Lynda’s experience of epilepsy
I called the epilepsy helpline two weeks ago after a really bad period with my husband’s epilepsy. It was more than a crisis for us.
I’m a full time carer for my husband who has nocturnal epilepsy. It’s incredibly lonely in the middle of the night when he has a seizure and isn’t even aware he has had one. And it’s exhausting.
I hadn’t called on the support of the helpline before, but after a period of uncontrolled seizures, emergency visits from doctors and a stay in hospital, it was obvious we needed some help.
A call for help
Being able to talk to someone who understood was a great support for me.
When I called the helpline I was very low. I spoke to Cherry. She didn’t hurry me; there wasn’t a set number of minutes I was allowed like with the GP. I was able to ask all the questions I had, just like I was having a chat with someone over a coffee. It was a great comfort.
On a practical level, Cherry helped me put together a plan, part of which was to be more sure about first aid.
A brighter future
Cherry noticed I was unsure about when to call for help too – it can be hard to judge by yourself in the middle of the night. I’ve now spoken to the ambulance crew who know us very well, to make sure I ring them at the right times.
I also understand more about the anti-epileptic drugs now. Because of that call we have an appointment with our GP and we’re due to see the neurologist.
We still have challenges to face. I’ll call the helpline again in the next few days with some questions about driving and the DVLA.
This time last year I would never have thought of helping to fundraise for Epilepsy Action. Now I know what a difference it will make I will help fund this incredible service.