Epilepsy: My Story
After recently reading Sambow’s Diabetes: My Story article, it inspired me to write about my epilepsy.
Epilepsy is a condition where you have seizures that can happen anytime, anywhere.
A seizure (or fit) is when you become unconscious, often are shaking, very stiff, clench and grind your teeth and sometimes go blue around the mouth because you’re not breathing.
Sounds scary, right?
I had my first seizure aged about ten, in a caravan in the south of France. I was in bed at the time in a tiny room with my two sisters. My parents heard me making weird noises and came into the room and found me seizing. Of course they freaked out and pulled me out of the caravan and onto the grass outside. As my mum attempted to give me mouth to mouth, a few life guards camping opposite came out (thank God!) and basically saved my life. I haven’t had a seizure as bad as that since.
Once I was back in Cardiff I had various scans such as an EEG, (a scan of your brainwaves after flashing a bright light repeatedly in your eyes, and deep breathing) to see what was wrong with me. They couldn’t find anything, so naturally they assumed it was a one off thing.
But over the years, up until I was nearly fifteen, I had more and they were all at night. I continued to have scans but they still couldn’t find anything wrong with me. Eventually the neurologists came to their senses and said “All her seizures have been at night, so why don’t we scan her brainwaves at night?”
Around last June I’d been having these jerks when I was writing, and I would literally fling the pen out of my hand. I went to the University Hospital of Wales (Heath Hospital) and was wired up and had to carry a huge pack attached to my trousers, that was wired up to electrodes stuck all over my head. I had to spend the rest of the evening, night and next morning like this.
That summer I went to see the neurologist to see if they had finally found something. They had. I was finally diagnosed with Mild Nocturnal Epilepsy. So basically, my brainwaves in the day are normal, but at night they’re not. Weird isn’t it?
My fits are often caused by overtiredness or stress; for example I spent a whole day travelling back from my summer holiday one year, and as soon as I fell asleep at home, I had a seizure and was rushed to hospital.
My case is different in the way that most people are born with it but they grow out of it, but mine kicked in once I hit puberty. I have to be very careful in the future not to get too stressed and not hugely overtired.
But I am actually incredibly lucky. Most people with epilepsy are much worse off than me. For example there’s a boy at my school who has a fit at least once a week, and I once met a little boy at hospital, who has to wear a helmet all the time because he has them so regularly.
Mine is extremely mild; my Epilepsy won’t stop me driving like it will for a lot of people, and I won’t have one randomly on the street.
There are certain things I’ll miss out on, like sleeping on a top bunk and going out clubbing with my friends, but these are absolutely tiny things which are meaningless when there are people for whom it’s dangerous to even be left alone.
I know and appreciate how lucky I am, and I am going to deal with my epilepsy, my way.
For further information on epilepsy have a look here, or click here for organisations supporting people with epilepsy in Wales.
IMAGE: fallsroad
2 Comments – Post a comment
Sambow
Commented 73 months ago - 29th April 2010 - 16:27pm
Really great article!
it's good to know you won't miss out on that many things but it must have been scary when you first had a seisure.
When I was diagnosed with diabetes I was sad about having to watch everyone else eat what they wanted when they wanted but know now there are people who may be worse off.
I love your determination as well, well done :)
- Sambow
lemonnhead
Commented 73 months ago - 29th April 2010 - 19:19pm
Thank you! Yes it was. To quote the famous song: 'Always look on the bright side of life! *whistles*'
Ahaa! Keep going Sambow! Thank yo very much!