I try not to blog too much about my epilepsy because, to be fair, 99% of the time I manage fine. My seizures are generally few and far between, I can hold down full-time work and lead a fairly normal life, and self-employment gives me the flexibility I need to live with and manage this condition.
A few things happened today, though, that are worth noting. One thing that made me howl out loud with laughter this afternoon was discovering I'm being followed on Twitter by a PR for a major car manufacturer. I've not driven for around 20 years and, just at the time I was seriously considering resuming driving - in 1997 - I was diagnosed with epilepsy and kissed goodbye to my licence, probably forever now, being realistic. The other touch of irony is that I worked on a car magazine for 18 months at the start of the 90s.
Still on the PR theme, I received a press release from nPower today, bragging about their support for disabled sports. This is the same nPower that supplies my utilities and ignored 4 requests by me to change the card prepayment meters in my home for regular credit meters. Each time I asked, I explained patiently that swapping the meters was urgent because of the risk of being left without credit on the meters if I had a seizure. Each time, nothing was done, even though nPower operates a disability scheme called Warm Response (oh, the irony!). None of the provisions under Warm Response are actually any use to me as I don't need Braille bills, someone to read my meter or any of the other services offered to the disabled. The one thing I wanted took 2 complaints (one formal and very high up) to have it executed (on the plus side, I've been offered financial compensation). I shouldn't be too pissed off at nPower's lip service - it's only one of many companies that bungs a few quid at the less fortunate because the PR it brings them is more valuable. I'd just like to see a competent service delivered.
I have insomnia too, have done for many years, on and off - prolonged lack of sleep can sometimes be a cue for a seizure. I've had two simple partials in the last few weeks - that's too close together for my liking, but probably linked to me being slack about going to bed at a sensible time most nights and making sure I stick to a proper sleep routine. Worryingly today, I had a myoclonic jerk while out and about this afternoon. It was sharp enough to make me stumble and twist my ankle (and swear very loudly). I get the occasional myoclonic jerk either as I drop off to sleep, or during it. That was my first while awake. Now it might be nothing but I'm painfully aware that, having moved, I'm not currently on any consultant's list and it's reminded me again I need to see a neurologist for a fresh check-up. Annoyingly, it'll take me up to 2 weeks to get a non-urgent appointment to see my GP and goodness knows how long to get a referral. NICE guidelines say epilepsy patients should get a referral within 2 weeks but that only applies to new patients.
Where is all this leading? I have a nagging fear at the back of my mind. I'm painfully aware that epilepsy has already had some small damaging effect on the bit of my brain responsible for speech and vocabulary. Some years ago, I "lost" a handful of words and phrases forever. I want them and they are on the tip of my tongue but I can never grasp them or remember them. I sometimes lose my ability to speak during a partial seizure. That's not scary for me, just annoying that I can't briefly communicate.
Of far greater concern is my growing realisation that I am increasingly making errors in my work. I've always made typos - now I find it harder to spot them (I can still spot other people's at 100 metres). Sometimes after blogging, it'll take me 3 or 4 readbacks after publishing to see and correct my mistakes. Worse, I often forget to type a word - on readback, it's clear a word's been omitted. I see it in my tweets and forum posts and it's embarrassing. Or my mind will be telling me to type one word but I'll actually have typed something completely different It's not affecting my copy-editing work, but I'm having to triple and quadruple check all my written work now before filing. I have become heavily reliant on the spellchecker in a way that would have been unthinkable 5 years ago. As a professional wordsmith, it's devastating on many levels. As I get older, I wonder how long I'll be able to keep working. This has been my life for 30 years. I know nothing else, can do nothing else and don't want to do anything else. With staff jobs disappearing, that's not an option, although I suspect that even if I wanted to return to being an employee (which I don't), many companies simply wouldn't take me on because it would mean having to deal with my health issues.
So I guess I'm going to muddle on for the next 10 years or so and see what happens. I'm trying not to think about it too much, while knowing that I have to start thinking about it.