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 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.
Zoe Campbell
Severe ME Story – What if my condition deteriorates?
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 Post-Exertional Malaise (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’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 seem to be some sort of cognitive processing issue, 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 f**kload 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, 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 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 that my life 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 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 what they are? 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?
N.B. The featured image is an image taken from our Real ME Campaign photos (i.e. Real people with ME/CFS)
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