{"id":2169,"date":"2022-11-18T14:59:42","date_gmt":"2022-11-18T14:59:42","guid":{"rendered":"https:\/\/www.uncharted-worlds.org\/blog\/?p=2169"},"modified":"2023-03-25T19:49:22","modified_gmt":"2023-03-25T19:49:22","slug":"covid-related-uncertainty","status":"publish","type":"post","link":"https:\/\/www.uncharted-worlds.org\/blog\/2022\/11\/covid-related-uncertainty\/","title":{"rendered":"Covid-related uncertainty"},"content":{"rendered":"

Thoughts on the experience of having covid, and the uncertainty of making a full recovery.\u00a0 Plus some science geekery on immune systems and testing.<\/em><\/p>\n

\""Covid-related<\/p>\n

After two-and-a-half years of vigilance and “I’m gonna wear a mask<\/a> even if no-one else is”, covid got me after\u00a0all.<\/p>\n

One of our household went to an event, and, lulled into a false sense of security by the fact that it was outdoors, must have got too close to an infectious person.\u00a0 The other friends they were with that day didn’t catch it, so it probably came via a random person – perhaps in a queue for food and drink, or at the point when it rained, and some people clustered a bit closer under a canopy.<\/p>\n

The first days<\/h2>\n

As soon as we knew covid was in the house, we all made an effort to protect each other by not sharing air.\u00a0 Everyone began wearing masks in the communal areas, and we did a bit of reconfiguration so we could all sleep in separate rooms.\u00a0 We ate in our rooms, we cleaned teeth in our own rooms, and if anyone wanted a shower, we’d have the bathroom windows open for a while before & after.<\/p>\n

Luckily, the weather wasn’t too freezing and we hadn’t yet put the heating on, so we were able to have lots of windows open without running up giant bills.<\/p>\n

That was a weird few days.\u00a0 I\u00a0said at the time:\u00a0 it’s\u00a0like getting a weather forecast that a hurricane is headed for your town.\u00a0 All\u00a0you can do is hunker down and wait and see how close it’s going to come to where you live, and what the damage is going to\u00a0be.<\/p>\n

I’m pleased to say that one person in our house didn’t<\/em> catch\u00a0it, so that shows that our in-house precautions did work!\u00a0 Go\u00a0team.<\/p>\n

But I was out of luck.\u00a0 From the timing, a couple of us must already have been infected before we knew to take the extra precautions.\u00a0 A day or so after the first person, I got really tired and headachy.<\/p>\n

Cancelled or postponed a few things (including the Little Bit Bi<\/a> sesh).\u00a0 Slept a lot, read some stuff online, occasionally got food.<\/p>\n

After the first day or two of headaches, I\u00a0didn’t feel too bad while lying down, though after about 10 minutes out of bed, I\u00a0would gradually start feeling more and more rubbish.<\/p>\n

Heartbeat weirdness<\/h2>\n

Then it got weirder.\u00a0 On\u00a0about the third day, I\u00a0was lying in bed not even doing anything, and out of the blue, my heart started skipping beats and going really slow.\u00a0 Spooky!<\/p>\n

Up till now, I’ve never<\/em> had any heart trouble, and if anything, my general fitness this summer was the best it had been in years.<\/p>\n

Those first few months of the pandemic back in 2020, when I was wary of public transport, had nudged me to get into cycling a bit more.\u00a0 I’d\u00a0kept that up, on & off, and gradually built my stamina.\u00a0 Just recently, I’d\u00a0been noticing how immensely enjoyable it is to zoom up the very same moderately-sloping bit where, back in 2020, I used to have to get off and push\u00a0:-)<\/p>\n

Numbers<\/h2>\n

Back when the covid advice first came out, we’d bought one of those little finger-clip things which you can use to test your oxygen level.\u00a0 Its\u00a0display also shows your heartbeat.<\/p>\n

According to that, my heartbeat was going down to about 40bpm at times.\u00a0 Normal for me would be 80\u2011something.<\/p>\n

I didn’t completely trust the exact figure, because I wasn’t sure how the device was counting the “skipped beats”.\u00a0 But\u00a0from trying to take my own pulse, it definitely was weirdly slow and thumpy.\u00a0 (On\u00a0the up side, the oxygen level was consistently fine.\u00a0 Phew.)<\/p>\n

By this point in being ill, I\u00a0was in bed pretty much the whole time.\u00a0 And\u00a0it was only a few days after<\/em> the initial heart weirdness that it occurred to me to measure my heartbeat out<\/em> of bed.<\/p>\n

Every now and again, I’d have to go to the loo, and on the way back from one of those little trips, I\u00a0deployed the finger-clippy thing.<\/p>\n

Weirdly high!\u00a0 134bpm!\u00a0 No wonder I was feeling a bit rubbish when I stood up, because some weird stuff was definitely going on.<\/p>\n

PoTS, maybe, or something similar<\/h2>\n

It occurred to me… I have heard of something like this.\u00a0 There’s a thing called Postural Tachycardia Syndrome, PoTS.\u00a0 Tachycardia means “fast heartbeat”.\u00a0 Looked it\u00a0up<\/a> and got the gist.<\/p>\n

Normally when you stand up, your body automatically does some clever adjustments of the pressure exerted by all your veins and arteries, so that your brain still gets enough blood supply, despite the extra height to reach your head and hence the extra work against gravity.<\/p>\n

In PoTS (or one variety of it, anyway<\/a>), that blood vessel pressure adjustment goes a bit wonky.\u00a0 To\u00a0compensate<\/em> for that and ensure your brain’s still getting enough oxygen, your heart goes faster – hence the symptom which gives the syndrome its name.<\/p>\n

Your autonomic system is all the stuff like heart rate and blood pressure which you don’t consciously control, and basically the syndrome is a disruption of that.\u00a0 As\u00a0well as the fast heartbeat in the name, you can get nausea (which I’ve had lots of, especially in the mornings), fatigue (I\u00a0am easily-tired at the moment, but it’s hard to tell how much of that is from getting over covid itself), and dizziness\/fainting (which luckily I’ve almost not had at all – just the tiniest bit of wobbliness from time to time).\u00a0 PoTS also comes with “palpitations<\/a>” sometimes, so that could explain the “skipped beats”.<\/p>\n

“Officially”, what I’ve got probably wouldn’t be called PoTS yet even if it is<\/em>, because part of the official definition includes that you’ve had it for a few months.\u00a0 But in terms of the heart rate escalation on standing up, and the other bits and bobs, so\u00a0far it’s a match.<\/p>\n

And, funnily enough, acquiring PoTS is a common outcome of a covid infection<\/a>.<\/p>\n

The uncertainty of not knowing<\/h2>\n

So far, it’s been about a month of this thing.<\/p>\n

In the first three weeks, I\u00a0hadn’t really seen any improvement at all.\u00a0 My limit for standing up was about 10 minutes, and my heartbeat would be up around 100bpm to 120bpm.\u00a0 Sitting in a chair, I\u00a0could tolerate for maybe 20 minutes, but even like that, I\u00a0would gradually start to feel increasingly rubbish.<\/p>\n

Because I’ve kept up with the covid research, I’m well aware that some people just as healthy as I am, or more so, have been messed up by covid, and there is & was no guarantee I would make a full recovery.\u00a0 That’s been a lot to confront!<\/p>\n

I’m lucky in that there’s work I can do which is mostly not physical, and although I felt very tired and dopey while infected, my clarity of thought doesn’t seem to have been affected long-term.\u00a0 And I already had a flexible laptop setup with a tippy table, which allows me to read, write or edit pretty comfortably while lying in bed.<\/p>\n

But it would still put an enormous dent into my usual habits if I had to carry on living like these last few weeks.\u00a0 “What if I have to stop riding my bike?\u00a0 What if I can’t play gigs any more?\u00a0 Would I still be able to go on train journeys?”<\/p>\n

In recent years, I’ve configured my work space so that for some tasks (e.g. audio editing), I’m standing up.\u00a0 “Might those areas need to be completely reconfigured so I can do that work from bed?”<\/p>\n

No shame in being disabled, and those are adaptations I could make.\u00a0 But aaargh!\u00a0 The risk of covid messing up my ability to do<\/em> things was my top reason for making so much effort to avoid catching it in the first place!\u00a0 That phase of “this isn’t getting better” has not been fun.<\/p>\n

I think now I am<\/em> seeing signs of improvement.\u00a0 When\u00a0I stand up, my heartbeat might “only” be up to the 90s or low hundreds, and lying down, it’s “only” down into the 60s.\u00a0 With\u00a0a combination of sitting and walking, I\u00a0can now stay out of bed for some hours in a row, though standing up is still a problem.<\/p>\n

A theory<\/h2>\n

If you know me, you probably noticed that I am a science geek haha\u00a0:-)\u00a0 So you won’t be surprised to know that I’ve been mulling over the evidence of what’s been happening, and the theories of what might be causing it.<\/p>\n

Among the things I read about PoTS was a theory that, in at least some cases, it might be caused by an auto-immune reaction.\u00a0 Your immune system gets confused, and starts interfering with the signalling which ought to adjust your body for standing up.<\/p>\n

And it would make sense to me that I could be experiencing an auto-immunity thing of some kind, because I have other clues consistent with that.<\/p>\n

Clue 1:\u00a0 The negative tests<\/h2>\n

Firstly:\u00a0 while I was most ill, I\u00a0did lateral flow tests every day for (I\u00a0think) six days.\u00a0 And\u00a0I never got a positive test, even though the other people infected at the same time were getting really obvious “stripes” on the LFTs.<\/p>\n

I had one with the faintest possible hint of a half-a-line, which I wasn’t 100% sure was nothing<\/em>, but even then I wasn’t sure it was<\/em> something.\u00a0 I\u00a0took a photo of that one with my phone, and on the photo, you can’t even see the faint half-a-line at all!<\/p>\n

The darkness of the stripe on an LFT reflects how high the virus is in your body at that time.\u00a0 So\u00a0unless the tests were all faulty, these results probably mean that my immune system was doing a great job on keeping the virus low.<\/p>\n

So on the whole, it seems to me more<\/em> plausible that I’d now be ill with an immune system over-reaction than that I’d be ill due to the virus having directly attacked my heart – though it could<\/em> be a bit of both.<\/p>\n

(I have subsequently had a positive covid test via “Polymerase Chain Reaction”, PCR, the kind of test you have to send off to a lab – so I know it was<\/em> covid.\u00a0 I\u00a0ended up paying to have the PCR test, because you can’t get them free any more and I wanted to know!\u00a0 and not be having to hedge forever with “well it was probably<\/em> covid, because that’s what the others had”.)<\/p>\n

Clue 2:\u00a0 The sting that wasn’t a sting<\/h2>\n

Secondly:\u00a0 About 12 days in, I\u00a0got this weird little skin reaction out of the blue, which I think was “hives”!\u00a0 which I’ve never had before!\u00a0 (a.k.a. “urticaria” a.k.a. “nettle rash”.)<\/p>\n

What happened was…\u00a0 It was my first time out of the house since getting ill.\u00a0 I’d\u00a0decided I wanted to do a tiny outing and test how possible it was to walk along the street, to get a sense of whether I’d be able to get to the doctor’s if I got an appointment, or indeed to anywhere else.\u00a0 It\u00a0was a lovely sunny afternoon.\u00a0 I\u00a0did 5 minutes’ walk, then sat on a bench for about 15 mins, feeling only slightly ill and enjoying being outdoors.<\/p>\n

I was just setting off to walk back home, when OUCH!\u00a0 A\u00a0spiky stinging pain stabbed my left knee.<\/p>\n

My first thought was that I’d been stung by a wasp.\u00a0 As\u00a0a child, I’d experienced that, so I know what it feels like.\u00a0 But\u00a0weirdly, no insect was in sight!\u00a0 My\u00a0knee seemed to have done it to itself.<\/p>\n

Within a few minutes, two slight swellings had appeared, pale circles looking just like some kind of insect bite, and the skin around them went pink.<\/p>\n

Back home, I sat on the sofa and went looking online in case there was something already documented.\u00a0 I\u00a0think I might’ve used the search term “covid sting”, or something like that.\u00a0 Anyway, I\u00a0found a page of photos of covid-related skin conditions.\u00a0 One of them was hives, and it looked a bit similar.<\/p>\n

Then over the following hour or so, the swelling fairly quickly disappeared again and the skin went back to its normal colour.\u00a0 The\u00a0only visible sign remaining was two tiny pink dots, which I wouldn’t even have noticed if I hadn’t been looking closely.<\/p>\n

I’ve never known a real sting or bite to go away that quickly – but one of the pages about hives says it can sometimes clear up in as little as half an hour.\u00a0 So I think that’s what it was.<\/p>\n

For the rest of the day, that bit of my knee was a bit painful in a tingly way, as if I had<\/em> been stung. \u00a0 And then for the next few days, that area was a little bit itchy.<\/p>\n

In reading up on it, I saw that hives have been linked to auto-immunity conditions.<\/a><\/p>\n

Clue 3:\u00a0 The real<\/em> insect bites<\/h2>\n

I made a connection:\u00a0 in the last ten years or so, my body’s also been rather over-reactive any time I get genuinely bitten.\u00a0 When I was young, a mosquito bite might’ve “grown” to maybe half an inch or an inch if I accidentally scratched it.\u00a0 But nowadays, if I scratch one by mistake before I realise, or can’t avoid a bit of clothing touching the bite, the redness and swelling can spread across my skin to an oval three or four inches wide.\u00a0 (obviously I do my best not to set that off.)<\/p>\n

Clue 4:\u00a0 The jab<\/h2>\n

The other thing is that, of everyone I know, I had the biggest reaction to my first covid vaccine jab.\u00a0 My whole arm was aching down to the fingertips, I had a stonking headache which didn’t fully lift for two or three days, I didn’t feel back to normal for a week.<\/p>\n

I didn’t mind<\/em> it!\u00a0 I remember saying at the time, well, that shows my immune system is doing its job :-)<\/p>\n

Putting the pattern together<\/h2>\n

I thought:\u00a0 maybe these all go together.\u00a0 Maybe for a while now, my immune system has been a bit over-enthusiastic, and the presence of the actual covid virus has tipped it over the edge into some malfunctioning.<\/p>\n

On the one hand, that could be quite bad – because there’s no guarantee that it will ever go back.<\/p>\n

Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period, with recovery defined as the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction. However, some patients do not recover, and a small subset will worsen over time. For the most part, the younger the patient, the better the prognosis.<\/p>\n

– Blair P. Grubb, Postural Tachycardia Syndrome<\/a><\/p>\n<\/blockquote>\n

So I might<\/em> now be disabled forever with this pesky thing.<\/p>\n

On the other hand…\u00a0 it’s early days yet.\u00a0 And it’s occurred to me, it could<\/em> be that the over-reaction is specific to still having viral remnants kicking about in my body, and will clear up at least somewhat as these get tidied away.\u00a0 This is the optimistic part :-)<\/p>\n

Viral remnants<\/h2>\n

The info on viral remnants in the body has been pretty well publicised, because it’s relevant to the use of PCR tests.<\/p>\n

After a covid infection, when (if you’re lucky) your body has dealt with all the “live” virus and it’s not replicating any more, you can still have chopped-up bits<\/em> of virus detectable for… some sources say 60 days, some say 90 days.<\/p>\n

This is why you can use a PCR test even after you’re not feeling ill any more, and it’ll still be able to detect enough virus to give you a positive result.\u00a0 It’s also why, if you’ve had covid within the last couple of months, you can’t<\/em> use a PCR test to find out whether you’ve got it again<\/em> – because the result could come back positive anyway,<\/em> due to the swab picking up remnants from the first time round.<\/p>\n

(As I understand it, the LFTs don’t have this problem – they go by actual replicating virus levels.\u00a0 If anything, LFTs are more likely to test falsely negative<\/em> when the virus is<\/em> replicating at a low level, same as happened with me.)<\/p>\n

So there’s a plausible and hopeful hypothesis that maybe, over the next couple of months, my immune system will calm down as the viral remnants get cleared up, and I’ll get back to normal – or mostly so.\u00a0 Or maybe not.\u00a0 No guarantees.\u00a0 We’ll see.<\/p>\n","protected":false},"excerpt":{"rendered":"

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