Covid-related uncertainty

18 November 2022 by Jennifer

Thoughts on the experience of having covid, and the uncertainty of making a full recovery.  Plus some science geekery on immune systems and testing.

After two-and-a-half years of vigilance and “I’m gonna wear a mask even if no-one else is”, covid got me after all.

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.  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.

The first days

As soon as we knew covid was in the house, we all made an effort to protect each other by not sharing air.  Everyone began wearing masks in the communal areas, and we did a bit of reconfiguration so we could all sleep in separate rooms.  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.

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.

That was a weird few days.  I said at the time:  it’s like getting a weather forecast that a hurricane is headed for your town.  All you 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 be.

I’m pleased to say that one person in our house didn’t catch it, so that shows that our in-house precautions did work!  Go team.

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

Cancelled or postponed a few things (including the Little Bit Bi sesh).  Slept a lot, read some stuff online, occasionally got food.

After the first day or two of headaches, I didn’t feel too bad while lying down, though after about 10 minutes out of bed, I would gradually start feeling more and more rubbish.

Heartbeat weirdness

Then it got weirder.  On about the third day, I was lying in bed not even doing anything, and out of the blue, my heart started skipping beats and going really slow.  Spooky!

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

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.  I’d kept that up, on & off, and gradually built my stamina.  Just recently, I’d been 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 :-)

Numbers

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.  Its display also shows your heartbeat.

According to that, my heartbeat was going down to about 40bpm at times.  Normal for me would be 80‑something.

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

By this point in being ill, I was in bed pretty much the whole time.  And it was only a few days after the initial heart weirdness that it occurred to me to measure my heartbeat out of bed.

Every now and again, I’d have to go to the loo, and on the way back from one of those little trips, I deployed the finger-clippy thing.

Weirdly high!  134bpm!  No wonder I was feeling a bit rubbish when I stood up, because some weird stuff was definitely going on.

PoTS, maybe, or something similar

It occurred to me… I have heard of something like this.  There’s a thing called Postural Tachycardia Syndrome, PoTS.  Tachycardia means “fast heartbeat”.  Looked it up and got the gist.

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.

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

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.  As well as the fast heartbeat in the name, you can get nausea (which I’ve had lots of, especially in the mornings), fatigue (I am 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).  PoTS also comes with “palpitations” sometimes, so that could explain the “skipped beats”.

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

And, funnily enough, acquiring PoTS is a common outcome of a covid infection.

The uncertainty of not knowing

So far, it’s been about a month of this thing.

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

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.  That’s been a lot to confront!

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.  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.

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

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

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

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

A theory

If you know me, you probably noticed that I am a science geek haha :-)  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.

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.  Your immune system gets confused, and starts interfering with the signalling which ought to adjust your body for standing up.

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.

Clue 1:  The negative tests

Firstly:  while I was most ill, I did lateral flow tests every day for (I think) six days.  And I never got a positive test, even though the other people infected at the same time were getting really obvious “stripes” on the LFTs.

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

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

So on the whole, it seems to me more 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 be a bit of both.

(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 covid.  I ended up paying to have the PCR test, because you can’t get them free any more and I wanted to know!  and not be having to hedge forever with “well it was probably covid, because that’s what the others had”.)

Clue 2:  The sting that wasn’t a sting

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

What happened was…  It was my first time out of the house since getting ill.  I’d decided 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.  It was a lovely sunny afternoon.  I did 5 minutes’ walk, then sat on a bench for about 15 mins, feeling only slightly ill and enjoying being outdoors.

I was just setting off to walk back home, when OUCH!  A spiky stinging pain stabbed my left knee.

My first thought was that I’d been stung by a wasp.  As a child, I’d experienced that, so I know what it feels like.  But weirdly, no insect was in sight!  My knee seemed to have done it to itself.

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.

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

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

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.  So I think that’s what it was.

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

In reading up on it, I saw that hives have been linked to auto-immunity conditions.

Clue 3:  The real insect bites

I made a connection:  in the last ten years or so, my body’s also been rather over-reactive any time I get genuinely bitten.  When I was young, a mosquito bite might’ve “grown” to maybe half an inch or an inch if I accidentally scratched it.  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.  (obviously I do my best not to set that off.)

Clue 4:  The jab

The other thing is that, of everyone I know, I had the biggest reaction to my first covid vaccine jab.  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.

I didn’t mind it!  I remember saying at the time, well, that shows my immune system is doing its job :-)

Putting the pattern together

I thought:  maybe these all go together.  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.

On the one hand, that could be quite bad – because there’s no guarantee that it will ever go back.

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.

– Blair P. Grubb, Postural Tachycardia Syndrome

So I might now be disabled forever with this pesky thing.

On the other hand…  it’s early days yet.  And it’s occurred to me, it could 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.  This is the optimistic part :-)

Viral remnants

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

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 of virus detectable for… some sources say 60 days, some say 90 days.

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.  It’s also why, if you’ve had covid within the last couple of months, you can’t use a PCR test to find out whether you’ve got it again – because the result could come back positive anyway, due to the swab picking up remnants from the first time round.

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

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.  Or maybe not.  No guarantees.  We’ll see.