Monday, 16 May 2016

It's National Epilepsy Week ~ let's get talking about epilepsy

So this week is National Epilepsy Week and a survey by Epilepsy Action shows many people with epilepsy still fear discrimination and are worried about talking about their epilepsy.

So I was thinking wouldn't it be great if we could use this week to start turning that around. How? By sharing our own stories of epilepsy, showing people that yes Epilepsy can be scary and unpredictable but we all battle through it and come out stronger and more reliable people, better partners, children, parents, friends and employees because we have been through hell and just got on with it, it may not feel like that on the hard days but we are all amazing epilepsy warriors.

So here goes, my story, I would love it if others shared there own stories in the comments, doesn't have to be pregnancy related just show the world we are stronger than epilepsy.

I was diagnosed with epilepsy 12 years ago aged just 19 and around the time I stated university. When I was first diagnosed I was lost, scared and I felt my whole life hinged on becoming seizure free, like everything was put on hold waiting for that to happen. Seizures were so unpredictable, with no warnings and knocking me out for days, how could I function like that?

There were a few periods where it looked like it would happen, months with no tonic clonic seizures and then bam a seizure would happen out of the blue. It was like it was teasing me. There have been some dark days where epilepsy definitely pushed ahead in the battle.

Eventually after 6 years of these intermittent tonic clonic seizures I found the strength to challenge my neurologist about why it wasn't going away. His response of well that's just how it is  wasn't enough for me so I pushed to see an epilepsy nurse and got refered to London.

Finally I saw a doctor who really listened to me. She did more tests and re diagnosed me with temperal lobe epilepsy and said she felt I was having focal seizures. Suddenly a reality hit... I hadn't been seizure free for months ever, these little focal seizures had been there the whole time I just didn't really link the two.

With a proper diagnosis I started talking to other people with the same type of epilepsy and other professionals and it became clear that while the seizure frequency tends to be relatively low seizure freedom can be hard to get especially after so much time. I then I started to realise I couldn't continue to put my life on hold waiting for seizure freedom. I needed to start living life with seizures.

So I started looking for ways to cope with the anxiety I felt from the unpredictability of seizures. I enrolled on the expert patient programme and looked into mindfulness, both helped me come up with strategies to manage my anxiety.

Then I started to live life, finding a job my epilepsy didn't effect so I could give it my all, having two amazing children, riding my horse, skiing in America and getting out running again. I didn't let epilepsy win.

So 12 years after my diagnosis I am in fact 18 months completely seizure free... it is a miracle and yet not a miracle I needed to live life. People say you must be so pleased, and I smile and say yes I am. But am I pleased? Of course I am happy but I had already accepted a life with seizures in order to make sure I didn't miss out on living life so being seizure free I don't like to think about too much because if I do have a seizure again I don't want to feel the incredible disappointment I have so many times before - I don't want to miss out on life because of it.

I guess what I am trying to say is don't let epilepsy win. Have hope things will improve but also find a way to live in the worst times otherwise we miss out on so much.

Sending lots of love to all my fellow epilepsy warriors and their families and friends who stand by them, hope to read your story soon xxx

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