Tuesday, 5 May 2015

Epilepsy....The good, the bad and the very ugly

Epilepsy…… That’s a word I hate. I have had seizures now for about 13 years and they have changed my life. Gosh when you say that out loud you realise how much it really has changed your life.
I was at university and had a fall on a wet dancefloor banging the back of my head and falling on my spine. That was the start of it the have I wet myself questions, has anyone seen me etc everything someone with seizures go through.
Initially they didn’t know what was wrong, I had one episode as the quacks like to call them and then nothing for months, all I was able to tell them was how I felt afterwards and the circumstances I woke in. they scheduled me for an eeg which basically they set you in this wee dark room and have your brain monitored to see for activity. I had this done in Oxford and I remember my bestie Nikki coming with me cause the John Radcliffe is a really old building and I remember the smell and everything. The test came back inconclusive. I had no more episodes for months then in the March I had one and they decided to put me on medication. I remember thinking well if there is nothing wrong why throw medication down my throat, I was very angry at the time but I know now why they done it. So nothing over the summer then in September I met my amazing hubby as he joined our uni and stayed in the halls I was now looking after. We started dating on Halloween night basically and within 2 weeks he was in the hospital with me for a brain MRI. Again they couldn’t tell but they told me that 95% of epileptics have a normal MRI
I started to feel was there anything actually wrong, was it all in my head, was there something mentally wrong. I fell into a deep depression and went to a very low place in my life. The day I had my first seizure in front of Scott is something I can’t massively remember but he was amazing, he took it all in his stride, got me washed, the bed changed and just went back to sleep.  We decided to move back to Ireland as things were just getting too bad, the injury from my fall on my back was getting worse and I was diagnosed with fibromyalgia.
I had video telemetry for 5 days in the royal Victoria Belfast and nothing not one iota of a seizure, the consultant thinks I was willing it to come on so much that adrenaline basically kept it away. I had one in the carpark of the hospital!! How ironic is that and just typically me!
So years on and countless seizures, I am sitting here writing this with a nice big and sore carpet burn on my face another little seizure injury, you can see that gorgeousness below! Goodness there have been a few, broken wrist a couple of times, carpet burns on face, bruised ribs.
Epilepsy has taken so much of my life but it has given me a sense of thankfulness, especially for my mum dad and scott. They treat me like I am normal and when mum was alive we used to be able to joke about it. Dad has seen me in states that he should never have to see me in, but yet its just another day to him. Scott has dealt with me fitting in the biscuit aisle in sainsburys and in the car not long after he passed his test.
If you have epilepsy and are reading this I want to tell you you are normal we just are a little differently wired but that makes us unique. Never feel you are any less than a “normal” person, as a friend of mine once said we are in the epilepsy possee and its an exclusive members only club.
If you have just came across this post or you are a friend of mine, just know that I cant control this and the best way to deal with it is not to be scared incase it happens with you,and if I do pee myself never worry a washing machine and shower will soon sort that out.
I think what I am trying to get through with this post is that yes epilepsy is crap and yes it has changed my life but I have learbed to deal with it and if I fit outside I couldn’t care less now, let people look and stare its their ignorance not mine.
Epilepsy yes I do hate you but you wont beat me, unless I fit in front of the Ulster Rugby Team or someone really famous then we will fall out!!
Love to all you preeners, you all make me strong
xxxx
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4 comments

  1. I've been dealing with epilepsy since october, and reading stories like this gives me hope and strength to carry on. Thanks for sharing! x

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    Replies
    1. Chantal
      Thanks loads for the comment!
      You are strong and you will fight this come say hey on Facebook,Twitter and instagram and I am always here if you need to rant
      Keep smiling
      Ali xxx

      Delete
  2. That must have been very scary to experience, knowing something was wrong but not what. Sorry to hear you have epilepsy, it must be such a life changing diagnosis

    Fibrogeek.co.uk

    ReplyDelete
    Replies
    1. It definitely was scary, it still is if I am honest x

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