I am doing this Marathon for everyone who suffers from Epilepsy. Please see below for an inside story about what my girlfriend has been through and that other people do every day. I’m very excited to make a difference and raise money for more research to help beat epilepsy…

Here is my girlfriend’s story:

“I’m not sure how old I was when I first started having seizures, all I know is that they started whenever my memory started. They were all during night time, when I should have been asleep. I would wake up feeling stressed and disorientated. Then the drooping of my mouth, tingly tongue and arms and aggressive shakes would start. Soon after, I would lose consciousness. As I got older, I used to try holding my tongue to make it stop. I’d also try hold my shaking arms steady, and take a drink. However, I soon realised that it wouldn’t stop this very horrible, real dream and I would instead just be spilling water all over my bed. Unfortunately they got worse as I got older. They turned a lot more violent and I was unconscious a lot more. Eventually I was unable and unaware to even sit up. I tried to explain to my parents I had these "strange dreams" in the night. I explained as best I could about what I went through. But like any parents, on the way to drop off three loud children at school, it got put down to "just bad dreams". So I carried on having them. It got to the stage where I would wake up, and it was normal. I used to think “here we go again, this is so annoying and not very nice”. Eventually falling back to sleep and waking up very groggy in the morning. Again, thinking this was a normal way to feel before school.

When I was 7, I went on a family holiday with my sister, my brother and my mum and dad. I always shared a room with my sister on holidays. One morning, I woke up and had one of my “strange dreams”. She woke up, panicked, and thought I’d choked on one of my colouring crayons that were next to my bed. She then screamed for mum and dad who were in the next room. As she was screaming, I tried pulling myself across the room, shaking and barely standing as I went. I tried picking my shaking hand up, with the other shaking hand. I reached out my index finger, and tried putting it on her mouth while trying to say “shhh it happens all the time! It’s fine!”. But obviously, those words didn’t sound like that when they came out. After that holiday, and a lot of tests, a few years later, I got diagnosed with sleep Epilepsy. Straight after that, I spent the rest of my life in and out of hospitals. I’ve had all the scans you can imagine. I’ve also had a few emergency hospital visits from bad seizures in the night too. I got told when I was diagnosed, it was more than likely juvenile epilepsy and I’d grow out of it. Sadly, as I got older, like I said, they got worse. Pretty much all of them were unconscious. I would wake up hearing ringing and screaming. Sometimes I was on the floor. I would also have blood shot eyes and bruises and scratches from myself. Sometimes I was sick. Sometimes I had wet myself. I always, had the worst headache imaginable. It would also take me at least a week to feel slightly normal, and believe there was a point in being alive.

After I was diagnosed, we first tried to go down the route of changing my lifestyle. This was because we got told epilepsy medications could have serious side effects. This route included; limiting sugar intake, getting more sleep, not many sleepovers and all in all having a bubble-wrapped childhood. Unfortunately none of these worked. The hospital visits got more frequent and that silly rubber hammer got used more frequently on my knees. Through all this, I think I hated that reflex hammer the most haha. 

Eventually, I finally got put onto 250mg of Levetiracetam, once a day. Over 10 years later, I’m now on 75mg of Lamotrigine and 1000mg of Levetiracetam, twice a day. The seizures have got less, the control is mostly there, but my worry, stress and anxiety towards what I have, will always be there. This, and the uncertainty, I struggle with the most. I feel very lucky though. My lovely parents have always been there. I wouldn’t have the strength I have now if it wasn’t for them. I would wake up after every seizure, in absolute terror and ask them, “Who am I?! Where am I?! Who are you?! I should know you but I don’t!?!”. I would sob my heart out and move away. This happened until my memory returned, and I realised, even though I was close, I hadn’t died. They constantly reassured me. They slept next to me, gave me a doorbell next to my bed (incase I was ever able to press it before the seizure fully hit), and so much more. They have been amazing to me. I can’t imagine it’s been easy for them either. Not just watching their daughter during and after a seizure, but also being the ones to say “no” in regards to doing certain activities and going places. This was all because they couldn’t risk a seizure happening.

I also have the most amazing, fantastic, kind and loving boyfriend who has supported me through all of this. He has unfortunately witnessed three seizures in a row. This was within the first year of meeting him. He always double checks that I’m setting my 12 hour apart medication alarm (and he sets himself one incase I ever miss mine). If I’m ever twitching or worried in the night he makes sure I know he’s there and everything is ok. He knows night time is the worst time for me, and that I get very anxious about it. He is so unbelievably kind and caring about what I have. I never thought I’d meet someone who would have such patience and understanding.

Just because I have epilepsy, it doesn’t mean I fall to the floor and that I am incapable of the things everyone else can do. Every time my illness has pushed me down (and believe me it has, many a time broken my heart and my life.). I have always told myself how lucky I am. I managed to pass my exams at school. I was able to live as normal a teenage life as I could. I was able to pass my driving test and drive. I have my own horse, which I have dreamed of since I was a little girl. I have also qualified to do my dream job as a Registered Veterinary Nurse. The pill taking and the clock watching, the traumatic memories and stress of having this will always stay with me. But I have to come to terms with that.

Always stay positive and keep fighting because that’s all we can do. You have to live every day like it’s your last, I promise you will benefit from this.”

Epilepsy Research UK is the only UK charity exclusively dedicated to driving and enabling life changing, life saving research into epilepsy.

A life free from epilepsy is possible. But only through research.