We have a weird, on and off relationship, epilepsy and I.
Initially diagnosed at 20 (one month exactly until my 21st, standard!) with stress induced nocturnal epilepsy after having a gran mal in my sleep. For a year and a half I was on a plethora of different medications and whilst I didn’t have any further seizures I was a walking, talking zombie for that year and a half. I decided to come off all of my medication and for a while everything was great!
Fast forward 7 years, having just broken off my engagement of 5 years, moving back home with my mum, step dad and sister I started suffering from blank periods, where I had no idea what I was doing, where I was – but they were very few and far between and I’ll be honest I didn’t even notice I was having them for the majority of the time. Until about 9 months ago, in August 2018 my family started to notice them and insisted that I go to the Dr’s. Sitting with the GP whilst they told me I won’t be driving until the Neurologist signed me off was fairly upsetting, but I thought I’ve done it once, I can do it again – whats a year and a half without a license?
4 months later, with the neurologist, being told that I have temporal lobe epilepsy, one of the hardest to medicate and I won’t be driving again whilst still having seizures. Which I am still having to this day, and it is sounding very much like I won’t be back behind the wheel any time soon, if ever.
Epilepsy is waiting for a bus that’s 10 minutes late, after 9 hours at work, in the rain with frizzy hair and no coat. Trying not to cry, knowing I can drive. (I passed my test first time, when I was 18) Stressed and upset, feeling fat and rank because the tablets have caused weight gain. Knowing I’m going to be having seizures later, feeling the general ‘aura’ metal taste, sickness, feeling like my brain is full of bubble wrap. Hoping I can get home before they start. Knowing I’m going to be alone at home until 9pm tonight, so no cooking, no shower, no much needed bath just in case I have a turn.
Its always making sure I have access to either a cash point to get money out for a taxi, or always having cash on me in case my hips are too bad to walk home or to the nearest bus stop.
Even though I “only” have focal onset impaired awareness seizures and not grand mals and they have got a lot better in the last year. I no longer lose my words, forget what simple things are called (like the footpath) or have to reread pages of a book repeatedly because I cant understand the words on the page. Its tough knowing that at any moment I can lose 5-10 seconds, repeatedly, of my day.
If you see me wondering around, looking lost, maybe trying to open a microwave meal in Sainsburys to put it in the microwave, just ignore me, it’ll only last a few seconds!