I thought it time for another update blog. (Later addition… ah, yes definitely, I started this early November!) This one I’ll be trying to stick to what’s gone on and how the last few months have been, with less of the broader philosophising reflections. Partly to try and keep it concise, partly because there’s not all that much more to say that I haven’t said in the previous blogs. Though I have been collecting some of those thoughts, with potential for a future blog post with the title and theme: It’s mostly just strange.
August and September had a mixture of some good stable weeks and some rough weeks. Much of it was murky, not knowing if I was doing slightly too much and should ease back, or if what I was doing was totally fine and the issues I had weren’t from overexertion. This is of course much of the difficulty of the illness, the not knowing what’s safe and what to do. My brain (and body) often feels pretty good – that’s the aim of where I try to be most of the time, in safety! – but then doing something for just a few minutes can suddenly make my brain feel bad. And remind me that yes I am very ill. And so much is the ‘lag’ effect where it doesn’t hit until hours later or the next day, very hard to manage and tricksy to figure out which things are causing the problems. So, strict daily routine and pacing. Blah blah said that all before in previous blog posts.
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End of September some sort of cold got me and my mum. I was ill for a couple of days but then tired for two weeks more. No way of knowing whether it’s covid-19 or just common cold. So, waited it out, and thankfully by the end of September I seemed back to my previous normal.
Middle of October things seemed stable and good. I was looking to push the edge of the envelope to see what might be safe, and had first expanded my entertainment slightly – I can now watch documentaries, docu-dramas and some films at 0.6 speed! As long as it’s older stuff that doesn’t have loads of fast action or camera cuts, or complicated plots. This was a step up of interesting from just nature and travel and sport stuff.
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Then at the end of October my dad got covid. He isolated at the first sign and thankfully hadn’t passed it onto either me or my mum already; I stayed in one room for 10 days instead of my usual 2 rooms and wore a mask during my daily bathroom trip. It was… a funny… reminder? compared to the previous week of ‘maybe I can do slightly more’, now it’s back to, ‘oh dear things could get very bad soon’. On the other side of it, remind myself to be very grateful not to have caught it, and that I am in my current state.
At the same time… a few days before dad got covid, I was in this uncertain state anyway. My brain state and expanding entertainment had seemed stable and positive, but my nervous system dysregulation was getting worse. Probably this was then compounded by the isolating in one room and stress about covid being around, but my bowels mostly shut down for a week or two… it’s a strange feeling of things just building up in the middle of my abdomen but without any feeling of needing to use the toilet. I scaled back and switched into survival mode, took it as light as I could for 10 days until the threat of infection had passed and I could get back to my normal routine.
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One big positive has been that I’m close to completing the wrapping up of my work projects. For the last… 6 months, or since I became severely ill even, I’ve been working towards putting out the main projects I had been working on before I got ill in some form, so that they aren’t half-finished on a shelf and so that my legal theory work (one project on Rights of Nature, one on my general Interconnected Law work) can be out in the world and I can stop thinking about it. They won’t be as finished as I would have wanted them to be, but will be out in the world in some form. I think I might be a week or two of good capacity away from reaching this milestone, then I just have to do a bit of blog and social media post and emails to networks to get them out there. And then I will have completed that phase of Now I’m Ill but want to get this stuff out and won’t feel them on my shoulders anymore, and can move onto the next phase of… time. In some ways it’s finishing the transition out of my old life, though, if I recover well enough I would want to do this sort of work again in the future!
I can now do 12 minutes of work each day in my 1h morning laptop work slot (before I eat anything; then my body/nervous system seems to have problems with handling digestion and much else… and just doing it in one period so that if I to go into a deficit it’s just once and not a double-dip later on). This has increased up from 5 in the early summer or around 8 late summer. This is for anything using brain on my laptop, so it’s care and medical admin, writing messages, blog posts, any residual life admin, as well as ‘work work’. So that’s nice that it’s increased, and my brain has been feeling better. I can probably do more a bit more but haven’t been able to push the envelope to find out yet.
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So, the current situation, mid November and mid December, have seemed positive and stable. Most days I feel pretty much fine, and I can feel my brain improving slightly. These are ‘easy days’ – something I spent awhile reminding myself, there were many past days where I would metaphorically look at myself in the mirror and say ‘today is tough but we can get through it okay’, these days are easy. Waiting out the boredom (and other negative aspects of this sort of illness and isolation!) is the only problem most days.
Being stable means that I can try and do more, push at the edge of my envelope to see what my body can tolerate. One nice improvement is that I can watch more entertainment – I’ve increased the speed to 0.7 and that seems to be ok, and added in watching films, sticking with old ones that don’t have modern hollywood fast paced camera cuts (recommendations for old classic films welcome!). And listening to a couple of podcasts, whereas I previously had kept my entertainment within a bubble that doesn’t remind me much of the outside world.
It’s still not plain sailing. It’s still quite murky trying to figure out what is safe, as I’m sure I’ve written about before! The last two times I tried doing more steps in a day I had a bit of a crash afterwards. So just keep going cautiously with the process, knowing that my body is slowly healing in the background.
Part of this murkiness has been a negative trend in my overnight biomarkers over the last month – my overnight HR staying elevated instead of coming down properly, and my HRV score being worse. This is exactly the sort of trend that can indicate a cumulative overexertion, where even if day-to-day I feel ok enough I’m doing too much and my nervous system deeper down is unhappy, and it can build up to a bad crash. Of course, it doesn’t necessarily mean this… but it’s meant for the last month I’ve been unsure if I am improving or if I might be doing too much. I’ve addressed this by putting in a few safety rest days when I didn’t feel I needed them. And of course there are other causes for ANS dysregulation that aren’t overexertion, that some other pathology is affecting my nervous system, so I’ve mostly been concluding that this is being caused by another cause. But it means that I have to keep this in mind, stay cautious, and that one of my key ways to keep me safe isn’t available. (Also, for those scientifically minded – yes this is taking into account longer term loss of fitness trends, these are relative fluctuations within recent days/weeks!).
And as a nice bonus, at the start of December I picked up an infection in my throat and gum. Eating was difficult for a few days and I felt a bit ill, but the other effect was that my nervous system really freaked out. Makes sense that an already fragile and overactivated nervous system doesn’t like dealing with a new infection as well. Again I switched gear to take things easier, playing it safe as perhaps I can’t tolerate as much exertion during this state, and to keep it easier for my nervous system during; this blog post was on pause for another week and all my entertainment slowed down. Another difficulty with this sort of medical issue is, I can’t just easily go and see a doctor or dentist… as well as the physical difficulties of getting there, the appointment itself is often at the limit for my brain, and even with my mum managing the interfacing, I still have to spend a couple of days writing up notes in advance so that she can explain to the doctor (and hopefully so that the doctor could read them and ask me fewer questions… but some doctors haven’t been so good at adapting to this..).
I impressed myself a bit with how smoothly I did this – rolling with the punch, accepting it, focusing on riding it out. The infection seems to have now resolved, maybe a last little residual soreness left, but my nervous system still hasn’t relaxed back to where I was before, though in the last few days it has started to gradually relax again. But I think I’m back to the stable and positive place again
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It’s of course difficult that I’m pretty much powerless about this – or at least there’s nothing much I can do to aid my recovery, no effort I can put in, apart from being careful and holding back to ensure my body has the space it needs without overexertion to possibly heal. Lots of holding back. Blah blah that’s repeating things I’ve written before I’m sure.
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The brain improvement and (nearly) finishing off the work project also hopefully means I’ll be able to exchange messages better, both because I’m not putting most of my capacity into the work and because I can do slightly more each day. So whereas keeping up with messages or writing much to anyone has been difficult (and many have gone unanswered), it should be easier going forwards… I’ve had to hold myself back from messaging when I’ve wanted to, hopefully that will be more possible. So do feel free to send me well wishes, anecdotes, life updates, pictures from the outside world, etc – and even if I don’t reply, feel free to send more! (It’s replying that’s difficult, not receiving.)
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Day to day things are much the same as I’ve previously written about. Sometimes I feel positive, especially when I’m stable and have energy and things are moving in the right direction. sometimes it is miserable and boring and very lonely and I’m fed up. I remind myself to just relax and make the most of it, be grateful that I’m not suffering or stressed and have no immediate worries. And I can add to that gratitude the reminders that I can eat without pain and that my digestive system works fairly well. And being bored is much better than feeling ill. Each bored day I don’t feel ill might be an increment along the path of recovery. And glad that I can pass the time with the entertainment that I have so that I’m usually only slightly bored… definitely I’m less bored now than I was some months ago. I feel for people around the world or in the past without this digital entertainment (being able to slow it down a certain percentage makes it viable for me) who are far more bored than I. And yeah. Hopefully things keep improving.
Thinking about the future… is strange. Sometimes I think, in a few months maybe or surely I’ll be a lot better. Maybe I’ll be able to have some short conversations, move around the house as much as I want without limit, get outside (even if in a wheelchair). Sometimes that seems an impossibility at such a short time scale! Especially if I reflect on the change over the last six months. Though it’s non-linear so I try not to compare like that. Anyway… before I waffle on too much more with those sorts of reflections, I’ll conclude the update there.
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Festive wishes for everyone who is celebrating. I hope travels are smooth and safe and that people are able to spend the time as they wish and stay healthy. It’s pretty much no different for me, and as festive things mostly just remind me what I’m missing out on, I’m generally avoiding it and it’s no different than any other day or week for me.
All the best,
Alex/Maizy