Thursday, 10 August 2017

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 reacted loudly - and dramatically - to assure everyone else (who might have overheard) he was having nothing to do with it.

Let me explain. I'd travelled over from Windsor to Twickenham to see a copywriting client and so was dressed for a business meeting (decent dress, good jacket - that's significant.) Had popped in to see a friend and during our chat had noticed a few 'whizzies' flying around my head but hadn't mentioned it to her and she hadn't noticed anything different in my demeanour.

I arrived back at Twickenham railway station to catch the 16.22 to Windsor & Eton Riverside but as the train pulled in, the seizure - that I now realise I'd been warned about as I was talking to Marilyn - finally happened: but not as most people know it!

I was sitting down and turned to the man next to me, who I suddenly thought was my other half and asked if we were getting the train to Windsor. He said he wasn't getting that train because he was going to ********* (I don't remember the name of the place) and I asked if I should go with him.

He shouted that he'd never seen me before in my life and jumped up as if to move away from someone who seemed seriously diseased. The shock somehow brought me out of my daze and I managed to tell him I'd had an epileptic seizure. To be fair to him, I remember him asking if I needed medical help and I said I didn't.

He scarpered, the train pulled out and I was left sitting on the platform bench for 30 minutes in total silence. Nobody who witnessed the event asked if I needed anything - even if it was just to make sure I knew the time of the next train since confusion was my only 'crime'. I looked a well-dressed businesswoman, not a hooker and there wasn't the slightest smell of alcohol on my breath. Nobody had any excuse for not trying to help but people aren't good with 'odd' and matters of the mind.

The reality is, if I'd tripped and made a mess of my leg I would have been inundated with offers of help. People are good with plasters!

Thursday, 13 July 2017

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 epilepsy mainly hiding because the condition still carries such stigma.

I'm amazed that
most people without epilepsy still think there's only ONE type of epilepsy: the 'shaky' seizure.

It's maybe the most dramatic but by no means the only type of seizure. To give you an idea:

When Peter has a seizure, he stares and his leg goes cold. The whole episode is over in seconds.

Dave shouts, Julien wanders and Claire has walked out of a shop, passed security guards with a basket of unpaid goods. Rebecca jerks and Richard talks nonsense.

But for most of the time they all go about their business just as you do and you wouldn't guess anything is wrong. Epilepsy is the ultimate hidden illness.

And those I've just mentioned work, just as many people with epilepsy do, but a recent survey discovered that a massive 75% of people with the condition preferred not to tell their employers about their epilepsy for fear of being 'judged'.

However, according to Drinkaware UK, 500,000 people go to work with a hangover every day and they have no problem talking (to their colleagues, at least) about that. There are 600,000 people with epilepsy in the UK, not all of them work and they won't all fit every day.

Simon whose epilepsy is well-controlled but exists nonetheless, said: "I'm on a freelance contract. I haven't had a day's absence and I haven't had a seizure at work but I have a fear that my employer will look at me differently if I talk about my epilepsy. The truth is, they stop listening to details as soon as they hear the work 'epilepsy'."

Claire looks at it differently although she's employed by the public sector and most people with epilepsy notice a marked difference between the attitudes of employers in the public and private sectors. She's a highly-skilled cartographer in a full-time job in the Civil Service and tries to educate other staff by giving talks on the subject.

Peter said: "If - and I mean if - I had a seizure at work, I'd be daydreaming for a few seconds and then I'd get on with my work. No problem and no productivity lost. The bloke next to me might come in wasted from a good night out the evening before. He'll be on half-power all day, productivity down by 50% but he'll have no trouble talking about what a good time he had and bragging about how much his head hurts - all day!"

'That can't be right'
There have been times when the person diagnosed with epilepsy simply doesn't recognise that their symptoms fit the understanding they've had of the word.

Take 52-year-old Ryan who found out late in life that he had a form of epilepsy - but wanted to argue about the diagnosis.

He said: "I kept telling the professor that he couldn't be right when he diagnosed 'epilepsy'. I told him I didn't fall on the floor and shake."

Ryan loses balance, trembles and suffers a horrible headache. Like many others with epilepsy, he has has been mistaken for being drunk and would prefer that people make that assumption than have to 'come clean' with them. Ryan comes from an area of Russia where, he says, cultural attitudes are harsh and for that reason he hasn't even told some of his family about his problem.

It is the easiest way of representing epilepsy on TV and in the theatre and I suppose that goes a long way to explaining why people know so much about it and little else about other types of epilepsy, of which there are many.

To bust a few more of those myths that are hanging on, the truth is that many of us do NOT:
  • shake
  • froth at the mouth
  • bite our tongues
  • want or need to go to hospital after a seizure
  • have problems with flashing lights
And - to correct a very out-of-date myth:
  • it's biologically impossible to swallow your tongue!

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...