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Severe ME Week 2023: Zoe’s story – Part I

My brain starts to physically hurt, much like a muscular exercise burn, in fact; then even being talked to becomes torturous like having raw skin poked, and then I start to get flashes of jamais vu and aphasia and eventually, I lose the ability to reason entirely. In the past, I’ve woken up blank and not knowing what urination is or how to go about doing it.

Zoe Campbell

Severe ME Story – Care

I’m probably going to reach the point soonish where I can’t communicate either by speech or typing, and I’ve neglected to put in place any detailed care instructions or living will or anything like that. So, I’m going to start explaining here and I’ll just have to hope I can get it done before I lose the ability to type. [I can’t.]

I recently tried to explain how I’ve got worse over time because it’s easy to deteriorate and impossible, in my own experience, to improve without drug treatments. It’s difficult to explain exactly how vulnerable this leaves me and what the future might hold because everyone with ME seems to be affected differently and it’s hard to extrapolate.

For starters, the health of many ME patients seems to include an elasticity mine almost entirely lacks that allows them some fluctuation or bounce back. Secondly, the thing which keeps me in bed – extreme lack of muscular stamina – seems very different from the more intrusive suffering that keeps other people in bed. Malaise, flu-like symptoms, muscle aches, dizziness, weakness, paralysis, other autonomic dysfunction, unrefreshing sleep, “brain fog”, severe generalised pain, life-threatening indigestion, – you name it, I barely have it. I’d say I’m at about 1 out of 100 on the Bell Disability Scale terms of how little I can do, which is very bad, but the scale also assumes it’s typical to have constant “severe symptoms at rest” at this end of the scale, as do the accounts of other people as disabled as me, and I don’t seem to have any symptoms at rest. I feel pretty much OK until I try to do or experience anything.

I don’t usually even feel tired. I used to have a few more of the typical symptoms around 2000-2002, and they would be awful to live with for twenty years, but they never amounted to much more than a nuisance for me. I don’t know how common it is to have so much absence-of-ability at the same time as so little presence-of-illness, but I would imagine that any of these problems could (re)appear if I get very very ill, especially poor sleep, pain, nausea and general malaise. But in the meantime, extreme lack of stamina is enough of a problem and I will go through its consequences, which are nightmarish. The lack of stamina is not only physical but cognitive, psychological, emotional, sensory, and everything.

The cognitive mental fatiguability is the least serious, but still currently prevents me from reading more than a few middlebrow short articles a day, and only non-fiction. My brain starts to physically hurt, much like a muscular exercise burn, in fact; then even being talked to becomes torturous like having raw skin poked, and then I start to get flashes of jamais vu and aphasia and eventually, I lose the ability to reason entirely.

In the past, I’ve woken up blank and not knowing what urination is or how to go about doing it. I don’t think this is brain fog; it is brain fatiguability. I have brain fog too very occasionally and it is, as its name suggests, a woozy, spacey occlusion or obstruction that prevents you doing anything in the first place, rather than a lack of resources limiting the exertion once you have embarked upon it. As such it is more like lethargy, the-presence-of-fatigue, which I don’t usually experience, rather than exertion intolerance, the absence of energy, which I do. The end result of both of them is that you cease to be able to make sense of anything but I don’t know if brain fog is actually painful.

Physical fatiguability is my most disabling and constant problem but there is a lot more to it than meets the eye. I explained in my previous post how my condition deteriorates when I exceed my limits and doesn’t recover, and that this leads, in practice, to progressive decline. It also leads to an accelerating decline as my available energy becomes less and less and it gets easier and easier to exceed it. On top of this, snowballing physical deconditioning as a result of inactivity may become unavoidable at a certain point, and may keep making all activity ever-more demanding.

Deconditioning is not the major causative or perpetuating behavioural factor that some psychiatrists, bless their hearts, imagine it to be, but a tertiary effect that only started being a problem for me about 18 months ago. In the previous 15 years, while I could walk to the bathroom and back, i.e. 20-30 paces each day, I could keep my remaining muscular strength constant and good enough that if my symptoms remitted a bit as a result of drug treatments I could increase my activity with no problem.

So in 2004, I went – in a few days, I think – from eighteen months’ worth of walking to the bathroom once every 24 hours and getting overstretched if I typed too many things into Google, to going downstairs two or three times a day or putting together a five foot flat packed bookshelf by myself. I didn’t have any problems “reconditioning” at all. A similar improvement happened in 2008. But once the progressive nature of my illness stopped me being able to walk to the bathroom, in January 2016, things began to slide, and now I am deconditioning and I can’t reverse it because the threshold of activity required to reverse or even stave off further deconditioning is way beyond the ceiling of activity currently imposed on me by illness. And as I said in my previous post, if I try to ignore this ceiling for fear of deconditioning I will simply get more ill more quickly.

The result of all of this is that my health is deteriorating quite rapidly, and smaller and smaller things are taking bigger and bigger chips off me. Eventually, I will reach a critical point of negative energy equity where I have to do things – inevitable things like using the bedpan or eating – more often than I can recover from them. I will, therefore, find myself in a permanent and probably constantly worsening state of post-exertional malaise (PEM).

This would involve a lot of pain/burning/shivering in my skeletal muscles (it may be an extreme version of the sort of thing that everyone gets when they have exercised a muscle beyond capacity), plus nausea, restlessness, disrupted sleep, nightmares, and possibly pain when resting on my ribs and/or back and/or arse (“sitting bones”) that prevents me from being able to lie still for very long or go to sleep, all of which is disastrous in a condition which already demands more rest than I find humanly possible.

Unfortunately, the other side of physical fatiguability is that as well as getting Post Exertional Malaise (PEM) when I move myself, I also get PEM when weight/pressure/vibration is put upon me, or even when my body is moved without effort from me, for example by the motion of an adjustable bed. There’s being disabled because you can’t move yourself, and then there’s being disabled because you can’t endure being moved, and it’s physically depleting for me to be lifted, pushed, manoeuvred or touched by someone else, even when it’s not also stressful and distressing. So the point at which it’s too tiring for me to manoeuvre my own arse onto the bedpan is also likely the point at which it’s too tiring if anyone else does it for me. So, getting help from a carer will not stop this decline.

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