Dave was diagnosed with epilepsy when he was 17 years old and has been living with the condition for almost 40 years. He shares his experience with epilepsy and how Epilepsy Scotland’s Helpline has helped him.
Please be aware that Dave’s story contains him talking about suicide which may be upsetting for some people.
“When I was first diagnosed it was completely devastating and I thought my life was over. My plans to join the fire service were quashed, the choice to drive was taken from me and I would be on medication for the rest of my life.
I have three different seizure types. Myoclonic jerks, which happen numerous times every day. Focal with impaired awareness usually two to three times a week but often in clusters and tonic-clonic which tend to happen one to two times per month.
The myoclonic jerks don’t tend to affect me too much, however, if I am having a lot they can leave me tired. The focal seizures are very tiring, but I do recover fairly quickly, and finally, the tonic-clonic are for me the most dangerous, and as well as exhaustion, aching muscles, and brain fog, there are often injuries to contend with as well.
It can take me days to recover from these seizures.
Challenges living with epilepsy
I live alone and my seizures are medication-resistant and come with no warning so every day is a risk assessment and most things that can usually be taken for granted can be challenging.
My home is set up with safety in mind, so my furniture is arranged around walls to leave less obstacles for me to hit during a seizure. I can’t cook on a conventional cooker due to the risk of burning myself or causing a house fire. I can’t use a bathtub and only shower with supervision.
Going out alone is something I only need to do if necessary and even then, I am in constant contact with my partner Clair when I do so.
Another challenge, which causes me anxiety is the reaction that some people have to witnessing a seizure in public. I have been physically removed from a shop and dumped in the street and told by a lady on a bus that “people like you should not be allowed out in public.”
I woke up in the drunk ward of a hospital and was at one point arrested for being drunk and disorderly (I don’t drink alcohol).
How Epilepsy Scotland’s Helpline helped me
The Epilepsy Scotland Helpline staff listened to the problems I was having and facilitated counselling and support for me. I feel much more supported and knowing that the Helpline exists, helps to reduce my anxiety around my epilepsy.
Truthfully, I probably wouldn’t be here anymore, when I first called the Helpline, I was at a very low point and felt suicidal. Their empathy and support then and on other occasions since, helped me to find some positivity and determination to live a good life despite my epilepsy.
Please don’t hesitate, the scariest part is dialling the number. The Helpline team totally understands epilepsy and how it can affect us. They have incredible knowledge and go out of their way to make sure that you have access to any resources and contacts that you need.
Sometimes a listening, empathetic ear is all we need, and you will certainly get that every time you call. It’s scary and can feel very confusing, take your time to come to terms with it and learn as much as you can about epilepsy.
Advice for someone newly diagnosed
Become an expert about your own epilepsy and don’t be scared to ask questions and raise concerns with your Neurologist, Epilepsy Specialist Nurse, or GP.
Take your medication as prescribed and make any adjustments that you need to make your life easier and safer. Talk to friends and family and ask them for support when you need it, join a support group and phone the Epilepsy Scotland Helpline.
Epilepsy is a horrible condition to live with but with the right support, determination, and the warrior strength that we all have, you can live a good life.”
Our freephone Helpline is open Monday to Friday between 10am and 4.30pm. Call us on 0808 800 2200 or email contact@epilepsyscotland.org.uk
