Friday, 24 February 2012

You're never too young to talk about it

Someone once told me he dreaded the thought of his young nieces seeing him having a seizure because he felt they were too young to handle it. I could understand his worry. He was a single man, no children.
I, on the other hand, am a mother of two and Remi and Lily have grown up with epilepsy in their lives. They've seen me have seizures, helped me through them and are more relaxed talking about epilepsy than anyone else I know. When I say epilepsy's been part of their lives, Remi, the eldest, was only six weeks old when I dropped him during a seizure. That unhappy incident was the result of a naive mother who panicked during an aura, tried to put him back in the crib but never made it. He's going to be 22 this year, very healthy, thankfully no harm was done. When Lily came along I was better at the mother thing. (She seems to have a gift - seizure prevention talk - but I'll tell you about that another time.)
When they were very little,  my ex-husband explained what was happening when I had a seizure and very easily settled their minds on the matter. Children are so accepting of situations that if he'd said "Mummy turns into a super-hero every now and then" they probably would have accepted that too.
As it was, the explanation wasn't that interesting to them at the time so they didn't take much notice for a while. But they always cared - and cuddled. As they grew older they became more and more concerned, in an academic way, if you like, but stayed very calm and comfortable - as they still are.
Because they are so relaxed with the subject, so are their friends. There is something in the "if it's ok with them, it's got to be ok with us" affect. It's always been the case that if an episode has happened they've handled it with no drama, no fuss and life has carried on as normal. I just get the glass of water I need. Their friends have seen that - and I think that's excellent.
And then there are my friends' kids who have been really great. There was a funny moment when Linda's middle one was telling their new neighbour, in very matter-of-fact style, that I always say 'No' before I have a seizure. Seconds later I was offered something and as soon as I said 'No' the neighbour looked terrified! Little Saul couldn't understand the reaction.
Remi and Lily and their friends have no problem talking about epilepsy. I'm proud of them for many reasons and I'm certainly proud of them for that. And I thank them (and their friends) for helping to make me feel so supported in a society which really doesn't want to talk about epilepsy. I believe that educating young people - the earlier, the better - and finally starting some conversation is the way to go.

Friday, 17 February 2012

That wasn't necessary, was it!

Was carted off to hospital yesterday by over-zealous paramedics. Yes, I had had an epileptic seizure in public. Yes, my speech probably did sound a bit slurry afterwards. Don't know. I was on my own so nobody who knew me could give 'evidence'.
The fact that, after the seizure, I paid for the goods that I had in my shopping basket with a card and had no problem remembering the PIN number - oh, and also remembered that I had a loyalty card and fished around for that because I didn't want to miss out on points - didn't convince the paramedics.
I told them, over and over, that there was no need for me to go to hospital and that would only achieve me being stranded in a place far from home.
So eventually...I ended up stranded in a place I didn't need to go to,  far from home.
The doctor I saw in A&E didn't even bother to examine me: just told me that the paramedics should have listened and advised me to get off as soon as I could rather than sit out the three-hour wait.
OK, epilepsy is so much more complex than, say, broken limbs - which paramedics are really, really good with.
So why don't they leave the problem, then, to the people who best know how to deal with it. (That'll be the people with the condition.) They finally persuaded me, by the way, by telling me I had dangerously low blood pressure. The doctor said I had blood pressure to envy!
I had told the paramedics I hadn't eaten much that day, was famished and had been about to go grab a bite to eat. I'll put it down to a lack of training that they think it's OK to decide to delay my next meal for hours by taking me to casualty.
Sometimes it may be necessary to take people to hospital after an epileptic seizure. That's never been the case with me. I'm not stupid. I've had the condition for 35 years. Some paramedics have, in my experience, understood loads - and when I've asked how they've become so knowledgable about epilepsy, they've said they've made it their own personal business to learn.
It was worrying when all three paramedics yesterday felt there was reason to be alarmed because I couldn't remember details of the seizure. Aren't they taught even that much? Mmmmm. There are 600,000 people with epilepsy in the UK....time for paramedic training to keep up!

Are we going to your place? No, it wasn't a proposition!

It sounded like a proposition, I grant you, although it definitely wasn't and the man who thought he was being propositioned react...