I was seven when I had my first nocturnal seizure. As the months passed, I had several more nocturnal seizures. Each seizure gave me different feelings.
I woke up after some of them, not being able to speak in others, and on one occasion not able to move my arm. I was really worried and scared. I didn’t know what was going on. After two EEGs and an MRI scan, I was diagnosed with focal epilepsy with nocturnal seizures and sharp waves in slow wave sleep. I felt so different and alone, only my family seemed to understand. I often went to school feeling exhausted and found it difficult to concentrate. I wished people understood so I didn’t have to explain how I felt over and over again. I felt that because a lot of people didn’t see my seizures and couldn’t see my symptoms they didn’t believe me. I was scared to sleep in case I had another seizure. Instead of bedtime being a time to relax, it became a time I hated.
In May 2017, my family and I went to the Purple Walk in Farnham. We were made so welcome and it was great to meet other young people who had epilepsy. It was that ‘moment’ that helped me to feel less alone and gave me courage.
Nearly a year on and I feel a lot less worried about my epilepsy although I do still have head shocks and other symptoms related to my epilepsy on a daily basis. My Mum, Dad and I have set up the Young Epilepsy North West group and have a Facebook page. As part of this, we are walking the Wirral Coastal Walk on 24th June 2018. I hope lots of young people with epilepsy and their family and friends will walk with us as ‘Team Purple.’ I really benefit from meeting and talking to others with epilepsy and I want to make sure that valuable ‘moment’ that I experienced can happen for other young people with epilepsy too!
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