Puppies and Kittens

Today is International Long Covid Awareness Day and it seems appropriate that I have seen absolutely nothing on the subject. I only know about it because it was mentioned by the occupational therapist running the online Long Covid seminar I attended earlier. I attended the seminar because I have Long Covid as did everybody else there and there was no need to raise our awareness of it because believe me, we are very aware. But it seemed like a good moment to share some thoughts about it and thus here we are.

I’ve had Long Covid on and off for two years now and I am still getting to grips with it. I developed it, I think, for two reasons. First of all, because the first time I had Covid I worked my way through it instead of resting. And secondly, because I have a history of Glandular Fever (aka mono, for those in the US) which has been lurking in my system for decades, ready for a reboot like a film franchise from the 1980s. My Long Covid is not as severe as some, but it is persistent, probably because I keep getting Covid over and over long after it has outstayed its welcome, also like a film franchise from the 1980s. (I have had Covid five or six times.) I know of people who need to use wheelchairs, people who are in constant pain, people who have developed heart disease or epilepsy. I have none of these things. I only have fatigue, weakness, dizziness, heart arrhythmia, kidney issues, arthritis, hypotension, eye problems and difficulty swallowing. It could be worse. But boy could it be better.

Over time I am learning more and more about managing my condition. I’ve spent much of the last two years in a boom-and-bust activity cycle where I did too much when I felt up to it and then crashed and burned in a spectacular fashion. That was unsustainable, so I followed it up with what I called the “life exclusion diet” which involved doing nothing at all and thinking that once I had recovered my energy I could layer stuff back in without getting those post-activity crashes. But that didn’t work either. Partly because by doing nothing you start to atrophy, and so when you do then take activity again it takes much less of it to tire you out; and partly because there is no no-crash option. There will always be fatigue after you do things; the key is to figure out a workable (for you) cycle of moderate (for you) activity followed by tolerable (for you) fatigue.

I’m saying “for you” because the key is to figure out what your own window of optimum activity is, without comparison to anyone else. There was one woman in the seminar today who was proud of having been able to sit up for ten minutes in her wheelchair watching the birds in her garden. There was the man who had tired himself out from doing a nine mile walk in the Peak District. She shouldn’t be doing what he is doing, obviously, but neither should he go from that to thinking he should only be trying to sit up for ten minutes. You need to work within your parameters. I’m still figuring mine out, but I’m relieved that I don’t need to aim to not feel unwell after doing things. Because that was impossible, and every time I did feel bad it made me worry that I shouldn’t do anything at all. It’s still frustrating, but it’s a happier prospect to figure out what matters to me and what to prioritise, rather than thinking that I’m doing myself harm by wanting have a life that I enjoy.

It seems to me that we are pretending to live in a post-Covid society now, that it’s no big deal and not much worse than a bad cold. But Covid is still killing people, and it is still leaving people with reduced capacity, from mild to incredibly severe. I know I’ll sound like something out of a bad horror movie (maybe a 1980s franchise?) when I say you could be next, but you really could be next. So please, if you feel unwell, take a Covid test, and if you have Covid, stay home if you can to avoid passing it on, and rest. Rest more than you think you need to. While you are ill, and for a couple of weeks afterwards, even if you think that you are fully recovered. It may seem excessive but believe me you’d rather have a few weeks of reduced activity than a few years.

Oh, and seeing as you have read this far:

Finally, a few words about Substack. You may not be aware of the Substack controversy of recent months, but essentially it is becoming increasingly clear that their business model is to host newsletters from people who would be banned elsewhere - newsletters filled with disinformation and worse, including actual self-identified Nazis - let these newsletters charge their readership, and take a cut. All in the name of “free speech”. Find out a bit more about it here. So basically I’ve discovered that my free newsletter is being subsidised by anti-vaxxers and white supremacists. Cool cool cool. So this means that I really want to move my newsletter elsewhere, but I haven’t yet, partly because I’m not sure which other newsletter hosting sites do or don’t also accept Nazis. Please bear with me on this one.