God. The idea that I ever had the core strength to do things like Mayurasana or Sirsa Padasana pose is wild. It's just so far removed from my current daily existence where I struggle to pull myself upright in bed and just recently strained my Achilles tendon by stepping funny.
Chronic illness is such a bitch 😂
I was gonna say ‘shout out to all the people with ‘gross’ chronic health problems who are never going to see themselves in fiction in a positive light because there’s no way to make sitting on the loo for four hours glamorous’ and then realised I’m an author and not a coward so
Which of my beloved OCs should receive my debilitating digestive problems?
Why does Twitter have to start disability wank on very talented Viktor fan artist pages when they aren’t actually being ableist?
Like….babes. Honey. Sweetheart. I’m physically disabled. I have hyper mobile Ehlers Danlos literally my joints dislocate in my goddamn sleep; I have to use a cane daily and a wheelchair for anything more than ten minutes of walking. Please don’t assume I can’t spot ableism or I’m talking out of my ass and leave these lovely talented artists alone and put that energy towards doing shit for disabled people in your actual life.
For instance did you know it’s not a legal requirement of the ADA for doors in public spaces (such as restroom doors, doors in shops etc) to automatically open or have a button to press for those who use mobility aids? Have you fucking tried to get into the goddamn bathroom propelling yourself and holding the door open at the same time?
Did you know that disabled people are the most underemployed of all marginalized groups because we’re kept in forced poverty due to laws around medical coverage? That we don’t have marriage equality in the year of our lord 2022?
How about putting some of that energy towards those issues instead of getting pressed about a fan art?
Me: Wow, I really feel like shit today. I am so weak and dizzy and I feel like I am so short of breath. I was feeling great a few days ago, what happened?
Okay, coming down from the high that is being able to breathe and clean at the same time while only feeling moderately ill, and I would just like to say two things:
1. Is this what it’s like for other people? It’s still hard but, my god, I don’t have to spend half my brain on monitoring if I need to stop before I can’t breathe, and I’m not nearly as fatigued due to less exposure to chemical irritants.
2. To everyone who has ever given me shit for struggling with housework: I can finally operate a vacuum w/o wheezing in under five minutes for the first time in my life, so you’d best keep your face out of range. :)
I have two fest fics due in the next month and two wips I could be working on, but instead I'm thinking about what chronic illness(es) I'd give Remus in a no-magic/werewolves AU that I'll never write.
Currently leaning towards lupus or Lyme, both on the basis of symptoms and the inherent irony.
Today I realized why I hold onto broken things:
Jewelry, furniture, collectibles, people.
I have been a broken thing
With my heart ripped open
A body that defies
Constantly adrift from poisoned thoughts
Racing through my mind.
I hold on to broken things
Because I am a broken thing.
Granted, I’m more put together than before
And no longer allowing anyone through my door
But I am still broken in places down to the core.
Maybe I was hoping by keeping broken things
That that someone would make the choice
To keep me.
Being chronically ill is a full time job. Without pay or sick days (when you get extra illnesses on top, you just have to deal with your normal job as well). If i say I can’t manage to do something for you, it’s not a case of ”oh, it must be nice to laze about in bed all day and not do anything,” it's a case that i am doing my full time job and i can’t manage to do something else on top.
being chronically ill sucks enough without dealing with ableds’ awful takes on it.
This may be a weird question, idk who else to ask. I found out I have EDS a couple years ago. I'm trying to find surgeons for a couple different procedures and so far nobody has even heard of EDS, much less knowing how to suture my skin so I can heal properly. Google is unhelpful, my insurance is unhelpful. People keep telling me "oh but that's SO RARE, how do you even know you have it?" (Check out this giant bruise and my jaw that can pop out of place.) Every search comes back "surgery to cure EDS?" And I know that's not how it works; EDS is about collagen in connective tissue, surgery won't do shit for that. How do I find a doctor that knows EDS? What specialty do I search for? Sorry to put this in your ask box. I'm just so tired of trying to manage this on my own with no help
Hey friend, I’m sorry you’re having such a hard time. I’m on mobile with sketchy signal, so I can’t link to it right now, but the Ehlers Danlos Society (problematic individuals on the board aside) has a global physicians directory for patients to try and find an EDS knowledgeable doctor.
Otherwise I’d try looking for EDS groups on Facebook and Reddit where us fellow zebras often swap physician recs because, yeah, there are so few EDS knowledgeable doctors l, especially depending on where you are in the world.
Best of luck and I hope this posts and maybe some others will have some helpful advice 🦓💖
y’know what??? I don’t often say this, but shout out to my knees
almost fainted this morning... felt them buckling... everything was swirling....
But somehow I managed to lock those fuckers out and squeeze my quads like a champ and forcibly pump blood back up to my head by sheer power of THIGHS so like
for once they’re the real MVknees
I just got back from the ER because my body apparently decided that normal UTIs are for wimps and we had to be EXTRA about it. Scaring the crap out of all of us, because bladders should not do that. At 3am.
But as I lie here in the dark, now going on 5 am, trying to ignore my lizard brain which is insisting that we should totally move into the toilet permanently, my mind wanders familiar paths.
Every now and then, usually at inhuman hours when I'm going through it yet again, I think about making a side blog or something of just how many ways my body screws up. People don't generally believe me when I say I go from one thing to the next. Sometimes even doubling or tripling up on things. Rarely if ever a break in between. They think it's hyperbole, or being dramatic, or even just faking it. I wish. Would be a lot easier. So sometimes I just want to write it all down.
To get it off my chest. To prove I'm not imagining or exaggerating. To reassure myself I'm not. And to maybe show someone else who feels equally as alone as I do in times like this that, no, you're not the only one.
But then the voices of reason or maybe anxiety kicks in and argues no on cares. No one would want to read that. It would just be a drag. So I just... don't.
By morning this sentiment will likely have gone back to slumbering in the back of my mind untill the next bad timesTM. But right now. Here in the dark. Trying to distract myself from pain and misery. For just this moment in time, I want to reach across the void and go we're not alone. Hoping for an echo.
Went to an Arcane/LoL meetup at con today. Had to tap out early because my POTS disease usually awful in the heat and I’m already suffering bc of my shenanigans but I had too much fun so,,,,,worth it.
Remember my fellow plus sized and disabled babes: you can cosplay too 💖
I'm glad you're doing better! My grandmother had Macular Degeneration and I only found out after she died. It's genetic so my mother and myself are both at risk for developing it, and my uncle has already had vision loss in one eye. It can definitely be scary to have that threat always looming but I don't want to let that fear that I might develop it and if I do that I might go blind run my life. If there are problems I will deal with them and if I do end up developing it and going blind then I will deal with it then as well. You definitely aren't alone in both the condition and the fear and anxiety but I'm so happy you're feeling better! Please continue to take care of yourself!
I hope you and your mother will be able to enjoy good eye health for as long as possible, and stay free from MDD 💙 mine was genetic as well, and unfortunately came on much earlier than it would in most.
Thank you for the concern anon! I will endeavor to not let my thoughts wander to it too much.
Woke up without a migraine today! Feels so good.
I haven't been very active on here lately.
Currently going through Some Shit.
Mostly health related. My as yet still undiagnosed chronic illness has been getting much worse, as has my mental health because of it.
I've barely been able to work, managing 1-2 days a week max since mid-July, and being terribly unproductive on the days I am there thanks to how shitty I feel. Since I am comission sales, this is all unpaid time off (salespeople at this company do not get PTO) so that is an added stress factor. I sent in a distribution form for an old 401k that I never rolled over into a new one, which I know isn't the best decision in terms of my financial future, but hey, gotta do what I can to make it through the present, right?
Anyway, that's been delayed because since I worked at that place I got married and changed my name. Ugh.
Hopefully that will be on its way soon, and though its barely anything it may let me squeak by for a few more weeks and let me catch on the bills I haven't paid for this month.
Think I am going to bite the bullet and officially take some FMLA. Today my legs were so weak and so stiff I could barely walk, and then they gave out when I was walking downstairs and I fell down onto the landing. Not fun. The FMLA will be unpaid, of course, I was denied short term disability coverage based on my medical history back when I applied for it during open enrollment, but at least I won't lose my job. Though at this point that might be better. I could get on Zach's insurance and unemployment would at least be some money.
Might make it harder to find a job in the future though. Been trying to find a work from home job to help me cope with all this for a few months now. Not much luck.
I found a new doctor, or rather Physicians Assitant, since my old one left her practice, and I really like the new one. Seems like she is finally going to break the thyroid/cardiovascular/rheumatoid/depression cycle that all my doctors keep testing for and start considering other things.
So, I have an appointment with a neurologist in September, and I am supposed to get a call to schedule an MRI soon. Looking for signs of MS. And other things as well, but that's her main thought right now.
Though I never considered it, looking into it, I do have an awful lot of the symptoms listed for it. Of course, it seems lile MS just has an awful lot of possible symptoms to begin with so that could mean nothing.
My aunt has MS. Though apprently it is not genetic, but can cluster in families? Does that mean there is an environment factor then? Dunno.
All in all, feeling pretty down and defeated here lately, to be honest. Sorry for the long post. I can't sleep so I am soaking in an epsom salt bath in an attempt to ease the pain in my joints, and I am bored.
Oh! And my therapist officially diagnosed me with C-PTSD from my childhood and everything I went through with my parents. It actually made me laugh. Like, of course I have PTSD, that was a no brainer, but thank you for the membership badge.
I’m going to start using the ‘chronic health tag’ for my health problems rants and vents. I’ll always post them under a ‘Read More’, but if you don’t want to see them entirely, feel free to blacklist the above tag.