Here’s the latest update, a chronology sort of blog post. The first section was written in Feb or early March, but before I could publish it, there was a worse period… so now it’s complete. The writing is a bit messy with some mixing of tenses due to this, oh well. And it’s written on a bit of a lag as ever — more like ‘here’s what happened back in March/April’. I’ve also put up a scrappy blog post more of my thoughts and reflections etc, It’s Mostly Just Strange, for those interested.
Feb and (most of) March
In the last blog, covering 2-4 months or so ago, I don’t remember exactly, I think I wrote that things were stable but murky. Feb and most of March were more positive: things slowly improving. The murkiness in the past was probably because my exertion was close to the tolerable limit – changing to washing my whole body and hair when having a bath, instead of rotating washing different body areas each day, and trying to add in steps beyond the absolute daily minimum. Now, things aren’t murky, it’s nicely stable and my standard pacing seems safe and I keep pushing at the edge of the envelope to see what else I can tolerate.
Little bits of progress were made and layers of new activity were added. My laptop work ration grew little by little up to 20 minutes each morning – loads compared to when it used to only be 5 or 7 or 10! – and I did additional steps to the end of the room when moving between the sofa for meals and my Lying Down Desk for watching TV. I added a few tiny little exercise bits and increased the speed and ‘intensity’ of the TV shows I was watching. I could play the simplest yet somewhat entertaining computer game I could think of – worms – for 4 x 10 mins, and I did 4 x 5 mins of dot letter mosaic art spread through the day too. Big increases didn’t seem to work – such as a day I tried 5 lots of 2 mins of sitting cross-legged – but these little extra layers (eg just 1 x 2 mins) were working. [Reminder that these increases do not heal the primary cause of PASC, but are secondary about increasing activity and quality of life within the limits of the primary illness.]
I had a positive mental attitude, obviously easier when things are trending in the right direction. Feeling positive most days, thinking about the improvements to come in the next few months. Still some bad ones in the mix. Isolation still pretty tough but I was hoping to be more in touch with people soon with the increased capacity.
In the coming months I hoped that I might be able to move about upstairs unrestricted instead of constrained by step limits. Change room, maybe sit by the window looking out into the garden. And more enjoyable entertainment as well so the days were less boring.
My work to tie off my in-progress-when-I-got-ill legal theory projects has progressed well (though very slowly). A (possibly groundbreaking?) report on Rights of Nature I was halfway through got finished (though not as finished as it would have been were I not ill) in Feb, then did a half-review of the graphic design, and it is with my (former) colleagues Lawyers for Nature to publish. I was also working to archive all my work and update my website, including engaging someone I knew to synthesise and revise my past writings into a new updated overview piece. I’ve only got a few small bits left to do on the website… then I’ll do the little bit of dissemination that I can. And then I can leave legal theory and Rights of Nature alone for awhile!
This is or will be a good accomplishment. Though also bittersweet, and strange. It’s, ‘here’s me finally tying off the stuff I was working on 2 years ago‘. There’s grief that I can’t do it anymore, but a big relief to have the projects tied up and out there, as it was frustrating and sad to have them partially done stuck on metaphorical shelves. And now I can properly close the chapter on that period of my life. Now all I can do is hope it finds people, and leave this sort of stuff for others. I do know that if I get a lot better then I could get back involved in some sort of rights of nature or legal theory or other political work, though I doubt ever back to doing a PhD or anything or that significance; I’ve simply fallen far too far behind.
I was also excited about being able to be more in touch with people. I had just about started to write more substantive messages – starting with writing with my parents about things beyond care or medical necessities. It was actually easiest to fall back to the format of letters. I was looking forward to being able to write more with friends, though also strange to bridge the gap from my crippled limited lives to whatever is going on for them.
2. Late March
Then, suddenly and strangely, I had a strange bad week. The first sign was bad overnight biomarkers – very high heartrate and a low HRV score. Measurements that would be in the bottom few percentile usually, but for about 5 nights in a row. On the first day I felt totally normal but then on the second day, moving to the sofa by the window for lunch, I looked at the lovely sunny blue sky, and after a couple of minutes had a nasty headache. That seemed to be the tipping point, or burst the bubble, but clearly something was up already.
This didn’t follow the usual patterns of symptoms. I just felt faintly yuck. Tired, but not strongly so, and very photosensitive. I rested, expecting the next day to bounce back to usual, and after four days or so, I didn’t. Instead of hoping the next day to bounce back, I hoped that after another week of resting I might have not gone too far backwards from where I was prior. I went into survival mode, scaling back the entertainment I was watching more and more to the lightest stuff I had.
I couldn’t see any reason for it. For the few days prior I had done 10 extra steps and watched rugby at .05 faster speed, but this didn’t seem like a usual overexertion crash, which would usually come with a more acute headache and stronger feeling of fatigue. And recover after a day or two. I hadn’t been stressed about anything. It felt more like the tiredness that comes with having a flu or head cold, a swollen brain sort of headache and dry sore eyes, but I had no respiratory symptoms. Maybe it was a flare-up of the semi-dormant virus that seems to be around my nervous system, maybe some bacterial infection was somehow inside my head. Maybe there was some sort of cumulative overexertion that had built up, though I had been being generally cautious and gradual. No way of knowing.
So, all I could do was scale back and take things lighter and rest. I had an aversion to light and some of the entertainment I had been watching, a strange ‘look away’ impulse that I guess was my brain saying ‘no, too much’. After 5 or 7 days, my brain was less fragile and I felt bored again for the first time, the general faint fatigue and headache had faded away.
It was a strange and murky few weeks. Much more different shades of grey, with a few bad days and a couple of okay days. I sadly did not bounce back quickly after a few days to how I was back in mid-March. The main thing has been that I’ve had to scale everything back not knowing what is safe at the moment; overdoing it when in a fragile state is much riskier and can lead to things staying regressed. I had hoped to gradually reintroduce things over a week or two, but instead I’ve had to stay holding back. Partly because my overnight biomarkers have stayed quite bad, and those have often been an indicator for whether the previous day had been too much in some way. Here they might be being caused by my nervous system being unhappy from some pathology other than linked to overexertion, but I can’t know, so, lots of cautious days not pushing anything. Things weren’t getting worse at least so I just waited for things to get better. Through the second and third week, the symptoms reduced and I started to feel more ‘normal’, though into the third week I still had poor overnight biomarkers (though less bad than the first) and a couple of worse days.
During the initial mystery bad week, I felt an underlying mild terror. The fear of things getting worse again is always around the back of the mind, or thoughts about the future. Now, in it, there’s the awareness that things could get quite bad. Thankfully they haven’t gone back anywhere near as much as in previous regressions, and I held onto the knowledge that I probably hadn’t overdone anything and my body wasn’t stressed out, so hopefully it wouldn’t hit too hard. It wasn’t the usual sort of crash. Otherwise, it was a big tide of sadness and loneliness. The isolation hit hard. I had been excited to be able to be more in touch with people back in March, but now I was again cut off. I felt an urge to message people, tell them I’ve got worse, as if asking for help… but no help was possible, and nor really was messaging. I was sad that I had a few unread messages from the backlog I had nearly got to through March, and some new ones I hadn’t even been able to read yet, and that messages I had planned had to be put further on hold.
I spent a couple of weeks with a tide of sadness, but I knew that this would almost certainly pass and I had waited out worse. It was sad, but not so bad. I watched some TV shows I had been saving on a back shelf for such a situation, more gentle stuff that I could still enjoy. This included rewatching a documentary about Shackleton and the Endurance expedition, which helped to inspire me. If they could wait out days on the ice or the island hoping for a fairly slim chance of rescue, I can surely wait out a bored limited life of comfort waiting for recovery. In particular, this quote jumped out:
“We lived through slow, dark days of toil of struggle, driving and anxious days that called not for the heroism of bright days but simply dogged, persistent endeavour to do what the soul said was right.”
Ernest Shackleton, I think?
This illness is difficult because of the not knowing what is causing it or what is safe to do. This also means that hopes repeatedly come and get snuffed out. During these couple of weeks, I consciously relit the candle of hope to give the light in the darkness. And kept doggedly waiting.
3. Mid-late April
Then sometime around mid-late April I seemed to have transitioned out of whatever was going on and back to being stable. I finally had a good few days, the brain symptoms faded away and I was back to feeling how I was back in March. My overnight biomarkers were my nervous system in a better state, with my heart rate coming down properly again, though my HRV score still not as good.
So, now out of that survival mode. Yet it’s not clear what is safe and how far backwards I might have gone. So I’ve just about started to try reintroducing things – 10 minutes laptop quota has seemed fine, I’m back to a staged body wash in the bath instead of a full body and hair wash, but every time I have tried washing my hair (even without body wash) the next day has seemed worse. I’m still on lighter, slower entertainment, though I feel bored. Brain feels fairly normal, the headache I had for those couple of weeks has all disappeared. I’m still quite photosensitive, no direct views of the sky yet, even the brighter daylight that comes around the edges of the blinds is too much.
There have also been some improvements with the ANS – a gradual trend over the last 4 months or so, maybe the healing from whatever happened a couple of weeks ago helped prompt a bit more healing too. My heartrate has come down a few BPM through the day, and overnight is often back where I think it ‘should’ be (around 65 – not my pre-illness 50s!). The problem I was having that I termed ‘frazzle’ where after some ‘stress’ or activity my ANS would stay in a more stressed out state – such as after going to the toilet, or digestion, or walking around the room – has mostly gone too, at least for now. And my heartrate is also lower when sitting and standing (again proving the ignorant ‘deconditioning’ medical idea that two should-be specialists had gone with wrong! As it’s improved despite doing less activity…). And another little sign of some ANS healing – my tolerance for having a half-full bladder is much better, I need to wee less often and less suddenly! There are still some bad overnight HRV scores though, that hasn’t gone back to how it was 5 weeks ago. But on the whole this is an encouraging sign that healing is continuing beneath the surface. And after a better week it was then a bit less good, as shown on the graph below.
So, glad to be out of whatever that was and things seem to be going in a positive direction again. At least not going backwards and things seem stable. Same, boring, tedious process of keeping a repetitive regimented routine and trying little things, tracking activity and symptoms and biomarkers, matching what seems to link to knock-on effects and what is fine. Blah blah blah the road goes ever on and on. And with a less stressed out nervous system, I’m more relaxed (duh) and that’s more pleasant. My entertainment is still scaled back and a bit more boring, but, I remind myself:
Hopefully that means I’m back on the track of slow gradual healing. So I’m back to lots of lying around being a bit bored but nothing worse than that. I’m still feeling somewhat sad, but doing the mental work to remind myself that this is good – hence the little sign reminder I made! – and to just be relieved things aren’t bad and glad they are moving in a positive direction. At the moment (first week of May) I seem stable-ish, back to navigating thin ice in the fog. It seems like the new pacing I’ve settled into is safe, scaled back from how it was 6 weeks ago, with (eg) only half of the laptop ‘work’ quota of now 10 mins per day, though I have had quite a few grey days and a couple of bad ones in the last couple of weeks.
With my legal theory work projects tied off, and just a bit more of updating the website, social media and sending out emails remaining, I’m again hoping I’ll now be able to be more in touch with people, all being well. I’ve again taken the approach of this more detailed blog to send round… sometimes I think maybe it’s not worth it and I should just keep it to a brief ‘gradual improvement but last month was randomly bad, back on track now hopefully’… but the isolation means I want to share more of the experience I think. So now I can look forward to catching up on messages from the last 6 weeks… which is a bit overwhelming but I know I can get through it bit by bit… and then hopefully being current with people! And it’s a strange time warp, feeling to me kinda like I’m picking up back where I was then (though with less capacity), aware that others have moved forward in time… an experiential chasm to cross. Anyway cutting off the further reflections, that’s all for now!
Beyond this chronological update, I’ve also put up a scrappy blog post more of my thoughts and reflections etc, It’s Mostly Just Strange, for those interested.