My Story

Our Story with Epilepsy

Epilepsy is a common health condition, that too many people know nothing about. Most people see epilepsy as an inconvenience. Flashing lights and falling over. Not an unpredictable and potentially fatal condition. 

Felix, my husband (that still sounds strange), has epilepsy. Felix is now 2 years since he had a full tonic clonic fit in which he uses the same amount of power, muscle strength and energy as it takes to run a marathon. 

Fe has epilepsy and has struggled for a while to get his tonic clonic seizures controlled. Whilst they weren’t regular, having 5 ‘marathons’ in one day is intense for any epileptic. 

For Felix and I, we call them “running a marathon” because the same amount of muscle strength and exhaustion is used in 1 tonic clonic as it is to run a marathon. It also means we can talk about it more privately if needed. 

With Felix’s permission, I am telling you all that epilepsy is just horrible. It can ruin days for people, plans, events, adds stress to any normal day. You never know when you might have one, where you’ll be, if you’ll be safe etc etc. Here’s a story if you have time….

It’s also horrible for any loved one to watch their person go through that and trying to help but also knowing there’s nothing you can do and you just have to let them keep running until it’s over. For Felix they last around a minute and then it’s 30 minutes of unconscious snoring, 20 minutes of him looking at me like he has no clue in the world who I am (I’m going to be his wife this year!!), and then 20 minutes of reminding him of what’s just happened, who I am, who he is, where he is… not until around an hour and half after, just that 1 minute of running a marathon, does Felix remember what happened. And then he’s out for 24hrs, sleeping and drinking sugary tea. 

To put that into perspective, the last set of 5 marathons that he ran, 2 of them where in my little red polo whilst I was travelling down the A41 and he’d just eaten McDonalds. I was terrified, I had to pull into the Tushingham turning, throw myself over his body which was lashing out at me, uncontrolled and with full force, attempt to open the car door and get his seat belt off so he could kick out safely. I also had to be sat in the driver seat with my engine on and be ready to pull off incase we were in danger. I remember pulling him onto his side as much as possible because I was scared that the food he had eaten was going to try to come up but he was sat (so obviously on his back). And I was strapped into my seat pulling him over onto me and trying my hardest to stay calm and get attention from anyone passing by. I honked my horn, I waved my hand out of the window and NO-ONE stopped, I was on my own. He stopped fitting eventually and I drove down to the actual pull in lay-by on the A41 before Malpas where I managed to get out of the car and open the door again before Felix went into another seizure. I rang Felix’s dad who came to help me and bring Fe some water. In the end we got home, and he had another marathon getting out of the shower and my mum has to come and help me because of the blood etc from slipping down out of the bath. I had no signal in the back of our house so I was running to the front, having to leave Felix alone and bleeding whilst ringing my mum to come and help me because I was exhausted and scared myself. 

It was an awful day for Felix, for me, for my parents and for Pete Done who was stuck helping me and my dad lift a sewing machine out of the tiny cottage we lived in because Felix was now unable to help us.

Felix has been just over 2 years now with no marathons and what a year it’s been. He’s on the right dose of Keppra for him (a drug which is known to cause depression, but without it life would be a whole lot worse). We are hoping for so many more years of no marathons and if I can raise some money to help the research and funding into making that happen for others, then that’s great! 

I'm running the marathon to understand the stress and strain that Felix feels from having a seizure.

Please donate what you can, if you can! Thank you for your support and love. 

Anna and Felix.