I’m probably going to reach the point soon 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 here explaining 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 drugs. 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 even the illest patients seems to have a springy quality mine lacks that allows them some fluctuation or bounceback. Secondly, the thing which keeps me in bed – extreme lack of muscular stamina – seems very different from the more colourful illness that keeps other people in bed. Malaise, flu-like symptoms, dizziness, weakness, paralysis, other autonomic dysfunction, generalised mysterious pain, unrefreshing sleep, “brain fog”, indigestion, – you name it, I barely have it. I’d say I’m at about 1 or 2 out of 100 on the Bell Fatigue 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, 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, but they never amounted to much more than a nuisance.
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 would (re)appear if I get very ill, especially 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 at best, 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 might 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 I go about doing it.
I don’t think this is brain fog; it is brain fatiguability. I have brain fog too sometimes 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.
Additionally, past a certain point, physical deconditioning as a result of inactivity becomes unavoidable and keeps making all activity more demanding. I don’t think this is the major causative or perpetuating behavioural factor that some psychologists 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 muscular strength constant and good enough that if my ME symptoms remitted a bit as a result of drug treatments I could increase my activity with no problem.
Thus in 2004 I went very rapidly 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 ME setbacks stopped me being able to walk that far that often, in 2015, things began to slide, and now I am constantly 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 ME. (I can draw you a graph if you like.) And as I said in my previous post, if I try to ignore the ME limits 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. I expect I’m imminently – possibly before the end of this piece – going to 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 PEM. This would involve a lot of muscle pain/burning/stiffness in my limbs, which painkillers may or may not help, plus 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. There’s being bedbound because you can’t move yourself, and then there’s being bedbound because you can’t endure being moved, and I also find it tiring to be lifted/pushed/manoeuvred/touched by someone else. So getting help from a carer will not stop this decline.
Piling PEM on top of PEM leads to a very rapid downward spiral, nausea, the sort of shaking/shivering that everyone gets when they have exercised a muscle beyond capacity, and after that I don’t know what happens, and to be honest I would be curious to find out, except that:
a) although my pain with extreme PEM has usually up till now been bad but not *that* bad, maybe a 3 or 4, it is very, very obvious that bad things are happening to my muscles on a microscopic level, it feels ghastly and terrifying, and when I lose function I don’t recover it, and
b) the sensory hypersensitivity that I suffer from already will become magnified to horrific proportions, you can end up in vicious circles of sensitisation and physical decline, and
c) there is no adequate help for this or any other aspect of the disease.
For example, I have and will again end up in a condition 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 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 bear at least one of them.
These sensitivities include extreme intolerances to the slightest: physical pressure (or sometimes lack of it), vibration, noise, sound, light, visual stimulation such as patterns or movement, commotion, 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. Given that a) stress is defined as the discrepancy between the demands placed upon a system and that system’s perceived ability to meet those demands, and b) almost everything is already too much for me and pretty much everything else is borderline, almost everything in life, certainly all pressure, suspense, change, conflict, in-person interaction or interference, is if not stressful at least taxing for me.
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 I do), because screaming (i) takes a fuckload of physical energy and (ii) produces an adrenaline rush that 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.
I am aware 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 are not caused by psychological or behavioural issues which can be rehabilitated, though they do result in extreme distress. They seem to be sensory processing issues, they diminish spontaneously during my overall remissions and, as with physical exertion intolerance, they do not respond to cognitive behavioural therapy, gradual exposure to the aggravating factor, hyperacusis therapy or any effort to coax or wean or distract or inure or acclimatise or soothe or persuade myself to tolerate them. I have tried. They get worse and they keep getting worse.
The best informed advice is 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, 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 in any way so they can’t let you know when what you are doing is particularly horrific.
People talk of spending hours stuck between desperately needing basic help like water or excretion yet desperately unable to tolerate the help, waiting to build up the strength to endure the daily necessities of life and then trying to recover before the next time they need them. This is not a tolerable quality of life. It must be like locked in syndrome except you’re locked inside out and it keeps getting worse because the stress of suffering makes it worse and any attempt to explain or even endure anyone alleviating the cause of the suffering also makes it worse. People live for decades in this state. 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. 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, refuse or demand justification for my decisions or argue with me at every turn that they might know better is very stressful, it amounts to light coercion when I’m too weak to resist or explain and it behaviourally reinforces excessive self-reliance. Add that to entropy and the result is a pile of improvisation that only I have any clue about but I’m too weak now to explain to anyone else.
What will happen when taking care of my basic needs myself is too much for me and makes me worse, but getting someone else to do 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, telepathically arrange all the stuff I need in easy reach and retrieve it from inaccessible places when I drop it and 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 the whole clutter of entropy when things need doing but I can’t explain, endure or even list what they are? My current, pretty typical Severe ME 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 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 main local ME charity, its Chair of Trustees told me, “Well, don’t hold your breath.” It’s not that they don’t know, in fact: they do know, we all know, that no answer exists because no adequate help exists.
Medical and public health institutions have spent decades assiduously ignoring or denying the fact that people as ill as me exist 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 report these harms and ask for less ideology and abuse and more of the known medical realities in our treatment, please, we are loudly condemned as dangerous “anti-science extremists” by many of our supposed specialists, they compare us to anti-vaxxers and climate change deniers, and everyone believes them. So people like me are not only physically helpless but misunderstood, disbelieved and disdained.
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, subjected to barbaric treatment and then dumped back home with severe permanent physical damage and PTSD. But then I wouldn’t expect a much better outcome from ordinary care, either, 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 would be a quality of life issue like a DNR but triggers psychiatric assessment, and there is a history of pwME, both children and adults, being detained or sectioned, and/or having their carers suspected of Munchausen syndrome by proxy, simply for believing they have an organic disease or failing to get better, let alone if they can’t speak or show suicidal intent, so I am afraid of doing anything that might lead an ignorant psychiatrist to classify me as insane. And I don’t know what to do about that either, and I know that nobody else does either.