Today is purple day a day to recognize epilepsy as a serious condition and raise awareness of it. I am very passionate about raising awareness for epilepsy because it affects my life substantially but the reason i dont speak about it on my bog like i speak about having social anxiety and being a wheelchair user is because i don’t really know anything about it! The reason for this is im always in an unconscious state when i have a fit so i dont know what it feels like to have one i personally have no warning of it and cant do anything about it so because of my anxiety and needing to be in control i feel if i read up about it i would be even more frustrated i have no control, in this case ignorance really is bliss.
I cant give information on where to get help, meds to take like i do with my other conditions cause with epilepsy i just do what my consultant says. I cant even tell you what it feels like to have epilepsy. I can only tell you the ways it affects my life.
The lack of control affects my life massively every-time i cross a road on my own or do anything of that nature i’m constantly thinking what if i have a fit? This actually happened to me in the summer of 2016 i was driving my electric wheelchair on the path and i had a fit and even though i was unconscious because my hand was still on the stick i carried on driving straight onto the road. Because i was unconsciousness my body had no way of saving itself and i ended up dislocating my shoulder breaking my arm and a bone in my foot. Luckily this was not a busy road and i had someone very kindly stop and divert the cars that did come away from me. But every day i think well what if next time im not so lucky?
I said id be honest so ill admit that an aspect of no control is also no control of my bladder. Now this is one of the problems with my epilepsy that i find bearable still embarrassing and annoying if i’m out and have no spare clothes but its ok. In my teen years this was a lot more distressing a lost count of how many times i was crying in the toilets because id just wet myself in the canteen or in class. Not only was it out of fear of being teased but its also psychologically hard when your having the conflict of being in-between a child and an adult and you wet yourself making you feel like a toddler.
It also effects my life socially I cant go and watch 3d films or sit at the very front in the cinema which again not to much of a big deal but i do miss out on social gatherings with friends. The flash of a camera, getting to hot both things that tend to happen on a good night both trigger a fit for me.
Lastly because of my epilepsy i cant drive now im only 20 so this hasent affected me so much yet but i know it will because most work places require you to have a drivers license. I wont be able to drive my kids to school or rush them to the hospital if needed.
Im a very positive person and my anxiety and disability that makes me a wheelchair user suck but i can see qualities in myself that i like because of them so there is a positive outcome from it. But epilepsy nothing i get no feeling from it no learnt experience it only restricts who i am as a person not develops it and for this reason if i had one wish in life i’d be more than happy to stay in my wheelchair i just want to get rid of my epilepsy.
I’d like to dedicate this post to lovely girl Amy who i when to school with and sadly passed away during an epileptic fit.