Epilepsy is one of the most common neurological conditions, caused by seizures in the brain. It can affect anyone of any age and its impact on lifestyle completely varies. I had my first seizure in 1996 when the car hit me and have suffered various kinds ever since. There are over 40 different types of seizures. For me, complex partial seizures have been the most frequent, but for the past few years I’ve been having more tonic-clonic ones.
But if epilepsy is so common, why does it remain so misunderstood? There are too many myths going on, along with fear of asking.
I think the public need to be educated on what to do if they witness a seizure. Calling an ambulance is easy-peasy, but not always necessary. Too often I wake up in an ambulance and on occasions taken to hospital. I regularly fall and remain unconscious for 5-10 minutes, but after a 20-minute rest I’m back on my feet. Although I am very grateful for people’s concern and help, I often just need someone to give me water and tell me what’s happened once I’m awake. Only on one occasion have I ever needed CPR, in 2018 when I was in an induced coma for 2 days.
Epilepsy is different for everyone, and Epilepsy Action gives plenty of information about what to do if you see a seizure:
Also, check the person’s wrist in case they’re wearing a wristband with handy information on what to do. I gave up on mine because no one looked at it! Again, more awareness is needed.
I would like to give a special mention to Waitrose, Bath. Of all the companies who have witnessed me having seizures, they have shown me the most support and compassion. They will always be there to hand me a glass of water and they even phone later to check on me. I thank them by staying a loyal customer.
I have had various treatments, including dozens of medications, vagus nerve stimuli and big brain surgery. Although the surgery nearly killed me, I have no regrets. The number of seizures I have has definitely reduced and I learnt I have guts! I’m currently trying a new medication which doesn’t have the terrible side effects of former ones. I’m happy to try any new treatment until the day I’m cured of my worst enemy.
One key feature of epilepsy that I find hardest is its unpredictability. It can be very frustrating and is sadly the main reason why opportunities in life are quite restricted for me. The day will start fine and I’m enjoying life, hobbies, friends etc, but the next minute I’m in an ambulance and the day is over.
Epilepsy has certainly affected my career prospects because it means I have no driving license. Every job I see for outdoor work or with wildlife will say ‘driving license essential’. Even being a swimming teaching assistant requires a license! It seems nonsense to me and feels very unfair, but there is nothing I can do until the driverless car comes out. Please do not take your license for granted!
These days, I am very open in sharing my story, although I did struggle when I was younger. Telling others about my condition often brings concern into the conversation, and at times I have felt overprotected. Now as an adult, I’m able to describe my situation very well, add reassurance and defend my decisions, whether I’m exercising, swimming in the wild or perhaps doing something more dangerous. Some organisations are over cautious, and I have had to use my own judgement and fib on occasions! I still manage to do the adrenaline sports I love. Sky diving in Namibia was an unforgettable experience, and nothing can stop me hiking mountains. I will not let the electricity in my brain keep me from summiting and feeling that sense of purpose. I have been asked to reconsider certain trips, but I trust myself to assess the risks of any activity. Life is full of risks and it’s important to balance them out. I may have this condition, but I am a fighter and I will keep on achieving my goals and dreams.