I always say to people that I’m fine with having epilepsy; it’s the seizures I hate. I am one of the very lucky people to have near-controlled epilepsy and so I don’t tend to worry throughout the day that I’ll have a seizure because they are so predictable and pretty well controlled. However the other day I had been napping and was woken up suddenly. For the next half an hour I had myoclonic jerks and absence seizures.
Absence seizures are funny things to describe. In epilepsy literature they are often described as looking like the person is in a daydream, and for a most part that’s what they feel like too. I don’t tend to know I’ve had one, until I realise that I’ve missed a part of a conversation, or part of the television programme I was watching. The Mother often says “You’re doing that funny thing with your eyes again” and that’s also normally a sign of an absence seizure. I tend to blink furiously for a couple of seconds without realising I’m doing it and this, like my other seizures, happens when I’m tired. I also tend to get more frequent absence seizures when I’ve been drinking – I normally close my eyes for a couple of seconds as if I’m thinking hard about something. It’s quite interesting that my absence seizures are normally evident through my eyes.
I was chatting to my friend Lindsay today about having epilepsy. She has Crohn’s disease and has had a pretty hellish time of it due to Crohn's, and yet she was under the impression that I had had it worse because of the epilepsy. To me that is a sign that you don’t choose to cope with something: you just have to. Personally I think Lindsay has been through a much rougher time than me (and I’m right, so there) but because I haven’t experienced Crohn’s disease, and similarly Lindsay hasn’t experienced epilepsy we each think of each other’s struggles as more difficult. Thankfully it’s not a competition, and I admire Lindsay hugely for going through what she has and coming out with it with a smile on her face. And as she always says “I like to see people squirm by talking about my bowel in length”.
As I always when I’m being interviewed about epilepsy: it’s something you have, not something you can be defined by.
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4 comments:
I've always found absense seizures hard to describe but people are always fascinated when I talk about it though I rarely talk about it now mainly because it doesn't affect my life anymore, I think I've grown out of it. Since I was diagnosed as a teenager they told me I could grow out of it but before all this happened I was confident happy person and then the seizures started and then the anxiety attacks came after it and had some problems with depression, couldn't leave the house at one stage. Strangley enough, I think it's made me a stronger person because of all this, still don't have the same confidence I used to but I'm getting there. I don't talk about this enough.
I think I'm a stronger person now than I would have been if I didn't have epilepsy. I've tried to turn it into a positive thing as much as possible by campaigning for more awareness, and by keeping this blog.
I hope you continue to be seizure-free. Take care.
Jane
Hi Jane,y ou could post from time to time anyway, even if you don't have seizures!
Nuri, that's true. I do a post a month on here, but I find that if I post TOO much I'll possibly be left with nothing to say and I don't want that to happen.
I do however blog every day (which is viewable through my profile if you want something to read haha)
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