Thursday, February 14, 2013

Happy St Valentine's Day - A Special Day

Yes. Today is a very special day for me and many people like me - approximately 31,000 people like me, in Ireland alone.  Today is special.  Not because the card companies tell us we should show our love to a special someone with gifts and chocolates and all that other stuff.  Today is special  because it is a day to celebrate  the Patron Saint of Epilepsy.

Unless you suffer with this condition, or know someone who does, you probably won't be aware that Monday, 11 February 2012 was national Epilepsy day.  It was a day where people like me, and many wonderful people I have been put in touch with because of this condition, spent their time trying to raise awareness of the condition, dispel common myths and take the some of the fear that others feel when confronted with someone with epilepsy.

Do you know that 1 in 5 employers in Ireland would not employ someone because of epilepsy?

So, to do my bit and promote awareness, I have decided to tell a little bit of my story, which I am very sure most of you who know me will have already heard.

I was diagnosed with this condition when I was 19.  I took a massive seizure in a cafe in a busy shopping center with two friends, one of whom was heavily pregnant at the time.  I was admitted to hospital and subjected to a number of tests and scans and various other things.  It was a frightening time.  My parents were so worried.  They actually thought that I had a tumor.

When I was given the official diagnosis I was alone.  I had no one with me, because I was an 'adult'. This woman I had never met informed me that I had a life long, life changing and frightening condition that could kill me if I didn't take care of myself.  I was given a list of everything I couldn't do, some medication and sent on my way.  It was terrifying. I was 19 and being told that I couldn't continue to live the way I was living.  I may never drive, I couldn't even lock the bathroom door anymore.

My parents were delighted that it wasn't a tumor. I felt like my life had  ground to a halt.  I had never even really heard of epilepsy in any  real sense.  I didn't know anyone that had it and I most certainly had no understanding it.

So I did what every 19 year old does.  I went out, I partied harder than I have ever partied in my life and I did the exact opposite of what I was told to do.  The seizures kept coming.  My family got more and more concerned and I eventually got admitted into hospital again.

It took me a long time to come to terms with this condition. A very long time. It took me sitting down and accepting my limits and deciding that I would not be defined by it. And then I began to look after myself and really try to get the seizures under control. But that didn't work either for many many years. Any stressful situation and I'd seize.

There are many forms of epilepsy  and many forms of seizures.  I was diagnosed with Junior Myclonic epilepsy and suffered from three types of seizures.  One is the seizure associated with epilepsy, fall to the floor, loose consciousness and shake.  Sometimes I would loose control of my bladder. They were the worst.

The second type I took was an absence.  It was like I would stare into space and not react to anything around me.  When I snapped out of it I was always disorientated and frightened.

The final one I suffered from way a myclonic jerk.  The best way to describe this is that it is like the moment you are about to go to sleep and your body twitches or jumps.  I did that all day. Sometimes over 300 times a day.  My arms, legs, hands and feet would twitch.  Sometimes it was barely noticeable  other times it was strong enough for me to drop whatever I was holding.

What to do when someone has a seizure?

If you are out in a club or pub and someone is seizing, don't assume it's drugs and step over them.  That's happened to me on more than one occasion.  One time, it was someone that I thought was a good friend.  She just stepped right over me and said to my other friend she 'couldn't handle this'.

Don't crowd them.  I am always so disorientated when I come too.  I often come around thinking that I am after being in bed and dreamed I was going to have a seizure.  So imagine for a moment, you think your in bed, you open your eyes, your not in your room where you thought you were, your on the floor, surrounded by strangers and friends and feet and all sorts. It is terrifying. And then, when your really come around, its so embarrassing!  Everyone tells you not to be embarrassed, and you know you have no control over this, but its horrible!

Move anything dangerous that is around the person and make sure that they are safe. Sit with them, talk calmly to them, tell them they are ok.  Do not try prevent it.  Do not worry about swallowing their tongue, its a myth.  Do not put anything in their mouth. Do not call an ambulance unless the seizure lasts for longer than 5 minutes.

When they have come too, remind them where they are and put them in the recovery position.  Stay with them until they are coherent.  Stay calm at all times.  They may want to sleep - thats all I ever wanted. Keep talking to them.  Ask them for someones number to call. Get them a friend or family member on the phone if they are alone.

If you know someone with epilepsy, talk to them about it. Ask them how they feel and what it is like for them.

There are some great information websites out there. is a great starting point.  Talk to kids in schools.  Epilepsy is a controllable condition.  31,000 people in Ireland are living with it at this very moment.  They are having seizures, dusting themselves off and getting up and starting the next countdown and trying to achieve another seizure free period.  This condition should be spoken about as normally as asthma or diabetes or migraine   There should never be a situation where a person doesn't get a job because of this condition.  We all need to get educated on it.

There is a beautiful girl I know that set up this amazing online home for Irish epileptics.  Her name is Rachel Ashe and her drive and ambition has helped bring this condition into the spotlight.  If you are someone that has epilepsy or knows a person with the condition, and you need someone to chat to.  Someone who knows exactly what it is you are experiencing and feeling, then come and join us.  If you even want to find out more info on the condition, come join us.

Thankfully, I am now over 6 years seizure free.  But I also know, this thing that happened so suddenly has the possibility of returning to me at any point.  And, until then, I just need to enjoy every minute of every day that I am seizure free.

Happy Valentines day everyone! You see, its not just a day made up by card companies!!!

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