Five years ago my life changed overnight. I woke up with a headache and over the course of the day I started to twitch. Over the next six months this escalated from very small twitches to full body jerks, sometimes seconds apart and lasting for days at a time. After many doctor and hospital visits, and a few neurologists down the track I was finally diagnosed with Juvenile Myoclonic Epilepsy, and partial seizures. I was 26. This was a surprise, to say the least. I was put on medication and expected that would be it – take your meds daily and everything goes back to normal. I learnt quickly that epilepsy rarely works that way!
My life has completely changed since that day five years ago. For a while I was really angry and depressed. I hated the seizures, I hated the medication side effects and I hated what I had lost as a result of getting sick, including most of my friends, my house, my job and my independence. Then one day I realised I couldn’t think of myself as sick. This is how I am going to live the rest of my life so I need to find a way to live around my condition.
I now manage my epilepsy through a combination of four medications and also lifestyle management to reduce side effects, and have started my own business so I can still work part-time while controlling my hours and work conditions and if I have a seizure I have a seizure. Since accepting is part of my life and being willing to talk about it openly I find that people now treat me the same as they did before I was diagnosed.
The last five years have been the hardest of my life. But I have come out the other end a better, stronger person and am proud that I took the hard road and took control of my life again.
Julia Baker