This isn’t finished but I’m posting it anyway because life is currently unbearable and, I don’t know, maybe communication or the deluson of communication formed by posting this into the ether is better than nothing. So these are the things I was discussing with the CFS doctor in February (before the hospital admission was cancelled) and haven’t been arsed to write up properly till now.
1) Is there an omega point of CFS? (Or do only fatal diseases have an omega point?) I.e., can I die of exhaustion? What is the worst that can happen?
Some people do seem to achieve this, and kudos to them, but in general no, you can’t. Which I knew, but I was sniffing around the question of how much harm is the tiredness really doing me, then; is it damaging me, and why can’t I just ignore it – all of it? You might as well ask why can’t anyone ignore their tiredness, healthy people too, given that science is becoming increasingly aware that fatigue is in the brain, it is a prophylactic mechanism. Your body chooses to shut down before (quite a long time before) poverty of resources compels it to shut down. But I think the answer is that it is, still, shutting down, neurologically/phenomenonononologically if not metabolically. And it’s bloody convincing: if you get tired in the Matrix you get tired in real life. I think there are ways to overcome this sensation, provided there is no neurological damage, but they are not surface interventions: you have to take drugs or be like a yogi or something. Anyway, to get back to the main question, I think the doctor said that the worst fate in CFS was you’d get to a point of collapse where you wouldn’t die but nor would you be very likely to get up/move/recover. This seems the likely result of the hospital trip.
2) The CFS sufferers who are completely immobile and spend their lives fed through a tube and drained through a catheter: how did they get to that point? Was it, for instance, by making wildly overambitious trips to the National Hospital for Neuroscience and Neurosurgery?
This caused confusion because by ‘fed through a tube’ I meant too weak to lift cutlery or chew (this is not unheard of), but he meant, I think, people who are unable to eat due to phobias or maybe psychogenic food intolerances: he put it as “severe emotional problems”. But I think, essentially, yes, if I wanted to get myself to this point, this would be one of the ways to do it.
3) Is what Vicki Cook [CFS recoveree and coach] said true about people without carers don’t get bedbound?
This is complicated, but the gist of his reply was, you keep what you aren’t prepared to let go of – your non-negotiables – but other stuff falls by the wayside. So if you are absolutely unable or refusing to become bedbound, for instance, then that’s what will go last, but meanwhile other areas of your life will lapse, like tidiness or socialising or bursting into song every morning with the dawn chorus. Probably the advance of the illness is enabled or limited by just what and how much you’re prepared to let slide.
I’m tempted to ask what happens if you’re not prepared to let anything slide, but I think it may be a nonsense question, because nobody does everything all the time, and nobody leads a totally facsimilic existence in which they maintain not only everything they do but also everything they think and experience day in and out. (And if they did, they wouldn’t have developed CFS, because the increase or incursion of fatigue into that existence is itself a decline, i.e. a decline of the tendency not to feel tired.) And more to the point, CFS/ME makes inroads into those aspects of yourself over which you have no direct control: urges, implulses, spontaneity and so on. So to cut long story short: you do some things less than others, and those things atrophy. As I write this it seems like an absurdly esoteric discussion or the kind of stoned revelation that is simply sloughing the skin off things you already knew, but the experience of CFS/ME does lend itself to these existential hair-splittings, because it is so much about perception and the material effects of perception.
(Short answer: No. Or perhaps Maybe.)
4) Is ME vs CFS a genuine distinction? (I was looking at the Hummingbird Society’s ME vs CFS chart, which I suspect is probably bollocks, at http://www.hfme.org/comparisonchart.htm)
For the purposes of this blog, or at least until I contradict myself, I am making the following distinction:
CFS Persistent fatigue and fatigability, not relieved by rest and with no readily identifiable cause, could be a load of obscure and complicated reasons.
ME Persistent fatigue and fatigability, not relieved by rest and of neurological cause, i.e., to cut a long story short, extreme tiredness for no other reason than that your brain is telling you that you’re extremely tired. This may result in subsequent biological inflammations and dysfunctions and vicious circles all over the place and thus make it very difficult to distinguish symptoms from causes. I think this difficulty is a key aspect of M.E.. But then I am prone to thinking in this way anyway, or as my occupational therapist put it, “You really love your semantics don’t you?”
Further questions I might write up properly later IAIAICBA:
Does mitochondrial dysfunction always entail delayed fatigue?/
Can the NHNN investigate the cause of my exercise intolerance?/
Would I recover if I just stopped spending all day looking at computer screens?