For the last year or so, I've been experiencing seizure like symptoms that's altered my life more than I ever could have thought.
It started in April 2022. I got up from my computer chair to grab some coffee while at work (I work from home) and suddenly my eyes went blurry and my knees were weak. I made it to the kitchen counter but knew something was going on so I put my cup down and tried to get back to my chair only a few feet away from me.
I didn't make it and fell to the floor. My head had what felt like pressure in it and it had just exploded out of me. I woke up to carpet burn on my forehead and with my head about 3 inches from my computer chair wheels. I always think about how close I was to whacking my head on those sharp ass wheel covers whenever I think about it.
After that first time, I started having what seemed to be seizures regularly. I would be kind of aware of what was going on, but I was locked out of my body as it seized. I'd slur and get really drooly after one and sometimes I'd just be bedridden for a whole day. I had experienced something similar when I was a teen and in my early 20s, but it was sort of brushed off by my doctor at the time. It went away as I grew older so I never thought about it afterwards.
So after months of waiting and anxiety, I finally got tested in an inpatient epilepsy monitoring unit. Basically that means I was strapped to an EEG for 24 hours to monitor my brain activity and catch an episode as it happened to see if it was epilepsy or something else. After a day, the doc came in and said I had Psychogenic Nonepileptic Seizures.
Psychogenic nonepileptic seizure (PNES) involves attacks that resemble epilepsy-related seizures in symptoms and signs, but abnormal electrical activity in your brain doesn’t cause them. Instead, the seizures are a physical reaction to underlying psychological distress.
It's a conversion disorder, meaning my brain has a hard time dealing with extreme stress or anxiety and manifests it physically. It's linked to trauma, personality disorders, and other types of mental issues. I def fall under Trauma and Mental Illness so I wasn't super shocked I was diagnosed with this lmao.
I'm deeply committed to treatment for this. I want to get better. I need to get better. I have a future waiting for me and I want to get there.
This has obviously all been stressful on its own so it feels like it's an ouroboros eating itself. I've missed so much work and the travel to appointments is brutal at times. My partner is so stressed all the time and I feel like a burden with how much she has to dedicate her time to me. I was supposed to get my driver's license when we moved up here, but I can't drive for a year after having a seizure so I'm not doing that anytime soon. We had to move bc I can't make enough money working due to being part time and missing days of work consistently. It just feels like there's more being added onto the plate every month.
I just got out of a meeting with my HR person at work. We talked about how much work I'm missing and how my metrics aren't great and I'm not meeting expectations. There's a lot more going on than just my health at work, but they only see my health issues and want to stick with that. It doesn't matter that everything outside of my health is affecting work.
So my HR person put two options on the table:
I go through the process of filing ADA accommodations. It's a long process where my doctor has to sign off on my ability to work and there's a bunch of paperwork involved and a lot of effort on both sides (me and my work). They made it very obvious they do not want to go down this route.
2. I quit and they can just dust off their hands and move on.
It doesn't really feel like I have a choice at this point. They put a lot of emphasis on how much effort the ADA process is and made quitting more appealing. I know they want to get rid of me and this is them saying "we can get rid of you the easy way or the hard way" since they can't fire me due to health issues legally.
I mean, and they're right. What options do I have? I can't work and it's been proven. I can't. I just can't meet those expectations and I'm taking up a spot for someone who can. I've proved to myself and everyone around me that I literally cannot work in my condition. I've tried and it's just not possible.
The thing that really rubs me is that they have no idea what losing this job means for me. They think I can just leave this job and I'll be able to focus on my health and make the right choices for myself. But really, it completely fucks the plans we made moving up here. I will have to wait for months or even years for disability to kick in, I can't get unemployment after the pandemic bc of complicated reasons, and there's no way I can get another job like this with the flexibility it provided. They see this as the best option when really, it totally destabilizes any security I have in my personal life. I don't have any other options but to keep trying to work.
So much has been taken from me by this fucking medical condition. It's so hard to not be bitter or angry. I had to move in with my in-laws, become financially desperate, and now I've lost my job. I feel like I have nothing of my own left to give at this point. What more could it possibly take? The only thing it hasn't stolen is my relationship and that's the thing I worry most about.
I feel destitute and scared. My entire life has been taken from me in the span of less than a year. It's difficult to describe how hopeless this has left me at times.
So here I am, 10 years later after first experiencing these and I'm in a shockingly similar situation: No job, living with parents, and relying on others for everything. I feel like a fucking loser. I did then, and I feel it now.
But I'm keeping my head up. I have a lot of support and I want to get better. Sarah has been my rock and is the one thing propelling me forward. I can't give up on her. She's put so much effort and love into helping me out on this journey and that just makes me want to push farther every day.
Just send some love my way. I really need it right now. I'm not sure where to go from here but it looks like I'll have to contact Daddy Government again to get on disability. I don't want to have to go through that process, but I feel like it'll be a slam dunk. Hopefully the process isn't dragged on like it is known to.
