Tuesday 17 January 2012

Me, myself and Epilepsy Action

To say charities like Epilepsy Action have an uphill battle would be an understatement. 4 or 5 people have a seizure on the London Underground in a day alone. But how many people would know what to do if they saw someone having a seizure?

The most publicity Epilepsy gets in one day is a warning about flashing lights before a news report or a film. The problem for charities like Epilepsy Action, is that this is the day to day experience of Epilepsy for people who don't know about, or have the condition.
I'm making a bit of an assumption here, but unless you were close to some who had Epilepsy or had it yourself, why would you raise money for a condition that has a stigma attached and maybe isn't very glamourous?
The issue is that it creates a downward spiral for awareness and research. You can't raise awareness as a charity without funds, but without awareness of the condition and the charity, where would the funds come from?

What adds to this uphill battle is that, there are so many different types of Epilepsy, how do you talk about one? I've had many people ask me if I can go to a club and not be affected by strobe lighting, or if I'm allowed to drink because of the condition. They wonder how I am able to cycle on my bike and if I will ever drive again? But it's okay to ask because you're unlikely to find 2 people with Epilepsy that have the same answer.

Sometimes, they even ask the best question you can ask - how does your Epilepsy affect you and what do we do if you have a seizure?

Computer screens don't trigger my Epilepsy, I love dance music and clubbing and although I am able to apply for my driving licence I haven't, because I have been 5 years seizure free after surgery and my Epilepsy came back. I couldn't live with myself if I was behind the wheel of a car and someone was in hospital because I had a seizure while driving, so I cycle instead.

I'm not the norm though. I don't know anyone with Epilepsy who is. For me if I were to have a seizure the best thing anyone could do for me is put something soft under my head and sit with me until I come round from the fit. Unlike the old wife's tale, don't hold my tongue if you want your fingers to remain in tact, don't please hold anyone down if they are shaking during a fit, you'll push their back into a hard surface and if there are any A&E staff out there, please, please don't make someone who has just come round from a seizure sit in those horrendously uncomfortable A&E waiting room chairs, when all they want to do is go to sleep!
My seizures don't hurt despite them looking dramatic, I'm not possessed by anything, I'm just in a state where electrical activity is massively heightened in a particular part of my brain and electrons fire in my muscles making them contract and relax at a high speed.

As for the underground, well unless I'm lucky, I'm usually standing because one of the many little changes I make to my life is not to stand next to the edge of a train platform - just incase.

With regards to the fund-raising if you're reading this in the UK and buy your shopping online, why not buy it here: http://www.epilepsy.org.uk/involved/mall

You would be helping to reverse the vicious cycle of a lack of finance for helping to raise Epilepsy awareness and if you decide to make that little change to your life -


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