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Clair’s Story: Adjusting to life with seizures and living seizure-free

I was diagnosed with epilepsy nearly 20 years ago, just as I was heading off into the big wide world for university. It was a scary time for my family and me, having seizures so far from home. Once on medication, my seizures settled a little, and I went a year without a major seizure. Then out of the blue, I was back at square one, waking up on the floor, surrounded by worried people and an ambulance crew.

Skip forward ten years and I was married, had my daughter, Riley, and worked for a charity. My epilepsy had finally been better diagnosed. It turned out over those ten years, I was having a lot more seizures than I thought. I changed from Lamictal to Keppra and then became pregnant with my second child, Benji. Benji was born, and I was finally months living seizure-free.

Adjusting to living seizure-free

Please don’t get me wrong, I was overjoyed to be seizure-free. But I lived my whole adult life with epilepsy. I adjusted everything in case I had a seizure. I never used my degree and worked in a job where it didn’t matter if I had one. I didn’t drive anywhere and was a pro at the buses and trains. I made sure my young daughter was safe if I had a seizure and that everyone knew where I was going all the time.

I turned my epilepsy into a positive part of my life, using my free time to educate others about epilepsy and support newly diagnosed people. I didn’t want to waste my life dwelling on the negatives of epilepsy. Suddenly, I needed to start facing a life where epilepsy didn’t drive my decisions but was still there in the background…and that scared me.

Reframing my lifestyle without seizures

So I started by running the London Marathon! My friends and family thought I was crazy. Since my first seizure happened while running, it made me feel like if I could run a marathon, then my epilepsy was controlled and I could start changing my life! So when my little boy was 18 months old, I did it! The tears on the finish line were so much more than tears of joy for completing a marathon. They were my proof my epilepsy was well controlled.

Next I needed to cope with the negatives of Keppra. It made me moody and sometimes quite low. Exercise and being in nature helped me, so I made walking a huge part of our family life. It helped us all stay positive.

Then I started driving again. It meant that Benji’s childhood has been very different than Riley’s. I have mixed feelings about that, but it did open up new opportunities to me.

Finally, I needed to address the fact that I had a degree I had never used because I’d chosen a job that my seizures wouldn’t ruin. It was too late to become a physiotherapist, which is what my degree is in, but teaching had always been something I was interested in. So I took the plunge, did a PGCE, and I am now in my second year as a primary school teacher. It is very hard work, and I have to make sure I get a lot of sleep and don’t let the stress get to me, but I do really enjoy teaching.

Finding perspective 

My life is good; I do live well with epilepsy. I lived well when my seizures were not controlled, and I live well now that they are. My only regret is that epilepsy awareness was a much bigger part of my life before. I was educating and supporting others to make life for people with epilepsy better. I just don’t have time to do that anymore, and I would feel a bit of a fraud doing so as my epilepsy is controlled. I miss the support networks and the feeling I was making the world a better place. I guess I still am, just in different ways.

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