What is your epilepsy story?
My first tonic clonic seizure was in 2011. However, I wasn’t diagnosed with epilepsy until 2012. I went a few months without any after that, but after a series of tonic clonic seizures came out of nowhere later on, my diagnosis of epilepsy was acknowledged and confirmed. After being diagnosed, it took a bit to get a grasp on things, and set a routine. I had to learn what my triggers were, and what medications worked, and when to use my rescue meds. One of the biggest key experiences was having to learn that I was not (and am not) alone in this journey. It was easy for me to feel isolated. Another key part was having my friends and family and this journey, as they too had to learn about epilepsy, as some of them did not have any type of awareness of this disorder/diagnoses. So, we all had to learn and adjust together!
What are your hobbies?
My hobbies include, boxing, playing and writing music, video gaming, and anything technology, space, and science related. Huge nerd here!
Read about: Video games and seizure safety
Tell us about your support network?
I am surrounded by support! I have my mother, and best friends. Oh and looking for a dog companion. They have helped me tremendously with my epilepsy! From first aid, to driving me around to and from places. My friends have especially helped me out whilst working. Working has been a huge challenge for me. Trying to make an action plan, and have steps in place for when I have a seizure, took some adjusting, for me and others, to get used to. My friends stepped in and made it easier. They knew my situation, volunteered to assist me with first aid and safety in the workplace, and helped in making an action plan.
Read more: How to find epilepsy support groups?
What has your experience with Epsy been like?
I downloaded Epsy about a year ago, as I was trying to find a way to accurately log my seizures, and keep track of my medications. Epsy has allowed me to stay on top of my medications, with medication reminders and logging. I also LOVE that I can log my doctors’ appointments and put my medical team in the app with contact information as well. It has made things easier, as I can put everything pertaining to my epilepsy in one spot. If others are like me, they might find the medication logging and reminders VERY helpful. I’m on multiple medications, and this has been extremely beneficial for me, and I know it will be for others!
What’s your main message to those with epilepsy?
You are NOT alone, no matter how it may feel. Don’t be embarrassed, and know that people love and are concerned for you, and want to help. Don’t be afraid to ask for help, when you know you need it! My top tip is log EVERYTHING. A side effect, sleep, menstrual cycles, moods, life events, travel etc. This has helped me to find out what some of my common triggers are, based on patterns. Some triggers were surprising, but knowledge is power.
Learn more: What are some common seizure triggers?
