My breakdown…

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.

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9 thoughts on “My breakdown…

  1. Your intention to keep writing, under these circumstances, is courageous. I hope you can stabilise your illness, Ron, and wish you all the best. I’m glad you have a friend like Fi to call on, and please don’t be too independent/stubborn to ask for any help you may need from any quarter that can provide it.

    When it comes down to it, I suppose those of us who can’t hope for a recovery have to try and find our easiest way to just “be”. Be as well as you can, the easiest way that you can. If I believed in a god I would ask her to bless you. You are a top geezer. xxx

    • Second attempt – first just vanished!

      Sadly, Fi leaves the country on Wednesday, possibly for good. She’ll leave an unfillable void in my life – I guess, unlooked-for, I’m more than half-way in love . . .

      As for writing, I don’t feel courageous – it’s just what I do, and I can’t imagine not doing it. Luckily, the process takes place mostly on autopilot (nope – no idea how it works, I’m just content to let it), and I hope that whatever mechanism is involved might bypass the holes in my memory.

      Time will tell.

      I’ve been an atheist since the age of six, when I didn’t even know there was such a thing, after it dawned on me that the only recipient of my bedtime prayers was an old robe on the back of the bedroom door – the rest, as they say, is history.

      I am intrigued, though, by the fact that the god you don’t believe in is female. 😉

      Ron

  2. Ron,
    A thought occured to me, a close family member was very poorly 2 years ago. post op had lost lots and lots of vital vit and minerals. they had an almost identical symtom as you. basically had become so weak and had lost so many blood salts they to all intents and purposes reacted in a very very similar way to you.

    The memory loss, halucinations, fear, holes in memory, appeared rational until you questioned a but more. In fact the same type of diagnosis you have come up with.

    2 years on they are back to themselves, a good diet, rest and taking st marks fluid (a stronger version of diaralites) I follow your writing and I am so glad you have come through what by anyones atandaard is horrific. I just wanted to say – what you descibe is reversable and considering how ill you were, it is highly liklely your blood salts where deeply affected.

    • Apparently every aspect of my metabolism was trashed to a greater or lesser degree, and the i-v chemical soup that should have remedied that kept rupturing my veins, so I had to take a whole load of supplements orally instead, which slowed things down a lot.

      One thing I’m glad about is, finally, getting back onto my normal time scale – after six weeks I was really locked into hospital time until just a few days ago.

  3. I told you about my Uncle who saw insects and things when he was on morphine after an op.

    When Dad was in the hospital, he was convinced that the nurses were having parties in an office next to his bed. He told us that there was music and loud laughter and talking, and that he could hear them pouring drinks, and the bottles and glasses clinking together.

    Dad was also convinced that the man in the bed opposite him was a spy; there to spy on the nurses, doctors, cleaners and patients. The poor man was seriously ill and very feeble, but that was just all put on to confuse the staff, according to Dad.

    Once Dad was stabilised, all of this stopped and he couldn’t remember much of it and thought we were making it up.

    Dr. Google isn’t always right Ron, and can diagnose a lot of different illnesses where they really don’t exist. I totally understand the need to find a reason for symptoms, but using Dr. Google can scare you witless.

    Going back to your POTS post, I have more than half of those symptoms, but I don’t have POTS.

    It’ll take a few weeks for your GP’s surgery to get all the information from APH, then you can speak to your GP and ask him what could be the cause of all your symptoms.

    • Re your second para – your Dad was probably right, Tricia – he’d have been right on the money in APH, when many nights the overnight staff dragged spare mattresses down to the darker reaches of the ward, armed with a few bottles and a radio, too. And I sure didn’t imagine that! It normally happened when the regular day shift drew the short straw for nights.

      I don’t trust Dr. Google – but I do trust my ability to assemble facts and rationally analyse them – not having a pop at you, btw – as there were two conditions in the frame (the other being Adult Onset Leigh Syndrome, which is extremely rare).

      Leigh can’t be completely excluded, but was discarded as Wernicke-Korsakoff is an absolutely perfect match from all angles. It doesn’t scare me witless, though – as you know, I like answers. It is – just remotely possible – the wrong answer, though nothing else offers itself, but for now, as it clears up so much of what’s been bothering me, I’m happy with it. I have answers.

      And, if I am right about it, I’m no worse off than I was – and no better – it simply clears up the mysteries.

      I think I might well have PoTS too, but as I said in the comments, I’ve no interest in it as it can take years to diagnose – been there with ME – 10 years – and I probably don’t have the time to do that again. I surely don’t have the inclination!

      How did your weekend go?

      • It was only Dad who heard the parties though. The other patients didn’t hear anything.

        I had a panic attack in the car on the way up, and felt very anxious all Saturday afternoon, until common sense prevailed, and I took a Diazepam.

        Sun shining, birds singing, lambs gambolling, great company, tasty food, slept the whole night without waking up once. Couldn’t ask for more really.

        I’ve contacted Cruse Bereavement to see if they can help me, but I don’t know if they’ll be able to see me before Mum’s birthday on the 15th.

        • Hopefully Cruse can fit you in, and be of some help beyond the obvious – time.

          I was the only one who saw the mattresses being hauled into dark corners, but that was because I was continually back and forth to the toilet every 20-30 minutes, past the storeroom where they were kept. And you’d be surprised at how little attention patients pay to what goes on around them, so I wouldn’t dismiss your Dad just because no-one else noticed. Not unless paying attention was completely out of character.

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