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.

Monday, 1 October 2012

Would you look for it - and what if you found it?

I don't have one but I know several people who do. I'm talking about a piece of safety jewellery (bracelet or necklace) which details an individual's problem and/or gives a phone number which gets to a family member or friend.

The concept is excellent, particularly for people who don't come round from their seizures very quickly. They need somebody or, at the very least, 'something' to be doing the talking for them. But.....many members of the public aren't aware of this safety jewellery so don't look for it. And, actually, wouldn't know what to do if they found it. So people can end up with a worrying situation on their hands while answers may lie just inches away!

But paramedics would know better - wouldn't they??? I'm sure some do but, once again, many don't! It's partly because of this lack of awareness that some people with epilepsy prefer to wear a bracelet in the hope that paramedics will see the jewellery when they take a pulse reading. Yet some have reported that although their pulse was taken, paramedics still failed to see the bracelet.

The ultimate overlooking story I heard came from a woman who chooses to wear a safety necklace. Paramedics attended to her after a seizure, failed to spot the necklace and she, in drowsy post-seizure state, could only manage to point to it. "That's lovely" was their reply as they continued to ignore it!

Basic Medical Alert bracelet (details engraved on reverse of plate)
Of course there are many positive stories where safety jewellery has reunited a poorly person with a loved one or informed medics of the specifics of somebody's condition.Everyone I've asked, who wears the jewellery, suggests that it's been useful in about half of all 'situations'. They feel better with it than without it and that counts for loads.

Reasons for not wearing safety jewellery seem to fall into two categories: it's not needed (I, for example, am 'back in the room' too quickly to need help.); it's not wanted - people don't want to walk around wearing a 'badge of disability'.

The latter issue is being addressed by major players in the market including Medic Alert. Very fashionable designs such as Sweetie bracelets, sports bands, Shamballa and beaded bracelets are now available to appeal to anyone wanting to marry safety with style. Occurs to me, though, that if the traditional basic silver jewellery isn't always spotted, a very good marketing campaign is needed if the trendy stuff has a hope of making an impact.
Shamballa - Medic Alert
Sweetie bracelet - Medic Alert
For the record, I'm very in favour of safety jewellery. I simply think more people should know more about it. I've shown a few styles, from a couple of companies. These are designed for women - there are many more for men too. 

SOS Talisman contains an information strip


Tuesday, 25 September 2012

Hello Hong Kong: may you continue to Enlighten all!

Really pleased to welcome on board, Enlighten - Action for epilepsy, a charity facing a hideous uphill struggle. Yes, I know all epilepsy charities have a hard time but listen to this....

Until relatively recently, the very word for epilepsy in Chinese (dean gan tsing) suggested craziness or madness cented on the character name 'dean'. Only in 2010 was the word changed to 'no gan tsing' disassociating the condition from the crazy character 'dean'.

Is it surprising then, with their society being so harsh that the 65,000 people in Hong Kong with epilepsy tend to squirrel themselves away, hiding their secret because they fear discrimination and social exclusion. Although...when Enlighten's communication officer contacted me, I wonder if she thought the UK was light years ahead. I don't think we're so very far ahead.

I think we've made a little more progress but - and here's the troubling bit - it seems to me mainly because lots of people in the UK now know what they're supposed to think or say about epilepsy. What many feel sadly hasn't changed much.

What has changed, is that there are many of us doing our own little bit to fight the discrimination and social exclusion that still exists - despite laws that are in place to prevent it. We're trying to enlighten people too.

I was talking to a young woman, 24, the other other day who said she found it hard to find work - even voluntary - and friends were few on the ground because her seizures (the full-performance tonic-clonic type) scared them off. That really hasn't been my experience but it's symptomatic of the fact, Hong Kong, that you aren't so far behind!

Another epi-friend pointed out that while most of us, in the UK, would imagine that there are no longer any issues facing members of other ethnic groups, members of other ethnic groups might tell the story differently.

While the subject of race has been heaved onto a public stage and debated at length, epilepsy which has been around as long, has stayed in the wings and has yet to make a real entrance anywhere in the world.

But we are definitely getting somewhere. It's people like those behind Enlighten that will make a difference to the lives of so many people who felt they had to hide away. Thank you for adding to the voice that's beginning to be heard.

Let's keep at it. Together we will get people out of the shadows and make sure that no society ever again dares to demonise the name of epilepsy.

Wednesday, 12 September 2012

Life was rosy - then at 52 he developed epilepsy

Epilepsy is limiting. Many of us get the chance to get our heads round that, if you know what I mean, because our minds start misfiring early in life. But can you imagine if you've been happily motoring along life's journey and suddenly your brain flips a switch at the grand old age of 52. You have to give up your job, your driving licence and adapt your way of life  - because you get 'that thing called epilepsy'!

That happened to Ryan* when out-of-the-blue two years ago, aged 52, he developed a form of epilepsy. He was employed as a security guard and, with the best will in the world, people who have recurrent seizures can't hold onto that kind of job. Of course, he could no longer drive either and because in the UK we have to be seizure-free for one year before the DVLA reissues a licence, he's still not driving.

"I thought my life had come to an end!" he says. "Everything I knew was taken away from me."

That seems a bit dramatic to me (and I've told him so - but, then again, I was a teenager when I was diagnosed so have lived a pretty epi-ful life and had plenty of time to get used to it. Yep, in some ways I've had it easier by having it longer!)

He says: "I kept telling the professor he couldn't be right when he diagnosed 'epilepsy'. I told him I didn't fall on the floor and shake. I didn't believe him - and I didn't want to believe him. I thought my life would be over."
Ryan wanted answers - why had he suddenly developed epilepsy? There had been no accident so no head injury. There was no history of epilepsy in his family. It had descended without warning for seemingly no reason. But doctors had no answers for him. He had to accept that sometimes, it just happens. So what does Ryan (who now realises, by the way, that his life is not over) do when he has a seizure?

"Well, I need to sit, otherwise I lose my balance and sort of stagger around. I get a dreadful headache and tremble - although people can't always see that I'm trembling. Afterwards I feel very, very tired and I just want to sleep for maybe two or three hours."

Apparently some people might even think Ryan was drunk if they saw him during a seizure - and that's fine by him because even two years down the line, he's told very few people about the diagnosis. He would rather people make that assumption than 'come clean'!

It seems it's partly to do with cultural attitudes. Ryan comes from an area of Russia and although he and his sisters came to the UK when they were very young, it sounds like epi-troubles are very much hushed up in their corner of the world and Ryan's keeping true to the tradition. He hasn't told half his family or most of his friends in case they'll reject him. He's only let me tell this story by changing his name to protect his identity.

Shame...because the more of us who try to hide will only be helping to fuel society's fear of disability. Believe me, I understand the temptation. I just refuse to give into it.

*Name has been changed to protect identity.

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...