Epilepsy and Me

In my family if you don’t have diabetes, you have epilepsy. A nice wee surprise waiting for you, generally at the onset of puberty. Illness A or illness B. It’s quite the pot luck!

I suppose I was around 14 when my mum started noticing the signs, a random bowl of cereal all over my face in the morning, a mascara wand poked directly in my eye, a jerking elbow trapping in the door frame bashing against it repeatedly (you can laugh, it’s funny). As an epileptic, sister of an epileptic and niece of an epileptic she was more than qualified, knew exactly what was going on and took me to the doctors more as a formality than as a real question.

Do you know though? It took 18 months from when I started my break-dancing displays until the day I received a diagnosis. Mainly due to one ridiculous doctor, a locum, who sent me out of the room and told my mum I was attention seeking. Luckily my mum was in strong disagreement with this and pushed until I saw the specialist who told us I had a textbook case of juvenile myoclonic epilepsy.

It was a bumpy road for a while, school was not fun and the sick bay became my second home. Even now, seeing people I went to school with reminds me of this dark time in my life, so to them, sorry if I’m a bit weird. It’s not you – it’s the purple monster you remind me of! Studying for exams, trying to have a social life and wondering whether any boys could possibly find someone like me attractive was hard, I started to think a life without tablets would make everything better. Then of course I realised, as so many do, that it only makes things worse (particularly after ambulances at school and regular doses of Valium).

But then, after a year out before university to get myself healthy, de-stressed, and focused I was good to go. I had a good run of a couple of years taking my tablets regularly and being fit-free before my beloved Gran died and the grief meant my tablets took a back seat to wine and nightclubs. Not so unusual behaviour from an epileptic still in denial there, but I learned my lesson after a series of fits to end all fits and a scan which showed an awful lot of epileptic activity. Only an idiot would ignore that and I’ve taken my tablets properly ever since. So with the exception of another couple of blips caused by an African tropical disease and some poisoning acquired from a doctor not paying enough attention to what epilepsy drugs I was on, I’ve had 17 years of relative calmness within my diagnosis.

The drugs I take are the same as I was on as a teenager (albeit a lot more of them) and I can honestly say, with regular sleep, as stress-free a life as I can make it and taking the tablets as prescribed, I mostly forget I have this family heirloom. I am incredibly lucky, I know how much worse it could be and I am thankful every day.

So that’s why I am wearing purple today (more info at www.epilepsysociety.org.uk), to say thanks to all the doctors and nurses who have looked after me over the years. It’s also to raise awareness for all the work that still needs to be done to find better tablets and maybe even a cure. I hope that the people around the world with epilepsy who suffer much worse than me can one day perhaps mostly forget they have it too.