For our biggest fundraising day of the year, Purple Day®, Wayne has shared his experience of using the services of Epilepsy Ireland following his diagnosis with epilepsy to help encourage donations to continue our work...
When I had my first two seizures, they were on the same day – so I went from being a person that had never heard of epilepsy or witnessed a seizure to being told “you have epilepsy”.
This left me feeling lost and alone as I hadn’t been given much information other than the fact that I had epilepsy. That was until I found Epilepsy Ireland.
When I first got in touch with my local Community Resource Officer, I wasn’t sure what was going on and mentally, I wasn’t in a great place. Step up my CRO! They were there with all the support and information that me and my family really needed at that point in my journey. They were there when I wasn’t feeling great. They were there if I had any questions about the “living with” aspect of epilepsy and to provide advice and guidance on this new part of my life. They were there to deliver information on seizure first aid to family members and friends.
I had played football from an early age, and it was a big part of my life when diagnosed. Being unable to drive after my diagnosis, it meant relying on friends to get lifts to training and matches – which I found very difficult and outside of this, I did not really interact with many and felt it was a better choice instead of annoying people for lifts. I knew people would say yes but then it was a case of not wanting to take things for granted so keeping myself at home was an easy choice at the time – leading to a sense of isolation. Over time, thanks the continued support of my CRO and because of the confidence and belief that they filled me with, it became easier to ask for help and get back out and about.
My Community Resource Officer also encouraged me to attend Epilepsy Ireland’s National & Regional Support Group Session. Here, I was introduced to others living with epilepsy and I further realised that we are just normal people, whether we have epilepsy or not. I have made so many connections from these group sessions and I am still in contact with people I met through Epilepsy Ireland to this day. I would advise anyone who may be newly diagnosed with epilepsy or who has been living with epilepsy for years to attend.
My contact with Epilepsy Ireland wasn’t all one way either – when my Community Resource Officer had a free minute or two, she would check in to see how I was doing and make me feel like a normal human being. The outcome of every interaction I had with my CRO left me with a smile on my face and reminded me that I wasn’t alone on my journey with epilepsy. Without my CRO being alongside me in those earlier, darker days after my diagnosis with epilepsy, I wouldn’t be where I am today, and I will be forever thankful for that.
My journey with epilepsy is far from over and it occasionally takes unwanted diversions from the main road. Despite this, I know that my local CRO will be there for me to help give me the support and information that I need to recognise that I can keep moving forward in my journey and that epilepsy doesn’t change who I am or what I want to achieve in life.
Thank you so much Wayne for sharing your experience of Epilepsy Ireland to help encourage donations. To make a vital donation to support the work of Epilepsy Ireland and our continued journey towards a society where no person's life is limited by epilepsy, click the button below.
If you need any support or information on your or your loved one's journey with epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the 'Our Local Service' section of our website.