For this year’s #EpilepsyWeek, Shannon has reflected on her experiences with epilepsy, to help others understand and learn more about the condition….
I was diagnosed with epilepsy at birth due to a brain injury. I’m now 28 and I’ve lived with epilepsy my entire life.
Looking back, my childhood was very difficult as seizures were very unpredictable. One time, I remember having a seizure when I was out shopping with my grandmother. and while we were shopping and I had a seizure. Halfway around the shop, I had fallen over and we didn’t really think anything of it, but by the time we reached the checkout, I felt like I was losing the ability to speak. I remember tapping my grandmother and then she knew – she sat with me on the ground, while I had the seizure – all while the checkout lady continued with the shopping! When the seizure ended, two men who worked in the shop helped us to the car – one carrying the shopping, another carrying me! I always remember this experience as after the seizure, it took me hours to be able to speak again and I needed a lot of sleep to recover.
Another time I remember having a drop seizure, which causes a temporary loss of muscle, and you suddenly drop to the floor. Luckily, I didn’t hurt myself, but when I was growing up people used to think I was a bit clumsy, but I was actually having seizures.
Now, I take medication to control my epilepsy, however, sometimes the side effects from it can be quite challenging. As I have grown up, things have become easier because I have learned what triggers my seizures. This is useful because I have learned what to avoid and I also understand how important my medication is to my daily routine.
So far, I have mostly spoken about the physical aspect of the condition. However, epilepsy can have an impact on mental health as well. I’ve learned that mental health is just as important as physical health, so it is really important to find the right supports as they are key to a healthy lifestyle. With the right medication and supports, I live just like anyone else.
I take part in many activities and being out and about is an important part of how I live with epilepsy each day. I attend a day service in Wexford called Cumas and I also volunteer in a leisure centre known as the Apex. I also do a bit of work for Trinity College Dublin where I speak at conferences for nurses. All these things keep me involved in the community. I keep myself fit and active through my membership of the Special Olympics team in Wexford and I also play football with Gusserane All Stars GAA.
Epilepsy doesn’t manage me – I manage epilepsy. This is the message I want to share with everyone who is reading and living with epilepsy – it can be challenging but try and remember this as much as possible.
Thank you for sharing your experience of life with epilepsy Shannon – and the important message for others living with the condition. If you need support on your or your loved one's journey with epilepsy, do not hesitate to get in touch with your local Community Resource Officer. You can find their details in the 'Our Local Service' section of our website.
Further Information
- To learn more about how to correctly respond to a seizure, visit the ‘Seizure First Aid’ section of our website.