I was diagnosed 5 years ago. I firstly had a serious, unexplained car crash. After the crash, I suffered with PTSD. I couldn’t work out what had caused it. Then there was a frightening incident at home a few months later. I was at home in the middle of the night, when I fell through the banister.
Immediately, I felt safest either in bed or on the sofa. I’d had two near death experiences and did not want to risk another. I scaled down my work. As I waited for diagnosis, I imagined all sorts of alternatives; brain tumour, MS (which my mother had), Parkinson’s…to the point where I was relieved that it was only epilepsy.
But my elation at the diagnosis was short-lived and depression kicked in. For 3 years, I was short-tempered and I struggled to accept my new normal. The last 2 years have been better but whilst my seizures are more under control now, an incident will set me back. An invisible force can stop me stepping outside the front door unless I am with someone I trust. When Covid took hold and we had to isolate, I said I had been training for this for the last 3 years.
I have mainly absences and focal impaired awareness, as well as atonic and non-epileptic seizures. I have daily fatigue, poor concentration and memory loss. I resist planning things in advance because I don’t want to let people down. Before the car crash in November 2016, I worked full time in IT. I haven’t got back to full-time work but did try to do some volunteering. I have grieved for my old life and still struggle at times to accept my new normal.
But I am lucky to have some fantastic friends and family around me. My wife Julia has battled her own mental health issues. In 2019, I was struggling to come to terms with my condition and how it had changed my life. She was also struggling: to help me, to understand what was epilepsy or depression. We recently celebrated 27 years together.
My closest friend of 30 years, James, has always supported me. We are planning to complete Wainwright’s Coast to Coast walk next year. My father, Keith, is 79 and was diagnosed with epilepsy after me, aged 76. When we lost my mother in 2017, he moved to half a mile away from us. He is a great walker and when my agoraphobia is at its worst, he will come for me and we walk together.
I started seeing a therapist, Michael, in August 2019, when I was at my lowest. He has made a big impact on my life. Two of the biggest changes he encouraged was journaling and allowing myself to have afternoon naps. He was the first person to make me aware that the two biggest emotions that I was experiencing were shame and guilt.
The online epilepsy community is a great support too. Happy Purple Day to everyone.