Wednesday 21 May 2014

It's National Epilepsy Week

This year Epilepsy Action are asking what it’s really like to be diagnosed with epilepsy and letting you know what support is available.

So I thought I would try and answer that question.... 'what is it really like to be diagnosed?'

In one word...  SCARY. It was scary for me, scary for the people closest to me and scary for the people seeing me have a seizure.

It seems a long time ago now, I've been diagnosed with epilepsy for around 10 years, but I probably had epilepsy my whole life, it's just I only suffered focal seizures until 10 years ago.  But I still remember those first few months, a blur on one hand because of the seizures and yet a time I will never forget.

I remember being told it was epilepsy and being told I couldn't drive anymore and just bursting in to tears.  In fact I did a lot of crying in those first few months, crying because I woke up from a seizure confused, crying because friends didn't want to know me anymore, crying because of the side effects of the drugs...

But as the months and years have passed and my seizures have come and gone with no rhyme or reason it has become part of life, part of me and I have learnt to accept it.  That doesn't mean I'm not still scared, the fact I could have a seizure at anytime is scary, I have just learnt to manage that fear and put it to the back of my mind most of the time so I can get on with living life to the full :)

The most important thing is to find support, I am so lucky to have my wonderful family, friends and neighbours.  

The second most important thing is to find out all you can about your condition that way you can advocate for yourself, sadly doctors are not always right and by learning as much as you can you can find the one who knows more than you do and who you feel safe in the care of.  It has taken a while but I feel very lucky to have my epilepsy specialist and the nurses at Queen's Square looking after me.

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