Wednesday 6 June 2012

2 Years in the making...

2 years ago last week, I had my most recent seizure.

I'm 26 now, I developed Epilepsy at 3 and apart from the 5 years I had seizure free after my surgery, last week marked a very big milestone in that it was comfortably the longest I have been without a single Epileptic seizure.

As you might imagine, what happened after the 5 year absence left a scar of a different kind to that which had caused my Epilepsy originally - I was told to leave the job I loved in the Police and 7 years later I'm still not quite at the point I was then in terms of being able to buy a flat or house because of the London market.

But this time around it's different I think.

What I don't have is the issue of my job depending on if I can drive or not. More importantly, the medication which has created control over my Epilepsy, now two years and counting, don't give me serious side effects that cause me issues with working. Sure, I'm probably slightly drowsier than the average person on the street, but the trick is to get your life in a place where Epilepsy or no Epilepsy, it wouldn't make a difference.
In the same way I don't stand next to platform edges or have baths, I adapt my life to get more sleep, or more coffee, depending on the day of the week!

The biggest thing about the milestone, is that I can celebrate it knowing that even if I did have a seizure, my life would carry on as normal. Quite different to my milestone of half a decade after my neurosurgery, where my job, livelihood and standard of life, all hinged on me never having a seizure again. I guess the most reassuring thing for me is I could have a seizure tomorrow and all I would likely do, is go to sleep for a few hours, wake up and get on with the rest of my day.

Although it was tough at the time to have to start again, I look back and understand far better now just how lucky I am. Because for better or worse, the surgery I had, laid the foundations for the 2 years I have very recently celebrated seizure free.

There is much trial and error with Epilepsy treatment. When you deal with the brain you have to think in generalised terms, it's so complex, you can't look at it in enough acute detail to work out exactly what is going on.

I guess for me it's been 17 years of trial and error and another 6 of no trial at all. From medications as a kid, which were a disaster, to a false start of kinds with the surgery, but something which has dramatically improved my standard of living and now in combination with my current medication, is making my life safer, calmer and most of all allowing me to live a really fulfilling life.

I don't care how much people disagree with me because of the 2 or so decades of bad experience, but I am hugely lucky and have a great debt to pay.

I just feel that having had the luck I have, I've also been handed to opportunity to try and do something with it too. To take the opportunity I've been given and try and help raise new awareness for Epilepsy and new funds for Epilepsy in the UK, because I'm now well enough to do it.

So, I hope, even in a tiny way through my cycling, I can create some luck for even just one other person, out of the 600,000 people with the condition in the UK. 

1 comment:

  1. Congratulations Katie, plus that was a great piece in Cycling Plus :D