Personal Stories

Making a Difference

05 March 2012
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I was just gone 18 when I was diagnosed with epilepsy. My first seizure happened on the very first day of a three-month holiday to Jersey; I had no idea what was going on. I remember suddenly being in a bedroom when the last thing I remembered of that night was being out with friends, safe and happy.

I was terrified as there was a strange man in the room with me. I had my jeans in my hands and fear exploded through me. I had no idea who he was or what was going on. This stranger turned out to be my boyfriend at the time who had come to the hospital with me. I was kept in for five days in order to get all tests I needed but they couldn't really identify the issue. They arranged an appointment for me with an Irish neurologist and I decided that the best thing to do was to go home. That was until I bought a ticket. To Amsterdam and went to do a bit of travelling. "It's just a seizure...I won't let it stop me doing anything!!" Ohhh how wrong I was!

After a summer of travelling I went for the appointment as soon as I got home. The neurologist told me I had epilepsy. It was the strangest thing anyone had ever said to me. I was in total shock; I couldn't think of what questions I needed to ask and I left the office with a prescription. I felt like the word 'epilepsy' was stamped onto my forehead and everyone knew that I had it and they would look at me like I had an incurable disease. To be honest, I didn't know much about it, I'd barely heard of epilepsy before. It took me a long time to be able to tell people. At first, tonic-clonic seizures only happened about once every six months but as I've gotten older they seem to be about every six weeks, the last one a week ago from the date of writing this.

Life went down in a black spiral. I found it very difficult to accept the fact that I had to change my life and the way I lived in order to have some semblance of control over the seizures. For a long time I kept drinking, stayed up late and didn't get much rest. As the seizures became more frequent, I began to question my ability to do my job. I was working in marketing and events and having to work long days coupled with seizures was more than I could handle at the time. So I left my job and stayed off work for three months - I was still quite sick at this time so it wasn't as fun and relaxing as it may sound!

During these few months off work, my medication was changed. The new drug did not suit me at all. At one point I actually thought I was going crazy. I was very paranoid and because of the seizures, I was so sore that I found it difficult to get out of bed. The most vivid memory is of my friend Lisa sitting on the end of my bed with my boyfriend Paul - they gave each other a look which I saw and asked what was going on. Part of the paranoia I guess. They told me that we had the same conversation several times in a half a hour. My memory was so bad I couldn't remember people coming to visit me or even if I had eaten or talked to friends. It as so scary but it made me realize that I had to get out of the spiral.

A Particularly bad episode happened when I had four tonic-clonic seizures in about 24 hours while on holidays. I had hit off so many things that people stared a lot. I missed my plane home several times. When I got to the hospital with Lisa, I had my third seizure. Lisa had just had enough; I fell flat on my face and she just pushed every emergency button that she could find. Doctors and nurses came rushing in to the room in hazmat suits as it was around the time of the swine flu epidemic. I thought they were aliens and I fought for my life, pulling all the drips and oxygen away from me. They held me down and I really hoped the aliens wouldn't take me away from Lisa. The next morning I woke up on my own with no wallet, bag or phone. I had nothing but a hospital gown. I had to find a computer, so I pulled the drips out my arm and emailed Paul to say I was left on my own and had no money, memory or phone, could he please help me. Then Lisa popped her head around the corner and I was so happy I cried. We eventually went to the airport and managed to miss another plane but they were very good and transferred us to the next available flight. I kept forgetting I was very bruised and wondered why people were staring! How rude!!

One day I suddenly burst into tears (actually, more like hysterics) and asked Lisa if I was going crazy and I needed to start taking control of my life again. I felt like it was another chapter of my life closed and I was ready to move on.

I didn't have much confidence while looking for a job. I felt I mightn't be able to handle the stress and tiredness but I really like my work and decided to slip it into the interview about having epilepsy. It didn't stop them offering me the job and they understand when I have to take time off work. It just gave me confidence to feel like I can achieve anything I put my mind to. When I was younger I promised myself I would take whatever life gave me and run with it and that's what I started to do.

I received my Honours business degree and then after a year break went on to do my Masters in Marketing. Don't get me wrong - it was tough but I am proud of myself for keeping going when there were a lot of times I felt like giving it all up.

I had a lot of support from family who all take care of me when I need help. Paul is always there for me through seizures but I find the hardest is the emotional stress afterwards. I'm quite happy and normally a bit sore and hyper - I'm ready for anything! The following day I'm quite tired but again happy. On the third day I just can't see the bright side of life and get upset over the fact I've had another one, asking myself questions like "did I do anything to bring this one on?", "are the tablets not working?" and "what else I can do??" I used to promise myself that I would NOT have another seizure, then it would happen again and I would be devastated and angry with myself for letting myself and everyone else down.

It was only eight months ago that I gave up alcohol. It was the best thing I could do for myself. At the start I really missed it but after a couple of months realized that I am the same person and don't need alcohol to be me.

A few weeks before Christmas last year I had a seizure. I was off work for about a week and was again struggling with the emotional side of seizures so I decided to have a look online on Facebook for a group of people who were going through the same thing. As much as Paul is there for me I really think that unless you have gone through it people don't understand. It's so difficult to explain what it's like or why I feel like I do. I couldn't find a suitable Facebook group so I stubbornly decided to set up my own group called Epilepsy Ireland.

I was extremely nervous that no one would join but it gave me focus on the positive side of life and made me believe that I could make a difference. People started to join and talk about how they found medication; their epilepsy stories and experiences, asking questions etc. Parents of children who have seizures and those who have joined have been able to provide a support structure for each other; myself included. The group is more about sharing experiences and creating a support structure rather than the technical aspects of epilepsy.

The most valuable lesson I've learned from the site is perspective. There are people on the site who struggle with everyday life, for example not being able to work, walk, drive a car or travel by themselves. There are people who are having over 40 seizures throughout the night. Perspective made me realize how lucky I am. I have so many people who care for me. I have the full support of family and friends and I can work and travel by myself.

The next seizure I had was about three weeks later in my hairdressers. The ambulance was called and I went to the hospital. I had to wait for five hours and then I had a seizure in the emergency room. I got seen pretty quickly after that! I went online and posted on the Facebook group and was overwhelmed with the amount of messages members sent me; it gave me such a boost and honestly made me realize how lucky I am.

I heard about the Flora Mini Marathon recently and decided I was going to do it. I used Facebook to recruit some friends to walk it with me. There are now six of us walking and getting as much sponsorship for Brainwave as we possibly can. The support I'm getting is unbelievable. I decided to hold a fundraiser in the local GAA club, a bingo night. There are over 15 companies who have given me spot prizes to raffle off. I'm still a bit worried about who will turn up but hope it will raise some money - every little helps and Brainwave is a charity worth making the extra effort for.

I'm so excited about the marathon and the whole day, it gives me confidence and focus on everything I'm doing to help make a difference. Everyone can make a difference no matter how small as long as you have faith in yourself.

Finding Epilepsy Ireland on Facebook - Simply login to www.facebook.com and search for Epilepsy Ireland.

 

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