Throughout the month of August, I'll be recording any health flare ups that I remember to share. I'm considering making a personal narcolepsy guide for this blog - not everyone knows about the symptoms I experience and exactly what they are. I would love for that kind of info to be in an easily reachable place... maybe I can link that guide on every month's health log? Should I make the guide within the blog or put it somewhere else on the site? Hmmm...

8/3 - Took at least three naps today. There was a work laptop update that took forever and I was able to squeeze those naps in without having to worry about missing anything. Last night I was awake for about an hour and a half, and woke up several other times in the night. The insomnia is still bad.

8/6 - Today I really wanted to work on my portfolio page, but my brain wasn't having it. I need to watch tutorials about how to code certain things and on some days, my narcolepsy stops me from being able to learn anything. If I start using my brain to learn, I'll get thrown into a yawning fit and heavily struggle to lift my eyes and stay awake. You can imagine how bad I struggled with that in college! Today though it just means that I need to try making something else. I think I'll make a couple junk journal pages.

As someone who has worked in a variety of workplaces, the thing that always follows me is a concern for how my disability is perceived. When I experience flare ups, I must find a safe space to take a nap as soon as possible. Needing to move somewhere else to fall asleep is a safety risk to myself. So I myself can never be fucked to worry about what other people are going to think. My first priority can only be my health and safety! And YET. That has never stopped my employers from trying to project their own concerns of perception onto me.

“What will people think when they see you asleep at your desk?”

“It really doesn’t look good when you’re asleep at your desk.”

“You need to move somewhere else so that no one sees you asleep at your desk.”

Everytime I hear this, I want to EXPLODE. I’m sure other disabled people deal with the same problem as me. It genuinely can’t be any of my business what other people think when I have an episode. I shouldn’t have to feel like I have to disclose my condition to every single person in a workplace, even if I barely know their name. I do believe that this sentiment is driven by a desire for professionalism, and that idea has proven again and again to be anti-human.

All of the worst parts of our society exercise power through professionalism. Policies have been proven over and over to be racist, misogynistic, ableist, etc etc, all in the name of professionalism. You can’t wear your hair like that, you can’t eat that kind of food here, you can’t be yourself here, you can’t safely have flare ups at your desk here. The little things can feel crushing when you experience them over and over again. These kinds of ideas prove that there is still so much work to be done when it comes to designing a world that embraces people for all their differences.

I understand that professionalism can have its purpose in certain places of employment. I think it can be good to have some regulations for dress code depending on who you’re working with. But when it comes to things that are kind of inherent to who a person is, such as their hair type, health, or culture, employers should understand who they are hiring for that job and take that into consideration.

I just want supervisors and people in charge to THINK about why they ask people to not do something. Another thing I’ve gotten scolded for at almost every job is keeping my hands busy during a meeting. That can mean crocheting, drawing, or some other quiet non-disruptive action. My ADHD goes hand in hand with my narcolepsy. Often if I don’t keep my hands busy during a meeting, that leaves me prone to falling asleep which is often frowned upon much more. I think it’s quite absurd to need to explain that to everyone in a meeting, so I don’t. Do I really need to ask my doctor to include an accommodation for that kind of thing?? Or maybe we should just teach our supervisors to not assume wild things based on their own biases when they see someone neurodivergent doing neurodivergent things.

I attended a meeting at my place of work that was about being neurodivergent in the workplace. Almost 100 people attended. I’m really happy that I’m not alone in the struggles I’ve faced just trying to be mindful of my own health in the workplace. And I am hopeful that good change can happen. But I do fear that for many reasons it is just going to take a long time. The best thing that we can do right now is just learn how to advocate for ourselves in the workplace.

It’s my first blog post!! Hello!! I am so very happy to be making my first post :) This is a big step in my journey to carve my own comfy corner of the internet for myself. There’s SO MUCH that happens in my life these days, so I will just start with this weekend.

Today is a Sunday and I really just spent the whole day lazing around. I played this really cool detective game called The Incident At Galley House. It’s a game where you have to input codes based on Time-Place-People to unlock scenes. And then you have to infer what scenes are available to you based on the conversations happening. The story is wild. I’m excited to finish it tomorrow. Thanks Gab Smolders for showing off this new game!

Yesterday I did laundry. Laundry is suuuuch a chore for me because I don’t drive and the machines in my apartment building are terrible. I have to go to the laundromat to wash my clothes to my liking, and I procrastinate heavily each time. After laundry I went to a very fun board game birthday party at a brewery. It was with a newer group of friends, including a bunch of straight men which is a little out of my comfort zone LOL. They were all very nice to me!! There are also a lot of couples which is newer to me. I don’t have many friends in relationships but at least half of the people there were in one. I had a very fun time and I hope they invite me to play games with them again!

I’ve had a respiratory infection since that terrible air day and I hope it leaves my lungs soon. I want my voice back!! And I’ve been so lazy recently which I don’t like, especially while we have warm weather. I want to go for walks and read a book this week.

I’ve got things coming up and I’m a YAPPER so I’m sure I’ll make another blog post soon. Hooray for making great website progress! Yippee!!

Here's my first health blog entry! Here's the way I want this to work: I'll make a health section for each month and update it as the month progresses. I would love to log my health in a way that's helpful for me but also offers a way for people to see how narcolepsy can affect someone on a day-to-day basis.

7/26 - Took one nap today at 6pm. Had a little bit of cataplexy afterwards but not terrible. I need to pick up more meds this week.

7/29 - I felt soooo tired this morning. Didn't feel normal until about 10:30am. My meds have been giving me real bad insomnia and I think I played NYT connections from 2am-3am last night.