Intro
I haven’t been able to keep up with messages and replying to people, or otherwise keeping anyone updated on what’s going on. I haven’t been able to reply to a message for a few months. so instead of trying to catch up on an impossible backlog, I thought I’d write an update blog and circulate it.
It’s difficult to reply to people… because of the lack of capacity, when I have so few minutes of writing each day, but also because there’s a huge experiential chasm to try and bridge. If someone asks how I am… how do I explain in a short message what it’s like to spend almost all of my time just lying around half-bored passing time, unable to do anything but watch light entertainment, waiting and hoping for recovery? How do I explain how I feel in this? So, blog post it is.
In short: How am I? Fed up. Patient. Devastated. Sad. Fairly peaceful. Scared. Lonely. Mildly hopeful. Frustrated. Comfortably numb. Things look bleak.
Summary
For those who don’t fancy reading a whole blog length, here’s a summary.
I’m still incredibly ill, after getting worse in September, having some slight (but bumpy) improvement through to February, then another bad regression in March. I’m stable and gradually trending positively again, I think. My physical activity is just walking room-to-room in the house to use the bathroom, otherwise lying down resting, watching light entertainment (slowed down) to pass the time. On good days in Feb I could use my laptop for about 20 minutes to do work-level things; the rest of the day even writing on my phone is too much. Now, start of May after a regression, I’m trying out just five minutes on my laptop each day.
Emotionally it’s a rollercoaster, but the one sentence summary of how I am: trying to pleasantly pass the time, and let go of the difficult emotions etc. Some hours or days are rough and difficult, but most of the time I’m fairly at peace and not suffering or upset.
Most of this blog post was written over one week in February then one week in March; then over a couple of weeks at the end of April/into May I updated it. [and then finished throughout the end of May…] For 3 months I haven’t replied to any messages (apart from just with emojis), or done any ‘productive’ projects; almost all of my available capacity went into life admin, care admin and medical admin – apart from the few weeks spent writing this blog. Which has been fairly frustrating to not be able to ‘do’ anything else.
Recent Chronology Health-wise
This section is about how I am health wise; how I am emotionally etc is in a section below.
So… trying to keep it brief (ha ha it’s difficult)… last Summer I could do about 2 hours of computer work each day, play some not-too-stimulating computer games, and talk a bit. Then in September I had a bad regression. Not sure why… maybe I was overdoing it slightly for the month before and it eroded something and came crashing down. I also had a rash break out on some body parts that seemed like it spread from inside out instead of across the skin. I didn’t put much stock in the ‘dormant virus reactivated’ theory of long covid, but after this maybe there is more to it, or it is at least one thing in the mix.
Daily routine: I wake up, move to the sofa, get dressed and brush my teeth. I spent the morning on the landing (as it’s next to the bathroom) and do (on good days) my 20 minutes on the laptop (over 2 or 3 chunks). I eat lunch lying down. Every other day I have a cold bath (good for nervous system) and wash myself mid-afternoon. Then I move back to the bedroom sofa for the remainder of the afternoon and evening. I pass the time watching various light entertainment videos or audiobooks at slowed down speeds. I do mindfulness and breathing exercises.
In Nov and Dec my nervous system was getting worse, energy seemed ok ish but ANS symptoms got worse; in Dec I scaled back my daily routine to streamline it and have less moving about. Mid-January through to mid-Feb I stabilised and saw some improvement with these symptoms. Early March I had a 2-day hospital trip for some testing (unfortunately it was a frustrating and mostly negative experience I’m quite angry about, and it doesn’t seem anything useful has come of it), and for the week before that was rougher probably due to the stress of the upcoming trip.
After returning from the UCLH trip I had a couple of recovery days, then a few good days. around then I wrote in my journal: “I am hopefully stable in a similar place to mid-February, but I don’t know for sure at the moment.” Then crashed a few days, then a few alright days… then two weeks of crash. My guess is that either the general stress and/or the exertion of the trip itself eroded some of my foundations or something, such that me doing my normal pacing on the two sets of good days the following week was actually beyond lowered threshold, and it all cascaded downwards.
I was again in a bad crash, on the precipice, focused only on daily survival and trying to ensure I stayed above the dangerous level where minimal daily survival is too much. My brain got much worse, very fragile, incredibly low stress tolerance. Mental exertion caused acute brain symptoms, sharp headache pangs, an overwhelm/freeze feelings, and vascular symptoms that felt like a warm liquid spreading in my brain or a fizzy feeling in my forehead. If I tried to write a full sentence, words would fade from my grasp and full grammar would be difficult. Even the thinking of daydreaming could easily be too much. Interestingly only some of the pathologies/symptoms were affected – my nervous system issue of my body not relaxing properly didn’t get worse, and physical energy seemed unchanged, only brain, stress, mental exertion stuff.
Breathe
Keep breathing
Don’t lose your nerve
Radiohead – Exit Music (For a Film)
Now, thankfully I’ve stabilised out of that crash. My current pacing is using my laptop for 5 mins each day (ie this blog), and that seems to be ok. I can again look to the future and see what small gradual increases might be possible.
… then, mid-May, a couple of weeks of a weird grey zone limbo of being in a faint crash but not having as much bad as previous ones. Biomarkers much worse overnight, some days mild symptoms and clearer crashes, some low symptoms. Usually would bounce out and back to a baseline day after a recovery day… but I haven’t. No obvious reason/cause, the general concern is whether this could lead to a regression or bad crash as the initial stage of worse biomarkers and unhappy ANS (pattern seen before…). But it seems to be more stabilising/maybe improving a bit than getting worse. Hopefully that happens!
Misc Section
With the illness, if you go beyond the safe limits, you can get more and more ill. So, it’s always a bit worrying, and part of the difficulty of deciding what is safe to do. And it’s counter-intuitive: with almost everything else, if we want to get better, we have to do something. Whether it’s building stronger muscles, being fitter, developing a skill, rehabilitating an injury, etc… and the medical model is still mostly based around this (now outdated and disproven) idea of reconditioning, and many doctors, consciously or subconsciously, try to encourage their patients to do more to try and make them better. It’s ingrained enough that I sometimes still think like this. But it doesn’t work. I tried it for the first year and just ended up getting more ill over time… Thankfully there is now a body of medical understanding and evidence built on this, but lots, probably still the majority, is on the outdated model.
A lot of it looks neurotic. I live a very controlled routine life, something which would otherwise be an indication of a mental disorder. I’m cautious and hesitant about doing things. And so on. Again medical or non-medical people might think that it’s in your head, and that you aren’t actually ill, you just think you are. Not separating out the ‘behaviour which looks absurd’ from ‘behaviour which is sensible as a response to an absurd situation’. Sometimes I doubt myself, and have to remember all of the previous times that I thought something was totally fine and hit me the next day… and keep myself confined in the routine I know to be safe.
One of the problems is that, for the some reason, the healing process is impaired. Happening only slowly. But, at some point, it can wake up, and healing can happen more quickly. There’s many stories of people being ill for a few years then recovering quickly over the course of a few months, as if a switch has been flipped, and I had that in autumn 2023, before then having a severe regression. So, keep waiting and hoping…
I’ll be reborn someday, someday
If I wait long enough
the Mountain Goats – White Cedar
So, after the hospital trip, I’m back to pacing. I don’t know exactly where my current limits are at the moment so I’m trying the same as before to see how that goes. It’s like navigating thin ice in dense fog. A few small, cautious steps. Wait to see if there’s a crack, or if the ice gives way and you have to crawl out, warm up again, before moving off in another direction. It’s very difficult; if there was clearer feedback it would be so much easier to manage.
When things seem stable, I try introducing something new. On the horizon in February was: extending computer work stuff to 30 mins each day; adding in some more steps; getting a theraband and doing some leg exercises lying down; trying a small amount of talking each day; trying some light computer games; increasing the speed of the light entertainment I watch. I don’t know which I should do next. If I’m still stable after a week or few, I can try something else. If I’m not, then I wait a bit and try again when I’m stable, assuming things don’t seem in decline. Now, same principle, but at a lower scale – eg should I try 7 mins instead of 5 mins laptop? Or should I step further back from being close to the limit?
Day to day I am excellently looked after by my parents. There’s a consistent daily routine (so that I don’t have to think or communicate about it), good food is brought to me, I have no daily worries or stresses apart from my health. I just have to pass time and be kind-of bored and deal with the emotions. I am in almost as good a situation as possible with this health condition. My heart aches for those who don’t have this – who don’t have good carers, have financial problems (social security covers my expenses given I’m living with my parents means, and housing isn’t a worry). Or elsewhere in time, place and history, people who had this illness but didn’t understand it (many with post-viral fatigue got locked up in mental asylums because it was thought to be in their head; many face social equivalents today with those around them not believing or understanding it), or who don’t have the digital technology to provide entertainment while passing the time (and able to slow videos and audio down so that my brain can handle it, which even 20 years ago would not have been possible).
Spirits, Daily Thoughts and Emotions
First half written in Feb and March:
it’s hard to make sense of this. Just lying around waiting. I’m powerless, unable to do anything either in general or towards recovery, where the only thing in my power is to rest more and hold myself back. This lack of agency, lack of doing anything, just passing time comfortably (most of the time) is… i don’t know what to say. Day to day there’s not much purpose. The meaning comes from future possibilities, the hope of recovery and good things in the future.
There’s gonna come a day when you feel better
You’ll rise up free and easy on that day
the Mountain Goats – Up The Wolves
The illness is an emotional rollercoaster. On good days it seems like I’m not even ill, I wonder if I’m being too careful. on good days, I am relaxed and can vaguely enjoy passing time kind-of bored while watching or listening to things (slowed down so they don’t overwhelm my brain, things that are not too engaging). I can imagine that in a few months I might see some good improvements. On bad days, when it has all unexpectedly crashed down, it seems like it’ll be like this forever. There isn’t much hope and some days it all feels pointless. Thankfully I don’t have much sadness or grief most days – it lies beneath the surface. Sometimes it bubbles up and feels devastating, such as when something reminds me of the life I’m no longer living, such as seeing friends do things I would want to do with them or being invited to a wedding I won’t be able to attend. I’m more just comfortably numb.
Keep your head up, keep your heart strong
Keep your mind set in your ways
Ben Howard – Keep your head up
Last year, I could at least feel like I was doing something useful with my two hours each day. I had a self-directed work project – a research report on Rights of Nature – I was working on. Many people don’t have the opportunity to have two hours of their own work time for their own project. At the moment… I can crawl forward with 20 mins each day… I hope to limp this report – which was getting close to finished in September – over the line, cutting out a few bits. It doesn’t feel like I’m achieving anything day-to-day at the moment, just, floating around passing time waiting and hoping for recovery. There is so much that I want to do and write, and such little ability for any of it. The thoughts I had last year about letting go and acceptance – now they actually got tested, having to let go of the scaled down projects I had kept last year now with just tiny morsels week to week.
It’s hard to make sense of it. I feel lost and unmoored. But the answer is not to try and make sense of it, just to be present and go with the flow. The future is strange to think about – even the outside world is strange to think about. My career has been lost, but if I recover well, there will be good and interesting things for me to do that might be the same types of things or might not be.
Just be patient, and don’t worry
…
And in the end, we lie awake
And we dream of making our escape
Coldplay – Death and All His Friends
But… there’s little point in railing against fate, especially when there are many much worse than mine, and no point in comparing much anyway. It’s about moving forward to a new adventure instead of trying to go back to where I was. I daydream of getting a (small city-suitable) campervan – given that I live so much of my life in one room anyway, having a small room on wheels that gives good access to outdoor spaces seems like a good option. I could drive places, spend time outdoors with only a short walk needed, visit friends and rest in my van as needed. Or, if I recover beyond that, maybe some more adventures. Thankfully I still have hope, and that’s worth a lot.
“All we have to decide is what to do with the time that is given to us.”
Gandalf
Second half written in April and May:
It was, as ever, quite scary in the crash. Not knowing where I might end up, or what is safe. Concerned that if I go back much then daily living really becomes an issue – if i can’t wash myself or use the toilet safely anymore. And more waves of grief and devastation and frustration as I again lost and had to let go of the projects I was slowly moving forward with and hopes for the foreseeable future.
It was also pretty disconcerting (!) to have the acute brain symptoms. Previously my limits were more about energy function, and unless I had already overdone it, my brain felt fine… but feeling biological problems from thinking or stress… yeah it’s a bit scary. It’s a big relief for that to have faded, and to now be stable again, and it seems things are gradually trending positively again.
The crash brought with it new tides of loss and frustration and devastation, with the loss of the little bits of work I had been doing and of the hopes and dreams I had for what things might look like a few months down the line. And fears about the what the future might look like… These emotions could be quite strong, with no way of processing them by talking them out or exercising or even writing. At times my mind would feel like a caged wild animal. My mind is trapped in the confines of my brain as well as my body.
I am the spirit of a helicopter in the body of a hot air balloon made of tissue paper. The spirit of a jaguar in the body of a sloth crawling through a heavily cobwebbed jungle.
Getting things done, particularly my mostly done projects, usually relies on other people helping out or stepping up. Some people have been great at stepping up to help. Some have not. It’s always sad to feel/be let down by others, but with my inability to do it myself… it’s just a suffocation of impotence and frustration. Something else to have to let go of.
Let it all go
Let it all go
–the Mountain Goats – Cotton
My sisyphean task is… to lie and wait. Just to be lying still, half-bored half-entertained, letting go of these negative emotions, letting go of the work I was trying to get done (though at the same time hoping that I can limp it over the line in the next few months? Non-attachment has always seemed a bit paradoxical.). Letting go of the fact that each day feels pointless in itself. Be grateful for all that I have, that most of the time I’m not experiencing any suffering or bad symptoms (at the moment), that I have nothing to stress about in the near future, that my daily care is well sorted. It’s like an involuntary spiritual retreat/imprisonment. Let it go, cultivate inner peace. Breath in and relax, breathe out and smile.
It ain’t over til we say that it’s over
And it ain’t over
Not even close yet
Lucy Rose – Over ‘Til It’s Over
Hopefully improvement continues and my capacity increases; hopefully I can limp my almost-finished work over the line soon. I’ve forgotten about ambitions I might have had for the future and just want to get my things that are already nearly finished out into the world… it is hugely frustrating that they are sat there near the finish line. I’m in a better place now (mid-May) than I was at the start of April when I stabilised after the bad crash; day-to-day is stable, my brain is less fragile and I don’t have any particularly unpleasant symptoms when I stay in my pacing, though still very limited with this
(This didn’t really conclude or mesh well but is a collection of thoughts i guess)
Then, the second half of May… a two-week grey period where I didn’t have any good days, but had either slightly or mildly bad days… a reminder of the unsteadiness and that a positive trend isn’t guaranteed. It feels bleak, facing up more against oblivion. I have to summon some courage. And now, positive and hopeful again after a couple of good days. And so it goes on…
Isolation and Staying in Touch
The illness and situation is incredibly isolating. I’m painfully aware that friends’ lives are moving forwards, doing things, going through things, which I can’t be involved with and don’t really know about. I can’t keep up with messaging, nor do I have capacity to properly talk from my side about how things are, so I go through all of the emotions and decisions pretty much on my own.
For keeping in touch what works well is one-way messages – I can’t do usual dialogue so sending me things where an answer is not expected. Various friends send me little anecdotes, life updates, photos from the outside worlds, emojis, well-wishes and words of support, and these are always a lift to receive. Usually I just send an emoji back.
People visiting is tricky, a few have messaged asking. One issue is the effort to coordinate and make it match with what’s possible for me. If it’s a bad day I can’t handle a visit at all. I can’t safely talk (I tried some last year and despite feeling fine at the time I often crashed the next day) or do real-time messaging, so, visitors just have to sit quietly in the same room. And now that I’m worse I can’t even handle someone else being around… It’s surprisingly mentally stimulating having someone else around because it has thoughts of interaction and wanting to look after them – even like ‘what song should I put on next’, or ideas of wanting to tell them about things, and sometimes even that can be too much. Hopefully further along I’ll be able to have visitors again, and even have normal conversations again someday.
End Bit
If you’d like to read more about life with ME/CFS, you can check out Whitney Dafoe’s blog.
If you’d like to contribute to medical research (which is sadly not being funded well in UK or USA), you can donate to the Open Medicine Foundation.