My Story

Unsure if I am mad, crazy, over confident in my abilities, delirious, living in a dream world or just trying to tick off my bucket list adventures before I turn 30 but its official, my names Hope and I am taking part in the 2024 TCS London Marathon as part of Epilepsy Society's Team Purple! Why? Because it aint easy being seizy....

Running the marathon has always been on my bucket list ever since I was a young child and I would watch the marathon on the television in absolute ore of the thousands of people running the streets of London wishing one day that could be me.... but equally it's always been veeeerry far-fetched. Why? Currently I struggle to run 5K, sooo that's where I'm starting this from, I like swimming, hate running and actively hate the rain and cold weather that we are accustomed to in the United Kingdom - catch me floating around in a pool anyday, over getting windy ears and rained on. 

The motivation: As many of you probably know, if not from the fact that I constantly joke and take the piss out of the fact that my brain stutters and seizes in the most awkward of situations. Or the fact, that in true iconic and ironic Hope style I got carpe diem tattoed on me, being seizy and spending time in hospital is a huge part of my life. WOOOOO that makes it sound so much fun, I also rattle like a pharmacy (Moscrop, 2020)... when the pills are in stock - cheers Brexit.

After hitting my head on a rollercoaster in December 2019 - Indiana Jones the temple of doooooooooooooooooom really did me dirty, my entire world got flipped upside down and a life before seizures is now something but a distant memory. Life literally changed overnight, and seeing the worry on my family and friends faces as they sat/sit panicking at my bedside, or holding my hand waiting for me to come round from seizures, hoping I breathe, stop dribbling and would/will be ok absolutely broke/still breaks my heart. Its been the most difficult four years, a rollercoaster at times full of CTs/MRIs, brain wave scans, doctors telling me different things, seeing many different neurologists, fighting to get the best treatment for me, lots of different medications - for real at one point I was taking over 20 tablets a day, all to find a controlling cocktail that works for me, and that my body will accept.

I always new I was the queen of procrastinating and daydreaming, my motto throughout university was always diamonds are made under pressure even when it came to writing my masters dissertation and I flew out to Ibiza the week before it was due in still unfinished. But absent seizures have took this crown to an entire new level, my mexican stare off is at a whole new level and when the ambulance crew once told us that one shake attack (a tonic clonic seizure, you will also realise that I avoid using medical terms, it makes the entire thing so much less real and therefore less scary and more manageable) is the equivalent of running a marathon I kind of figured running the London Marathon should be a breeze?... don't quote me until I cross the finish line and I have ate a burger, and sipped a aperol. 

Epilepsy Society is the UK's only charity transforming the lives of people living with epilepsy through world-leading research, advocacy and care. Forutnately, these legends are on my care team, and are my number 2 neuros for when things literally go Pete Tong. The team at Chalfont, I can confirm serve up the best hospital meals I have ever tasted, and although I can provide picture evidence, made me look questionable with a fanny pack full of wires, they temporarily fixed my brain, we spoke they made me feel like I was normal and that for the first time on this journey epilepsy isnt something I should feel guilty about.

On this journey I have also had to say goodbye to my beloved driving licence.... and the heartbreak of saying good bye to Frankie the Fiesta after 7 years of driving up and down the country, independance and soo many roadtrips and happy memories. So now we say hello to Barney the Bicycle who is helping me to train for not only the marathon but is my new super cool mode of transportation and independance, I guess I am saving the planet and David Attenborough would be really proud of me. (Always wear a helmet, safety first!)

Any donation you can give will help the Epilepsy Society to continue their incredible work and will spur me on throughout my training! Because in all honesty, I swim, swim teach and doing laps of the pool is all I have ever known since the age of 16, well that and kicking a ball, kickboxing, batting a ball over a net in the summer months and beach volleyball - but heyy I'm a kid from a seaside, what do you expect? But no joke, I cannot for the life of me run. You should see me walk, I cannot for one do so in a straight line even when sober, and often fall over or walk into things due to having no profiterole vision. This is really going to start from a couch potato to 5k sort of thing and hopefully end up with me running a marathon, powered by percy pigs and jelly babies and my new found love for scotch pancakes in the morning. 

But as a college tutor of sport, who loves buying trainers (honestly, its a running joke with my students that I wear a different pair for each working day of the week), being active and when it comes to practical sessions getting involved and proving im number 1 are some of my favourite things to do. I really cannot wait to start this journey, but also embed some of this running journey into the students curriculum, however there reactions to us doing the cooper run, just dance and my offering to go on a 5k run however has had mixed reviews.

My most exciting propersition about this experience is that I cannot wait to buy another pair of trainers... because along the way, I am embarking on so much more than just focusing on the big Marathon. I have already signed up to London Vitality 10,000 in September (completed it), the Richmond Park half-marathon in December (purely so I can eat as many roast potatoes as I like over Christmas - now completed), the Bedford half-marathon over Easter (completed it) and because I am so motivated to make all of this work and learn how to run next September I will also be completing the London Big Half. Yes, GO BIG OR GO HOME, all or nothing, your probably thinking what on earth is she doing, the London Marathon in itself is a big enough Hope... but I like to juggle and we all no my broken little brain likes to keep busy and motivated so hopefully these focuses and challenges will push me on to get seizure free and healthier. 

In all honesty, I really dont plan on stopping there, I am sure to add more to the armoury to, anything to make P Diddles proud. Because after all, thats the aim here, to raise as much money as possible for the Epilepsy Society, and keep being the cool aunty Popstar deserves. Poppy asked me why I was running before the Vitality 10,000- having to explain to a 3 year old (now fantastic 4), who sees you unwell and not always able to play with her, and knows you go into hospital absolutely killed me. But she doesnt realise how much motivation and hope she gives me, and how strong she makes me. I had to explain to Pops that I have super powers and I was running to help other super heros stay out of hospital and that I need to raise lots of money and tell people my story for that to happen, shes never hugged me so tightly. Poppy believes I am a super hero, so that is who I need to be. 

This year, if I can run as many miles as possible to give back to the Epilepsy Society to say the biggest thank you to the doctors, nurses, researchers and specialists who have done soooooo much for me, that would simply be the best. Raising awareness, and saying thank you whilst raising money for vital research is key - 2024 is a huge year to do this. 

The London Marathon has become an annual, inspiring and colourful fixture in the world’s sporting calendar since the inaugural race on 29 March 1981: a celebration of fun, fundraising and fancy dress.... any of my uni friends know - the weekly netball circle fancy dress was the highlight of my week (alongside the strawpeado race). Giving up my PhD in its final year, due to ill health, is one of the hardest things I have easily ever had to do, its crazy, but I dont just miss the social side of university, but I kind of miss the academic side when my brain used to be super clever and I was almost a doctor or sport (how mad). So stay tuned.. maybe i'll rock some form of fancy dress for one of the races I complete?... only fittting though, that this will have to be in Bedford (February watch out)

Over the years more than a million people have completed the 26.2-mile course, which makes me feel really bloody special, and super cool - an actual athlete. Running from Blackheath (where last summer I partied at Kisstory Festival with DJ Luck, MC Neat, Mystiqueeeeeeeeeeeeeeee and the So Solid Crew... and then sang along to Ronan Keeting and Billy Ocean at Uptown Festival the day after) to The Mall, with a spectacular finish in front of Buckingham Palace. I for one, cannot wait to wave at King Charles as hopefully I am still runnning, if not hobbling past at this point. 

Epilepsy Society's vision is for a world where epilepsy is irrelevant, and people with epilepsy lead the lives they want to lead. In my experience, a lot of people dont really have an understanding of what epilepsy is, people automatically assume its flashing lights, shaking loads and throthing at the mouth.... yes it can be those things, but its so much more.

Epilepsy is so much more than just the unpredictability of having a seizure and comes with a whole host of horrible symptoms and added difficulties. It can feel like a never ending rollercoaster of new challenges to overcome and it truly turns your entire life upside down. Nobody considers the side effects of the medication you have to take so you dont seize, the constant fatigue, or the worry of when your next seizure will be. The fear of being tired and seizing in public, or making it home safely if your at an event late at night?

People dont also understand the constant shame you feel, when you have to let down plans last minute because you just need to stay at home today, or the impact that comments being made about you being different because your epileptic make you feel. The seizures although shit you can get use to, the bumps on your head when you fall or seize and smash into the wall become normal, but the discrimination and the comments people make - thats where more education and awareness needs to happen. But equally, people also don't understand what Epilepsy is, I have both tonic-clonic and absent seizures and can sit in a room full of people at work or out in public and nobody would have a clue if I was having a seizure or not, because as I have been told 'your not on the floor fitting' or 'you just look drunk' despite touching no alcohol. 

Unfortunately Epilepsy isnt going away, and its ok to have a brain that stutters. I repeat - Epilepsy isnt going away, and its ok to have a brain that stutters. But with the Epilepsy Societys research, care and support, living a life with epilepsy can become normal and it doesnt have to be an experience where you feel out of the norm, or invisible.

So as I embark on this crazy year of learning to run, and attempt to raise as much money as possible, if you can spare a coffee and donate (or contribute something larger if your able) my whole heart (and sore body) will be super duper grateful. 

Seriously, seriously thank you so much for your support (I am going to need it). Please keep an eye out for the wild instagram and facebook stories that are to come... and remember #ITAINTEASYBEINGSEIZY

Love ya's, Hope❤️