The Darker Side Of Epilepsy

“Everybody hurts, sometime, just hold on”. These words from the R.E.M. song Everybody hurts have resonated with me for many years. My Dad played the song often when I was young, it became the soundtrack to the most difficult days of my epilepsy and, it was one of the songs we played at my Dad’s funeral. I find it to be a very truthful song, there is no doubt that everybody will, at some point in their lives, feel a deep and painful hurt. We will all face difficult challenges. That is just part of life and the only option we really have is to hold on. Holding on, however, is not always an easy thing to do.  

I often talk about the more “difficult” or “darker” days of my epilepsy like those days are a thing of the past. That is not true. Most of the time when I refer to these days I am talking about the first couple of years, which were, without doubt dark and very often I felt there was no light at the end of the tunnel. Those difficult days came again when my amazing Dad passed away. It was so difficult. It is hard to fight the shadows when there is no light.  I am, however, incredibly blessed to no longer be in that dark place. I have a wonderful family, great friends, a job that I love, a charity I give my all to and I am back to a level of health I didn’t think would be possible. I am very much stood in the light.  

With all light comes shadows and my epilepsy still provides me with many of these to fight. There are still darker days. I have talked about the side of epilepsy people don’t see many times, that hidden side is the side that brings the darkness.  I don’t believe in “normal” I don’t think anyone can really define what normal is. I do think, however, we have a sense of normal for ourselves and I lost mine when I was diagnosed and I haven’t gotten used to my new normal yet. There are the days when every muscle in my body hurts because I have had a seizure in the night, when my muscles spasm, when my head feels like cotton wool and I can’t concentrate on conversations, days when my head is pounding and I feel sick, I long for the old “normal” days I had before. I would love to have the same problems I had back then. I would almost be thankful for a small headache or a stomach ache from eating too much cake. I would even appreciate not needing to take naps. I miss the old me greatly and while I am proud of myself for all I have achieved and thankful for all I have, I do sometimes dislike the new me and I struggle to understand why anyone else would like the new me either. I cancel plans, sleep a lot, forget important things and my medication has made me far chunkier than I have ever been. What exactly is there to like??!!!!  

Epilepsy brings far more demons than just seizures. They are almost the easy part. It is everything else that is difficult and that is the part that is hard for others to understand. I get so frustrated when people associate my epilepsy struggles with my emotional health. My emotional health is fine! I’m as happy as Larry most of the time and I can assure you if I never experienced another stressful day in my life it wouldn’t change my seizures. They are not controlled by my emotions they are controlled by the part of my brain that doesn’t work.  

I guess the purpose of this blog is to say living with epilepsy can be a lonely place. While I am a huge advocate for living the life you want despite epilepsy with my charity being based around that concept, its also OK to have a dark day because the reality of epilepsy sometimes sucks.  

Today is just one of those days.