Like many individuals I haven’t spoken much about my epilepsy, until
now. I’ve never been sure how people would react or perceive me as a person, acquiring support from Epilepsy Connections has added structure to a life that was once filled with blackness, the organisation has changed my life.
I have decided I would share my own story with other people. Hopefully, it will give others strength and confidence to share their own stories and experiences.
I was four years old when I was diagnosed with the condition, my Grampa immediately recognised, my behaviour was abnormal, losing awareness of all things and everyone around me, gazing into space with a look of blankness and confusing on my wee angelic face.
Growing up with epilepsy in my childhood was hard but I felt I had to get on with it and i didn’t let it get in the way of anything. When I first started primary school my consultant put me on Zarontin, It was a distasteful liquid syrup medicine which has still left a bad taste in my mouth, I will always remember the horrendous taste of it, I now believe pharmaceutical companies have discontinued the product.
I considered myself as being a very lucky boy I didn’t have any tonic-clonic seizures until I was twenty one but I remember the side effects of the medication were a different story.
I didn’t seem to know what I was doing the majority of the time. I could be walking in and out of rooms and not remember anything. Most times, my eyes would start to flicker and I would have absence seizures.
Like many individuals with epilepsy, I have a number of different types of seizures. I can experience generalised seizures such as absences and tonic clonic seizures, also simple and complex partial seizures. Sometimes I will experience a warning (simple partial seizure) and occasionally I will feel strong enough that I can fight it and not have the tonic clonic seizure. This is the best way I can explain it.
After I come around from a seizure, I still find myself saying sorry to those around me even though I know I don’t need to or shouldn’t have to.
It is thanks to all my recent support that have finally been able to speak out. I am 36 years old now and if I could give individuals reading this any advice I would say that you need to try and not let your epilepsy get to you, live your life the best you can, as life is short. Take each day as it comes.