on there, you know, that’s all been checked, you know, once you’ve ruled out lung cancer, which is the slightly more terrifying kind of prospect, and then you have to think about, well, it’s damaged and affected me in a different way that nobody quite understands. And I mean, you know, I’m very aware of the importance of psychology in medicine, so, you know, I’m alive to the fact that some of this may be me things that would have happened to me anyway that I’m convincing myself are to do with Covid, that’s quite possible. But, you know, at the same time. So, for argument’s sake, I could have got late onset asthma anyway, but the fact really it kind of came seamlessly out of a set of chest problems that I had during Covid with no interruption to that, just slightly changing its form. It makes me believe that it is linked. So, it is tricky work because a lot of us who’ve been through it are traumatised by Covid, to a greater or lesser extent and so we may be attributing things that are nothing to do with it to it.
Grayson says Long Covid has affected his hobbies of hill walking and visiting the theatre. He is more nervous about going on walks on his own and self-conscious about coughing in public.
Grayson says Long Covid has affected his hobbies of hill walking and visiting the theatre. He is more nervous about going on walks on his own and self-conscious about coughing in public.
After my first hip replacement I’d managed to do hill-walking as a way of exercising it and started to do that after my second hip replacement. It’s been really difficult to do since I had Covid, and yeah, all sorts of things contributing to that, but walking on, you know, uneven surfaces and I have a bit of a fear if I’m on my own of being on my own and not being able to get help if I need it. So, it’s affected my confidence about hill walking. I found I was trying to work this out, thinking about this interview actually, I probably haven’t…I’m living in [place name] and I…I would always go [place name] two to three times a week for two or three-hour walks. I haven’t done that or only done it very rarely and with other people. I feel less confident about doing it on my own now. And I really hope that I can overcome that and get…you know, it’s good for my mental health and good for my physical health through exercise like that. So, I do try and focus on walking so I, you know, try and do ten thousand steps a day, probably averaging about eight, eight and a half thousand at the moment. I don’t do as well as I should, but just make sure that I, you know, go and walk round the park and…but I’ve got less adventurous about where I’ll go walking and fearful of it.
And what about in terms of the lung and the kind of asthma type symptoms how do they impact you day to day?
Funnily enough, I mean, it doesn’t…interestingly, I don’t worry about that, I mean, there have been occasions where I’ve been short of breath when I’ve been climbing hills but, you know, going uphill weirdly the…I’ve just recently started going back to the theatre to see…music and theatre and so on, and I feel incredibly self-conscious about coughing [laughs]…and whether it’s because you just think everyone’s going to think he’s got Covid, what’s he doing here, you know? So that… and of course if ever you try and suppress a cough, it, like, makes you want to cough…So I’ve…I have felt, you know, just talking about it now, it’s making me want to cough. You know, that awful feeling of being in a crowded place with other people, most of whom are not wearing masks and thinking I don’t want to be that person who coughs, you know? Everyone’s going to look daggers at me and think I’m some super-spreader, you know? So, it’s…that’s interesting, it’s…you know, I have enjoyed my visits to the theatre but that’s definitely a feature of them.
Grayson said it is important that people with Long Covid were not left to “fend for themselves”. He thought hospitals and GPs should have special Long Covid clinics.
Grayson said it is important that people with Long Covid were not left to “fend for themselves”. He thought hospitals and GPs should have special Long Covid clinics.
Is there anything that you’ve sort of noticed about the way the current healthcare system is operating that you think could be improved or needs to change specifically in response to caring for and treating people who’ve got ongoing symptoms?
Yeah, I think it is so widespread that I think it does justify creating some specialist services for them. Because it turns up in slightly different forms and we’re…you know, we’re going to need to do research, we’re going to need to look at drug treatments, we’re going to need to look at finding a way of reliably, if such a thing is possible, reliably sifting out of things that people like me might think are Long Covid and actually they’re not, they’re this thing over there, so let’s focus on things that we can track it back, we can sequence it back to something that happened during Covid. And…and I think, you know, both hospitals and primary care need to think about having, you know, either clinics or services that are specifically about that.
Because there’s going to be…there are so many people coming in under that umbrella, you know, they need to think about that. And…and they need to…particularly in primary care, where for a lot of people it’s probably just reassuring them and monitoring them, they need to do a bit of that, not just make people leave… they’re left to fend for themselves…
Well, that’s Covid, we don’t really understand that. That…give it time, it might clear up.
Which is sort of been one level of response, or hang on, I can’t nail this down with a diagnosis and a drug that I then have to give you, so either it doesn’t exist or it must be something else, you know? Let’s…let’s be free enough to say you have to be professionally curious about this, it’s something we don’t know a lot about, we probably need to construct some services trying…to try and understand it better and to cope with the number of people who’ve got it.
Grayson said the NHS111 nurses that he spoke to helped to calm him down and explained when he needed to go to hospital.
Grayson said the NHS111 nurses that he spoke to helped to calm him down and explained when he needed to go to hospital.
Finally just talking about the quality of care that I received, during the Covid itself it was very frightening. You can’t see a doctor but once you get told how to get beyond the initial one-one-one response, they give you a code so that you can get in and get past the person who triages whether you need to speak to someone and actually eventually you get to speak to a nurse. Usually, a nurse will ring you back. And they were very good, the people that rang me back, the nurses, they…they could help calm me down and talk you through your symptoms and tell you this is when you need to go to hospital, if this happens you need to go to hospital. So, all of that was good and using the oxygenator measure was good and that helped me to know…I knew when that went to a certain point that I had to…had to call for an ambulance.
The GP was good as well. There was obviously links in one-one-one and the GP and the GP did a follow-up call to me the day after I’d had a consultation with 111, so they obviously were linked and that was, you know, it was at the height of it, so it was impressive.
When Grayson and his wife became ill with Covid late in 2020, thousands of people were dying or in hospital. Feeling so vulnerable was “very frightening” and a “big scare” that it was difficult to recover from.
When Grayson and his wife became ill with Covid late in 2020, thousands of people were dying or in hospital. Feeling so vulnerable was “very frightening” and a “big scare” that it was difficult to recover from.
I was very fearful of going to hospital because the hospitals were full.
At the same time, as I say, my wife became ill so the pair of us couldn’t…couldn’t look after each other. She was extremely sick. She had to go into hospital briefly and when I rang up sort of the first of January to on the advice of one-one-one, we rang for an ambulance, and we were told there’d be an eight-hour wait for an ambulance. So, I had to drive her with a temperature of something like a hundred and three to hospital and leave her in a queue outside in the freezing cold at A&E. It was a sort of, you know, like apocalyptic scene.
It was at the height of the Kent variation and the height of the problems with hospitals, and it was kind of you know, it was frightening. So apart from the symptoms, the other part of it that was very predominant was the fear because…the fear of the unknown, the fear of having to go into hospital and fear of dying.
You know, each day at that point there were nearly a thousand people dying and something like thirty-eight thousand people in hospital and being one of those people and being surrounded by media talking about it meant the psychological impact of that was…was very, very frightening, and for someone such as myself who had never suffered serious illness, you know, I didn’t feel well equipped to deal with because I’d never been seriously ill and my wife having the same thing at the same time, there was no one able to come into the house to help us. Our teenage son also got it.
So just the practicalities of getting food and getting people to drop stuff off for us, it was…it was horrible, it was frightening.
Yeah, so…so I think a combination of the psychological impacts of uncertainty and death and fear and everything that’s around you and the fact that medical science at the moment doesn’t have all the answers to any of this, which compounds that. And having been physically fit for a long time in my life, to have that experience of feeling so vulnerable was very frightening and that…and that feels like that’s going to be a lasting impact, I think, you know? It’s been a big scare and I still don’t think I’m fully, you know, recovered from that…from that scare. I think it’s affected my physical confidence and my sense of being indestructible and all of those things that of course we’re not.
Grayson described Long Covid as an accepted fact although “everybody says we really don’t know much about it.”
Grayson described Long Covid as an accepted fact although “everybody says we really don’t know much about it.”
What’s your sort of general sense about the general public’s understanding of and attitude towards the idea of Long Covid? Have you had any experience of that?
I definitely think it seems to be an accepted fact that it exists. I’ve not had somebody say to me, oh, it’s a load of old rubbish, and it doesn’t exist. It, you know, it’s part of the general conversation. Nobody says, Long Covid, what’s that? No, I don’t believe in that. People say, oh, it’s really interesting, isn’t it? And my friend had this, this happened to them, and my dad still feels like this. So, it’s there as a kind of a real thing, nobody’s suggested to me that, well, you know, that’s a load of rubbish. Admittedly I don’t know many Covid deniers or anti-vaxxers, so, you know, maybe in that community there’s a bit of denial going on, but yeah, it seems it’s one of those things that, say you know, accept exists and everybody says we really don’t know much about it, do we, you know? There’s going to be loads to come out on this that people understand.
Grayson wanted doctors to be “professionally curious” about Long Covid. Because Long Covid is still “relatively uncharted territory”, he said “it’s OK to say you don’t know”.
Grayson wanted doctors to be “professionally curious” about Long Covid. Because Long Covid is still “relatively uncharted territory”, he said “it’s OK to say you don’t know”.
Are there particular messages or advice that you would give to healthcare professionals, particularly those who are working with people who have ongoing symptoms, post-Covid infection?
I think to be professionally curious. A doctor’s normal instinct is to analyse and diagnose, and…or rule things out, and say, well, it’s not that, it’s not that, it’s not that, and I think what… we’re into relatively uncharted territory, I think it’s really important for health professionals to be humble enough to say they don’t know and say that’s really interesting, we need to keep an eye on that.
And not feel they have to solve everyone’s problem by saying, well, the solution to that is take this drug or do this exercise or do this treatment, because actually they don’t know [laughs]. And… and it’s okay to say you don’t know.