My experience of living with epilepsy for 32 years

 

It has been great that people are sharing their experiences of living with epilepsy to help raise more awareness of the condition.

This month, Andrew who has been living with epilepsy for 32 years, shares his epilepsy story.

 

How long have you had epilepsy?

I was diagnosed when I was five and I am now 37. So, 32 years.

 

Where did you have your first seizure and how did you feel?

I really can’t remember because I was so young. I think it was when I fell off the climbing frame and I banged my head.

 

What type of seizures do you have? How does it affect you?

Tonic-clonic seizures. I am normally tired after it and I just want to sleep. Sometimes I bite my tongue and then it is just a case of eating cool things to cool my tongue down.

 

How did you feel when you were first diagnosed?

Well I was that young, it affected my mum more than me. I grew up and dealt with it. It’s not stopped me doing anything but there are restrictions such as driving etc.

 

What challenges have you faced since being diagnosed?

I had to stop working. I’ve had to get letters from the doctor confirming that I am fit enough to do sporting activities. Talk Epilepsy

 

How does that make you feel?

Sometimes that makes you feel depressed. Thinking that I can’t really help this, it’s a condition, it’s not my fault.

 

Do you feel that epilepsy has stopped you doing what you want to do?

There are extents. I was doing a joinery course and had done three and half years and was close to becoming a fully qualified joiner. However, if I was to go back to that now, I would have to start from scratch.

 

What would you say to someone who has been recently diagnosed?

Try and get as much help and as much advice as possible, but don’t let anything scare you.

 

Anything else you would like to add?

There needs to be more awareness. I have been in town and had seizures, but people thought I was on drugs.

When I go out to the town, I wear an i-watch, so if I have a seizure it alerts my wife and it sends a map of my location.

I know it is a lot of money, but I think the i-watch is a great invention.

Even when you fall and if you don’t respond, it beeps twice. So, if you don’t respond it beeps again three times. If you don’t respond to that, it automatically dials 999 and it also sends a map of your location.

If you would like to share your experiences of living with epilepsy and join in our #TalkEpilepsy campaign, please email David Coates our Communications Officer on dcoates@epilepsyscotland.org.uk or call 0141 427 4911.

 

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