Sunday, 16 November 2008

Living with Epilepsy - the beginning.....


I'm Gemma, Davids fiancee and have been living with Epilepsy for about 4 years.
When David and I first started going out Epilepsy was easy to ignore, he hadn't had many fits and it seemed controlled by whatever drugs he was taking, if I am honest, I didn't know what drugs he was taking or anything about Epilepsy because I didn't need to know. It really wasn't a factor in our lives or the path our lives would take.

About a year ago now, just after we moved into our first home together (after a year of saving up!) suddenly Epilepsy became a massive focal point in our lives. David had a long series of seizures, different kinds, in a completely random order. There was no reason, nothing to control them and with my limited knowledge of Epilepsy I felt powerless to stop it all happening.
The fits started very soon after we moved in, I had never seen David have one before, in fact he had only had a small number of fits since diagnosis it was scary, he didn't look like David at all.
Everyone around us had a limited knowledge of how to deal with the situation and how to cope with the lack of reasoning behind the seizures.

It is very difficult to not blame something or someone for Epilepsy, there are no causes for Davids seizures and therefore no ways of attributing blame or trying to control the Epilepsy. You are always thinking, perhaps if I do more of this, or less of that then it will stop and everything will be OK again. It has been a hard process finally realising that this is a part of our lives now and it may never go away or be completely under control. Those dealing with Epilepsy such as myself must breakthrough this realisation in order to try and look to the future.

We both refuse to be victims of Epilepsy, it will always be a consideration in some of our decision making processes but will never stop us making a life for ourselves. Its a constant battle I think between trying to consider it and accepting it as opposed to ignoring it and refusing to let it change our lives, the balance is a difficult one and we are both learning all the time.

1 comment:

lonca iribarren said...

Dear Gemma,

My son is 21 and has a great girlfriend like you, that had epilepsy pushed into their lives just this year! All I can say is that he had two very big status (repeated seizures) and ended up in intensive care twice in two months. I was very scary.

We live in Santiago, Chile and at this time it is summer with great weather and as you can imagine at 21, the summer is one big party, but he is taking it easy, taking his pills and not drinking at all, and he has been super!!! The lack of sleep is one big NO NO, as it is not taking the pills or drinking alcohol. You can be so helpful to him by being a friend when it comes to these things, to keep him away from the seizures and bringing back peace to your new home together.

Big hug and best of luck