To raise funds for Epilepsy Ireland as part of our biggest fundraising day of the year, Purple Day®️, Epilepsy Ireland volunteer Jessica Glynn and her family and friends have decided to take on a series of walks and hikes in Dublin across March to raise funds for EI and awareness of epilepsy.
Jessica has shared her story of life with epilepsy as part of her challenge, which you can read in full below.
I had my first ever tonic clonic seizure in September 2017. I was at home, and I was just after feeding my daughter, who was five months old at the time.
There were numerous tests done but it wasn’t until January 2018 when I was officially diagnosed with epilepsy – after having a seizure in my sleep. An EEG showed that I had generalised onset seizures and focal onset seizures. After the diagnosis, things were working quite well – the right medication was identified for me and I was back to living a normal life in what felt like a relatively quickly time.
Unfortunately, this all changed in 2021 when the seizures began to reappear. I had a lot of absent seizures, which then progressed further to full tonic-clonic seizures. We were back to the drawing board in trying to find a medication that worked, and unfortunately as many people with epilepsy will know, this was a trial-and-error approach – and a lot of the medications came with side effects which did not agree with me.
The year just gone by (2024) has probably been the worst to date in my journey with epilepsy. I’m more conscious than ever about epilepsy impacting my daughter’s life. She’s only seven and already she knows how to respond to a seizure – expertly telling everyone about Time, Safe, Stay. As a parent, it was hard not to feel a sense of guilt as I am the one who is supposed to protect my daughter, but she has been the one to protect me on so many occasions. I felt like there was no help there for her.
Every time I had a seizure; I asked, why me? What did I do so wrong? What I now know is that I hadn’t accepted epilepsy as part of me - I feared epilepsy and everything that came with it. I stopped doing things I liked – such as walking - because there was fear of what would happen if I pushed myself too far and have a seizure.
It wasn’t until I got in touch with Epilepsy Ireland that I realised help is available – not only for me, but for my daughter Matilda too. They have so much available – and for Matilda they had books, poems and stories that made it easier to explain about this part of me.
I’ve learned to understand with time, that epilepsy is part of me and that I need to learn with it – and while I have to make adjustments in my life, I do not have to let epilepsy dictate my life. That’s why I’m back walking – and to help raise awareness of epilepsy and Epilepsy Ireland, I’ve decided to March through March for Purple Day®️!
I’m gathering my friends and family together and we’re lacing up our walking shoes and building up our steps across the month. We’ll be wearing our EI Tees when out and about so be sure to say hello if you see us hiking around the Dublin area! Any support you can give to our fundraising efforts for Epilepsy Ireland would be greatly appreciated by donating on our iDonate page.
Looking beyond the March through March, my hope for 2025 is that I’ll become seizure free and that we find the right medication for my epilepsy and for the unknow known of epilepsy to be removed from Matilda’s life.
I’d like the public to learn that epilepsy can come at any stage of life – as I know all too well. For those that have been recently diagnosed or who will unfortunately be diagnosed in the future – try not to fear it – because from my personal experience, it only makes thing worse. You are not alone and there is help out there – be it through Epilepsy Ireland or through your family and friends. Take time to speak to them and get in touch with Epilepsy Ireland for further information and support.
I hope everyone has someone as incredible as my Matilda alongside them to support them in their journeys – I couldn’t be prouder of her.
Thank you for reading and I hope my story was of help to someone reading. If you can, any donation to our series of hikes would be very much appreciated!
Thank you, Jessica, for your support and we look forward to seeing your pics across the month. If you would like to support Jessica’s efforts by making a vital donation, you can do so via her iDonate page below:
If you have been inspired by Jessica’s efforts to raise funds for Epilepsy Ireland this Purple Day®️, you can find out more about you can help support our fundraising efforts by visiting the Purple Day®️ page on our website – or by signing up to take on our 24-Hour Squat challenge. Find out more about this by visiting our Funraisin platform.
If you or your loved one need any support or information regarding epilepsy, regardless of what stage you are at on your respective journeys with epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. You can find their details by visiting the 'Our Local Services' section of our website.