My epilepsy is something I’ve always tried to avoid talking about but recently I am embracing being more open about it. I had my first seizure at 14 when repairing my bike, it was a harrowing experience at that age not being able to remember much and regaining consciousness in an ambulance whilst the paramedic was conducting their blood tests. I had several more seizures in my teenage years and many tears, coming off quite bad on a few occasions. After further visits to the hospital for EEG tests and MRI scans I was diagnosed with epilepsy.
Initially I tried to convince myself I didn’t actually have epilepsy as it is a condition which is not always visible and my seizures were only occurring once every few months. I reached a point when my seizures were quite well controlled by my medication, however when I moved away to University my frequency of seizures increased. This was particularly difficult for me, especially from coming from a close-knit family, who I was now over 100 miles away from. I then changed medication, which was the hardest part of my journey as it did control my seizures better but came with adverse side effects such as depression and mood swings. I was now in the final year of my degree, determined not to let my epilepsy win. During this difficult period, I cannot thank my close family and friends enough for their continued support, guidance and reassurance during these low periods.
I then changed medication again as I was finding it difficult to cope with the aggressive rage outbursts and low moods I was experiencing. I am grateful that my condition is now well controlled by medication and I don’t let it stop me from doing the things I love. What has helped me the most is finding a balance, listening to my body and knowing my limits. There have been a few occasions where I neglected this approach, once was for my 21st birthday where I was due to fly to Las Vegas so had to be up at 3am and the early start and excitement triggered a seizure, but fortunately I made it to check-in on time. Other previous times have been self-inflicted but as I’ve learnt more about my condition and having friends onboard who know what is good/bad for you has helped me a lot.
Although it has been a long battle I am proud in myself for achieving my undergraduate and postgraduate degree and am now taking driving lessons as have gone a whole year seizure free (my longest ever duration). I know it can be particularly difficult, especially for blokes but talking about how I’ve felt and openly speaking about my condition has got me to where I am today. Having epilepsy is about living in the present moment and learning to embrace and enjoy all the goodness that life has to offer.