Emily’s story

She was using a wheelchair up until only a few weeks before the challenge began and so she decided to adapt the 10,000 Steps a Day in October challenge.

“I have been living with epilepsy since I was 8 years old. It started with absence seizures and then at 13 years old I started having tonic-clonic seizures as well as myoclonic jerks almost daily. My sister Louise also has epilepsy and so when we were younger, my mum was a single parent of two young girls with epilepsy. I didn’t realise quite how difficult that time was for her, so it was good when Louise and I were able to emotionally support each other. Like me, Louise also had absence seizures and now has tonic-clonic and occasional focal seizures. It’s funny because when we were at school Louise was a typical older sister and wanted nothing to do with her little sister. But she was always there to look after me when I had tonic-clonic seizures and knew to tell people that I didn’t need to go to the hospital. It made it easier to know that she was going through this too and knew how to help. Louise and I tend to have tonic-clonic seizures at around the same time, so we phone each other up to warn about any incoming seizures and we can sympathise when we have bad days.”

“It’s been 40 years since I was diagnosed with epilepsy, and it is still scary to have myoclonic jerks and tonic-clonic seizures. No matter how many years go by, it still scares me. For about two days each month it gets so bad that I have to stay in bed. The myoclonic jerks are scary, and it frightens me to get out of bed. I once had a nasty fall down the stairs after having a myoclonic jerk.”

“I only came out of my wheelchair in September, and I wasn’t really leaving the house. It isn’t just epilepsy I have to manage as I have M.E as well and get fatigued very easily. I can’t do fun runs or cycling challenges, but I saw this challenge on Epilepsy Action’s Facebook page and I thought, this is something I can do. I adapted the challenge to walk 1,000 steps a day instead of 10,000 and I’ve been using my walker which has helped. I knew this challenge was something that could get me out whilst I help others by fundraising. It’s just been amazing!”

“The challenge has helped with my mental wellbeing too. I’m doing an online course at the moment and so on a good day I’ve been getting up early, doing some coursework and then going for a walk. I feel exhausted after but mentally, that’s been a good day for me. The community is really supportive, and I’ve made lots of new friends through the Facebook group.”

“Living with epilepsy can be scary and inconvenient but my advice would be to speak to your friends, family and employers about it – it’s dangerous not to. You can make other people aware of epilepsy and what it’s like to live with. We are resilient and strong people and so we shouldn’t hide our epilepsy. Be brave. You can do it if we weather the storm together.”