My name’s Ray. I’ve been on quite a journey since I was diagnosed with epilepsy about 15 years ago. In fact, epilepsy has taken me on two epic journeys – and I certainly never thought I’d end up where I find myself today.
"You've got epilepsy"
I’ll never forget the feeling when a seizure was about to hit me – that heaving lurch, like being in a lift when it suddenly starts to plummet.
I felt confused by the conversations with my doctor. He just said, “You’ve been having seizures. You’ve got epilepsy.” That was literally it. I was thinking, “Seizures? What, like a heart attack??” And once I had that diagnosis, ultimately I felt alone.
I literally didn’t know where I could turn for help. So I did what so many others do in those circumstances – I looked it up on the internet. And that’s when I found the Epilepsy Action website.
I learned about the different treatments and medication available and found some that worked for me. The original tablets I was given may have helped control my epilepsy, but I felt they also took away the energy and the feelings that make me who I am.
The more I learned from the website, the more confident I became in dealing with my symptoms. I also got more confident in talking to other people about epilepsy – I was able to educate those around me so they understood how it affected my life and what to do if I had a seizure.
I’m lucky enough to be at a point now when I can tell if a seizure’s coming - and I know what to do to avoid it. In fact, believe it or not, one of the first signs I get is a really strong smell of oranges! My mood changes, my mind starts to race – that’s when I know I need to get more sleep, eat right and avoid stress.
Incredibly, these simple steps have kept me seizure free for five years now.
The info I got from the website was invaluable. It provided the guidance that enabled me to take control of my seizures – and of my life.
Giving something back
Epilepsy Action believes that this information should be available for free, to everyone. And so do I.
Which brings me to where I am today. I wanted to give something back to Epilepsy Action so they can go on providing this vital information. After all, it helped me so much when I was diagnosed. So I’ve just cycled 1,000 miles from Land’s End to John O’Groats to raise funds for Epilepsy Action - an amazing cause.