For the last couple of years, I’ve been running races across the UK, raising money for Epilepsy Action. It’s not like I’m making major sacrifices, as I love to run and I especially love competitive, well organised races. I actually like training and find running is a great cure for any lingering work-related stress or annoyance.
But I raise money for Epilepsy Action all the same. I figure if I’m going to run around a city like a loon, someone might as well benefit from it.
And I chose Epilepsy Action as I have epilepsy.
This isn’t a vested interest in that the sponsorship raised is somehow going to help my own epilepsy. But living with the disorder has given me an insight into how it can impact people, which made this charity a natural choice for me. They provide fantastic support services to people living with epilepsy, as well as their families and carers. I’ve learnt a lot about my own epilepsy and medications courtesy of online support. I’ve also learnt to accept it as a facet of my life based on reading other people’s stories.
I feel a connection with them as a charity and want to do what I can to help out.
But I’ve been pestering others for a while now to donate their own well-earned cash to my sponsorship pot. I fought it would be timely to add some more detail to this and give some insight into life with epilepsy. Don’t read this as a “poor me”, but rather a “so this is what it’s like”.
I was diagnosed with epilepsy as an adult. Which is unusual but not impossible. I don’t have fall-down-in-the-street grand mall (tonic clonic) seizures, but instead suffer seizures while I sleep. So-called nocturnal epilepsy. These leave me feeling like a have a hangover from hell (ironic, as I’m not allowed to drink while taking these meds) and lousy for about a day. I’ve also hurt myself, managing to fall out of bed while thrashing about, injuring my neck in the process.
I also experience absence seizures while awake, which are a little like someone hitting the ‘reboot’ switch on my brain. It’s a very unnerving experience. I sometimes get a short warning that it’s about to happen, but often it just kicks in. I can’t read (if I’m looking at paper or a screen), can’t talk coherently or sometimes at all. At times, I go off for a random walk, sometimes freaking out the people around me. I generally come to my senses in less than a minutes, but I’m left with a headache that would floor an elephant and quite a depressed feeling for a few hours.
I’ve “woken up” from absence seizures in office foyers, toilets and leaning against a wall opposite the Houses of Parliament. I’ve experienced them while presenting to audiences, but generally people are very supportive. All very entertaining.
I can’t drive, can’t drink alcohol (thought some would argue, I’m still in credit after four years as a university student in Dublin) and need to ensure I get a good night’s sleep every night. My meds have weirdly impacted my appetite (in that it has basically disappeared so I often need to be reminded to eat) and I suffer regular insomnia.
That said, I’m very very lucky. I have a supportive neurologist and we work together to stay on top of my seizures. We’ve pinpointed stress and sleep disturbance as strong predictors of seizures. I tend to only get them about every six weeks and it’s been a long time since I’ve suffered a major seizure in my sleep.
I can hold down a demanding job. I managed to complete a doctorate while working. I’m generally pretty healthy aside from the epilepsy and live a full and interesting life. Some people with epilepsy can’t.
Some people need far stronger drugs than I do, which can have debilitating side effects. Some people can’t hold down a job or even safely live alone due to the frequency of their seizures. While I don’t need to drive as I live in central London, I’d be stuck if I lived in a rural area.
It’s incredibly frightening for children with epilepsy and can be embarrassing for teens. Imagine how protective you would be if your young son or daughter with epilepsy wanted to party with their friends. And imagine how frustrated they’d be when you stopped them from going out like every other teenager and the potential for bullying or feeling like an outsider.
Despite everything, epilepsy still carries a stigma. Organisations like Epilepsy Action go a long way to educating the public about this most common of neurological conditions. They support those with epilepsy to understand how to manage its impact and live life to the full.
And that’s why I support them.
So, if you think my running 26 miles around and through London this April is worth a few quid – for a very, very good cause – then click here and pledge something. I thank you for your support and promise to share all kinds of sweaty, tearful pictures of myself once I complete the run.