{"id":3116,"date":"2025-11-23T19:59:21","date_gmt":"2025-11-23T19:59:21","guid":{"rendered":"https:\/\/www.uncharted-worlds.org\/blog\/?p=3116"},"modified":"2025-11-23T19:59:21","modified_gmt":"2025-11-23T19:59:21","slug":"marking-an-anniversary","status":"publish","type":"post","link":"https:\/\/www.uncharted-worlds.org\/blog\/2025\/11\/marking-an-anniversary\/","title":{"rendered":"Marking an anniversary"},"content":{"rendered":"

Covid and its aftermath, three years on.
\n<\/em><\/p>\n

Long time no blog.\u00a0 I’ve been busy!<\/p>\n

I wanted to mark a third-anniversary.\u00a0 It was in October three years ago, 2022, that covid got to me, after a couple of years where I’d successfully evaded it.<\/p>\n

This is to reflect on the illness, the slow journey of mostly-recovering, and the nature of that time.<\/p>\n

Weirdness begins<\/h2>\n

The initial couple of days weren’t too bad for me:\u00a0 mostly a gigantic tiredness, and some headaches.<\/p>\n

Then a few days in, weird stuff started happening.\u00a0 My heartbeat was suddenly all over the place, skipping beats, fast and slow.\u00a0 Scary!<\/p>\n

As I started to gently potter about doing things again, I\u00a0noticed there seemed to be a kind of time limit on how long I could be out of bed.\u00a0 After a bit, I\u00a0would feel increasingly bad, and then lying down again brought relief.<\/p>\n

The “bad feeling” wasn’t nausea (although I did sometimes have nausea too) – it was something else.\u00a0 I\u00a0never did put words to a really good description of it, other than “bad”.\u00a0 But it sort of reminded<\/em> me of nausea in the way that it would subtly build up over time.<\/p>\n

Discoveries and realisations<\/h2>\n

One day, maybe a week or so in, I noticed that my heart was also beating strangely fast when I was upright – like 120bpm just standing still, when a normal level for me would be more like 80.\u00a0 And it clicked:\u00a0 this is some version of PoTS, Postural Tachycardia Syndrome.\u00a0 That explained the big difference between how I felt standing up and how I felt lying down.<\/p>\n

Explanation:\u00a0 You know how, when you stand up, your blood vessels have to readjust their pressure, so that you have enough blood coming to your head and you don’t faint?\u00a0 Well, if that process starts going wonky, your body will cleverly try to compensate for the low pressure by making your heart go really fast.\u00a0 It’s a way of slightly increasing the supply when the blood vessels can’t quite do their job.<\/p>\n

In other words, the fast heartbeat isn’t the actual problem:\u00a0 it’s an incomplete compensation for the problem.\u00a0 Or, from the point of view of diagnosis, it’s a telling symptom.<\/p>\n

Postural refers to the standing-up, Tachycardia means fast heartbeat.\u00a0 “Standy-uppy Fast-heart Syndrome” haha\u00a0:-)<\/p>\n

(For a lot of people, it takes them or their doctors ages to figure out that this is what’s ailing them.\u00a0 It’s not super well known.\u00a0 But I’d heard of it already, just from knowing disabled people and reading disability-politics stuff.\u00a0 I\u00a0think I had even heard already about people getting PoTS for the first time along with covid – which I know now is pretty common.)<\/p>\n

A more general term for problems with standing up is “Orthostatic Intolerance”.\u00a0 And a term for the underlying problem is “Dysautonomia”, i.e. automatic processes not working properly.<\/p>\n

Technically it wasn’t PoTS until I’d had it three months<\/a> – or, depending on which framework you go by, six<\/em> months.\u00a0 So, in the interest of accuracy, at first I would sometimes refer to it as “a PoTS-alikey thing”\u00a0:-)<\/p>\n

Having identified the pattern, I\u00a0looked into whether it was likely to wear off, or whether I’d be stuck with it.\u00a0 I\u00a0found a research paper on PoTS which said that 5 years in, 50% of people have recovered:\u00a0 not super-encouraging odds.<\/p>\n

I remember thinking about how my music computer setup was now nicely optimised including a standing desk, and wondering whether I’d eventually be able to use that setup again, or whether I’d have to reorganise that area of the room, or indeed only do music from bed.\u00a0 I\u00a0remember wondering if I’d still be able to manage public transport, maybe with a portable stool for waiting at the bus stop, or if travelling around independently was now going to be beyond me.<\/p>\n

A theory<\/h2>\n

Pretty soon – as I wrote about at the time<\/a> – I developed a hopeful theory.\u00a0 There’s some evidence that at least some<\/em> versions of PoTS are caused by autoimmunity problems.\u00a0 It might be that your own immune system mistakenly attacks some of the signalling molecules which are meant to transmit the “standing up now, readjust” messages to your blood vessels, so that the messages don’t get through.\u00a0 Or something like that, anyway.<\/p>\n

In favour of this theory being applicable to me was also having my first ever (and still only) episode of hives<\/a>, the day I first went outdoors after becoming ill.\u00a0 My skin suddenly looked and felt as though I’d been stung by an insect, but there was no insect!\u00a0 And hives is also<\/em> an “immune overreaction” thing.<\/p>\n

So then my theory was that, maybe after about three months, when the viral remnants had been cleared, my immune system would calm down, the signalling would start working again, and the PoTS would cure itself.<\/p>\n

That three-month timeline, I had guessed based on info that I’d seen in the context of “Polymerase Chain Reaction” testing – the type of covid test that you could get in a lab.\u00a0 PCR tests carry on giving you positive results after you’re not infectious any more, and it’s because they find remnants<\/em> as well as active virus.\u00a0 These explanations said that 90 days (or some sources said 60 days) is about how long the viral remnants typically hang around, so that those kinds of tests aren’t useful for a fresh result within that time.<\/p>\n

Work-arounds and “life goes on”<\/h2>\n

Meanwhile, I read up on classic self-help things for PoTS<\/a>.\u00a0 In the mornings, I\u00a0would drink juice and eat salty things in bed for a while, to mitigate the worst effects before I tried standing up.\u00a0 That did seem to help a bit.<\/p>\n

Nearly all the work I did during those months, I\u00a0did on my laptop lying in bed.\u00a0 I\u00a0even worked out a way to practise facilitating a group online<\/a> while lying on my side, with my laptop propped up sideways.\u00a0 Well, I\u00a0was “the right way up” on the camera!<\/p>\n

I personally never fainted from the standing-up incapacity, although some people do.\u00a0 I\u00a0would just feel gradually worse and worse until I lay down again.\u00a0 I\u00a0could do about 10 minutes standing, or 15 to 20 sitting up in a chair, before “the bad feeling” got too much.<\/p>\n

As I began to recover from the sheer exhaustion of the initial illness, I\u00a0experimented with going for little walks.\u00a0 That was a bit more viable than standing still.<\/p>\n

This difference is a known thing with PoTS.\u00a0 It’s because, when you walk, the activity of your muscles gives a little bit of pumping-help to the circulation of blood.\u00a0 Standing still, you don’t have that muscular activity, and so your heart accordingly works its hardest then.<\/p>\n

(Or to be precise:\u00a0 the heart works hardest to compensate if you stand up and<\/em> then lean against a wall, because that position minimises even the slight muscular movements involved in keeping your balance.\u00a0 There’s a test for PoTS which you can do at home, the “NASA Lean Test”, which involves leaning against a wall for ten minutes and tracking what happens to your heartbeat. \u00a0Here’s a PDF explaining how to do the test<\/a>.)<\/p>\n

This meant that the worst part of trying to go anywhere was any time I had to wait in a queue, like at the bus stop for instance.\u00a0 I\u00a0did take to carrying around a little seat.<\/p>\n

Some ups and downs<\/h2>\n

One night, my heartbeat dipped to about 35bpm, with big thonky beats.\u00a0 I was thinking, “this seems bad, I wonder if I need to go to A&E, I hope I don’t need to because that would be a lot of bother” :-)<\/p>\n

I searched on dysautonomia plus bradycardia (slow heartbeat), and found that other people with dysautonomia had had similar dips from time to time and it hadn’t killed them.\u00a0 After a while, and after some snacks and apple juice, sure enough, it gradually went back up to a more ordinary speed.<\/p>\n

(Maybe I should’ve<\/em> gone to A&E for that one?\u00a0 Still not 100% sure about that.\u00a0 Maybe it was<\/em> bad and I was “lucky to get away with it”.)<\/p>\n

Another time, I actually did end up going to A&E:\u00a0 not because anything especially dramatic was happening, but because I got an earache\/jaw-ache type thing along with the heart weirdness.\u00a0 “Hmm, this is technically a symptom of a heart attack<\/a> – probably isn’t, but I’d feel pretty stupid if I ignored it and I was wrong, I\u00a0suppose I’d better traipse over there”.<\/p>\n

As I’d thought most likely in the first place, it wasn’t<\/em> a heart attack.\u00a0 The earache was probably a separate thing.<\/p>\n

But interestingly, this was the only time, across the months of symptoms and doctor-visits, when a medical person actually measured and documented the tachycardia pattern.\u00a0 They got me to lie down and stand up again, and wrote the results into my records.\u00a0 And then they recommended a web site with info about PoTS.\u00a0 Respect, person in the NHS who has heard of PoTS and knows what data is relevant.<\/p>\n

The turn-around<\/h2>\n

Three months in, my “when the viral remnants have gone” theory still hadn’t come true.\u00a0 Maybe it would<\/em> go on forever.<\/p>\n

But about four<\/em> months in, I\u00a0did start to see signs that the PoTS-ish stuff was wearing off.\u00a0 Imagine my delight when one day, I\u00a0could stand up, and my heartbeat actually just stayed at a sensible 80bpm.\u00a0 Woo hoo!<\/p>\n

It does seem that maybe my autoimmunity theory had been partly correct, and it was only the timeline that was a bit wrong.\u00a0 Maybe the virus remnants had hung around for an extra month.\u00a0 Maybe my body took a while to calm down and reset after they’d been cleared away.<\/p>\n

At that stage, the tachycardia hadn’t yet completely gone, but the episodes did start spacing out, rather than happening every time I stood up.\u00a0 The last one (of that era) was eight months in, and I think was partly triggered by accidentally letting myself get a bit dehydrated.<\/p>\n

(I was nearly ready to post a version of this post which said it hadn’t come back after summer 2023, but then I had another episode of it the other day!\u00a0 possibly due to having recently had a flu jab, which would’ve given my immune system a nudge.\u00a0 Keeping a metaphorical eye out in case it happens again.)<\/p>\n

Energy levels<\/h2>\n

In parallel with all that, covid had wrecked my stamina.<\/p>\n

Ironically, my lively active-travel habits before I got ill had been encouraged partly by pandemic conditions in the first place.\u00a0 The infection risk in 2020\/2021 had put me off going on the bus, and instead, I’d been doing a lot more cycling.<\/p>\n

By the summer of 2022, I’d gradually worked up to the strongest and most energetic I’d been in over a decade.\u00a0 I\u00a0could cycle about 10 miles in a day – though I would be tired after that, and not want to do it again the next day.<\/p>\n

Covid stole that.<\/p>\n

I remember the first time afterwards that I tried to gently walk as far as a mile.\u00a0 I\u00a0had to sit down three times on the way and rest.<\/p>\n

Picking back up from that knocked-down level took many months.\u00a0 There were times when I would set out on a walk, and absentmindedly stride out in “my normal rhythm” from before, only to start feeling rubbish half a minute later.\u00a0 I\u00a0learnt to tell myself:\u00a0 walk slow, walk slow.<\/p>\n

In certain types of energy-limiting illness, there’s a thing called post-exertional malaise<\/a>, PEM, which is really important to avoid.\u00a0 PEM isn’t just exhaustion:\u00a0 it’s when the amount you’ve overdone it actually does damage and makes you iller.\u00a0 Because of the risk of that, I\u00a0knew I shouldn’t push myself<\/a>.<\/p>\n

In retrospect, I’m not 100% sure (a) whether I avoided PEM by caution, (b) whether I did have a mild version of it a few times, or (c) whether my variety of Long Covid never actually was that kind anyway.\u00a0 There certainly were times when I was ill and exhausted the day after some exertion, but I never felt so<\/em> terrible, or so<\/em> knocked-backwards in my convalescence, that it was conclusively PEM.<\/p>\n

While all that was going on, I\u00a0was wary of cycling anywhere, in case I suddenly tipped over into feeling too ill to ride, and then had the predicament of how to get the bike back home!\u00a0 Walking was logistically less risky, because I knew that if I really got myself in a pickle, I\u00a0could call a taxi.<\/p>\n

When I did eventually get back to the bike, around early 2024, it was a whole other reminder of how much I had lost.\u00a0 Gradients I used to cycle were back to a slowly plodding “get off and push”, or simply impossible.<\/p>\n

Now<\/h2>\n

It was in the early summer of this year, 2025, that I finally got back properly to bike-riding, and (a bit later) back to roughly the same amount of biking stamina as I’d had in the summer of 2022.\u00a0 I can do 10 miles in a day again now – or at least, I can on a good day.\u00a0 So on that front, I’d say it took around 2\u00bd years of gradually working back\u00a0up.<\/p>\n

I do still get subtle dysautonomia-weirdness from time to time, where my body doesn’t feel quite right in its ability to self-regulate.\u00a0 And\u00a0sometimes when I’m doing a fiddly task, like knotting a thread-end when I’m sewing, especially if I’m a bit tired, my fingers tremble – which didn’t used to happen.<\/p>\n

I still misjudge my energy levels sometimes as well, both physical and cognitive.\u00a0 There was a pattern I noticed last year where I would feel lively in the morning, and think of all the things I was going to do, and then mid-afternoon I’d be wiped.\u00a0 It’s a lot less now, but I still get surprised every now and again by exhaustion that I hadn’t predicted.<\/p>\n

I also have, it turns out, a little bit of heart damage, diagnosed by a scan during the time when my heartbeat was doing such weird stuff.\u00a0 It’s officially not a big bother according to the doctor.<\/p>\n

As my heart had never been scanned before<\/em> I had covid (because I never ever had any trouble with it before covid!!), it remains unknown whether covid did the damage, or I already had it all along.<\/p>\n

A bit similar, I know my memory isn’t as good now and I make more cognitive mistakes – but it’s not really possible to attribute that to a singular cause.\u00a0 Could be old age.\u00a0 And there isn’t really a neat dividing line between covid and old age, anyway, because part of what the research says is that covid accelerates brain aging.<\/p>\n

Counting the luck<\/h2>\n

I was lucky.\u00a0 Some people<\/a> have much worse brain-consequences as part of their covid illness.\u00a0 Some people have much more lasting and drastic limitations on their energy or physical capacities.\u00a0 And of course, some people die of it.<\/p>\n

I did have a massive wave of dismay and distress when I realised what had hit me, and how not-guaranteed was recovery.\u00a0 But I started strategising, as well.\u00a0 If I don’t recover at all, what would I still be able to do?\u00a0 What can I do in the meantime?\u00a0 What will help?<\/p>\n

It seems to me that kind of resilience-thinking is also a kind of luck, or comes<\/em> from luck.\u00a0 I’ve had a life which hasn’t knocked that out of me.<\/p>\n

I’m lucky to have beem able to recover from the PoTS element, considering how many people don’t.<\/p>\n

The worst of the heart arrhythmias ebbed away over about the same time span.<\/p>\n

Even while I was still quite ill, I\u00a0recognised my luck in having flexible work and some practical support at home, and not having to push myself physically beyond what felt safe.<\/p>\n

I appreciated the blessing of already having a laptop, and already having an angled table enabling me to prop it up over me in bed!\u00a0 (I’d got the laptop a while back – secondhand – as a means of running Dragon, for which I needed Windows again after some years primarily on Linux.)<\/p>\n

As I started to recover a little, a kind friend came by a few times with a car, and took me to a park where we like to walk – where previously I would have got to under my own steam.<\/p>\n

For someone with a serious illness, honestly I had a pretty good quality of life throughout.<\/p>\n

Counting the cost:\u00a0 lost opportunities<\/h2>\n

And at the same time… that illness cost me a lot.\u00a0 Two-and-a-half years with far less walking\/ dancing\/ cycling\/ strength-training than I would otherwise have done.\u00a0 Hundreds of hours when I could have been doing writing or recording or making cool stuff happen, and instead I was just exhausted in bed.<\/p>\n

In writing this, I’ve contemplated how massively expensive that was in terms of what I would have liked to be doing instead.\u00a0 In a way, I\u00a0think I was slightly in denial for a couple of years, with my resilient glass-half-full “well I can still do this<\/em>“.\u00a0 Taking in the whole catalogue… oof.<\/p>\n

How much do I not<\/em> want all that again?<\/p>\n

A lot more than I do<\/em> want most<\/em> things.\u00a0 Most risks aren’t worth the risk, set against another round of that.<\/p>\n

And there’s every reason to expect that if I caught it again, it would go like that again, or worse.\u00a0 (Or at least, that’s the situation until there are vaccines available against your own body overreacting.\u00a0 There is some research into that<\/a> – very interesting.)<\/p>\n

Luckily there is still tons I like to do that isn’t very risky in covid terms.\u00a0 And I have directed a large amount of my geeky curiosity towards the science of air quality, filtering, transmission dynamics, measurement<\/a> and testing, so I’m pretty good at the risk-mitigation now\u00a0:-)<\/p>\n

Counting the cost, socially<\/h2>\n

From one perspective, I don’t feel this episode made me socially isolated.\u00a0 Nowadays, quite a lot of my work and learning is online, either written or over video calls:\u00a0 inherently no transmission risk, and usually no particular reason to mention it.\u00a0 I’m sure I’ve met numerous people over Zoom in the last year or two who have no idea about any of this backstory.\u00a0 Just doesn’t come up.<\/p>\n

On the other hand, even when other<\/em> people don’t know, I<\/em> know.\u00a0 I\u00a0don’t necessarily out<\/em> myself everywhere, but I\u00a0know that I’m out of step with “the average person”, and the world as reflected in most media.<\/p>\n

“Covid is over.”\u00a0 “It’s mild now.”\u00a0 “It’s only a concern for vulnerable<\/em> people.”\u00a0 “You can’t expect not to catch it.”\u00a0 “You have to live your life.”<\/p>\n

Even the NHS is hardly bothering with infection control these days (a false economy if ever I saw one).<\/p>\n

In taking seriously the challenge of not being (re)infected, I’ve disjointed myself from that normalised framework.\u00a0 I\u00a0don’t expect everyone to understand.<\/p>\n

It’s\u00a0kind of like a whole other dimension of queerness.<\/p>\n

Funnily enough, my queer networks have been good places on the whole for not feeling alone.\u00a0 A\u00a0lot of bi &\/or trans people are disabled or have disabled friends.\u00a0 At\u00a0in\u2011person BiCon<\/a> this year, I\u00a0didn’t feel out of the ordinary as one of the masking-indoors people.<\/p>\n

And online, there’s lots of opportunity to connect with fellow covid-careful people (of which more below).<\/p>\n

Friendship edges<\/h2>\n

While I was “in the thick of it” with the initial illness, I\u00a0reached for emotional support from various friends, close or more casual.\u00a0 From some, I\u00a0got listening and understanding;\u00a0 with a few, that didn’t happen.<\/p>\n

I already knew that it’s common for friendships to shift or vanish<\/a> when someone becomes disabled.\u00a0 In that sense, I had a way to put the gaps into context.\u00a0 But I have had moments of wishing I’d been better able to foresee who wouldn’t<\/em> be able to meet me there, and just not put that strain onto those particular friendships.<\/p>\n

A friendship which has to route around certain areas to survive can still be worth having.\u00a0 And when you transgress past the territory that someone’s okay with hearing about, you might find out a limit that you can’t unknow.<\/p>\n

(Of course, I might still have tripped over similar friendship-limitations another way.\u00a0 Not everyone can “meet me there” in the practical reality of my life now either<\/em>.\u00a0 So maybe those connections would’ve dwindled anyway<\/a>.)<\/p>\n

There are also some social connections I missed out on while I simply wasn’t physically able for the things where we’d normally cross paths.<\/p>\n

Old friends and appreciating new people<\/h2>\n

On the other hand, I treasure the friends who’ve been able to track with me on the journey.<\/p>\n

And like I did when I first recognised myself as bi, I’ve gone looking for other people in the same world.\u00a0 Some I’ve met or swopped messages with, many I just appreciate their work and that they exist.\u00a0 Tip of the hat to Breathe Easy<\/a>, Julia Doubleday<\/a>, Wayne Myers<\/a>, Dan O’Hara, James Tindall<\/a>, Trish Greenhalgh<\/a>, Deepti Gurdasani<\/a>, Denis<\/a>, Mike Honey<\/a>, Aurel W\u00fcnsch<\/a>, Richard Corsi, Jim Rosenthal<\/a>, 1goodtern<\/a>, Nina Wildflower<\/a>, Yaneer Bar-Yam<\/a>, WHN<\/a>, Ed Yong<\/a>, Ziyad Al-Aly<\/a>, Akiko Iwasaki<\/a>, Danny Altmann<\/a>, Jose-Luis\u00a0Jimenez<\/a>, Linsey Marr<\/a>, Shelly Miller<\/a>, Al Haddrell<\/a>, Marc Johnson<\/a>, Resia Pretorius<\/a>, Chris Pagel<\/a>, Hazel Newlevant<\/a>, Sour Queer Press<\/a>, Kelly @Broadwaybabyto<\/a>, Fiona Robertson<\/a>, Tinu Abayomi-Paul (RIP)<\/a>, The Sick Times<\/a>, Cas Marotta<\/a>, Sheffield Mask Bloc<\/a>, Safe Inside<\/a>, Long Covid Support<\/a>, Long Covid Kids<\/a>, zeroes.ca<\/a>, and all the other people researching, sharing and contributing in this area of science and community.<\/p>\n","protected":false},"excerpt":{"rendered":"

Covid and its aftermath, three years on.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51,12],"tags":[],"class_list":["post-3116","post","type-post","status-publish","format-standard","hentry","category-covid","category-what-am-i-like"],"_links":{"self":[{"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/posts\/3116","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/comments?post=3116"}],"version-history":[{"count":5,"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/posts\/3116\/revisions"}],"predecessor-version":[{"id":3122,"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/posts\/3116\/revisions\/3122"}],"wp:attachment":[{"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/media?parent=3116"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/categories?post=3116"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.uncharted-worlds.org\/blog\/wp-json\/wp\/v2\/tags?post=3116"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}