Apparently I'm so bad at what I do most that it might kill me
So, because of my chronic illnesses it is rather common for me to sleep around 12-19 hours per 24 hour day. It's a bit more than most people, and it is actually rather sucky because it's not like it helps me feel good, it just means I don't end up feeling worse (mostly). What it really means is that I don't often have enough time in my awake part of the day to complete chores, self-care, or projects, especially when I am often driving and attending 3 people's worth of medical visits. Yesterday's visit meant 45 minutes of waiting, another 45 of prep time, and then they told me they couldn't proceed to plan without a pre-authorization. This is often my standard kind of day. So I do my best to keep a book/kindle/phone with me and fully charged to use while I wait.
But back to the sleeping thing. It's what I do most, but apparently I'm really bad at it. According to my new pulmonologist, I stop breathing while I sleep. More than 34 times per hour all night. I'm really bad at it. And the only treatment option is basically an air pressured snorkel. I've tried it. I hated it. I'm not looking forward to trying again. Tummy sleeper + night sweats + anxiety + sleep panic attacks & now they wanna press something tightly on my face that wraps around my head. Claustrophobic much?
So before I head off to do that tonight, I'm venting here, because I'm really fed up with a body that can't body correctly. Everything it tries, it does wrong somehow, or it gave up trying long ago. I'm watching myself progress through symptoms mirroring what happened to my grandfather when he was in his late 70s...except I'm in my early 30s, so it's terrifying, not simply old age.
And thanks to the many stipulations of the bureaucracy of the US government, I get to do all this fun stuff without any chance of escape or vacation or even moderate levels of retail therapy. Most of my money gets earmarked for medical expenses that aren't covered otherwise, oh...and food. How I long for a week to just go somewhere that I don't feel stuck under an overwhelming to do list of cleaning tasks, or can just crank the AC down to what is truly comfortable for me without worrying about overrunning the bill. I wish I could travel and see all the places I have waiting on my bucket list.
But then I remember, I not only don't have the money, but I can't stand for more than 30 minutes without passing out, and I can't afford the wheelchair I'd need to get around safely, and even if I could get the wheelchair, most places aren't wheelchair accessible anyways, so I'd still be stuck. Just stuck somewhere else and paying to be there, and probably wishing I had all my own things that are more comfortable to me.
The end result was that I spent this Juneteenth trying to channel the strength of the nameless great Americans who have trod this path before me: How do you live a life when you do not have a realistic hope of changing your circumstances? What keeps you going when you have nothing, and not even the sweat of your brow can change that? Where do you channel your rage when you see others who have never known that even small joy can be ripped away on the whim of a moment? How do you get what you need when society refuses to admit you exist, and even those you once counted as friends have moved on without looking back for you?
All anyone can truly expect to fall back on is what is already contained inside their body: their education, emotions, ideas, health. Because everything outside that is beyond individual control. At this point, I no longer even possess all of THOSE things, because I no longer have my health, full emotional control, or any direction to my stream of consciousness most of the time (thanks ADHD). Plus, technically I took about 19 years to get high level education in areas that are absolutely useless given my current circumstances, so I've had to start over learning solo about the things I need to survive. I spend loads of time trying to get through medical articles about my conditions, and reports on the intersections of diagnosis, and videos about manageable accommodations I can make without medical interference, and just trying to stay plugged in to the larger disability community to keep abreast of all sorts of politics, discoveries, and suggestions that maybe, possibly, might eventually affect me. If I'd known, I'd have been better off studying disability and human rights history, and maybe a bit more about mechanical engineering, because those would be quite handy now.
Well, as with most of my blog posts, this too has just been a one-take, stream of consciousness dump, but unlike my usual, I don't have a good way to end this one. So if you've read this, and gotten this far, know that I am supremely grateful for you, because you are one of the people who has not forgotten me, has not tried to move on while avoiding direct eye (aka social media posts) contact, who probably still thinks I have something wonderful to give. You're great. I just wish I knew how to get more people to be like you. I wish I truly had a network I can rely on, even if it's just for donuts in our pjs at noon on a Tuesday.
Being disabled and chronically ill is like sitting on a train at a large station; watching things whizz past your window. But then you
realize you're not moving. You're going nowhere. It's just that every train around you is in motion, and they can't stop for you. Whatever way they're going, they won't be coming back to you, because you are stuck sitting with a broken axle. And everything you had on board is now going to be taken off and given to another train because you can't take it anywhere, not even backwards.
Comments
Post a Comment