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Katie Lee

My name is Katie, this is my story of my Epilepsy Journey and how running has changed my life i want to share my story to try to raise as much awareness as possible and to also show what can be achieved when suffering with Epilepsy.

I was diagnosed with Epilepsy at the age of 6, i am now 19. I have been through some very difficult times and had to make some of the toughest decisions of my life. Epilepsy is a condition that affects the brain, it is not just when someone has a seizure:
• It is the medication side effects
• Low self esteem
• High risk of injuries
• Numerous hospital appointments,
• Tests/scans,
• Constant worrying,
• Loss of coordination,
• Feel lonely
• Feel isolated
• Suffer severe memory loss
• Learning difficulties
• Loss of concentration
• Sleep difficulties.
• Photo sensitive/ any flashing lights i struggle to cope with
I suffer from all of these massively. When I have a seizure I become very tearful, need reassuring, very weak, feel ill, wouldn’t recognise anyone, and feel ashamed/embarrassed also loss of bladder control. It all started when my mum was talking to me and i wasn’t responding and I was just looking at her blank, so I went to the doctors, they did lots of tests and diagnosed me with Epilepsy at the age of 6. I then got referred to a specialist. My parents spoke to my school about my illness and my teacher asked me if i was happy to share it with my class friends, I said yes. So we all sat down and she explained what was happening and what I am going through. Everyone was lovely; I wanted to go back to school as normal. So as soon as I got ready, I attended school, but it was very hard as I had no idea about the condition and what was happening I just felt ill constantly. I have been on lots of different medication that there is for Epilepsy, but nothing worked for me, until the current medication I am on, i take it every day, morning and night, the medication I take makes me very drowsy, sleepy and weak every day when i got in from school, all way to year 11. I would have to go to bed as the medication knocked me out that much.

In my time to try and find out why i have Epilepsy I have had to go under numerous tests and scans from the age of 6. I have been to Great Ormond Street, I have also had surgery when my seizures were at the worst. On a typical day i would have up to 20 seizures a day. I am in the process of getting transferred to the adult services for Epilepsy and this is a really big thing for me.

Epilepsy changed my life severely, the simplest thing for some people is what I find very challenging. I would love to drive but at the moment I am getting weaned off my medication so I am unable to. I have a severely bad memory which causes me to struggle while learning. Running has also helped with my coordination/ balance and has improved massively. What people can do at 10 years old it is scary for me, such as crossing a road, having a bath, going out with friends as I could have a seizure at any point.

I feel that i have been discriminated in having Epilepsy, as my teacher wouldn’t place any safety mats on the floor, so my teacher said you will have to sit out and not join in, he refused to put them out, my friends were disappointed that this happened, i am not going to lie, I have struggled through school, before the illness i would have achieved great grades in school. I think to myself why me? I wouldn’t wish the illness on anyone but i just want it to end. I missed school lots due to appointments and my medication trying to get sorted and due to having seizures.

In 2011 at the age of 11 - The last few weeks of my junior school was horrible, saying so many goodbyes for different reasons I went to see my consultant and we agreed to go through with the VNS (Vagael Nerve Stimulator) surgery fitted as my seizures were that bad.

A VNS is a small unit that is fitted into your chest, similar to a pacemaker, an incision is made near your arm pit and the battery / unit is placed and stitch to your chest muscle, another incision is then made in the neck, in a crease line for discretion and then a wire is connected to the battery unit, the other end of the wire is then attached to the Vagael Nerve, it is then made active and sends electric impulses onto the Vagael Nerve which in turn sends the signals to the brain, my VNS sent impulses every 30 seconds, i could also feel them happening, and for a few months it affected me when i spoke, i sounded like a robot, but this passed.

I cried through the appointment as I was so scared, he said it could be next week as he put me on the waiting list, 12th July 2011 year 6, it was our leaving trip and we went to Barnsley bowl, I had a brilliant time, I remember my mum and Ryan waiting for me I went to collect my things from school with Ryan while my mum spoke to my teacher. My dad received a phone call from the hospital to say they have a space for me to have my operation the following day. Then I was crying when my teacher told me I was going in for the operation tomorrow, I just froze. I had a couple of minutes sat with my teacher she was telling me how proud she was of me and that I have been so brave. So me and mum and Ryan walked up the school drive, me shaking and crying into my mum’s arms, Ryan holding my hand reassuring me, as we got to the top of the school drive, my friends were there giving me a big hug and saying they will see me soon. My parents made lots of phone calls, i spoke to my close family on the phone I was so afraid.

The day of 13th July 2011, I said my goodbyes to Ryan, he told me to be brave and that he will be waiting for me, he was so nervous, my mum reassured him too. We arrived at Sheffield’s Children’s Hospital at 7.00am I was petrified holding my mum’s hand walking to the ward. I went for an assessment I was crying thinking this is the end for me, the nurse came in and gave me some medicine to try and calm me down. It was lunch time, I then got taken to theatre, i was screaming along the corridor, my mum gave me a hug and was crying as she left my side, my dad came with me holding onto me. The nurse got the Where’s Wally book and tried doing that while the surgeons placed the cannula in, soon i fell asleep, my dad stayed with me the whole time. I remember waking up in recovery and saying have you nearly finished, my dad was there, dad went to go and get my mum, the nurse said it is all over, she then gave my dad a booklet with lots of pictures for me to choose one for my bravery certificate I chose a Disney princess. I then got taken back to the ward I had plenty of rest and sleep, the doctor said if you eat all the chocolate cake you can go home as it has been successful. It was a struggle but i ate it as i wanted to be at home.

We arrived home I got settled in bed and my auntie Laura and Uncle Ian arrived with Ryan, they came in the room and Ryan said, hello you have been so brave I am so proud, well done!! He gave me a big hug. My uncle Ian gave me some flowers. I improved day by day.

Leaving school mum and dad had a meeting at my high school lots of things got put in place to help me after I had my operation. When I have seizures I need reassuring and being surrounded by someone familiar. I was so scared of what the high school was going to be like am I going to make friends.

2 weeks later it was my school play which I had a part in but couldn’t take part, due to having not recovered properly, I was upset that I couldn’t take part, but me and mum still went and watched and I saw all my friends and they gave me a big hug and I just wanted to play but my mum kept saying no. A few days later it was my leaver’s assembly which I wanted to go to, me and mum went but unfortunately Dad couldn’t make it, it was a very sad day. I then wanted to stay the whole day with my friends my mum wasn’t so sure but my teacher put my mum’s mind at rest by saying if there is any problems we will phone you straight up, the class was having a little party, I had a great time with my friends. I was still in pain and very sleepy but I took the day very slowly.

When i was transferring to move to high school I was very excited but nervous too, all my friends were going to Carlton, but Ryan went to priory we had a look at both schools and priory was the one where they put everything in place to help me, I wanted to gain confidence, meet new people, we had to have several meetings. I had transition day and had a great day but then all of a sudden the first day of high school arrived I felt sick, I met some wonderful people who I am still friends with now. It has been a struggle getting to the very end of my school life but with my teachers and friends who believed in me and supported me i got through it.

In my time living with epilepsy I have been bullied several times, I got hit on the head several times but it once led to me to having a seizure. I had people saying “isn’t it funny when Katie has a fit and wears those glasses” (Photo sensitive glasses) and people making fun of me for having Epilepsy, by saying epsilepsy. People would think i was staring at them, but i wasn’t I was having a seizure i was so embarrassed. I refused to go to school I just wanted it all to go away and end, I was terrified about my whole life and what this would mean for me. I have been fighting Epilepsy for 13 years now and I am not going to give up now, it has been a hell of a journey and everyday has been a struggle for me.
My Grandad was very ill, and in April 2013 we sadly lost him due to cancer, which had a big impact on my Epilepsy I had a lot of seizures during this upsetting time. I am still grieving for him now.

I started my running journey in August 2013 - My dad completed Barnsley parkrun at Locke Park and I went to watch him and was truly inspired by him. So on the 10th August me and dad ran the parkrun together, I completed it in 42:18 I was proud of myself it was a great feeling but very tough however everyone was very supportive, my dad signed up for the great north run in 2014 I decided I wanted to do the Junior Great North Run and raise money for a charity that has helped me dearly. I trained very hard but unfortunately I became injured but this didn’t stop me from getting to the start line. I completed it and was truly proud I have improved massively since not only in my running, but confidence too, running has helped me to cope with my Epilepsy by meeting new people, and when I keep my mind focused i am in a happy place. I have completed so many races out of my comfort zone I have knocked 9 minutes off my PB from when I first started my running journey. I train very hard. I have organised purple day for Epilepsy, Won Park runner of the month, Inspirational sports award at school, visited my primary school to share my story to the children, completed 100 Barnsley parkruns, 2 half marathons, lots of 10K races, taken part in Cross Country, but one thing always remains, my passion for parkrun, if we are doing something as a family, then i try and plan it so i can do parkrun first, I have met some amazing people on my running journey that I wouldn’t change for anything they are like family to me. Even when people have finished parkrun, the regulars come back to clap, cheer and support, it gives you a sense of being accepted, when you are on the start of a parkrun or a race, we are all equal, and there is no discrimination.

Running has changed my life for the better completely. The things i do now such as walking to a bus stop, going out with friends, going up to people and asking questions i would not have dreamt of doing before I started running, this may seem strange, but the motivation, strength and support i get from others is unbelievable, I just love parkrun, I have made so many friends. The support is absolutely amazing.

Out of the blue on 4th September 2013 a big seizure nearly took my life, just when I thought my seizures were under control, when the world came crashing down on me I had my very first tonic clonic fit. Which knocked my whole confidence, it was the first day of Y9, very excited to see my friends but nervous too, I said to my mum I feel sick and I have a headache she said take some paracetamal hopefully you will be ok. I went upstairs to get my uniform on I came back down stairs all I remember is waking up in an ambulance. My dad was about to do CPR on me, I had stopped breathing, my lips had turned blue, my parents thought this was it, they were going to lose me. My mum ran around to our neighbour for help. The ambulance arrived, luckily my breathing returned as the paramedics arrived, I spent a whole day in hospital, I couldn’t walk properly for a week or so. I returned to school the next day however I couldn’t manage it so I stayed at home. We had to have a meeting as things had got worse for me. I was so frightened I just wanted everything to go away it was awful I was horrified to find out I had a fit.

I travelled with Dad to Great Ormond Street London in October 2013, we had an appointment to see a specialist to get a second opinion, I was so scared it was unreal; the specialist told me it would be a 50 percent chance of me growing out of Epilepsy. I had lots of tests done as well while I was there.

2016, It was the time where i was sitting my GCSE’S in Y11- I was having meltdowns and panic attacks, I just couldn’t do the exams, I then started to suffer from anxiety and depression so I am not only fighting epilepsy, now I have depression/anxiety to tackle. I tried my absolute best at school, gave everything I possibly could, it was a very tough year. All of my teachers supported and reassured me. I tried so hard, it was then results day I collected them and opened them in the car as I was convinced I had failed everything, how wrong was I, i passed everything apart from maths, I was over the moon with these, I started college and studied childcare but wasn’t keen so now I am studying beauty therapy and I have achieved my level 3 make up.

Last year i had to make the decision of turning my VNS off as it was very low on battery and i would have to have another operation to replace it, it was the hardest decision, as I am now relying on my medication. I am in the process of reducing my medication after having no seizures for 3 years.

Just to let all you Epilepsy fighters know, you are not alone; I have battled for 13 years when i had thoughts of giving up!! Aim high and you can achieve anything you want to. I wouldn’t be where I am now if it wasn’t for my Mum, Dad, Ryan, Family and Friend’s, Doctors and Nurses i can not thank them all enough for what you have done for me, they have believed in me and supported me so much and have been there every step of the way. They were there to pick me back up when I just thought I can’t do it anymore. I am determined to never give up, keep fighting you Epilepsy warriors.

In my running journey i have a role model Jessica Ennis-Hill, she never gives up regardless, i would absolutely love to meet her it would be my dream come true and tell her how much of a great role model she is to me, i watched her on the TV all the time, i read books about her she is my idol, even though she has now retired from Athletics, i find her so inspiring.

If you are an Epilepsy Hero out there, all i will say to you, is don’t ever give up, there is a light at the end of the tunnel. I never thought i would have got this far. Don’t ever give up, you are not alone I am considering going to university next year. I would love to hear some of your inspiring stories. I take every day as it comes. I don’t let Epilepsy beat me i beat it.

Katie Lee

Katie Lee
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