National Epilepsy Week 2010

[Elaine H]

Hi Guys

Not been around for a while, but wanted to fill you in on my efforts for the cause.
As the title suggests, 14th -19th June, was meant to be a week for raising awareness here in the UK, it was also Nat Refugee Week, and Nat Carers Week, both got a lot more of a mention than us, apart from a pull out booklet on epilepsy in yesterday's Guardian, there was no mention of it. I did my bit on local BBC Radio, and got us a mention on BBC Radio 2, but sadly, a lot of people had no idea it even was Nat Ep Wk, what a surprise?!

I just felt a bit deflated at the end of the week, and felt a bit like a one woman crusade in my attempts to tell the world to please just listen to us, understand us, accept us?! Is anyone really listening, the two main organisations to do with epilepsy in the UK do a fantastic job regarding information for us, helping us, answering our problems, and listening to our worries etc, but during this one week out of the year, they should be "out there" talking to those who need to understand, with radio and tv, documentarys, films, magazines,a mention in a soap opera, how about a celebrity with epilepsy coming forward, and generally getting people to talk about that dreaded word, epilepsy!!

We aren't so scary are we, oh epilepsy, no it's ok, the woman at no 72 has it, she's perfectly normal, no, it doesn't mean she's going to collapse every five minutes with her legs in the air, foaming at the mouth, oh really, forty different types of seizure?! Wow, I never knew that!! For Godsake, we have got to get together, talk talk and keep on talking!! and as far as I can see, every day of my life living with epilepsy, in this the 21st Century, we still have a long long way to go!

I am just waiting to start as an Epilepsy Information Volunteer, on behalf of National Society for Epilepsy, I'll be lucky enough to visit schools, hospitals, and clinics, talking to newly diagnosed people, and simply telling them where they can get help, and what help is available, can't wait for that, there is a lot of help and info about in the UK.

I am also honoured to have recently been asked, to write a piece for a special edition of the academic journal "Seizure" this special edition, will mark the 60th anniversary of the founding of Epilepsy Action, the largest member-led epilepsy organisation in the UK. I shall be writing about Epilepsy stigma, and how we have moved from global problems to global solutions, if anyone has anything they feel would help me, please don't hesitate to let me know?

I've gone on a bit haven't I? Oh, by the way, I am seizure free now for about five weeks!! Keep them crossed for me guys, I also could have just landed a new job, again, I'll let you know. Keep up the good work all of you on the same journey as I am, lets just talk, and more importantly, lets keep talking!

Lotsalove and hope you are all doing well

Lainey

xxxxxxx

 

[Endless]

Lainey,

Way to go! Think of education like rolling a giant boulder. It goes slowly at first, just gently rocking the heavy rock. Soon it begins to move a little, then with inertia it begins to move a lot. Before long it'll be moving fast and nothing will be able to stop it!

On the stigma about epilepsy, if you could write something about how people think it is a type of mental illness, and that we somehow cause our own problem, I'd appreciate it. Even members of my own family think this, and it's painful and unfair. Would they be saying that about someone with lukemia, or a brain tumor?

Often times people get confused about things they can't touch or see the evidence. There are heavily ingrained images from even recent history about people with epilepsy confined to mental institutions. Even doctors and psychologists confuse the symptoms of Temporal Lobe Epilepsy with mental illness, and drug people with psychiatric medications to try to control it, only to make the person's medical condition of epilepsy worse.

If, in your article, you could also educate people on the symptoms of especially temporal lobe epilepsy, I'd appreciate it. Most people have never heard of it and just think we're nuts.

I could go on and on about this. Don't get me started!

When your article is published, could you give us a link?

 

[Elaine H]

Hi Hon

I sure will let you know, and if I ever get the last five chapters of my book typed up,I will certainly let the world know about it, just to help not only the guys with the condition, but their families, their employers, and the world in general! If only I could sit at a typewriter for long enough, I just get so fidgety, I am an up and about person, who cannot sit still for five minutes, the book is written and has been for some years now, but I owe it to myself, my darling late mother who we lost in 2007, and all the people who have helped and encouraged me over the last twenty five years, and continue to do so, to get "Fit For Life" out there, published read and inwardly digested, I simply want to help stop others going through the crap that I did, it's made ,me a strong independant fearless woman, and whatever I can do, so help me God, I'll do it!!!!
Stay strong mate, and hold your head up high ok? Anything I can do to help, you just let me know!!

Lol
Lainey xxxx

 

[Nakamova]

Hi Elaine,

Keep up the good work! It's hard to feel like no-one's listening, but I bet you're making a huge difference with your advocacy work. Congrats on the article, that's terrific.

 

[Elaine H]

Any Encouragement Is Welcome

Any encouragement is always welcome, I really was a bit tearful last week, I just felt that I was trying to shout really loud for the cause, and nobody was listening, last year in the UK, there was a National Shed Week, and it was all about what the great British unwashed keep in their sheds!!?? It got a lot of coverage, and National Sandwich Week, you can guess what that was about, but epilepsy affects not only the 500,000 people in this country, but their friends and families, I just feel so "upanatem", I want to get out there and speak on behalf of all the people who hide away, who keep their epilepsy a secret, who are ashamed, teased, bullied, God, I feel like I'm on my soapbox again, but if it's the last thing I do, I'll make a bit of difference in this great big horrible world (sometimes a nice world of course)

Lotsalove

Lainey xx

 

[Endless]

Well, speak of the devil. I just got back from urgent care where I went about an athsma attack, and the nurse asked me about my epilepsy. He asked me, "who is your psychiatrist?" I told him epilepsy is not a psychiatric disorder, but a neurological one. And that I didn't have a psychiatrist, just a neurologist. The nurse gave me a funny look like I didn't know what I was talking about, then asked me, "who prescribed the trileptal? Your primary care physician?" And I said, "no, my neurologist."

That's from someone in the medical profession. Sheesh.