Today is my 4 month anniversary. 4 months since my last seizure. That doesn’t seem to be a long time, especially as I had gone 18 months, but I know that my epilepsy is actually considerably more controlled than it has ever been. In fact about a month after my last seizure I was actually discharged by my consultant. Again, bizarre, but it is because the registrar was convinced that those seizures were caused by the exhaustion from the virus I had.
So… 4 months… nearly 2 years since the previous one (which was self-induced) therefore… nearly 3 years since my last unexplained seizure! Groundbreaking. I never thought that I would manage that.
Over the last couple of years I’ve done a lot of thinking about my brain, and the effect the epilepsy has had on me. It inevitably has had an impact, after all I was diagnosed when I was 11. I have written about it before but… The thinking has led to various conclusions…
- I am not an epileptic but I do have epilepsy
- It is not my identity but it is part of who I am
- It is nothing to be ashamed of – in fact I focus on the perks
- It has made me aware of the importance of looking after myself
- There will always be limitations on my life
I’d thought so much about it that I was recently interviewed for an article in the diocesan magazine about faith and disability. You can listen to some of the interview Here.
So I thought I was all sorted, I understood my brain and how this condition affected me, my life and those around me. I had come to terms with it all, with the added bonus that I wasn’t having unexplained grand-mal seizures anymore. I had accepted that I would never drive, due to petit mal seizures and E telling me she’d never get in a car with me driving! It’s always nice to have the support of your best friend isn’t it?
So… why am I writing this? I am surprised that I’m not seriously dehydrated this week due to the amount of tears that have flowed down my cheeks. I think this has a lot to do with complete exhaustion after a somewhat turbulent and stress filled year. But this week I keep going back to last weekend.
Last weekend I was told I wasn’t allowed to do something because of my epilepsy.
Although I haven’t been actively thinking about this constantly, it has been there in the subconscious. As I said above I know that there will always be limitations on my life… not going to clubs, not driving, not watching fireworks, not watching certain parts of films, not going to gigs, taking medication regularly etc etc etc but these limitations, on the whole, are my decision guided by my condition. But to be TOLD that I wasn’t allowed to do something because I had epilepsy blew my mind – excuse the statement! I wouldn’t have minded if it made sense, but it didn’t. There was no discussion, it was a blanket – no, you are not allowed because you have epilepsy.
(I’m not going to get into the details as I’m still in contact with the organisation and am not at the stage yet to take it to social media!)
At a point where I felt that I was taking control of my life, making decisions about lifestyle, work, career, relationships etc to then lose control because of something I wasn’t going to allow to define me… it really has upset me, and challenged whether I am actually ever going to be in control.
I feel like I’m rambling now so let’s try to be succinct.
I knew that epilepsy was part of who I was, and was a part of my life, however I was the one making the decisions about the limitations it had. Saturday was a brutal reminder that as much as I think I’m in control there will always be the possibility of the epilepsy taking over.
I’ve just got make sure I don’t let it take over, and become my identity again. Yet another challenge.