Having first been diagnosed with epilepsy at 13 years old, to help raise awareness of the condition and help others living with epilepsy know that they are not alone, Amy from Westmeath has shared her experiences of life with epilepsy – and about an incredible challenge she is taking on in support of Epilepsy Ireland later this year….
I was diagnosed with juvenile myoclonic epilepsy when I was 13 years old. Before I was officially diagnosed, I now know that I had been having absence seizures for a few years – they would only last a few seconds and were very easily missed. They would look like I was zoning out, ignoring the people around me and my eyes would flicker & roll. If I was speaking during one, I would begin to mumble. I was completely unaware that these were occurring as I didn't feel anything. It was only when I came back around, and I saw people's confused looks & worry that I felt something was wrong.
I had no idea what epilepsy was when I was first diagnosed, and I knew no one with it either. I felt like I was the odd one out for years even though most people never knew. I found it so difficult to accept that I had it – and at times, I didn't feel like I had it - because it wasn't a visible condition.
After being 4 years seizure-free in my teens, getting my driving license and deluded with the idea I would not have epilepsy in adulthood, everything changed. I began to experience tonic clonic seizures which are the types of seizures that would cause me to fall to the ground, my muscles would stiffen and jerk involuntary. These occurred in the evening & nighttime and especially if I had a particularly stressful or tiresome day. I know many people reading will know just how mentally and physically exhausting these types of seizures can be. I was so heartbroken as I thought I was seeing light at the end of the tunnel with being so many years seizure free and I had also never experienced these types of seizures before this - so it was such scary time.
In the years that followed, I did feel fortunate that I only experienced these types of seizures maybe once or twice a year – but just because they were somewhat infrequent, it didn’t mean the trauma was lessened. They were seizures that often landed me in hospital with a range of seizure related injuries.
However, I am now very pleased to say that following a change of medications, as I write this, I am one year seizure free, back driving and feeling amazing!
Reflecting on that period of my life, epilepsy, for quite some time, took away my independence. I never felt safe by myself. I lived in fear that I could drop and have a seizure anywhere at any time. But, after years of being in denial, embarrassed, uncomfortable with the label of epilepsy and not trusting of myself, I have finally accepted it. Instead of seeing epilepsy as something that limited my life experiences, I took back control and realised it does not limit my whole life. Epilepsy does not define me. I may be living with epilepsy, but I am also just a typical 25-year-old woman.
I have always had a love of sports, and my passion was Gaelic football. However, conscious of managing my condition and the stress and exhaustion which can come with competitive team sports – putting my health and seizure control first, I recently made the difficult decision to step away from the sport. As a result, I have turned my focus to running – which I can manage myself while getting the same buzz of physical activity. Something I’ve realised with epilepsy is that sometimes you must veer course or take a different direction, but it doesn’t mean you can’t keep moving forward.
It took me 12 years to get to where I am today. I am so grateful for my amazing family and friends that have been and continue to be the best support system. I am so thankful to Epilepsy Ireland; they have helped raise awareness of epilepsy and fought our corner for free travel. When I was off the road, I commuted to work, and this measure was such a relief and got rid of a worry for me!
Looking ahead and taking account of my new passion of running– I have a new challenge; I am very fortunate to be running the Dublin City Marathon for Epilepsy Ireland in October – to help raise awareness of epilepsy and to raise funds for EI’s amazing work and support. As I write this, over €1,100 has been donated to my fundraiser – which I am delighted with, but all donations would be appreciated!
Thank you for taking the time to read more about my experiences with epilepsy and for anyone reading who also has the condition and is finding life difficult and unfair – please know that it can get better. My advice is accept the diagnosis as soon as you can and do not let this condition define you. Life is better lived rather than worrying and focusing on the "what ifs" of a seizure occurring.
Be mindful, take care of yourself, take your medication correctly and live your life.
Thank you so much Amy for sharing your reflections on life with epilepsy, which we know will be of help to so many people reading who are also on their journey with the condition. Thank you as well for your incredible support for Epilepsy Ireland by running the Dublin City Marathon – we can’t wait to see your pics from the finish line!
If you would like to donate to Amy’s efforts in support of Epilepsy Ireland, you can do so via her Eventmaster page via the button below:
If you or your loved one need any information or support about epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. Visit the ‘Our Local Service’ page on our website to find details of your local Community Resource Officer.