There’s been an increasing amount of media coverage of people taking a very long time to recover from coronavirus/Covid-19 and reporting a wide range of symptoms, but particularly fatigue. As far as I know, I haven’t had Covid-19– but I have been diagnosed in the past with both post-viral fatigue (on several occasions) and, more recently, with chronic fatigue. So I thought I would write about those experiences in a series of posts, if only to reassure people suffering with similar problems that:
1. It is possible to get better, but it may be a slow and very uneven process, where it’s often frustratingly difficult to see a clear progression back towards how you felt before you got ill.
2. Apart from the fatigue, it seems to be par for the course to have a rather bewildering collection of often slightly vague physical symptoms which vary depending on the individual and can change as time goes on.
3. The stuff outlined at 1 and 2 above is not all in your head, despite what you may think at times and what some people may say or imply (including unfortunately in some cases medical professionals).
4. Whilst there is now greater recognition of the condition amongst the medical profession, the reality is that there are no drugs or similar interventions to cure you or even to help you get better – and it is quite understandable if you are feeling frustrated about that (on top of all the other frustrations – see above).
5. I did get better and there were some things that helped me (more on that in later posts). But my impression is that there’s a lot of variation in terms of how post-viral or chronic fatigue affects people – and what works for one person may not work for all.
What happened to me
I had several episodes of post-viral fatigue in my twenties, followed by a long period of being fine and then an episode of chronic fatigue in my mid-forties. With the cases of post-viral fatigue in my twenties, it took me about 3 months to get better, and I felt the need to be quite careful for at least a year after that. By “careful”, I mean not overdoing it, making sure I got enough rest, taking regular holiday and so on. The chronic fatigue, as you would expect, lasted a lot longer. I was off work for nearly 6 months and then managed a phased return to work, but it was over a year before I was back up to my normal hours. I still feel the need to get more rest than I did before I got ill (it is now over 5 years since that episode started) and I've not felt able to devote as much time to writing (hence the lack of published work since late 2013). And this was, judging from what has happened to other people, a relatively mild case of chronic fatigue.
All my episodes started with symptoms which are fairly typical for a flu-like virus – tiredness, sore throat, swollen glands, muscle aches etc, but these carried on for much longer than you would expect with flu, particularly the sore throat, which persisted for weeks. In the most recent episode - the one which turned into chronic fatigue - I also (weirdly) started to have difficulty swallowing food. I could only manage it in small amounts and couldn’t normally finish an adult portion. This prompted my GP to send me out of the consulting room while he called a neurologist, given that problems with swallowing can be caused by some rather nasty and often fatal brain conditions. Happily it turned out not be any of those and the weird swallowing problem subsided, as did (eventually) the sore throat. That left me with fatigue and an odd collection of relatively mild physical symptoms.
I would describe the fatigue as a lack of my usual get up and go, not feeling refreshed after sleep, generally feeling weary, as if I hadn’t managed to get sufficient rest, and often feeling utterly exhausted after activity (even very mild activity, including just sitting around doing “brain work”). My sleep was also quite badly interrupted. But the fatigue wasn’t consistent. I would have good days and bad days, sometimes even a run of good days which would make me think, “great, I’m getting better” – only to feel worse again shortly afterwards and that I was back at square one. It was never so bad that I simply couldn’t get out of bed – although there were many days when I really didn’t feel like it at all. In that respect, I think I probably got off lightly because there are people who have much more severe physical fatigue than I ever did.
As mentioned above, in addition to the fatigue, I had a weird and wonderful collection of other physical symptoms. None of these was particularly painful or problematic in and of themselves – but I think it’s worth describing them here because I’ve been struck by the wide variation in symptoms reported by people recovering from Covid-19. Mine included slight ear ache, soreness on the sides of the tongue, swollen neck glands, slight muscle ache (mainly in my legs), slight dizziness, light-headedness and a feeling in my chest as if I’d been out for a run (when I hadn’t). It felt as if my body vaguely knew there was something wrong but couldn’t work out what to do about it and was just randomly (and half-heartedly) firing up pain receptors in different places. Overall, this contributed to a feeling of not being my normal healthy self, which doctors generally refer to as “malaise.”
Other sufferers may well have different symptoms from these – my impression is that there’s a lot of variation between individuals. For example, many people also complain of “brain fog”. I don’t think I ever really had that, although I definitely did find that mental activity could be as exhausting as physical activity. For example, I found reading quite tiring (when normally it is something I do to relax) and ending up spending a lot of time listening to the radio/podcasts (thank God for BBC iPlayer).
All in the head?
What with these relatively slight physical symptoms/malaise (they almost felt like the ghost of a “proper” disease) and fatigue that came and went with no clear pattern to it, I did at times wonder if it was just all in my head – and that if I just willed myself to be better, then I would recover.
I remember two particular incidents where this came to the fore. One was where an insurer refused my claim under my employer’s permanent health insurance policy – it felt like they were accusing me of making the whole thing up so I could take time off work. Another was when I saw a psychiatrist over possible depression, who argued that my fatigue was brought on by depression (rather than the other way around) – I felt he was accusing me of being mildly delusional, although I’m not sure he meant it that way. I found both occasions pretty upsetting at the time – even though I can see now that both the insurer and the psychiatrist probably thought they were just doing their jobs.
But these doubts were always there to some extent and I remember developing a rather perverse (and guilt inducing) envy of people with more easily diagnosed conditions which everyone understands (or thinks they do). For example, if you say you have cancer, everyone gets that it’s potentially pretty serious. If you say you have chronic fatigue, well, it just sounds like you need to sleep a bit more. Indeed, to some people it sounds like you could be making it all up (which is not something that would be likely to occur to them if you had a cancer diagnosis – whereas the failure of the medical profession to pin down what causes chronic/post-viral fatigue provides ample scope for people to doubt its very existence). And then I would feel bad for envying people with a condition which was far more likely to be life-threatening than mine.
Anyway, I think it is understandable, in the circumstances, that someone with post-viral or chronic fatigue will have these negative, self-doubting thoughts. But looking back now, from a position where I feel a lot healthier, I can confidently say that it was not all in my head - I was genuinely ill with something, even if the medical profession (sadly) seems unable to reach a consensus on how to explain it (let alone how to treat it).
More on the medical profession in my next post – because as noted above, that side of things is another massively frustrating aspect of these conditions. But the key point about thinking that it’s “all in your head” is this: if you follow that to its logical conclusion, you will probably end up forcing yourself to do more activity than you should, which in turn is likely to tire you out and make things worse not better. And besides demonstrating that it almost certainly isn't "all in your head", it really isn’t helpful at all with your recovery.
Posted by Paul Samael. Posted In : Random thoughts