Francesca’s epilepsy was very hard on her during her school years. Having become good at overcoming challenges, she decided to take on another one – get fit and run Tough Mudder
The first time I had a seizure was actually while sailing in France. I was wearing sunglasses so at first my family didn’t realise I was having a seizure. They only noticed when my sister told me to stop kicking her. My parents were steering the boat and managed to moor during the chaos. I was 14 at the time.
I’m 23 now and living in Bristol with a lovely girl called Jasmine while I’m at university doing my master’s degree in Social and Cultural Theory.
I was diagnosed with epilepsy after my second seizure. I went to school one morning with a really bad headache and by midday, I had a black eye. We went to hospital and pieced it together to realise I had had a seizure in the shower that morning and hadn’t remembered.
I have a mixture of different seizures. I have tonic-clonic seizures, absences and myoclonic seizures. I’ve been told that I am also slightly photosensitive, which could cause a seizure, but I am yet to experience this. I also have eyelid myoclonia but this was not actually diagnosed until I went to see a private epilepsy specialist. I realised then that I must have had epilepsy for a lot longer than we first thought. I used to have periods of what we called ‘flicky eyes’ when I was younger, without realising it was epilepsy.
My seizures both are and aren’t controlled. I would consider them controlled, as my tonic-clonics have stopped, which was the most important thing to me. There was one time in the last year when I felt a tonic-clonic seizure coming on. This was after travelling to Malaysia, so I was suffering from jet lag. But I took emergency medicine that stopped it. I still have myoclonics and eyelid myoclonia when my epilepsy is bad or I’m very tired. But I feel extremely lucky that I only have these now.
Made me who I am
When I first got epilepsy, I think I was too young to understand it properly and so at first I felt there was no real impact. Eventually my seizures started getting worse and more frequent, and the side-effects of the medicines meant I was missing school. I was only making it in to school a quarter of the time, at a push. I then realised that it would have more of an impact than I first thought. You are going through so much as a teenager that having this extra thing just became too much.
I was diagnosed with depression after a suicide attempt. They thought the depression was a side-effect from the medicine I take, Keppra (levetiracetam). But looking back, I think it was a mixture of that and me coming to terms with my epilepsy. This was a particularly bad period of my life. I had to leave school on my doctor’s advice. I realised that my friends just couldn’t understand my condition and it caused me to feel extremely isolated.
After a year off from school, I started sixth form at a new school and things improved from then. Although there was this period of my life, where it felt like my life was torn apart, I now don’t look at epilepsy as a bad thing. In some ways, epilepsy has affected my life for the better and it has led me to where I am now. Going through something so young taught me to grow up and to be more sensitive to what other people are going through. I am really grateful for that.
There are times where I don’t feel so positive about it, admittedly. I’ll be annoyed that I can’t stay up as late as my friends on a night out in case I get too exhausted and have a seizure. Sometimes I feel like I’m going to have a seizure and horrible anxiety sweeps over me – something some people with epilepsy might recognise. But honestly, I would not say that it has affected my life for the worst, because it has made me who I am today.
But it has definitely been hard for my family. At times, I think it was harder for them than me. It was really difficult for my parents to see me go through so much emotionally, let alone see me have seizures. But they have been amazingly supportive and I can’t thank them enough for that.
I’m lucky enough to have a boyfriend, who I met at university, who has also been incredibly supportive. He researched epilepsy when I first told him about it and he brings me junk food whenever I’m not feeling well. He told me that my epilepsy has taught him more about the condition itself, but also more about invisible conditions. It’s made him think about what people with these conditions might be going through, which I think is really great.
Getting into gear
For me, doing Tough Mudder was a bit of a random decision. Some of my friends said they were going to do it and I said I would as well. My boyfriend had done it before, so he agreed to do it with me again. Running it to raise money for Epilepsy Action was the obvious choice. I had been wanting to raise money for the organisation for a while but just wasn’t sure how I would do it.
I had not done anything like it before. At school I was allowed to miss PE lessons to try to catch up on my classes or get some extra rest. It was only a year before Tough Mudder that I had started going to the gym and getting into some exercise. I hadn’t done cardio exercises since the age of about 15. When I first tried to run after signing up for Tough Mudder, I could just about run 1km on a treadmill!
I started trying to get a bit further each time. This was a really slow process at first because I was extremely unfit. I ran about three times a week and slowly made progress until I could run 5km. When I went home to Hertfordshire for the summer after finishing university, I started to run outside, which I found to be a lot more fun. Slowly, the running turned from a chore to something I actually really enjoyed.
I didn’t do any running in April and June as I was busy enjoying the holidays and going to festivals. In July, I realised I only had a month left until Tough Mudder so I had to get into gear. I ran two or three times a week, slowly working up to 10km, which is the longest distance I did before Tough Mudder.
On the actual day, the toughest bit was the running because I’m still not great at controlling my breathing when I run. But to be honest, the whole event was enjoyable – which I never thought I would say!
I was quite convinced that I was going to cry throughout the race and have to stop a lot. But on the day, I was shocked to find myself absolutely loving it. The obstacle which I dreaded the most was called the Arctic Enema – it’s where you are plunged into freezing cold water with ice in it. It actually ended up being my favourite bit. Of course, when I was in shock from the cold, I didn’t love it. But straight afterwards, I was so proud of myself and exhilarated that I’d pushed myself through it.
Before doing Tough Mudder, I definitely had concerns about my epilepsy. I was worried that I was putting my body under a lot more stress than I ever had before. I worried that this would lead to a seizure either during or after the race. If I had had a seizure during the race, I know how frustrated I would have been to not be able to finish the course. I definitely couldn’t help but worry and feel anxious that after the race I would have a seizure.
During the actual event, I did also have to take a few precautions. The main one was that I didn’t take part in the obstacle called Electroshock Therapy, where you get electric shocks from dangling wires. The website advises people with epilepsy not to do this one. I was really gutted about missing an obstacle and felt kind of like I was cheating at first, by skipping it. But I realised it wasn’t something that I should feel bad about as it was out of my control. I made an effort to attempt all the other obstacles, making sure I didn’t leave any out, so I would feel more like I wasn’t cheating. Also, when I saw my friends falling to the floor and screaming from the electric shocks, I had a moment of gratitude for my epilepsy and wasn’t so bothered about missing it.
The only other precaution I took really was that my boyfriend made sure to be next to me during any obstacles in the water, just in case I had a seizure. There are also safety people on hand the whole time during the race. There are people at each obstacle specifically to look out for any danger or if anyone is hurt.
I think anyone considering taking part in Tough Mudder should definitely do it. During the training process itself, I actually found that my epilepsy settled a bit. All the exercise I was doing was helping me sleep better. I think exercise can be really beneficial for your mental and physical health, so it’s great if you can use an event like Tough Mudder to get you into it. I think it’s sometimes easier to focus on what you can’t do than what you are actually able to do. Running Tough Mudder opened my eyes to all the things I can do and made me realise I am a lot stronger – mentally and physically – than I thought.
I felt so proud finishing the race wearing the Epilepsy Action vest. Not only was I raising money for Epilepsy Action but I was someone with epilepsy finishing that race. I would encourage anyone to take part in Tough Mudder – and you will surprise yourself seeing all the things you can do. And it was definitely worth doing for the guilt-free takeaway meal afterwards!
Taking on Tough Mudder
You can take part in a Tough Mudder event for Epilepsy Action in 2019. There are many events throughout the year at various locations.
North London (Urban 5k) – 12 and 13 April
London West – 4 and 5 May
Midlands – 18 and 19 May
Northampton (Urban 5k) – 31 May and 1 June
Scotland – 15 and 16 June
Bristol (Urban 5k) – 5 and 6 July
Yorkshire – 27 and 28 July
South West – 17 and 18 August
North West – 7 and 8 September
London South – 21 and 22 September
For many more articles like this, become a member of Epilepsy Action and receive Epilepsy Today magazine four times a year!