Amanda’s story

Amanda is taking on the Great North Run to raise money for Epilepsy Action.

“In July 2020, the day before my son’s 11^th birthday, I got out of bed as normal and started to get ready. I was cleaning my teeth and that’s the last thing I remember. When I opened my eyes, I was lying on my bed and I didn’t recognise anyone around me, including my son. I later found out that I’d had my first tonic clonic seizure and had hit my head as I fell. I don’t have a lot of memory of that time but after a while I started to recognise my husband and son and there were two paramedics in my room. They originally suspected I’d had a stroke, but at the age of 39 I was diagnosed with epilepsy.

“I don’t have much memory of how I felt in the period following my diagnosis. I just remember feeling afraid to go anywhere alone and I felt like a teenager again as I had to check in with people to let them know where I was. This is something that I still do now. I mostly felt anxious to go back to work as I had no memory of how to do my job. Learning was difficult, particularly in the beginning. I could remember the whole script of Dirty Dancing but I would forget something I had seen half an hour before. It was difficult to explain to people how I felt at the time. I felt so fearful that my short-term memory wouldn’t get better.

“Once I received my diagnosis, I had to hand in my driving licence, which upset me as being able to drive was my independence. It took me 7 times to pass my driving test originally, so it was a huge achievement for me, and I felt like that was all being taken away. I also had extreme fatigue and realised that I couldn’t manage a whole day without a nap, so with that and my short-term memory issues, working a full day became difficult. I had to reduce my hours and responsibilities which felt like a huge setback in my career. Through lockdown when I was on my way to work or to appointments, my brain felt like it would empty and I didn’t know where I was supposed to go. This was extremely scary. It could last seconds or minutes, but it felt a lot longer to me. Sadly I had to leave my job and I felt frustrated at the way epilepsy was impacting my life.

“NHS facilities have been fantastic, particularly during lockdown when things were difficult for everyone. They recommended that I speak to Epilepsy Action for advice and speaking about my epilepsy with people who understood was extremely moving. They took me through everything I needed to know, step-by-step, and nothing was ever too much.

“I am now in a good place and am looking forward to taking on the Great North Run for Epilepsy Action. I have been seizure free for over a year and have found part-time work doing basic admin for the NHS. My team are amazing and I’ve recently joined the wellness team at work where I hold group meditation sessions over Zoom. I have found mindfulness, reiki and other holistic therapies helpful and so have set up a small business of my own doing this. My family have been so supportive and I have no words to describe how amazing my husband and son have been. My son is so brave and always looks after his mam. I feel so proud of the young adult he’s growing into.

“The Great North Run will be a huge challenge for me as I have asthma and I’m still very fearful of running alone. I once had a seizure whilst running on the treadmill and became injured. But I try not to let it control me. I invested in a smart watch which has a fall alert, and I always make sure I know where the nearest hospital is. My two friends, Janis and Lisa, will be running with me on the day. They have been by my side throughout all the training and without them, or my other friend Ruby, I would not have been able to do this – I’m so grateful. Epilepsy Action has helped me in so many ways and so doing the Great North Run to raise money and awareness of epilepsy is so important to me.”

You can donate to Amanda’s fundraiser here: Amanda Freeth is fundraising for Epilepsy Action (justgiving.com)