I am planning to walk/run 50k in one week (11th-17th May) this month to raise money for Epilepsy Action UK! (I know this is probably not the most impressive challenge in the world but I haven’t run for ages and it’s going to be hard.) (I’m also aware this will be easier as I am not working, but that is because of epilepsy!!)

I’ll be tracking my km on Strava 🏃‍♀️

What is epilepsy?

There are many misconceptions about epilepsy and throughout history, it was considered either a mental illness (this wasn’t debunked until the 1940s!) and/or a ‘spiritual disease’. Epilepsy is in fact a fairly common condition where sudden bursts of electrical activity in the brain cause seizures (or fits). There is no clear reason why a person might develop epilepsy. 

As many of you know, I was diagnosed with epilepsy in 2009 aged 19, after two separate incidents of terrifying seizures which left me in hospital, unable to recognise friends, family or even myself for several days. There was never any indication I might have epilepsy before that (apart from some misdiagnosed petit mal as a teenager) and adjusting to a life with it was, and still can be, extremely hard. Aside from the small lifestyle changes (goodbye driving, baths and solo swims), the big consequences are scary. I’ve had seizures in the shower, at work and even in Tesco. Few things can make you feel more vulnerable or disconcerted than coming round to strangers looking bewildered, asking your name and you not remembering it, even if you could speak. The types of seizures I have are very violent (tonic clonic) so I’m often covered in bruises afterwards and need a few days to recover physically as well as fully regain my memory. I’ve been so lucky to have a wonderful neurologist since being diagnosed (thank you NHS 💙) who has prescribed me the right medication to manage this condition. However, the meds have their own challenges and remembering to take 8 a day is hard, but missing even one dose could be fatal so spontaneity or forgetfulness are not an option. The meds are also not a cure, they just ensure the seizures are less frequent and not as debilitating. They are also not guaranteed to work forever so that’s why, after 11 years on this medication, I’ve had to put an end to my time in Madrid and come home to try another treatment, following more frequent seizures in a shorter period. I was reminded recently by my doctor that seizures are life threatening when they occur and it’s easy (and sometimes helpful!) to forget that when you have to live with them. 

Having said all that, I recognise my epilepsy could be so much worse. There are some people who experience multiple seizures a day which makes living a normal life completely impossible and every year 1000 people in the UK will die from it. 

Epilepsy Action is a fantastic charity that supports people living with this condition. When I was first diagnosed, a volunteer from this organisation came to my student house and explained to my housemates, among other things, what to do if a seizure ever happened. They also made me feel emotionally supported at a time which felt a bit like an identity crisis, and they do this for countless other people with this condition.

1 in 100 people in the UK have epilepsy and those living in deprived areas are 3 times more likely to die from it. Epilepsy Action campaign for accessible healthcare, a timely diagnosis, the right medication, public respect, awareness and understanding for people living with the condition and they provide essential practical and emotional support. They also support relatives and carers of people with extremely severe epilepsy.

Please help me raise £200 to help them continue their brilliant work!