EPILEPSY
EPILEPSY AWARENESS Luke in HMP Foston Hall explains what it is like to live with epilepsy and gives some guidance on how you can help support
I have been living with epilepsy for nearly 10 years now. It’s a disorder that really affects many aspects of my life. Although I‘m able to live day to day, I have a constant fear that I may have a seizure. My seizures are mainly brought on by high stress levels, becoming too hot or being exposed to flashing lights and lack of natural sunlight. I suffer from two types of seizures – absences and convulsions. When I’m in an absence, I go blank and stare into space. I don’t respond to others and I’m unaware of what is going on around me. Quite often, I will come round with lots of people surrounding me, and this causes me a lot of distress. One moment, there is no one near me; the next, people are rushing and watching me. I must admit it’s not a pleasant experience. My convulsions are somewhat harder to 20
H E A LT H M AT T E R S !
describe, as I have no knowledge of what happens to me apart from descriptions from witnesses. As far as I can explain, this is how I look and act: my body goes completely rigid and my eyes roll back. My body shakes and spasms and I foam at the mouth. At times, I also lose control over my bladder and often bite my tongue. To hear what happens to me doesn’t really upset me; I’m actually curious. It may sound strange to read this, but I’d rather know what happens so I can teach other people what to look out for and what to do in the event I have one. So what are the myths and facts? Firstly, there are many forms of epilepsy. A lot of people may suffer with it but never show any outward signs like convulsions or blackouts. One lady I met used to feel like her stomach was doing gymnastics before she would have a seizure. Most sufferers get an aura – a taste, smell or feeling. This can be enough to be classed as having a seizure at times, depending on the severity. For me, I taste copper – like pennies, and my heart rate gets really fast. At this point, I know to get help and move into a safe space. But sometimes a seizure will take me by surprise.
