Victoria's first Half Marathon for Epilepsy Society

Hey all reading this :)

I’m Victoria, and after years of saying, "I’ll do it one day," I’m finally taking the plunge! On May 18th, I’ll be running my FIRST EVER half marathon and I’m doing it for a charity that is very close to my heart and brain: Epilepsy Society.

Around 625,800 people in the UK live with epilepsy. That’s about 1 in 107 people. I was diagnosed with generalised epilepsy with photosensitivity (PPR) in 2021 after years of ignoring symptoms, I later found out were myoclonic seizures, which started back in 2016.

For anyone unfamiliar, myoclonic seizures often feel like sudden, involuntary jerks or twitches, usually in the arms or legs. In my experience they involve brief blackouts, lasting just a second or two, where you remain conscious but can’t hear or see what’s happening around you which can be scary when you aren't in a safe space to let it pass. It’s easy to dismiss these as clumsiness, muscle spasms, or just zoning out. I know I did for years but they can be important signs to recognise and take seriously.

My diagnosis came after a tough wake-up call. After celebrating finishing my degree, I had a tonic-clonic seizure the morning after a night out. I fell out of the shower mid seizure. I don’t remember much, I just woke up feeling confused and scared. The paramedic's asked who the Prime Minister was, I remembered it was Boris Johnson. He's a pretty hard one to forget.

I would like to thank Priya, Liv and Vinayak for finding me. I will always be full of gratitude for not being alone that morning. Things could have been very different. I count myself very lucky! Following an MRI and EEG, I was officially diagnosed two months later. Alcohol really impacts my epilepsy and this episode really showed me the consequences after drinking too much and ignoring all of my past symptoms.

Losing my independence was hard. I had to surrender my driver’s license, which was difficult. I really miss singing my heart out in my little blue Ford KA. But with the love and support of my amazing parents, siblings, and friends, I found a new sense of independence. I moved to London, started my first graduate job in TV, and decided to turn this challenge into something meaningful.

I am running this half marathon to raise awareness and support for everyone affected by epilepsy. This charity is so important as they provide vital resources and fund important research to improve lives. Epilepsy can be isolating at times. It’s hard to explain how you are feeling in your brain and body. For anyone who has epilepsy, I want you to know you aren't alone and I am doing this for us <3

Epilepsy is still a condition that needs greater awareness, especially in schools and workplaces. More training on seizure support is crucial. It could make all the difference if you’re ever with someone experiencing a seizure, potentially even saving a life. Understanding how to provide general support for a loved one with epilepsy is equally important. Taking the time to learn and do your research means so much to me and to others living with this condition!

If you’re able to contribute, no matter how small, it would mean so much to me. Thank you from the bottom of my heart to everyone who donates or cheers me on.

You can follow my training progress on Strava —let’s get this show on the road! ‍

Big hugs and love,

Victoria x