Tom

Age at interview: 52

Brief Outline:

Tom lives with his wife and now works part time as an IT consultant. He describes his ethnicity as white. 

Many months after having Covid, Tom still has brain fog and ‘crippling’ fatigue. He has had to make major changes to his life and his work. The health system was slow to recognise his condition. He identified a real need for specialist Long Covid clinics in his area. Tom was interviewed in August 2021.

More about me...

Before he was ill with Covid, Tom had a demanding job and managed a large team. He really enjoyed his challenging job and had a very good memory. He had never been seriously ill before and never had a day off for illness.

In March 2020, Tom developed symptoms after sharing a taxi with someone who developed Covid. He didn’t feel particularly unwell and was able to keep working. After a month, he felt he had recovered, although he still had some tightness in his chest and a bit of a cough which lingered for the next few months. 

In September 2020, Tom was suddenly hit with crippling fatigue and brain fog. He tried to struggle on but had to be signed off work for five weeks. Although he didn’t feel better, he wanted to return to work, initially on flexible hours. He found he wasn’t able to continue with his mentally demanding job and started part-time hours. He has been given very good support by his employer. He says they have been ‘superb’ from the beginning

Tom describes his illness as ‘life-changing’. His crippling fatigue affects his memory and concentration. He can only work for short periods and is about to give up work completely to focus on getting better. He usually feels fine when he first wakes up, but any mental (or physical) exercise triggers his fatigue. He often is struggling by midday. If he tries to push himself through his fatigue he gets worse and can experience complete memory blocks. He has learnt he needs to stop and rest as soon as he feels tired so he can keep functioning. Learning to ‘pace’ is ‘the single best piece of advice’ he’s been given. 

He has felt well supported by friends, family and work, but said his GP was limited help. He recognises that the health service is under strain and Covid is ‘new’, but he has had to ‘push’ to get medical help. He felt some doctors were nervous about labelling his illness Long Covid. He feels lucky to have been able to access private healthcare through work. He’s seen several specialists and had investigations which ruled out other causes for his symptoms. A respiratory specialist said he ‘didn’t believe in Long Covid’. After more tests, a neurologist confirmed his Long Covid diagnosis. The best source of information was an occupational health worker who was ‘really on the ball’. She pointed him to useful sources on how to pace himself. He is gradually able to do more physical exercise but too much brain work still ‘wipes him out’. 

He is conscious that Long Covid can take different forms and is aware there is huge variation in how individual GPs respond to patients with Long Covid.  For him, the lack of medical support whilst his life has been ‘turned upside down’ by Long Covid has been very difficult. He sees a real need for a specialist Long Covid clinic in his area. 

Five months after he thought he had fully recovered from Covid, Tom was suddenly hit by crippling fatigue and brain fog.

By the time I got to the middle of April, then, I considered myself to have fully recovered, and the definition of full recovery then was, I had a bit of a cough left, which I've never had before, and an occasional tightness of chest, but that was it. April, May, June, July, August, all passed, there was no issues, you know, the cough started to, you know, was going away, there was still just a tiny remnant of it. But then I got to the, September, and from nowhere, I was hit with this absolutely crippling fatigue. The term brain fog, I think it’s a kind of fabulous couple of words that can describe a whole kind of plethora of conditions. But, you know, it absolutely fits for, for what I suffered from, or am suffering from. I tried struggling through it, failed miserably, you know, I've never taken time off work before, but I ended up being signed off for five weeks.

Tom’s symptoms had been “life-changing”. Physical or mental exercise triggered his fatigue. It affected his memory and his ability to concentrate.

So, for me, it’s been really quite life-changing. And in terms of the, 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 in a normal working day, because my work, my job does involve a lot of mental exercise. I’ll get to about noon, and I'll start to struggle, I’ll start to struggle quite badly. and if I can continue past that point of struggling and keep going, I’ll get worse. Which then has a knock-on impact, not only for the rest of that day, but for subsequent days. And, when I feel tired, it’s weariness, it is fatigue, it’s not just I'm, 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. 

Tom has learnt not to fight against his fatigue and brain fog because it sets him back and causes major memory lapses.

So, a couple of weeks ago, three weeks ago, I went to the, the first time in a year and a half, I've actually left home for work. I went to an all-day workshop. Very much on the understanding that, you know, from my employer, that if it became challenging, I could just leave. But I viewed it almost as a test, I wanted to see what I would be like. So, it started at eight thirty in the morning. By the time I got to about one o’clock, I was struggling really badly. By the time I got to, about four o’clock, I was of no use to man nor beast. Apparently, it finished about six o’clock, and then I left. I know that because I was told that subsequently, because I can’t remember. And I certainly couldn’t tell you what happened the day after that, that Friday, no idea. It was just, well, my first kind of conscious recollection, really is, waking up on the Saturday morning, having completely lost the day before. Apparently, all I did was, kind of, sleep, and doze, and rest. So, if I sum all of that up, as I say, I, kind of the lesson I've learned, or the mistake that I made at the start, was thinking that, you know, if I can manage four hours today, well I’ll push myself, and then maybe tomorrow, I can manage four hours and ten minutes, and I’ll push myself and maybe the day after I can manage four hours and twenty minutes. That was the absolute worst thing to do.

What works is, you know, I've been working for a period of time and I'm feeling tired – stop, you know, rest. And if I, if I've got a meeting at four o’clock in the afternoon, you know, I'll work, I’ll start work in the morning as usual, I’ll work to the point that I'm tired, I’ll go and lie down for a couple of hours, if I can get some sleep, all the better. And then I'll be, be able to function. Because, if I keep working through, a complete waste of time, me attending anything. So, it’s as I say, the absolute lesson that has worked is that don’t fight against it, because you're not only going to be, you know, kind of be useless today, you’ll be useless tomorrow and the day after, and maybe the day after, depending how far you push it. When you see the signs, ease off, rest, and kind of manage the energy levels that I've got.

After five weeks, Tom was seeing benefits from attending a council-run exercise programme for people with chronic fatigue syndrome.

So, I mean, I never actually, I probably should have mentioned this. Another example of something I've been referred to. So, live in [City in Scotland], and here, there is a, so it’s, it’s a targeted, six-month targeted exercise programme, it’s run by, the Council’s local led body through their gyms. But it requires medical referral to get there. So this is me going back to managing my GP. So, I kind of found out this thing, it’s called, [name of initiative], I found out it existed, CFS is one of the conditions that they look to support. So, I went to the gym, got the form, took it to my GP, and said, could you please fill this in for me. Took the referral form, went back, and got myself on that, about five weeks ago, now. And so, is that helping? It’s not, not helping, but it’s, you know. So, three times a week, I’ll go to the gym and do light exercise against a certain kind of, you know, CFS tailored programme for an hour. And the first time I did it, when I got home – this was early July – and, and to quote my wife, “I thought you were drunk”. And it was just, it was, it was an hour of very light exercise, it had completely wiped me out. You know, today, it’s only five weeks later, and I'm doing more exercise, you know, each time I go, than I did then, and I’ll get home and my legs might be a bit sore. So that is, as I say, it must be helping, because I can do more exercise, physical exercise, than I could five weeks ago, with nowhere near of the same impact, as a result.

 

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

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. 

Tom said he appreciated the pressure the NHS has been under during the pandemic but said the lack of medical support had been ‘galling’.

And the second thing, again, and 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. so if there were, a way that, you know, in Scotland, we could look to replicate, you know, the concept of the Long Covid clinic, or create something that allows people with this condition to get help, rather than adding yet another thing onto the big, long list of things that GPs need to think about, then I would have thought, that has to be a better, more effective, more efficient way of supporting, kind of this condition, and, you know, sort of what I've experienced so far.

And going back to my kind of qualification about the medical context. It’s, well the Health Service is obviously quite strained, just now, Long Covid is obviously something that’s all brand new. So, I don’t, you know, I'm not casting any kind of note of complaint or anything, kind of, at my GP. My GP has been pretty useless.

That’s not, I don’t for a second think that’s their fault, you know, they’re put in a very unfortunate situation of, kind of, too much to do, and this new Long Covid thing, they don’t know what it is, and they just, you know, I'm not dying, so they don’t seem to have the time to spend with me you know, I'm aware of the Long Covid clinics that exist in England and that we don’t have the equivalent up here [Scotland], which is a real shame. so, you know, I got to see a respiratory specialist, because I pushed to see a respiratory specialist. I got to see the neurologist specialist, because I pushed to see a neurologist. My, you know, the…as I say, other than writing a, physically writing the referrals, and physically writing the sick line for me, back in September, I've had nothing from my GP. 

So no advice, no information…

Nothing at all. If, if I…

…no follow-up to see how you are…?

No, not a thing.

So, without your medical insurance at work, and the, being able to go for tests, you would probably have felt quite abandoned by the Health…

Absolutely.

Tom had been able to see specialists using private medical insurance through his work. He had mixed experiences with the specialists he saw but praised the occupational therapist that he had been in touch with through work.

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.

Tom hadn’t looked for peer support online. He tends not to join forums or discussion groups, but he does lots of Google searches to find information.

So, in terms of information, have you been in contact with any of the support groups, then, for Long Covid?

No.

No? And is that, do you think any of those would be at all helpful, is it…?

It’s not something I've considered, but that’s probably more just me being me. You know, I tend to kind of internalise things, and then kind of, you know, come up with a cunning plan myself, rather than engage with support groups. It’s not something I've ever done before, and I…is there a reluctance to do it? Probably a passive reluctance, rather than an active reluctance. You know, it’s just not something I would consider doing, rather than something I would be set against.

Yeah. And in terms of other information about Long Covid, have you picked up quite a bit from different parts of the media, or from elsewhere?

So, from the media, from lots of Googling. again, it’s, because it’s a far better understood condition, you know, where, anytime I do search and try and track things down, I always seem to land on ME or, kind of, CFS support sites, and stuff, rather than anywhere else.

So, I've never actively engaged with anything, I don’t join forums, or you know, discussion groups. But I’ll happily pull off every piece of information that they publish, and go through it and see, you know, what I think may work for me and what won’t.