I recently had my first seizure in a long time. It’s odd really, I had spent months before I applied for the marathon carefully weighing up whether the pressures of training could bring on a seizure. In actual fact I found training helped me to sleep better and improved my anxiety as well as other medication side effects.
So it really couldn’t have come as a bigger surprise to me that it was in fact the slowing down of my pace of life that brought about a seizure. Before the lockdown I had a pretty busy but normal life. A few weeks into lockdown I started to notice I couldn’t sleep properly, I would find myself wide awake for hours in the middle of the night.
For anyone who’s had insomnia they will tell you it is horrendous, but for me it’s also a huge red flag for seizures. The last time I struggled to sleep like this was when my nocturnal seizures were at their worst. After a sleep seizure I would be terrified to fall back to sleep at the prospect of waking to another one. But the less sleep I got the more the likely they became and so starts a vicious cycle. Suddenly though I’ve found myself in routines I had long forgotten. Watching a film at 2/3am in an attempt to trick my brain into falling asleep. A habit that whilst somewhat normalised for me was quite an adjustment for my poor boyfriend.
The seizure itself was over in a couple of minutes, the exhaustion, headache and bruises gone in less than a week and to the outside world there is no sign that anything is wrong. For the most part epilepsy is an invisible condition. However, in reality the effects of that seizure will last for years.
Unfortunately I am now unable to drive for 12 months, I need to have more scans and hospital appointments and my confidence and mental health have taken a serious knock. And that’s just the impact on me, for my family any seizure is a huge concern and they now have their own worries and anxieties about how best to keep me safe and well.
Whilst my medication does a great job in helping to control my seizures it still requires very careful lifestyle management alongside it. I’ve lived with epilepsy for 25 years so it’s not new to me. At the beginning of lockdown I was confident in my ability to manage my condition but I hadn’t accounted for the effects on my body physically and mentally of such a drastic change to my lifestyle. I am good at remembering to take my medication, I rarely drink alcohol or caffeine and I plan carefully to ensure I get enough sleep but I also do not want my epilepsy to consume who I am. I try hard to find the balance.
Research gives me real hope that one day there will be treatments available that don’t require such strict lifestyle management, don’t have such unpleasant side effects and even ultimately prevent not just seizures but epilepsy altogether.
Although this seizure was a set back I won’t let it stop me living my life. I am so grateful to be able to see every day the huge numbers of people who really are making a better future for people like me. Our brilliant researchers and clinicians, our office team and our incredible supporters ... thank you!
If you would like to support my marathon journey and more importantly the life changing work of Epilepsy Research UK please see the link below to donate.
Every donation makes a difference!