Making adjustments and finding gratitude
Living well with epilepsy to me isn’t about being seizure free. It isn’t about wishing I could drive. It isn’t about wishing I didn’t have to take pills every day, and it isn’t about wishing I could be in a different job.
Living well with epilepsy to me is finding a job that is accommodating to my needs. It is about being the parent to my little girl that I always dreamed of being. It is about having friends who make me feel safe because they are clued up on the latest seizure first aid. It is about my family feeling at peace knowing I am okay at home with my little girl.
Living well with epilepsy to me is about raising awareness of the condition; it is about being given so many opportunities to meet other amazing people living with epilepsy and living their life as best as they can.
I have been a writer for Living Well with Epilepsy for nine whole years, and it has been the most amazing journey. I am so blessed to have shared my life with so many people over the years. I have also participated in the blog relays most years, and hearing other people’s stories and insights is wonderful, so I was excited to be able to participate this year.
My journey with epilepsy
I am a 27-year-old from Derby, England. I am a mum to 15-month-old, Grace, and I was diagnosed with epilepsy in 2006, just before starting secondary school. I had absence seizures, which later turned into tonic clonic seizures and complex seizures.
I remember being told my life would be different to what I had perhaps planned. What is different? I was only 10 years old. I hadn’t made any life plans, and I had no idea what I wanted to do, but instantly it was pushed onto me that my life would be “different.” Did this mean I would never work? Did this mean I couldn’t have children? I was so uneducated and it took months, maybe even years, to understand what different is. But I learned it really didn’t matter what I could or couldn’t do, all that mattered was that I was safe and happy.
We had seizure alarms, and I had to change up what I wanted to study. At the time, I was devastated, I thought, “Is this my life now?” Numerous medication changes, complex seizure development, potential surgery. I left one of my favorite jobs because I was so worried about my seizures getting in the way.
It was only when I started my new job that I thought to myself, “This doesn’t have to be it. Epilepsy doesn’t have to take control of my life.” We can’t cure epilepsy, and we can’t always control it either. Some people, like myself, have intractable epilepsy, sometimes known as drug resistant epilepsy. But that is OK.
Limitations don’t define me
Living with a long-term health condition or disability may mean you have to make adjustments to the way you live your life. Maintaining a healthy lifestyle and taking advantage of the available support will help you to live well and do the things you enjoy. There are things we are advised to not do, but that doesn’t stop you from finding new things and new passions.
If it weren’t for epilepsy, I wouldn’t have achieved half the things that I have done. Having a medical condition doesn’t define me, but it has made me. In a good way.
Having epilepsy made me a very insecure, withdrawn young person but as I got older, it made me bold, confident, educated, and adventurous. Because I wanted to be the person that I needed when I was diagnosed.
Giving back and letting go
I went on to write a children’s book to help young people understand tests that they would need to undergo for epilepsy diagnosis. I did a wing walk for charity to raise money for a specialized school for young people with neurological conditions.
Something I have learned is to give myself permission to let go and accept my limitations. One key to better coping with a chronic condition is skipping some of the things you used to consider must-have’s—and being OK with it.
We all only have 1,440 minutes in a day. I learned to accept that I cannot do it all, so I need to focus on what’s important and do that well. Living well with epilepsy to me was finding my purpose and accepting that I have epilepsy, but it does not have me.
25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England.
Emily’s Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10.
Based in UK.
Many thanks for writing and educating people about epilepsy. My 10-years old son was just diagnosed with Epilepsy a couple of months ago. We are still learning which kind he has, but it seems complex as he has already had two medical emergencies in A&E after a tonic-clinic seizure and another one that still we cannot understand the kind. Do you know if there is a dedicated group or blog for children where they can share their experiences? I have found several groups for adults and adolescents, but not for younger children. I agree with you, it is a lot of medical information out there, but sometimes it is important to talk with someone that is experiencing epilepsy and understand that you are not alone.
Many thanks for your contributions. I am sure many people read your blog and benefit from it.
Best wishes, your daughter is lovely.