(TW: Venting, Medical, Mental Health, Mentions of Suicide)
Alrighty then- so apparently, we’re doing this.
I’ve got quite a bit to unpack here, and I honestly don’t know where, or how I want to start. So, if this comes off as scrambled, ramble-y, and whatnot, I’m sorry. Especially because, I didn’t really plan to make a post like this, or say literally any of this out-loud, until I saw a ridiculously relatable post on Facebook in one of the EDS support groups that I’m part of, and it made me stop and say, “You know what? Why the hell not?” Because, honestly, that’s kind of what this blog is for, right?
This is a place for me to come and talk about my writing, my daily life, and sometimes, vent about all of the crap that I’m going through. The crap that I shouldn’t have to go through because… I should have the luxury of having a body that works normally, effectively, and does what it’s supposed to do. But I don’t. So, if you’re new here, hi, and welcome; I’m sorry that you’ve stepped right into the circus that is my life. If you’ve been with me for awhile now, thank you for your constant support, even if you’re a lurker who doesn’t really engage much, or say a whole lot. You’re all very, very important to me.
If you can’t tell from the title, Taylor Swift came out with her brand-new album, “Midnights” last weekend, and “Anti-Hero” has quickly become my favorite song. I relate way, way too much, and I don’t think Ms. Swift has any right to hurt my feelings this way by being so relatable. Because I’m slowly becoming more accepting of the realization that I’m the problem.
Just a quick bit of backstory for you on the blog- I started this on May 18th, 2020, as a way for me to just kind of… cope with everything going on in the world. By May, Covid-19 had completely ravaged the world, shutting down my job in a gambling café, and my best friend was quite literally stuck here in the USA due to border closures. My mom had also passed away after a long battle with cancer on March 15th, 2020, so to say that I needed some kind of outlet for my feeling is an understatement. You will see some posts before that, however, due to having recently attached my Tumblr to this blog.
(Yes, I still use Tumblr even though it’s almost 2023.)
I didn’t really post much at first. I was grieving, and learning to navigate the new world we lived in. But it wasn’t all bad. Yes, there was a global panini going on but, it also gave me the opportunity to explore aspects of myself that I’d never gotten a chance to truly embrace before. On the 4th of July that year, we had a cookout, we bought a bunch of fireworks, and honored my mom in the only way we knew how- doing something she loved. We played Pokémon Go… a lot. We also went apple picking, watched a ton of Lucifer on Netflix… and unfortunately on August 21st, 2020, I fell down the stairs, which forever changed my life. If you want to know more about that, I’ll leave the initial article linked right here. From there, it’s fairly easy to follow my diagnosis from misdiagnosis to multiple hairline fractures, chronic regional pain syndrome (CRPS), and now to Ehlers Danlos Syndrome (EDS.) If that’s not enough, then I’m also waiting for results on a test to determine whether or not I have Mast Cell Activation Syndrome (MCAS.)
But that’s kind of the problem, honestly.
I have so many fucking medical problems, and they’re quite literally ruining my life. Before I fell down the stairs, I was a workaholic. If my boss said jump, I would jump. Someone would call off, or need to leave early, and I would be there. The heat went out, and I sat there in freezing temperatures, mid-winter to keep the shop open, multiple times. I sat there in the blistering heat when the AC went out, multiple times. I’ve sat there in excruciating pain, waiting for my shift to end so I could go to the hospital because no one would come in, and the boss wouldn’t let me leave. And I’ve sat there the literal day after having my gallbladder removed because someone called off. I even sat there the day after having sympathetic nerve blocks, and the legitimate day after having my first major spinal surgery in order to place the first Abbott Spinal Cord Stimulator/ Neurostimulator despite telling her I was having a major spinal surgery and could not work. I also sat there until almost 1am when the door quite literally RUSTED OFF (and I do have pictures.) I sat there when the shutdowns were lifted, and everyone was complaining about having to wear masks and social distancing. I got verbally abused at that job Every. Single. Day. for almost 5-years… and when my health got really bad, my boss who claimed to “care about me” came up with a bullshit excuse to fire me.
Eventually, I know though, that I would’ve had to stop working on my own because my symptoms are consistently getting worse. I can’t get up anymore without feeling extremely faint and lightheaded. Most of the time when I go out, I have to have my walker with me, or I have to end up riding on one of the wheelchairs in the grocery stores, so I don’t risk falling down and hurting myself even further and that’s just… dehumanizing? I feel like I should be able to do so many things that I could do before, even if they were difficult, only now these things feel practically impossible for me. I just don’t know what to do, and I wish I did.
Currently, I’m in the battle for disability benefits- and I do mean battle because… if you didn’t know, it takes literally forever to qualify and be approved to get disability benefits in the USA. As of today, they are 49% of the way through my application, which was started in July of this year, and while I should feel lucky because I know that most people are left waiting 18-24 months if not longer… this waiting game is incredibly hard. Especially because I’m not allowed to work during the application process, and even if I did feel well enough to do something like driving for Uber (even though my joints can’t handle being in a car that long) or shopping for Instacart (even though I cannot lift over 5lb or walk unassisted right now) or literally any other “work on-demand” jobs… I cannot.
It’s frustrating that if I were to work right now- not taking my health into account here, which wouldn’t allow it anyways- that they would deny my disability application instantly. Because they do not care that I cannot walk unassisted. They don’t care that my bills are piling up, or that I cannot afford to pay them. They do not care that my grandma, who has cancer, is currently paying everything unassisted because I am not working, and I am not allowed to work, meaning that I cannot help. It also doesn’t matter that I wish I could be working right now because, I loved working, and now I just feel useless.
I feel like I’m the problem, and that maybe, sometimes, everyone might just be better off if one of my chronic conditions made it so that I just… didn’t wake up one day? -I’m not suicidal. I don’t actually want to die, I just want to stop feeling like this, and maybe feel better for once. Because I cannot keep waking up in the morning, no matter how much I sleep feeling like garbage, again. I don’t sleep much, and if I do, I still wake up feeling unrested. I’m constantly too hot, too cold, nauseated, or riddled with hundreds of other symptoms that I just don’t know how to deal with… On top of that, I’m tasked with mourning the person that I wanted to be, and all of the dreams that I used to have that are no longer possibilities; the “healthy” version of me, that I’m quickly coming to realize never really existed. I have no idea how to tell you how hard that is…
I made a GoFundMe and a GiveSendGo if anyone wants to try to help us with bills and whatnot but, of course, you should never feel pressured to give unless you’re in a place where you feel comfortable, and able to do so. Thank you for listening, as always.
-Sky
https://www.givesendgo.com/G9EH7
Skyla N. Lambert
Author | Blogger | Bookworm | The Problem
E. skylanarissalambert@gmail.com
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