It turns out WordPress has set up automated responses to satirise its bloggers’ personality defects. Colour me impressed. WordImPressed.
My current preoccupation is my forthcoming appointment with the CFS expert. One of my personal requirements in order to go there with an easy mind was a phone appointment with him in advance in order to go over my concerns. (My concerns being the general survivability of the hospital enterprise.) If I can get this done soon, it makes it that much more likely that the admission will go ahead as slated at the end of March. I’m OK with that. Below are notes for the questions I may want to ask him, but if they’re unclear you’ll just have to decide for yourselves what they mean because I haven’t got the spare energy for typing more.
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?
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? :)
3) 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)
4) Does mitochondrial dysfunction always entail delayed fatigue?
5) Can the NHNN investigate the cause of my exercise intolerance?
6) National Association for M.E. and other people say SPECT scans are useful?
7) Is what Vicki Cook [CFS recoveree and coach] said true about people without carers don’t get bedbound?
8) Would I recover if I just stopped spending all day looking at computer screens?
9) I read about meningococcal encephalitis causing mitochondrial damage? Is this just in the brain, à la Parkinson’s etc?
10) Plea for drugs to help me cope with anxiety, insomnia and pain before-during-after admission (I was hoping for zopiclone and tramadol as I have tried these on a one-off basis and found them effective and without side effects)
11) Tramadol experiment (to break the circuit of inflammatory vicious circle) ?
That’s all for now. See you later…
…or rather we are but it doesn’t matter in this instance. On Monday we finally got in touch with the neurologist who emailed straight back saying he’d start arranging the Adventure right away. There’s still a lot to sort out so it’s probably some way off as yet: the provisional date is during the last week of March, and an overnight stay. He would like me to include consultations with a couple of other experts while I’m there, which in my opinion shows a huge degree of optimism about my ability to cope with this enterprise, but they are good doctors. Maybe I can check into a nearby hotel for a week or two – I deserve a holiday – and be ferried in to appointments at intervals. Anyway. Watch this space for more unmissable information about my feelings now that I know that it really is going to happen.
My friend Imogen wanted me to use this blog to tell you all that I discovered that the collective noun for a group of nuns is a superfluity, and she is right that this is a wonderful fact, but having broadcast it I will now turn my attention to my main subject, which is my forthcoming trip to hospital.
Sometime in the new year I’ll be going into the National Hospital for Neurology and Neurosurgery for some tests. It’s a precaution after the weird neurological events (they look like grand mal seizures, which is probably exactly what they are) which I experienced over the summer, and the lovely neurologist I saw in September was moved by my plight and seemed solicitous of doing tests as untraumatically as possible for me. At first I resisted because I thought the exertion involved would be disastrous to my health, however easy for me we manage to make things. But then I thought fuck it, there’s maybe 5% chance they’ll find something illuminating, I’ve run out of other ideas, plus I’m sort of past caring, so I’m spending my gambling winnings on spry second-hand clothes and a wheelchair and going out in a sputter of glory.
I like hospitals and I’m looking forward to the adventure, even if turns out to be an adventure in suffering. I’m not thinking too much about the possible consequences. My expectations are sometimes (sometimes) wrong where middle-size exertions are concerned – I reckon on exhaustion yet recover surprisingly quickly. Sometimes. However, my experience hitherto with extremely tiring events way beyond my limits (emergency dentistry etc.) is that they are always, always long-term catastrophic, causing a permanent reduction in my already miniscule abilities. All the extremely tiring events beyond my limits which I’ve undergone so far will be dwarfed by this enterprise, so it may well be the functional equivalent of suicide – I won’t die, but I will be completely disabled and perhaps spend my future being fed through a tube and drained through a catheter: some CFS patients do get that bad and this is may be how.
But it’s also an opportunity: firstly to examine my brain and muscles while exhausted, which may or may not be illuminating, but also it may address the question I’ve often wondered about, of whether there is an omega point to CFS – that is, what is the worst that can happen? Can I die of exhaustion, for instance, or are my symptoms a bluff, perpetrated on me by my body, and I always blink too soon? If morbid tiredness is the enemy but the consequence is only further morbid tiredness, then what is there really to fear? There’s evidence that even marathon runners’ tiredness is so-called central fatigue, originating from their brains rather than the exhaustion of cellular energy capabilities. My hope, born of desperation, is that the hospital trip will as a side effect give me some clues to this conundrum of fatigue – by not tiring me as much as I expected, perhaps, or maybe by manifesting utterly heinous tiredness that subsequently turns out not to finish me. Or maybe by tiring me to such a ridiculous degree that the plastic ruler of credibility* snaps, and somewhere relevant inside me it clicks that my tiredness is not proportional to my activities. That last one is a long-held pipe dream of mine but I’ve never heard of such a scheme working, or even being properly attempted – you’d probably collapse long before you got anywhere.
Also, there is in fact increasing evidence of mitochondrial dysfunction in CFS – that is, that problems in the fundamentals of cellular energy production are responsible for what are actually quite distinctive symptoms and responses to exertion. I have test results of my own showing at least one type of mitochondrial dysfunction which I can’t explain away as a symptom of chronic immobility rather than a cause, besides which there are well-documented Bad Consequences when even healthy people tax their bodies beyond their capabilities. Nor would I recommend powering through and ignoring symptoms to this insane degree to anyone else with CFS, so the only hope I have that this insanely long shot might help me is, um, simply that I’m open to the possibility that it might, though this open-mindedness has never hitherto had any perceptible effect of my symptoms. But then shedloads of mitochondrial supplements didn’t help either. Brain or mitochondria, there’s no conclusive evidence either way – assuming that the distinction even matters, of course. If you die in the Matrix you die in real life.
I will be posting an announcement or disclaimer on Facebook before I go in case I’m completely incapable of typing, and/or everything, when I come back. This post is the long version of that. More importantly, though, and this is the original reason for this blog, I want to thank everyone for their friendship over the years – for your kindnesses, your sending of treats and trifles, your making me laugh like a braying seal and think like a human being; for liking my posts and cooing over my gratuitous pet photos; for your forgiveness of my obsessive demands, my frequent gracelessness, my, um, somewhat unpolished approach towards the acquisition of physical affection, and for other demerits too numerous to enumerate** ; for the people (and you probably don’t know who you are, and that’s part of your appeal) whose very existence it gives me joy to contemplate. Thank you all. You’re one thing in my life I’m always able to tell the mental health questionnaires I’m happy about. I’ll miss you when I’m a tormented vegetable. I miss you already. I wish I knew you better.
* [metaphor embarrassment]
** For a full and up-to-date list of my personality defects please see my dating profiles.
I’m Zoe, I have severe ME, and I started this blog because I was supposed to be going into hospital and I didn’t think I was going to come functioning out of it and I wanted to make my announcements and say my thank-yous and see-you-later-maybes to the people who brighten my life. Sort of like a Facebook status except longer and without the same uncomfortable sense of colluding in evil. Welcome! Posts will probably be rare but verbose.