30 March 2009

A lost day, or not fit to work

I skived off from work for a couple of days last week.

Thursday I just wasn't in the mood for work, so I pottered around the house instead and surfed the net, and just generally lazed. I did use some of the time productively, to berate my utilities company for not changing my meters - the previous tenants were on prepayment card meters, no use to me as I have epilepsy, and if I have a seizure then the credit runs out, I'll be cut off for hours before I'm well enough to go to the shop to buy a top-up for the gas or leccy. If the gas goes, I'll have no heating or hot water. If the electricity runs out, it's even worse, as the boiler needs electricity to power it, so I'd be left without heating, hot water and power. I've asked the utility company 8 times this year to change the meters, and told them 4 times I have a disability. Each time, I was told that as I'm disabled, special provision could be made. Unfortunately, the utility company still didn't bother to record my request for a meter change, or the fact that I'm disabled. My berating did produce a result - a date for the meter change - so I felt a bit better about skiving.

On Friday, I caught up with an email backlog, then lunched with a bunch of digerati colleagues and friends in town. A quick dash home for 2 hours to sift through more mail and the news, then I was off again to an NUJ meeting and I didn't get home till late.

So on Sunday, I settled at the PC with the aim of catching up on some of the work backlog. I managed to get several hours of solid copy-editing work done and was nearly at the end when I suddenly "weirded out". This is how I describe having a simple partial seizure. Not everyone's simple partial is the same. Mine generally involve feeling weird (and I really can't get more specific than that), with a horrible rushing sensation. I did what I always do - lie on the floor.

I do this for 2 reasons. 1) it's better than being at the desk in case it turns into a full-blown seizure and I come round to find QWERTYUIOP imprinted backwards on my forehead. Admittedly, this would be very rare for me, but why take the risk? 2) I usually throw up after a seizure and I definitely do not want to puke on my keyboard. Have you ever tried to clean vomit off one of the most complex components of a PC?

The SP lasted about 90 seconds. So far it's cost me 24 hours of my life.

I stayed on the floor for a good 10 minutes after the weirdness subsided. Then I tentatively got up and sat back at the computer. I abandoned work as my brain was too scrambled, but pottered on Twitter while waiting to see if I might still throw up, as I felt horribly nauseous. In the end, I wasn't sick, but I ate nothing for supper and I was so tired I went to bed at 9pm.

I managed 9 hours' sleep, but it was a restless 9 hours, with plenty of wakings, flinging the duvet off and on, and struggling to get comfortable. So I awoke this morning feeling a bit groggy.

- never mind, I thought, I'll be fine once I've had a cuppa and woken up a bit.

Ha ha! I spoke too soon. I felt even more exhausted as the day unfolded. Vague plans for a nap had to be abandoned as my desk editor sent back urgent chapter amends for the book I'm working on.

90 seconds - the only difference between a simple partial and a tonic-clonic seizure is that the former doesn't usually give you a post-ictal headache. But you still lose a whole day of your life recovering...

Another early night beckons.
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4 comments:

Anne Brooke said...

Lordy what a day - so sorry to hear this. Hope things get better soon.

Love & hugs

Axxx

wordsmith_for_hire said...

Aw, thanks! I'm still rather tired, but otherwise ok. That was fairly typical for me. I don't have seizures very often, but I usually lose a day afterwards!

The Bureauista said...

Gosh, sorry to hear about that. I knew nothing about epileptic seizures before you wrote that, and I found it very interesting - not much of a comfort for you of course, but thanks for sharing.

wordsmith_for_hire said...

I've always been very open about my E, since I was diagnosed in 1997. The simple partials are relatively new for me - I get them because I'm on a fairly new drug that is radically different in the way it works. It doesn't stop seizures by damping down all electrical activity in the brain like most drugs, but by stopping any disruptions spreading and becoming full-blown seizures. So what I have now is tonic-clonics trying to start and manifesting only as simple partials instead.

Despite that, the aftermath of a SP is every bit as exhausting as a TC. Obviously I don't get the headache, nor (thankfully) the stiff muscles from the convulsions or bitten cheeks. And as I stay conscious I don't get injuries either. MY TCs are rare now - only 1 or 2 a year these days.

Epilepsy is not widely understood, which is why I've written a fabulous new book about it (out next month).