(Care)

(First published in 2017)

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.]

In my previous post last year I 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 bounceback. Secondly, the thing which keeps me in bed – extreme lack of 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, alcohol intolerance – you name it, I barely have it. I’d say I’m at about 1 out of 100 on the Bell Disability Scale in 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 mean time, 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, 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.

Muscular 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 flatpacked 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 the summer of 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 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.

I don’t know what happens next and to be honest I would be curious to find out, except:

a) although my pain with extreme PEM has usually up till now not been that bad, maybe a 3 or 4, it’s very apparent that bad things are happening to my muscles on a microscopic level, I know I’m losing function I can’t recover, and it’s ghastly and terrifying;

b) the sensory hypersensitivity that I already suffer from becomes magnified to horrific proportions, you can end up in vicious circles of sensitisation and physical decline, and

c) there is no help for these or any other aspect of the disease.

For example, I have and will again end up in a state in which I can’t bear ambient noise without industrial ear defenders but I also can’t bear the pressure of the ear defenders clamping on the sides of my head. There is no solution to this: I can alternate the source of the irritation but it doesn’t relieve the overall suffering. Or if I can’t bear light, I can’t bear wearing an eye mask and I can’t bear the upheaval of having the windows blacked out, then I will have to bear at least one of them. Or if I feel distressed without the comforting pressure of heavy and bulky bedding on top of me but increasingly I’m too weak to move around under it without incurring PEM, but I have to because pain builds up if I don’t shift position regularly, then I will have to do at least one of these, too.

These sensitivities include extreme intolerances to the slightest: noise, light, vibration, visual stimulation such as patterns or movement, physical pressure (or sometimes lack of it), fuss, confusion, intrusion, interruption, interaction, someone coming into the room, someone looking at me, someone displaying enthusiasm or any emotion, etc. etc. etc. I start to feel very frail and thready and flinch at any sound, not from fear but from pain, as though I consist mainly of nerves flayed bare that will scream if they’re so much as breathed on. It probably resembles what you’d get if you subjected someone with an extremely thin-skinned hangover to sensory overload torture.

It also means I have a thimbleful of tolerance for more conventional psychological stress. In its broadest definition, stress is the discrepancy between the demands placed upon a system and that system’s ability to meet those demands. Almost everything is already too much for me and pretty much everything else is borderline, so almost everything in life, certainly all pressure, suspense, change, conflict, demands, in-person interaction or interference, is, if not stressful, at least taxing for me.

I am aware that this puniness is as absurd as the dying Beth in Little Women setting aside her sewing needle because it was “so heavy”. It is also, to use an unnuanced term, real. These sensitivities or intolerances are not caused by psychological or behavioural issues which can be rehabilitated, though they do result in extreme distress. They diminish spontaneously during my overall remissions and, as with physical exertion intolerance, they do not respond to cognitive behavioural therapy, any kind of gradual exposure to the aggravating factor such as hyperacusis therapy, or any other effort to coax or wean or distract or inure or acclimatise or soothe or persuade or attain nirvana in order to enable myself tolerate them. I have tried. You either remove the stimulus or it gets worse and keeps getting worse.

The more frequently I’m subjected to these assaults, the worse my mental and physical health gets. It doesn’t matter whether the people inflicting this torture are doing it unintentionally, you are poking a raw nervous system and the result is agony, and I can’t afford agony. I can’t afford to scream (though these days I can’t help it), because screaming (i) takes a fuckload of physical energy and (ii) produces an adrenaline rush that further washes me out; I can’t even silently scream because I still get exhausted by (ii); nor can I afford to cry or feel frustration or rage because it all ravages me in the same way and there is no catharsis in this situation, you just end up further down the same hole.

The most up-to-date advice is simply to avoid such stressors, exactly as you do with extreme physical stressors, but of course in practice this is not possible and people go further and further downhill. There are many people who end up completely unable tolerate any stimulation; they spend their lives with earplugs in blacked out rooms, they can’t bear anyone touching them and they can’t bear anyone coming in, which is bad enough, but when they also can’t do anything at all for themselves, they need spoon feeding or tube feeding and nappy changing, then they have to bear it, they have to have people violating these limits and they also can’t speak or communicate to let you know when what you are doing is particularly horrific. This is not a tolerable quality of life, but people live for decades in it. I don’t know whether you ever touch bottom or just find yourself tumbling ever deeper into horror, but I’ll probably find out, because this is my future.

And I don’t know what to do. You may have noticed that I’ve written 2000 words of a blog about care without providing any care instructions and that’s because I don’t know what to do about it and any instructions I do give are often not followed. I’ve always devised and implemented as much as I could for myself, not just because I prefer it and I don’t want to atrophy,  but also because it is so much less stressful than enduring care or trying to explain the layers of practicalities to anyone else. Trying to execute my needs with people who typically fail to understand the general precept, demand justification for even the smallest decisions or argue with me at every turn that they might know better is prohibitively stressful, it amounts to coercion if I’m too weak to resist or explain, and it behaviourally reinforces excessive self-reliance. The result is that my life is now a pile of improvisation that only I have any clue about but I’m too weak to explain to anyone else.

What will happen when taking care of my basic needs for myself is too much for me and makes me worse, but someone else doing it for me is also too much for me and makes me worse? Who will brush my teeth, Optrex my eyes, put in my earplugs, change my tampons, position my urinal, explain things to doctors that only I can, telepathically arrange all the stuff I need in easy reach and retrieve it from inaccessible places when I drop it and do all the other things, too numerous or horrible to mention, that are only feasible and/or tolerable when I do them myself? Who will prevent or undo the pile-up of clutter when things need doing but I can’t explain, endure or even list them? How can anyone help when I’m quietly haunted by free-floating angst and general demons, which latch onto anything they can, which can’t be reasoned with or helped when I can’t communicate, and which are probably resistant to talking therapy anyway because they appear to be prompted more by the physical disease than a mental illness? Even my most simple current needs are patchily met and understood no matter how hard I try to get the message across, and I’m made to feel like I’m being unreasonable when I complain. What will happen when my condition gets even worse?

I don’t know. The medical advisor to the main UK ME charity doesn’t know, and he’s written books on living with ME, he’s a kind and dedicated man, and he told me, “Sorry, but I don’t have an adequate answer to your dilemma”. When I expressed a hope that I might find some help via the local ME charity, its Chair of Trustees told me, “Well, don’t hold your breath”. It’s not that they don’t know: they do know, we all know, that no answer exists because no help exists.

I have no proper doctor because the only GP who was interested in understanding my case has just left the NHS and I’m now too weak to explain it all to a new one. Medical and public health institutions have spent decades assiduously ignoring or denying the existence of people as ill as me so they don’t have to acknowledge the inadequacy of their current treatment of ME. I’ve already been substantially harmed by the NHS approach both physically and psychologically, but when patients try to report these harms we are loudly condemned as a “fringe” of dangerous “anti-science extremists” by the doctors responsible. They paint themselves as the victims of persecution by their bedbound and helpless patients, they compare us to anti-vaxxers and climate change deniers and everyone believes them and gives them bravery awards for ignoring us. (Yes, really.)

This is a bad position to be in. The best I can reasonably hope for is neglect; at worst patients are blamed for medicine’s shortcomings, sectioned into psychiatric wards and then dumped back home with severe permanent physical damage and PTSD. In between these is all the common-or-garden trauma that has made me justifiably afraid of even coming into contact with any so-called “fatigue service” again. But then I wouldn’t expect a much better outcome from any care, really, because this kind of fragility is simply incompatible with life. And if I ever have to go to hospital for even the most insignificant issue, the nature of ME and the nature of hospitals means that the staff won’t be able to prevent it becoming a nightmare for me even if they wanted to or knew how.

In view of all this I’m quite sure that in terms of my quality of life, if I should ever come down with something that is certain to kill me relatively painlessly at home if left untreated, I want it to be left untreated. In reality I know that most things that can kill you are more likely just to make your quality of life worse without killing you, plus I haven’t come down with so much as the flu in 15 years. Refusal of food and water is, in my view, a quality of life measure like a DNR, but it’s not pleasant and it triggers psychiatric assessment. There is a history of pwME being sectioned and/or having their carers suspected of enabling a delusion, just for insisting they have an organic disease or simply failing to get better, let alone if they can’t (“won’t”) speak or show suicidal intent, so I am afraid of anything that might lead a psychiatrist to classify me as uncooperative or insane. And I don’t know what to do about that either, and I know that nobody else does either.