If anyone is wondering why I’m still writing about myself, I have to confess that my brain is no longer working very well – I’m coming to why – and writing what’s in the forefront of it is my best shot at writing anything worthwhile.
I can’t begin to tell you how heartbreaking that is. For years my intellect and the wordmill in my head are all I’ve had – because physically, almost nothing worked – now that’s being taken away from me.
It should come as no surprise, then, to learn that I’ve been devoting a hell of a lot of time to researching why. Finally, I believe I have an answer. It’s not one I want.
In hospital, it quickly became apparent, talking to doctors, that my memory was full of holes. This has been a problem for as long as I’ve had ME, and it’s always been temporary – lost words, missing concepts, would always reappear, sometimes sooner, often later, but they’d always come back.
Now, as far as I can tell, what’s lost is gone forever and not coming back – sunk in my very own Dead Zone.
What set off my line of enquiry is the fact that I’m taking 300mg of Thiamine a day, with no idea why. There are remarkably few suspects, and the one that fits my symptoms perfectly is Wernicke-Korsakoff syndrome. This is a brain disorder caused by Thiamine (vitamin B1) deficiency and is also known as Korsakoff psychosis; Alcoholic encephalopathy; and Wernicke’s disease.
This is an offshoot of alcoholism and the quibble I have is that I’m not an alcoholic. Never have been. For many years I’ve gone to the pub just once a week. I don’t drink at home, never have, aside from a very occasional single drink. I cannot possibly be an alcoholic in any normal meaning of the term.
However, there is no getting away from the fact that the description of Wernicke-Korsakoff syndrome matches precisely what happened to me in APH, whether I like it or not.
After I’d been there a week or so, I began to hallucinate. I’d see huge spiders that weren’t actually there (a lot of us did – it was by no means just me). Over a few days I added a variety of small animals – black squirrels in the main – to my menagerie.
I regarded it mostly with amusement, I knew none of it was real, and simply put it down to radical changes in my meds. Possibly my circumstances, too.
However, talking to a couple of friends recently, they felt much less sanguine than I, and both are convinced I’d had a breakdown. It peaked when I heard some of my fellow patients threatening to harm me, and to tamper with my food. So I complained to the ward sister – and my memory promptly shut down. I couldn’t talk about it coherently.
Anyway, long story short, she decided nothing had happened, those accused denied everything (which, of course, they would if guilty, so hardly conclusive evidence that I’d blown a fuse), and I asked to be moved to another bay. That’s how I wound up in the four-bedder where I wrote Corner People. Guy there saw spiders too, while I didn’t – my problems went with the move in that respect, at least.
I’ve said here that my very good friend, Fi, kept me sane in hospital. Talking to her yesterday, what she’d also done was watch me, time after time, go into meltdown mode. Not badly, but not good either. Another friend, with whom I’d corresponded only by text, reached the same conclusion all by herself – they both are convinced I did have a breakdown. Possibly more than one. I sure as hell had a doozey the day I got home.
If I did have a breakdown – and I’m not denying it – I think it’s understandable given the appalling condition I was in by the time I was admitted to APH, both mentally and physically, but I offer you this for consideration:-
Symptoms of Wernicke encephalopathy include:
• Confusion and loss of mental activity that can progress to coma and death
• Loss of muscle coordination (ataxia) that can cause leg tremor
• Vision changes such as abnormal eye movements (back and forth movements called nystagmus), double vision, eyelid drooping
• Alcohol withdrawal
Symptoms of Korsakoff syndrome:
• Inability to form new memories
• Loss of memory, can be severe and permanent
• Making up stories (confabulation)
• Seeing or hearing things that are not really there (hallucinations)
So you see my problem – this is an absolutely perfect match for, well, me.
The progress can be halted by a good diet (check – one thing the dieticians insisted upon – eat a high-protein diet, and pig out on all the carbs and high-calorie food I could), and by supplementing with Thiamine (check, 100mg, every 8 hours). Not drinking, or only doing so in moderation (bloody big check), is also a good idea.
OK – I KNOW the bugs and squirrels weren’t real, as did most others who saw spiders but what I don’t know – and what absolutely fucking terrifies me – is was the plot against me also imaginary? Or did it really happen? And why, that’s the kicker.
My gut feeling, given that I’d had a row with one of the plotters earlier, is that it was real. Can I know that for sure? No. And that scares me.
Normally, I have an extremely visual memory, but in this instance while I recall the threats with absolute clarity, there is no accompanying image, and that is very deeply worrying, because there should be if it was real.
Based on what I’ve read, and discussed above, if I take care of myself, eat well, and drink little or nothing in the way of booze, I can stabilise – I probably have already. I’ll get no worse – but I’ll get no better either.
What you see, boys and girls, is what you get. I have no idea if I can carry on writing on a broader canvas. I’ll give it my best shot. Hell, I always do, no-one can accuse me of being a quitter – but it might just be outside of my control. I really don’t know.