Epilepsy Scotland wellbeing group member Sean explains how he felt when he was diagnosed with epilepsy and how the wellbeing group has helped him have a new perspective on his condition.
How did being diagnosed make you feel?
When I was first diagnosed, I was still drinking at the time and still in effect an alcoholic.
It didn’t register with me what epilepsy really was. I thought you could take a couple of tablets and then you would be fine. I didn’t realise that it changes your whole life.
I’m a motor mechanic and what it did for me was like someone telling you I’m not allowed to drive a car or fix a car, that’s all I have been doing for 35 years.
Someone saying you can’t do that anymore you just have to sit in the house and watch the tele. I couldn’t do that.
Coming to the wellbeing group, you are talking to someone that’s maybe experienced the same things as me.
They have taken up oil painting or took up wood carving and you look at the happiness in their face and say to yourself I am going to try that.
I’ve tried oil painting, painting with watercolours, charcoal and wood carving and I wouldn’t have done that if I hadn’t come to the wellbeing group.
What made you reach out to Epilepsy Scotland?
What happened was when I had epilepsy I went onto Google and tried to find out more about it because I didn’t know anything about epilepsy.
All I knew about epilepsy was when we were at school and someone says there is an epileptic, they used to fall to the ground and lay their arms about.
I didn’t want to be one of those guys. I’m saying to myself that must be embarrassing. I didn’t want that to be me.
So, my wife suggested that I go to a place like Epilepsy Scotland or somewhere that dealt with people with epilepsy. The staff are friendly and I got chatting to one of them over the phone and he suggested to come in.
He suggested I sit down and have an one to one chat with him and he would try to explain the bad things about epilepsy, what can happen to you and what they can offer as a friendly place that is a big family.
He said if I wanted, I could have a chat with him or another member of staff until such times that I felt confident enough to become part of the group.
I thought I would give it a go. After the first group meeting, it felt like a big family and you knew that every single person has epilepsy and you knew people around about you where qualified to take care of you, so I started chatting away and found that I actually liked it.
It was like you come in on a Monday and it was something to look forward to.
How has the charity helped you?
When I first came to Epilepsy Scotland, I had lots of problems. But now I have suggestions for everyone. I can have this whole place laughing in five minutes.
JV who does the breathing and relaxation, he taught me first of all how to breathe. That was a big thing because if you get too excited, your chest tightens up and that causes slight panic and that panic can bring on a seizure.
So, he taught me how to breathe, it slowed everything down and that way I could talk like a normal person.
What I do now is look at the bonuses you have with epilepsy. I know that sounds crazy. But with the memory problems you got with epilepsy. I can put on a programme like Faulty Towers on a Monday night and watch the full series and then on a Thursday or Friday I can watch it again and not know a single thing that happened on the Monday.
It is like you are watching it for the first time. That’s the bonus. That’s maybe something I have taken out of it.
What advice would you offer someone who is newly diagnosed?
Definitely, 100% get yourself a writing pad and a pen and have that next to you.
Every time you think of something you are going to do, make sure you write it down because you will forget about it the next day.
Also, keep a seizure diary and keep that for three months and if your seizures are still the same read through the three months and see if you spot any patterns or triggers.