A random Friday in June when I was 12 is where it all began. I got home from school and fell asleep on the sofa and I was woken up when my parents got home from work later on. I made my way from the sofa to the kitchen as there was fish and chips on offer. I sat down and picked up a chip and the next thing I remember is waking up on the kitchen floor thinking a) this is cold, b) why am I on the kitchen floor and c) who is this strange man in green?
The answer to my questions were because I'd had my first epileptic seizure and the man in green was of course a paramedic. I was left very disoriented and don't remember much of the journey to the hospital or the rest of the evening but I was kept in overnight for observation and sent home the next day with a box of purple pills and an invite for an EEG.
Around 2 months later I'm at another hospital with electrodes attached to my head with this god awful glue which takes a age to get out of your hair doing various tests to see if I had Epilepsy. Not long after, I received a letter confirming that the initial suspicions were correct and I was diagnosed with Epilepsy.
My family were fantastic, I remember Mum getting me lots of literature to read through and she answered any questions as best she could. My Dad shared his own story, my brother and I had sort of been vaguely aware that Dad was Epileptic but it had been many a year since he'd had a seizure, way before I was born but this alone meant that I knew this wasn't the end, just a new beginning.
My friends were brilliant too, I grew up in a small village so had a close circle of friends, many of whom I'm still friends with today. They didn't treat me any differently, the weren't afraid of asking questions and Mum explained what to do if I had a seizure when I was with them.
Throughout my teens I was under the care of the local hospital and I would see a Doctor every 6 months to monitor my progress. I was lucky with my Epilepsy I had a seizure when I was 13 and that was it for the next 5 years. Somewhere along the line my consultant at the hospital gave my Epilepsy a name Juvenile Myoclonic Epilepsy. After a bit of research it really was like seeing the wood for the trees. It perfectly described my symptoms, I had Myoclonic Jerks (which up until this point I didn't even realise were part of my Epilepsy) and I would have the full blown seizures like the ones that are portrayed on TV. Obviously TV doesn't show the full joy of a seizure, for the record I always bite my tongue, if it's particularly ferocious I'll give it a good chew. This means I usually wake up with a mouth full of blood, a long with the disorientation it looks a lot like I've been in a fight!
Having JME means that I only have seizures within a couple of hours of waking up which so at least most of the time I'll be in the comfort of my own home and less likely to injure myself, that's not so say I haven't though. The injury lists covers a broken nose, a chipped tooth, a black eye and various carpet burns!
My Epilepsy was controlled to a certain extent by medication (Epilim in case you're interested) but it's fair to say that in my late teens and early twenties too much beer and too little sleep resulted in a few seizures but I was lucky, they weren't that frequent and didn't have a huge effect on my life.
Several years later I'm now in my
I've always been able to talk about and be upfront about my Epilepsy. I'm always happy to answer questions about my experiences as I believe that the cure to ignorance about Epilepsy is education.
It has to be said that I'm one of the lucky ones, I've never experienced (to my knowledge) any discrimination because of my Epilepsy, I'm able to to hold down a full-time job and I'm able to live on my own.
My Epilepsy is mine, it's part of me but it will never get in the way of me being me.
www.epilepsysociety.org.uk
Thanks for reading
Lard
x
