I have epilepsy.
I don’t know anyone else with it, no-one in my family has it. My doctor thinks I got it after one too many blows to the head when I was a kid, just falling over on concrete and other normal kid accidents, although I was hit with a discus in high school, so that may have been the real cause of my head injury.
I was diagnosed when I was 20 – I was working in my first job in radio as a journalist, and woke up one day looking like I’d been beaten, with bruises all over my face. After assuring the doctor in emergency that I hadn’t been beaten by anyone, I was sent to a neurologist who eventually diagnosed epilepsy. I was prescribed medication and went happily on my way – it was manageable back then, and didn’t really impact on my life. Except I put on a lot of weight from the drugs.
A move interstate and switching neurologists saw me put onto a newer medication, which worked for a while and I lost the weight. But then the drugs stopped controlling my seizures, and I was put onto another medication, and another one again. Epilepsy is very difficult to control, and everyone has different types of seizures. I’m currently taking 2 different types of drugs twice a day, but still have seizures, or a “funny head” as I call it, at least twice a month.
I often have the type of seizure most people associate with epilepsy, when I fall to the floor and jerk around, What people don’t realise is that it’s not just moving around on the floor, it’s using every muscle in your body, and it’s physically and emotionally exhausting. After one of these seizures I cry, am very emotional and sleep for 12 hours.
Another type of seizure I have is what I call a vague-out, where if you asked me to spell the word cat, I couldn’t. I can’t talk properly during this time, can’t write, my hearing is affected and I just need to go and sleep it off.
I’m 31 now, and have been living with epilepsy for more than a decade. I’m probably never going to outlive it, I will always be an epileptic. I couldn’t get through the day without my medication and my husband Ross, the same man who holds me when I have a seizure and makes sure I don’t bite my tongue. My family and girlfriends are also amazing, like my best friend Candy, who made sure I had orange juice and jelly beans just before I walked down the aisle, as low blood sugar levels affect my head.