Monday, 30 January 2017

Are we ever going to make any real progress - or are the myths here to stay?

The bottom line is: there are many of types of epilepsy - and not just the type you're probably thinking of as soon as you hear the word 'epilepsy '.

I met up with some people for coffee who'd become friends during the 12 weeks we'd spent on a business course. When they asked how I enjoyed my New Year I explained it had been a funny one because I'd spent a few weeks in hospital - not an emergency but a medication change. I have a form of epilepsy and I've been on one of my anti-epileptic drugs for so long, doctors decided I'd be better off starting the medication change with supervision (i.e. in hospital).

The group didn't seem hear anything after I'd said the word 'epilepsy'. Two of the women immediately looked at the floor to make sure there was enough room for me to fall on it.

"I don't have that type of epilepsy," I sighed.

"Is there another type?" someone asked.

"There are loads. About 50, I think. And since you haven't seen me have a seizure in the 12 weeks we worked together I'm probably not going to have one now, am I."

"What do you do when you have one?"

"I'll probably go blank for a little bit - won't respond to you - which might seem a bit rude and I might put my head on your shoulder but within a few minutes I'll be fine."

"Should we call an ambulance?"

"Absolutely not. There's nothing they can do and I'll be fine - more than fine by the time they arrive."

"When did your epilepsy start?"

"When I was 15 and I didn't realise it was such a big deal then. I'm 56 now and I only know it's a big deal now because of reactions like yours. It's not your fault. It's just that society doesn't seem to have moved on, if you know what I mean. If you're not in the epilepsy 'business' it's a bit of a closed shop! We seem to be fine talking about almost any other medical condition, except epilepsy."

One of the guys asked: "What do other people with epilepsy do - cos you said there were 50 types of fit?"

"Some shout, some wander, jerk, jabber, stammer, there's a whole range of stuff.

"Funnily enough, the picture most people have in in their heads when they hear the word 'epilepsy' is not the most common seizure overall. However it's the one everyone seems to know. I think it's because television and theatre can dramatise epilepsy without having to explain what it is by using the shaking seizure type. But it means that that particular myth perpetuates and the stigma lives on."

The table fell quiet for a bit while they took in the new info - particularly about me.

Sunday, 29 January 2017

I need to tell you something - I don't drive..........

We live in a completely car-centric society and sometimes I don't know what's more difficult: telling people I have a form of epilepsy - or breaking the horribly unusual news to them that I don't drive- and at my age!
I met a couple of women at the weekend and arranged to see them this week - and then the awkward happened. (Bear in mind that epilepsy is a hidden condition and they had absolutely no idea that I had it.)
Woman Number 1 gave me driving instructions to her house.

Me: "I don't drive. Are you near a train station or on a bus route?"

WN1: "You don't drive???"

Me: "No, but I'll get to you by public transport."

WN1: "How?"

Me:" I don't exactly know yet but if you're not near a train station I can look up bus routes."

Woman Number 1 looked at Woman Number 2 with a 'that's odd, what-have-we-got-here' expression.

WN2 said: "How did you get here?"

Me: "Walked."

WNs1&2: "Walked!"

I was beginning to find this amusing but also a bit difficult.

Me: "Yes, walked."

They thought about that for a minute...legs as a form of transport. Then -

WN2: "If you don't drive, how do you do your food shopping. I couldn't carry mine."

Me: "Online. It gets delivered."

WN2: "I prefer to do it myself - you can never be sure what you get."

Me: "Yes, I'd prefer to do it myself too but I don't drive so I have to work around it."

Now they have me cornered. Either I let them believe that I choose not to drive because I'm lazy and haven't bothered to learn or I'm banned because of an offence. I could make up a story about being kind to the environment but I'm not going to lie to help them out with their prejudice. So I tell them that the DVLA wouldn't give me a licence because I have a condition where I have a type of seizure - sometimes.

This somehow satisfies the two women. WN1 tells me the numbers of buses that go near her home and WN2 offers not only a lift home but also invites me to join her on a her next weekly shop.

I think the car thing is quite funny. People will spend hours bemoaning their weight (too much); diet (when they're going to start one); the gym (when they're going to go now they've bought membership). Then they jump in their car to drive a few yards down the road to buy a bunch of something they shouldn't be eating.

People ask me if my medication helps keep my weight off. Now I think about it, I don't know any fat people with epilepsy. That maybe a gross (pun intended) generalisation. It's not because we pop pills though. It's because, to us, walking isn't a huge exercise programme: it has to be a way of life.

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...