It has been just over a year since I have been living with my fiancee, and am not in immediate reach of my mum or dad if I have a medical emergency.
My Fiancee is amazing in a medical emergency. She is calm and good at communicating with me. If I have been having a cluster of seizures, she takes the reins and pops me into bed with my medication. I haven’t always had a fiancee to help me with my seizures though. It takes a lot out of her, and sometimes we find ourselves reeling after a bad seizure. It can affect her stress levels, which in turn, can cause her to get migraines. Sometimes, she sits in the hospital with me for up to 12 hours with me- which I know isn’t fun at all.
When I was about ten years old, my mum thought there was something funny about some body movements I was having, predominantly in my left arm. I was already seeing a neurologist for migraines, but my mum knew something else was up. I remember the moment clear as day, when I was in grade 5 and my mum came to my school. I asked her, jokingly “are we going home?!” She said yes….but actually we were going to the Children’s hospital.
I spent a week in hospital, because I guess my mum had spent some nights up trying to figure out what these were episodes were. I had a bunch of probes stuck on my head, trying to track what my brain activity was. When the probes were all off, I had a giant grand mal seizure and it was determined then that I had epilepsy.
I started to see the same neurologist that I was seeing for migraines. I was put on medication and my seizures only happened maybe a couple of times a year, in my sleep. I never needed to “come out” and tell people about my epilepsy, unless I was doing a water activity. My teacher’s knew, for safety’s sake, but I lived a pretty normal life.
At this time, my family didn’t need to worry about my seizures. My mum came to every single one of my Neurologist’s appointments. They weren’t a worrisome event, as I was stable, and since my neurologist was far away from where we lived, it was a day off from school for me.
When I moved away from home to go to university, my seizures started to affect my family more. With ever changing medications, seizures, and mental health issues, my mum felt helpless at the end of a phone. The concern of my epilepsy spread through all of my family (relatives included) as well as my friends, who I was in direct contact with.
My family encouraged me to take a year off of university, which I was sold on thanks to a bio-wave feedback doctor. His wise words “you can’t rush recovery” spoke to me and I agreed to not go back to school the next semester.
During my time off, my mum continued to go to every single neurology appointment. I was so thankful for that, as I couldn’t remember what happened during a seizure. More than once, I left an appointment crying, not because I wasn’t receiving the best care but because it was becoming more and more apparent that my case of epilepsy was more complex than we had imagined.
My neurologist saw that my case of epilepsy was too complex for him to handle, so he transferred me to the Epilepsy Clinic in the city. It was what I needed, but I cried because even my up and coming neurologist couldn’t be there. My parents, fiancee and friends have been amazing to me, but it affects them to see my injuries, be in hospital, and have the energy to be able to support me. It sometimes messes up my mum and dad’s schedule when I need to go to dire doctor’s appointment’s- such as this week I need a follow up appointment with the dentist and an appointment with Plastic Surgery as I fractured my orbital wall.
Do I have amazing support? Absolutely. Is it taxing? You bet. I am so SO grateful.
Lots of love,
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