(TW: Medical, Surgery, Chronic Illness, Chronic Pain, Medical Trauma, Medical Gaslighting, Internalized Ableism, Ableism, Cancer.)
Wow, okay… so this one is going to be kind of heavy. The same kind of heavy as my last post was. So, even though I have the trigger warnings there, I just want to say that if you can’t handle some seriously heavy topics, click off right now. I mean it, I love you guys, and your mental health and wellbeing matters to me, so if this is something you know or you think is going to trigger you or cause you harm, please don’t even risk it. We can catch up later, on a lighter post. Always put your mental, physical, and emotional wellbeing first. Always. Always. Always.
I guess I’ll start out by telling you that today (yesterday now, at the time of writing this) I found one of my rats had passed away. It’s also the day that I had to drop Grandma off at the hospital to have a tumor cut out of her head, so my mental state was, and is incredibly fragile right now. The kind of fragile where I am sitting upstairs at the kitchen table with my laptop- something I literally never do- at 3:30a.m so I don’t wake or worry Angel. But I just couldn’t lay next to her in bed doomscrolling on TikTok anymore feeling like I was going to peel off my own skin.
Today (yesterday?) has just been a terrible day.
The kind of day where from the second I woke up, despite feeling like garbage, and not getting much sleep, I’ve forced my body into “Go Mode.” Which is generally not a good idea. The way that I like to describe it, thanks to someone that I saw on TikTok in 2020 is that I can temporarily uncrippled myself for short bursts of time in order to get things done that I have to do. During these moments, I can do hard things like… cleaning out the refrigerator, or the freezer, standing up and doing dishes (multiple times) or deal with people and phone calls, ignore sensory overload, and compartmentalize my emotions into their manageable little box where they cannot hurt me. Doing just one of these things is near impossible for me but, yesterday? Yesterday I did them all. Only, with the added strain of having to find a box, and bury my little best friend, on top of having to figure out a half hazard way to do laundry and dry my clothes because for the last 2-weeks our dryer has been broken.
The fiberglass seal shredded and fell out. The company we bought a new one from and paid express shipping for has not delivered the part, or given me the Fedex 2-day tracking and told me via e-mail since the customer service refuses to deal with me over the phone that if I want a PARTIAL refund, my shipping time will take even longer. Longer, when I’ve waited almost two weeks. Longer, when my surgical incisions are severely infected, and I’ve woken up multiple times this week with pus gluing my skin to my shirt but, I can’t cover the damn wounds with tagaderm or anything like that because I’m allergic to medical adhesives, and it will only make things worse.
Thankfully, Grandma is doing okay. I’ve called the hospital a couple times for updates, and they say that she did well. I’m not sure how “well” one can do for literal brain surgery, honestly but, so far there’s no issues with her memory or anything like that. She’s sat up, had water, and she’s on a liquid diet for the next few days. The medical bills will be INSANE, obviously because, when aren’t they? The American healthcare system is in no way free but, that’s just part of life. It’s something I’m kind of thinking about making a GoFundMe for because, it would help our family our tremendously to not have to worry so much about medical bills, and just focus on the healing part of things. I guess I’ll add a link or something on my linktr.ee? Maybe.
I don’t know. I feel a little weird asking for help, even though I know that we could really use it. First my surgery last month on the 14th to get my new spinal cord stimulator (DRG) device, since the old one stopped working and the leads moved. Now, literal brain surgery for Grandma. It kind of adds to how useless I feel? Because at 27-years old most people have jobs, and they go to work every day, and I… don’t. I wish I could because, I honestly miss working, even if it were just doing something like DoorDash or Instacart because, I really liked doing Instacart however, I’m forced to abide by the rules of what I am and am not allowed to do while waiting to try to get on disability.
Another thing that I never thought I’d say. Especially at 27.
I also didn’t think I’d feel disabled at 27. At first, it was something I could kind of joke about. Like “oh, yeah, hahaha, cripple” <insert dark humor as a terrible coping mechanism here> but the truth behind it feels like a literal punch in the guts, guys. My anxiety is getting worse, especially when it comes to things like going out, leaving my house, and going to the store. It’s very, very rare that I actually get to walk in stores right now. Angel almost always insists on putting me in one of the Caroline’s Carts, wheelchairs, or on one of the ride around shopping carts because it’s just that bad. My ankle is either rolling and giving out, or my hip is popping out of place, the dizziness is insane.
Speaking of insane- the amount of dirty looks I get. Oh my God.
I don’t even know where to start with that one, or whether or not I should just make a whole post about it. But, to sum it up lightly, I get glared at, stared at, and whispered about daily when I go out to stores. (Obviously I don’t mean I go out to stores daily, that would be mental, physical, and emotional self-harm.) I just mean that when I do, I can fully expect the looks, the glares, and the whispers. Some people probably think I’m just some “dumb kid” with her friend, taking up one of the accessible shopping aids. That I don’t need it because, I look fine, and so we shouldn’t be “playing” with it. Because, yes, sometimes, we’re laughing and smiling, and making the best out of a shitty situation. However, that doesn’t make me any less disabled.
Invisible disabilities are still disabilities. Even on good days. Even on the days where my pain isn’t quite so all-consuming, and I can actually make it a little while without help.
Speaking of insane, maybe I should mention my high blood pressure.
It got to the point where I went to the doctor last week, and they wanted to talk about putting me on blood pressure meds, until they looked further in my chart and saw that I need to be tested for POTS. Because they’re worried that the blood pressure medication will make my dizziness, and therein the falling even worse than it already is. I really didn’t know that there could even be a worse though. I’m at the point where 9/10 I will stand up and the whole world starts spinning, and it doesn’t matter if I get up too quick, or too slowly. Just the effort of standing up, sitting up, or adjusting position sitting down in a chair most times adds to my dizziness and discomfort. Sometimes, this comes with rapid, irregular heartbeats, nausea, and on occasion vomiting.
Liquid IV packets, for that reason, are a complete and utter life changer. Which is why you will always, and I do mean always, see me carrying around my Coldest water bottle. By far, it’s the best water bottle that I’ve ever owned. Right now, I’ve got the Galaxy Purple bottle with the straw lid that holds 40oz. Someday, I would love to get a bigger one, or one in the Astro Purple because, they are just so pretty, the straws are so nice, and it keeps my drinks glacier cold forever. Currently, I have Tropical Punch in my bottle, sitting next to me as I type this. Because, you know, on the list of “Chronically Ill Must-Haves” one of my most prevalent answers will always be the emotional support water bottle with what my little brother lovingly calls my “salt packets.”
The extra electrolytes and hydration help a bit with the chronic dehydration, headaches, and a little bit with the dizziness or so I’ve noticed. Because, if I’m well hydrated (or as well hydrated as I can be) my symptoms seem a little bit less severe. Not perfect, unfortunately but, anything is better than nothing sometimes. Little wins are still wins, even when they don’t feel like it.
So, even though I know that I’m doing the best that I possibly can with the tools that I’ve been given… it doesn’t really feel like it. And I don’t know if it’s ever going to feel like it. Especially when there are comments from people out there- some online, and some in my daily life like “I would love to sit at home and do nothing all the time.” Well, yeah… me too. But that’s not my reality. My reality involves me fighting through pain, nausea, and a whole lot else just to function. Or the comment that my older brother made to me the last time I saw him in person when he saw my brand-new-to-me wheelchair, and the shower chair we’d gotten to make my life easier sitting in the garage before it was cleaned, sanitized, ans put away.
“I should just rent you your own floor at the hospital; so that when you croak there’s less shit for me to carry out of the house.” A direct quote from 9/23/2022. Was it meant to be a harmless joke? I don’t know. Did he mean to hurt my feelings? Who knows. But did the words play over and over in my head that night as I lay in bed, to the point where I physically snuck over to my desk to write them down just to try to get them out of my head? Yes.
Yes. Yes. Yes. Yes. Yes.
“When you croak” are three words that I don’t think I’ll be getting over or out of my head anytime soon because, I’m only 27-years old. I don’t want to die yet or think about dying yet. Just like I didn’t want him to know that the chairs were in the garage because I already feel… ick about them as it is. Which is something that I have a whole post written out on already, and I’ve been keeping to the side, in hopes that my feelings on the matter would change. Because even though it’s a really nice wheelchair, and the lady who gave it to us was super sweet, I still feel icky about it.
But maybe that’s normal. Maybe it’s normal to feel icky and mourn the healthy person that you should’ve been. The person that you wanted to be with hopes and dreams, and aspirations… a lot of which have to be put on the backburner now due to my health. Could that all be part of some internalized ableism that I’ve been holding onto? Maybe but… right now, that’s just how I feel, and it’s something that I have to learn to fucking live with because, I don’t plan to roll over and die anytime soon.
Fuck. Angel woke up, and came looking for me. Now she’s laying on the couch saying that she’s “on strike” until I come back to bed. I just hope the Zofran will keep the nausea at bay. As much as I love this girl, she knows how to drive me crazy sometimes. Just because I can’t sleep doesn’t mean she doesn’t deserve to sleep. This girl deserves the world for putting up with me.
Thank you for listening.
-Sky.
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