Hey brain: why you no work?

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It’s Saturday afternoon and I’ve had three (that I’m aware of) epileptic seizures this week. Maybe more on the horizon. My overwhelming reaction is one of disappointment. Quickly followed by boredom.

I had a couple of nighttime seizures earlier in the week, which left me feeling like I had the mother of all hangovers each following morning. The kind where you can’t bend over to tie your show-laces without searing head-pain and the feeling that your brain is about to pour itself out of your skull via your nostrils. The kind that leaves me fumbling for words and feeling quite spaced out for hours afterwards.

I then had a night of only four hours sleep Thursday night, due to a crappy hotel in Dublin and its proximity to some particularly shady nightclubs. (Top tip: never stay in Harrington Hall on Harcourt Street, unless you like to listen to screams, fights and club music all night).

So, this morning’s absence seizure wasn’t entirely unexpected. I’ve had a busy week and have missed a lot of sleep. The perfect formula for unwanted brain-spasms.

Still, unexpected is one thing. Unwelcome is something else. I slept for about 10 hours last night, but still woke up feeling hollowed out inside. Managed to get as far as Starbucks and back today before I had a passing absence seizure in the hallway of our apartment and took myself off to bed for an hour.

And that was after cancelling my training run this morning. Only a few weeks until the Royal Parks Half-marathon, so I should really be out there, pounding the pavements.

But not today.

(And no, the irony isn’t lost on me – I’m training to run a race to raise money for Epilepsy Action, while my own epilepsy prevents me from training…)

I’m feeling better, but still not myself. I’d actually like to sleep now, but I’m afraid that if I do, I won’t sleep tonight and we’ll be back to square one.

We’re due to go to the cinema this evening and I’m really going to have to see how I feel after dinner before committing. Unless my brain tidies itself up by then, I’m not sure how it’ll cope with a couple of hours of ‘The Magnificent Seven’.

In summary, epilepsy sucks donkey balls. But then we knew that already, right? So I’m really only writing this to make myself feel better about the whole thing, put it into context and move on. I think my epilepsy tends to make me more introspective. Hopefully not self-pitying though. This is where getting the terminology right is key: I live with epilepsy, I don’t suffer from epilepsy.

So, as ever, tomorrow is another day. I’ll chalk this one up to experience, rest up and recharge my batteries. But if epilepsy was my flat-mate, I’d be leaving them a post-it note on the fridge right now.

Next!

  1. It sounds very difficult to live with. I think it’s great you’re raising money for the cause – I hope you find the week ending on a higher note : )

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    1. Thanks! I should be fine in a couple of hours.

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  2. Hey – I know it’s shit…but a little note, I was at a conference last week in Barcelona and talked to some friends in the industry bout our tough 6 months with Luke & coming to terms with his diagnosis and living with epilepsy – but I used you as an example of an adult living and working independently, travelling and succeeding in life with epilepsy not completely controlled. That is the life I wish for my son (should he continue to find seizure freedom hard to find) to keep trying and not let his illness set limits for his life. Just thought you should know – I find you inspirational 💜

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    1. Thank you – that’s a lovely thing to say 😀

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