I’m not much interested in a general Oh-the-humanity-of-CFS blog, which is why I haven’t been arsed updating this site since the hospital was indefinitely postponed. That was on 4th March, and I’ve been enjoying a Netflix and junkfood holiday from the duties of being a chronic patient and person for some of the time since then, and subsequently I’ve been unusually productive. Except blogwise.
This is what happened. A few weeks ago I had my phone appointment with the CFS expert about the general survivability of the hospital enterprise. I told him I thought that the hospital would be far too much for me, however many or few tests we did, and that it was quite possible I’d be unable to speak or respond well before the first day was out. I was hoping he would tell me my predictions were alarmist, but he didn’t. I told him the slender history of my blackouts (two and a half of them, eight months ago, plus minor attendant neurological strangenesses), my current energy limits and my consequences-of-exceeding-limits history, and he said something like, “So why are you doing this?” We seemed to agree that this trip could be bad for me, but I gave him my reasons for going as outlined in the first paragraph of the Going To The Hospital post. They are fairly nihilistic reasons, but then there is a lot of nothingness in my life.
So I seemed to be faced with a choice. Or rather, since I’d already made up my mind, at least with the obligation to justify sacrificing my remaining health on this goose chase. When I started laying out my long shots (see the fourth paragraph of GTTH), he was quick to see that I was approaching hospital, as he put it, as a “behavioural experiment”, but he pointed out that “there are less extreme ways to challenge yourself”. Less schmess, I thought.
I wasn’t scared, but this is only because I couldn’t properly imagine the consequences. My episodic memory and imagination is poor, like tears in rain, and I remember facts much better than experience. (I don’t know if that’s M.E., or if it’s just me, but it’s been that way since I was a small child.) I know when such-and-such happened or that it was two days after this-and-that, and I know that I enjoyed it or regretted it or was tormented by it, but I can’t remember what it actually felt like, unless maybe there’s a particular trigger or a similarity with what I’m feeling now. After the phone appointment I was very tired, afraid I’d overdone it, and hence occupied by physical pain and dread, panic, blame, regret. It was a tiny glimpse of what the hospital and its aftermath would be like, and for the next few hours I was crawling with anxieties as the truth of this doomed enterprise came home to me. And then I forgot it again. I took some drugs and calmed down and slept, and by Sunday I was back to normal. Composure. Insouciance. Phlegm.
But I do remember the fact that the change in mood was as bad as the physical stuff, and not much easier to shake off. When Milton’s Satan says,
The mind is its own place, and in itself
Can make a Heaven of Hell, a Hell of Heaven
he seems to believe that he can believe whatever he wants to. I don’t think free will stretches that far, or at least not that fast. As Peter O’Toole says in Lawrence Of Arabia, you can do what you want, but you can’t want what you want: we’re all as encased in our minds, their dispositions and preferences, as we are in our bodies – however much that may be. I realised I could expect to return from the hospital not only physically devastated but also irritable, depressed and unable to concentrate, and perhaps also under the thumb of a despair that might discourage me from tackling all the rest. It feels strange, losing the illusion of free will, but not new; I’ve always found in hard to distinguish between what’s me and what’s illness.
These concerns didn’t affect my morale because, well, let’s see, soon they were all lost like tears in rain, innit. But the CFS expert spoke to the neurologist about how severely fucking decking the hospital would be, and the neurologist emailed me apologising because he’d changed his mind and decided that “an admission would not be in your best interests at the moment.” I’m partly disappointed, or at least deflated, partly relieved, and partly embarrassed that I’ve written a whole blog for something that didn’t happen. Oy.
The next step, now that I’ve finished scoffing my hospital sweets, watching the whole of Breaking Bad and losing the weight I put on as a consequence of scoffing all my hospital sweets, is occupational therapy. The CFS Expert has recommended me a neurological occupational therapist and I hope between us we will have expertise enough to get me moving in the right direction. Thank you to everyone who offered visits or services or just goodwill, it meant a lot to me. I will also at some point post CFS Expert’s answers to my list of questions, because Genevieve wanted them. And as I’ve already mentioned, comments can now be left on this blog anonymously or with a nonsense name or email. But you can all keep commenting on Facebook if you prefer and I’ll just keep manually assuring the blog readership that these comments exist. It will allow me to exaggerate their volume and fervence, for one thing.