We were sent this fantastic piece by Mary which charts her journey with epilepsy so far but also acts as a reflective piece on how things have changed when it comes to perceptions of epilepsy in Ireland...
I was born with epilepsy and I'm now 66 years old now.
Back when I was diagnosed, for my parents there was nowhere or no one to turn to about your concerns or how to support your child with epilepsy. Every once and a while, my parents would meet with my neurologist and reported how things were going with my condition. I can also remember intermittent EEG appointments every now and then.
But we were very much on our own. It was my mother who learnt how to manage my seizures and used her gut instinct to guide her. My seizures were controlled by the time I was 8 or 9 years old.
For me, the golden rule was to not get overtired, get good sleep and to take my medications as directed.
It was tough as a teenager. I hated not being able to stay out late with friends. They would be heading off to a disco, but I would have to go home. I felt as if I was looking in at them living their life from the outside, and my life lacked spontaneity. Everything had to be planned in advance and I felt like I was constantly missing out on all the fun. I was famous for saying ?I can?t, I need to get x hours of sleep?.
It was tough but I got through it but as we all know, once you're diagnosed, there's always a possibility that your seizures could return ? and mine returned when I was 27 ? this time, a different type of seizure compared to what I was having in childhood.
Medications had to be changed and it took years for me to gain seizure control once more. I couldn't get work at the time. Remember, this was in the mid-80s and was told how I would be a liability to have on the premises or worse, how I would be an embarrassment to the firm should I have a seizure.
With my seizures still presenting, after many tests, it was found that I would be a candidate for surgery ? and over 20 years ago, I had a successful surgery on my right temporal lobe. I still take my medications every day, a small price to pay for being seizure free. Despite the ups and downs that epilepsy has brought, and the dark days which I have had, I have still had a full and happy live ? and I was able to return to employment. I'm now actually retired and enjoying this new chapter of my life.
I wanted to share my story this National Epilepsy Week, as a reflection on my journey but also to highlight how far we have come. There is a dedicated community of people out there, there is much more understanding and awareness about the condition. As someone who has lived with epilepsy my entire life, it's really heartening to see the supports that are offered by Epilepsy Ireland and to see people talking more openly about their condition.
While no doubt there is much more to do, I think we have come such a long way and everyone who has done anything to raise awareness of epilepsy should be immensely proud of themselves this National Epilepsy Week.
To the wider public, I would say take two minutes to learn more about epilepsy.
Thank you Mary for sharing your story – we really appreciate it and we have no doubt it will resonate with so many - as well as highlighting why its so important that we all continue to raise awareness in any way we can.
If you or your loved one need any information or support about epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. Visit the ‘Our Local Service’ page on our website to find details of your local Community Resource Officer.