If you would like to talk to someone about epilepsy, our trained advisers are here to help.
At the age of just seven years old I was diagnosed with chronic epilepsy.
Throughout the years it progressed and got worse. My right side weakened as I got older, they found a piece of my grey matter floating behind my left eye the size of a 20 cent coin.
I began to have absent seizures- I will zone out and may have a blank look on my face, Atonic seizure “drop”- I will fall to the ground and look like I’m sleeping, Grand mal – shaking of the body and all loss of breathing, Wandering seizur e- I will walk away or continue daily tasks without the knowledge of what I’m doing – I tend to to wander toward the road or my neighbor’s house – they will guide me home or ring my parents, Sensory seizure – sometimes taste things or smell things that aren’t there, and the same with touch, I get really tingly and anxious in the belly.
I have so many different auras, my lips and mouth will feel funky, the change from dark to light, fatigue, stress,just feeling unwell generally, loud noises, heat and cool weather, so yeah, pretty much everything.
Yes I have them all the time and even the little ones damage my brain. I get so tired, over stressed about the smallest things. I have safe spots around town just incase I feel down.
I appreciate those beautiful people so much, I do wear a fall SOS alarm so my parents know that I’ve gone down and I’m not okay. I have midazolam if my seizures last more than 5 minutes and I’m not breathing.
I’ve had multiple broken arms from falling down having seizures. I have had aspirated lungs from not being put on my side properly. I had a wandering seizure and fell smashed my face on concrete and had a broken ribs, they thought I fractured my eye socket, that’s how bad my face was.
I also ended up with hypothermia from being on the cold concrete. It was a night time, my parents found me out back in the morning. I was hospitalized and to try and stop me from seizing they put me in a coma just to give my brain a rest.
I lost some of my hair from laying too long, I got a hospitalized chest infection because I got that also from laying too long. I couldn’t talk, I remember all these scary tubes and noises.
I had a dream while in a coma of some very special people, I love them so very much. I came out of the a coma saying sorry to mum.
I love all the support I have, when the going gets tough, I know who I can really count on. One thing about having an illness is you find out people’s true colors and what they really think. Most of these people don’t care I was in the middle of the road and cars drove past me while I was laying there flat on my stomach.
Sometimes I want to give up but I think of the crazy big wonderful family I have, I love love them all so much and one day after I take time for myself to mend I’m going to make my own family with the support of my biggest fans.
I get scared of the thought of having my own kids, I’m not going to lie, it does stress me out, but I’m going to do it if it’s possible. All I want in life is to be happy and have my very own baby.
Right now I’m working on me and the important people in my life! To all out there with epilepsy, I feel you ,sending my love and strength xx