change

First, some housekeeping. A while ago, I posted that I would be deleting posts I make here on the basis that, as I added a new one, the oldest one would go. That didn’t last, and in fact I just kept adding new posts and forgetting the ‘one in, one out‘ policy I’d just invented.

I remembered it this morning, so this blog now only consists of the fourteen most recent posts again. Ironically, of course, the post where I announced the policy is now gone.

While it’s true that if Shakespeare had the same approach, burning older plays every time he wrote a new one, we wouldn’t have as many of his works left to enjoy now (if anyone continued enjoying them after being at school, where you simply endured them — although possibly that was just me), I can personally be happy that I am nothing like Shakespeare — don’t wear tights for a start — and nothing I write deserves to be kept for any longer than two months, let alone many centuries.

It pleases me not to hold on to things, material or mental, although the contents of my garage does rather apparently spoil the purity of my material things non-proliferation intentions. But to be fair, a lot of the things in there are in the ‘new item, waiting to be used‘ category, rather than the ‘old item, used once then put away because it might be useful again one day‘, or ‘very old item, I’ve been forgotten and nobody knows I’m here‘ category. So there are a lot of things which I have bought to do a specific job, intending to get it done as soon as I feel well enough to do it. The limiting factor to most of these jobs is the feeling well enough to do it.

This is the aspect of change that the title addresses.

I’ve been diagnosed with Multiple Sclerosis now for seventeen years. For all of those years, it has been fairly mild, as this thing can go. It’s ‘Relapsing Remitting’, so small periods of annoying and inconvenient symptoms I can attribute to it — degraded balance, strength, coordination, speech, and cognitive functions — which I largely treat by resting it out.

I rest it out because over time, I have learned that you can’t beat it. Determination for it not to affect you, to not ‘be beaten’ by it, does you no good as you are four rungs up a step ladder, have fumbled with and dropped the last of the half dozen screws you took up for the one screw that you tried to get started, knowing you’d drop a few, then you dropped the screwdriver as well, then started to step down to go and get them, didn’t find the step you were expecting to find with your foot, the standing leg bearing all the weight and trying to keep it all working suddenly turned off all corrective signalling to the brain, and then you just descend back to Earth a metre away via a kind of half-second, limbs akimbo free fall in the most dignified way you can manage, hopefully on your feet. At least to begin with anyway.

And you may think to yourself, “Why the fuck do I never learn?“

There is an answer to that, and that answer is ‘I never learned anything much when I was in a place of learning, so why do I expect to be any better when I haven’t been for over forty years since‘

Anyway, normally I get the balance difficulties as the first sign that an attack is coming. I’m walking the dog, then suddenly I get what I can only describe as the feeling of full control and knowledge of where my feet and legs actually are, and how my muscles above them do the complicated balance calculations that it unconsciously has to do to keep us upright normally, having leaked out through my feet suddenly like there is a plug keeping it all in that just worked loose and fell out.

Or, refering to my charged up post and its battery and app analogy, something shorted and dumped me into power save mode, when I thought I was doing fine with at least four bars on the battery icon.

This is then followed by a few days of the rest of the suite of inconvenient symptoms. About a week is average, and it is hard to pin down what might bring it on, if anything. Certainly I almost expect to have a bout if I’ve been pushing things with work, or other physical efforts like heavy garden jobs or a few long cycle rides close together recently. The frustrating, mad and unpredictable thing is that sometimes it doesn’t, so I can keep going normally, or other times it just starts out of the blue and I can’t think why.

About four weeks ago, I got the wobblies (my easy name for the proper long medical words that, although technically correct, are too long winded to use/spell in simple husband/wife conversations/blog posts) while walking on the cliffs. But it felt different to me, because it wasn’t accompanied by the draining feeling and lasted for the rest of the day.

After the overnight recharge and for the next few days, it felt like it seemed to be there, but not quite as strongly. There was no follow up flare of symptoms, so it didn’t turn into an attack similar to all those I’ve had over the years. Then after a few days of almost disappearing, it came back.

This was new.

And another completely new thing is that it’s still here, by itself, three weeks later.

From getting up in the morning, walking is now more difficult than it was, without it being the start of a flare up, to the extent that I am reaching for a walking stick to feel safer just moving around the house and environs now, where I didn’t feel I needed it before. I don’t know if I can describe to anyone who doesn’t even need to think about walking what it feels like, apart from ‘can you imagine what if feels like to have to think about walking?‘

Of course, it feels more difficult the more tired of thinking I get, which has always been soon after waking up since this MS shit first started.

I haven’t seen a doctor about anything to do with the MS for about eight years or so. I just never felt that my mild version of it was anything more than an inconvenience, that I could manage well enough without trying to batter it into submission with whatever the latest experimental treatments were. Most recognised treatments seem to be sledgehammers for my small nuts, with most of them really aimed at the harder hitting Progressive version of the disease. Although I have done a few of the treatments before — steroid infusions, some daily injection of a ‘new’ drug etc. — but they always came with feeling worse taking them than just putting up with the occasional wobbly and sleepy week.

So I gave them, and doctors, up completely.

But change. There is always change. And it seems I might have to at least consult a doctor, just to let them know that it has changed. And it is possible, I suppose, that this may the start of more changes to the symptoms of the illness I have, which at times has been so in the background I’d been able to almost forget I had it. Perhaps I’ve even felt sometimes like maybe the diagnosis was wrong, just for a few brief, blissful moments…

Next thing then, is to begin to negotiate the healthcare system, which has also changed a lot since I last had fairly regular contact with it. First battle… getting to see a doctor.

Wish me luck.