Thursday, 25 June 2009

Epilepsy and knitting

I use the website which is a knitting community website where you can find free patterns, discuss your projects with other knitters, join groups and much more. A couple of days ago I noticed that there was a new group called "Knitters with Epilepsy and Seizure disorders". This was of interest to me, as I have epilepsy. As it is well under control I now live my life normally and rarely think about it. But I was shocked to read other people's experiences where they have had bad reactions from family, friends and strangers, from being told they were possessed to being thought of as mentally defective! It is shocking that in our enlightened and tolerant society there are still so many misconceptions.

For me, it all started just over 10 years ago when I had a stressful job and did lots of commuting. I was having a normal week, too busy, not much time to eat, not enough sleep and I was driving home on a fast dual-carriageway, going the maximum speed on the outside lane, overtaking a lorry. Suddenly I found myself in a ditch with people around me. I was very confused. The police arrived and then an ambulance. The first ambulance man who spoke to me asked me for his lottery numbers for the week. I didn't understand why. He said that it was my lucky week as I should have been dead. I was just so thankful that no one else was involved in the accident.

I was taken to Oxford's Radcliffe hospital for tests but no one really know what was wrong with me. I had been alone in the car and and so no one had witnessed what had happened to me. However, a few days later, at home with my husband, I had a seizure which he witnessed. It wasn't long before I saw a neurologist and was diagnosed with epilepsy.

I was told that I had had epilepsy all my life. However, up until that point my seizures only consisted of a feeling of "deja vu". I didn't lose consciousness or even have absences. Since I heard people talking about "deja vu" I thought that it was normal.

I was devastated. On a practical level I had lost all confidence to go out alone, I could no longer drive (one must be seizure-free for at least a year before getting one's licence back), was told not to contemplate having children whilst the search was on for the "right" medication.

After a difficult period of trying different medications with horrible side-effects, we finally found one that suited me and I have been seizure-free ever since. Even though I take medication everyday, it doesn't really affect my life. Now I can drive, work, I have two healthy children, I just get on with my life. But there is something in me which avoids telling people unless I have to, some fear that people will judge me, there is still a stigma attached to it. When I was first diagnosed, I remember telling someone that I had epilepsy and they said, "But you don't look like you have epilepsy", like I should have two heads!

So maybe being more open about this condition can help people understand. I will write more ...

1 comment:

  1. Hi Helen. I hadn't realised there was still a bit of a stigma with epilepsy. My brother has it quite bad from a major accident he had about 15 years ago so we've got used to it. It's well controlled though and he's had his license for years - can drive better than his wife! lol.

    I remember many years ago my best friend at school getting diagnosed and she wouldn't tell us for ages why she was often away from school. When she told us it had to remain all hush hush - it was very sad. She was so incredibly clever and eventually became a scientist.

    I thought things had changed - it's not so uncommon but I think now there are better drugs so most people aren't aware that others may have the condition.

    Anyway, keep well. Loving the blogs, you're so good with words.