about me

Seizing the moment with epilepsy!

SIDE NOTE: 6 days today until DISNEY WORLD! I can’t control my excitement, and packing has begun much to Stuarts disgust haha…

Anyway, on with this post!

If you’ve read my first post you’ll know that I’m a paraplegic and this happened due to a 4 hour long seizure, you’ll also know that I’m epileptic. Epilepsy is a neurological condition that causes an array of different seizures due to a change in the electrical activity in a persons brain, every epileptic is different, and not many people know but it can kill.

When I suffer my 4 hour seizures (I’ve had about 3 more after the 1 that paralysed me) my breathing is compromised, my heart rate goes through the roof, sometimes I loose control of my bodily functions (yes, I do sometimes pee myself, its gross but shit happens), and I’m always so tired I miss about 3 days afterwards. Oh and it can sometimes end up in irreversible damage; welcome to the world of epilepsy, its all fun and games!

In 2012 when I was diagnosed I was suffering from tonic-clonic seizures (what you think of when you think seizures), absence seizures (looks like I’m day dreaming), and petit-mal seizures (I twitch and jerk but I’m aware its happening) and the neurologist said “take these tablets, see you in 6 months”; no one told me what to expect, no one told me that the side effects from the tablets were worse than the actual seizures.

Since being diagnosed, I’ve been admitted into hospital 10+ times (once ending up in ICU and once ending up in HDU) and I’ve ended up in A+E more times than I can remember, which is 1 thing I wasn’t told would happen that much; in fact I was told that my meds would help prevent me from being admitted because they would stop the seizures. They didn’t. I was put on 3/4 different types of meds and all of them I was on the highest dose (Keppra on the highest dose turned me into a spawn of Satan, I was a horrible, angry, aggressive person…. not fun!)  and I only saw a very slight difference in my seizures. I’ve now been taken off all meds “so my body can have a break and I can adjust to paralysis”, and although I have a crap tone of seizures a day, I’m seizing the moment! (I’m pretty sure thats the worst pun ever..)

I’m seizing the fact that I know longer have acne caused by Lamotrigine!

I’m seizing the fact that I’m no longer a spawn of Satan and don’t want to kill everyone!

I’m seizing the fact that I’m more awake than I ever was on my tablets, I mean don’t think you’ll have my concentration and consciousness for more than 2 hours because my brain cope with that anymore after being in a coma, BUT if I don’t have to concentrate too hard, I’m all good!

I’m seizing the fact that I no longer have to remember to take my tablets because I was terrible at that.

I’m seizing the fact that I can drink again!! (alcohol, not just normal fluids! can you imagine not being able to drink normally?! pepsi max cherry is my life, I’d freak out!)

People say they won’t let epilepsy  define them but I want to let it define me, I want to embrace the fact I have epilepsy and if its the first thing people think of when they think of me then I’m fine with that; at least they know whats happened when I collapse and don’t panic!

See you real soon,

Jenny xx

 

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