Sunday, 20 May 2012

Wow! What a difference a question makes...

This was the question that made all the difference: "What do you do when you have a seizure and what should I do?"
Blimey! I don't hear that very often - in fact, I'm not sure I've heard it before.
Hot on the heels of me blogging about the optician who assumed I fell and convulsed, without asking any questions (No, not THAT kind of epilepsy), came a meeting with physiotherapist Pauline at Kingston Hospital.
Pauline made no such assumptions - even though the fact I was there after breaking a wrist during a seizure might have slightly excused her. She asked me whether, in the event of me having a seizure, she should call an ambulance ('No, thank you') and whether I generally needed to go to hospital ('No, never - well unless I break a bone. Longterm use of medication has made me snap easily!! Osteopenia.')
According to Epilepsy Research, just over half of all epilepsy sufferers have the flake and shake (grand mal - although now we're supposed to call them tonic-clonic) seizures. Which means around half don't.
Why is that significant?
Because so many people, every day, are misunderstood when their behaviour doesn't fall into the neat little descriptive boxes that society has set out for them. So even if that behaviour is out-of-the-ordinary, it's understood if society accepts that 'people with epilepsy flake and shake' - and that's makes it utterly frustrating and unhelpful for the rest of us whose epilepsy doesn't comply!
Take note, people: we need more Paulines for a positive experience.

Sunday, 13 May 2012

No - not THAT kind of epilepsy...

I could see the optician look worried when I told her my last seizure had been only two days ago. So I thought I was reassuring her when I explained the one before had been a whole week before that. But actually I had just increased her concerns.
"Is that normal?" she asked.
Well it's not 'normal' to have seizures, is it, but if she meant - as I expected she did - was that the general frequency, the answer was 'yes'. Unfortunately I'm going through a bit of a bad phase and having seizures several times per week.
But then I saw her look at the floor! And I realised what was going through her head. I may have been talking to a woman of (albeit eye) medicine but when I said epilepsy she only had one picture in her mind.
"I won't fall on the floor."
"Oh?"
"Or convulse."
"Oh."
"In fact if I had a seizure while you examined my eyes, you might not even notice."
"Oooh."
"If you saw me doing something strange, it would be saying 'no' over and over, looking vacant for about 30 seconds and probably not remembering much about that when I 'came back in the room', as it were. I might want a glass of water and then we could carry on."
"Oh I see."
"There are many, many different types of seizures."
"Yes, of course."
I don't know why she said that as though she suddenly knew a lot about epilepsy. If she had known anything about it she would have asked me in the first instance what type of seizures I had. She didn't. She presumed I had the stereotypical seizure until I explained.
These sort of situations could make me cross. They don't.
People know very little about epilepsy because many people with epilepsy are discouraged from talking about it.
If the condition wasn't hard enough to live with, the public ignorance of it makes it all the harder!
I suppose I sometimes dare to hope that those more closely involved with the world of medicine may know a little more than others.
But in reality epilepsy remains a hidden condition, buried by a society which doesn't want to talk about it.


Epilepsy v hangover in the workplace

Epilepsy has had some bad press. And the media hasn't corrected myths, leaving people without epilepsy in the dark and people with epil...