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.
Not many people understand epilepsy, they just think you have a seizure, get up and carry on with your day, but it impacts on your life so much more. I’m now facing the prospect of maybe not being able to have children, as one of my medications is known to cause birth defects. There’s also the great side effects from the drugs, including weight gain, memory loss, tiredness, no energy and skin conditions. I have to make sure I get enough sleep every night, and restrict my alcohol, as it’s not conducive with my medication.
I had to make the tough decision a few years ago for my career to take a bit of a backseat to my health, and I left a great job to focus on getting better. I’m back working now, but only about 3 to 4 days a week, and that’s manageable.
I guess what I’d like is for people to be more understanding of epileptics, for bosses and co-workers to understand when a colleague has to call in sick because of a seizure. Aside from family and friends, Epilepsy Action has been so great in helping me and thousands more epileptics deal with our medication, and live ‘normal’ lives.
Epilepsy isn’t one of the sexy conditions, there is a ribbon day (it was last month), but it’s not discussed a lot in the media, and is poorly understood by most people. The majority of Australians don’t realise how much epilepsy impacts on all areas of our lives, from family to employment and dealing with prejudice.
Epilepsy Action helps educate the public and employers about the condition and misconceptions, and like all organisations, always needs more funds for further research into the condition. It took me a long time to start telling people I have epilepsy, and even though it’s impacted on my life in a way I never imagined all those years ago, I really don’t think I’d change things – dealing with this has made me such a stronger person, who just happens to have a “funny head” some times.
Anne Power is a journalist who started who started her career in radio, before moving into television news. She’s married, loves cooking and has a dream to open a cupcake shop one day.