Finding out you have a disease at 19 years old, teaches you a lot about how to take care of yourself in many aspects. Physically and mentally, I had to figure out how to manage the two. Here I am still learning new things as time goes on. I just want to share my unique experiences, hoping some can relate or have an understanding of different things that come with having epilepsy.
I am so thankful to be here and living the life I am. There are things I feel that I don't deserve and it plays a huge role in the mentality of dealing with epilepsy. Mind you, there are a lot of positives and normal days and things are improving greatly!
Clearly 2020 has been a shit show and my year was included in that shit. There was a lot of stress that I went through most of the year and I didn't acknowledge most of it. Never did I say out loud that I felt stressed but my body was definitely me that. Diagnosed at 19, my neurologist said I have a child form of epilepsy that most people grow out of. Considering my age, he doesn't think I will grow out of it. I also have no idea what caused it. Thankfully no tumors, no serious head injuries, but it left a mystery that I still haven't figure out.
This year, my health was greatly tested. I learned two things that trigger seizures no matter the size. I've known for a couple years that my sleep plays a huge roll in my epilepsy. I was told by my doctor that I need nine hours of sleep a night. I experienced this to be real as fuck as this years activities created a lot of issues based on my sleep. So now I get to be the old gal that sleeps in until 10:00 a.m. or is forced to hit the hay at 8 p.m.
Honestly, I'm not that mad about it. I fucking love sleeping, but here's a few situations that I have to adjust to because of it. I don't always get to start my day early especially being a night owl, making sure to go to bed a decent time is important which can be no fun sometimes. In the last couple years I also realized a night of drinking is not a good idea. I miss having a good time but I never sleep good after partying, I always wake up at 7-8 a.m. after staying up until 1 a.m. With that being said, under seven and a half hours of sleep, I am instantly met with absence seizures when I wake up. These are annoying as fuck too. I lose consciousness for about 10 seconds which takes me another 10 seconds to figure out what I just did after coming to. Therefore, I don't get drunk that often but which saves me less seizures and shitty hangovers. Also, I'm still a good ass time when I'm sober.
There is more than just a regular nights sleep that I have to consider and never realized before. Sleeping on a plane with an early ass flight schedule when travelling. Sleeping at someone else's place, having an unexpected early morning. And simply from having those nights where you just can't fall asleep.
Recently I experienced a morning with a few absence seizures. As I was locking my front door, I had one and when I came to, I wasn't sure if it was my apartment I was locking or if I was trying to unlock someone else's door. It was pretty freaky. This occurred while having enough sleep and missing no medication. Why did this happen? I have no clue.
No matter the size of the seizure, every time I have one, my brain gets a little fucked up. Obviously the worst seizures, the more damage. When I have one, there is an electrical storm occurring in my brain. From the major seizures I have had (going on six years free!) and the small ones, I have a lot of memory loss. That's one of the most frustrating side effects I deal with. I was so nervous for college but I did good enough to graduate! It still gives me concerns for future dream jobs, whether my brain can keep up. Being greatly dependent on my meds makes me realize I have no idea if this will improve and prepares me for the worst. But life plans and everyday situations are pretty normal, feeling like I have nothing to worry about.
The biggest trigger I came to realize over this past year, was stress. I graduated college and two months later COVID hit and I lost my job as I was already searching for a career. After looking for an official "big girl job", I had an offer and was super excited to finally start a career! The next week I was told they were unable to hire me with the loss of a lot of business. This led me to take the first job I could find before I would dip into my savings to help with bills. I worked nights, 5 p.m. to 3 a.m. My sleep was officially jacked up AND I was stressed because it was a shitty situation all around. I had to work but kept my eyes out for other jobs. As I lived in CO at the time, I moved back to MN and was able to transfer and keep my job. But I was having big life changes. I had to move out of state (with help of my wonderful family) and find an apartment on my own now without a roommate. The move, the shitty job and rent took half my savings to get my shit together.
I can't tell you how annoyed I was. Little did I know, it played a huge affect with my epilepsy. I was having absence seizures more often throughout the week. A lot of headaches and migraines. At one point I had 4 of them in a week, or one continuous migraine? I had to call into work which led to a smaller paycheck when I could barely keep up with my bills to begin with. I fucking tell ya, all of this stress definitely caused issues with my health. This shit was frustrating and I increased my medication twice in six months which was the last thing I wanted. Clearly, I have learned how dependent my brain is on medication.
I expected to find a new job shortly after moving home, but was stressed after it took four months to finally find a job. It's one I can stick with until I find the job I want. Although my health is great, I will always have unexpected scares. Life happens and you can't always control things. There are days where I just don't get enough sleep or a week or two that comes up pretty stressful, giving me headaches and no motivation.
I feel that every day I learn more and more about living with epilepsy. How little sleep and stressors become serious triggers. On most days, I don't experience anything related to my epilepsy and things seem normal. But things happen and I learn to work with unexpected and unknown. Currently I am thriving, loving my independence and waiting to start enjoying public activities again!!
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