Eds - Tumblr Posts - Page 2

officially got diagnosed with POTS today 😎

(and had another physiotherapist take a look at my joints and skin and go 'yeah that's... that's bad and looks suspiciously like hEDS but i dont have the qualifications to say for sure, sorry')

this comorbid disorder sh*t is a pain in my... well, everywhere, but t least i know i'm not misreading my symptom set :) that's a relief at least.

Pros of Fourth Wing: I don't have to explain what EDS is anymore (most people who've read it or know of it ask me if it's "like that girl/Violet from Fourth Wing" and I can just roll with it without having to educate them)

Cons of Fourth Wing: THE ENDING OF IRON FLAME, FLAY ME, AND FEED ME TO TARIN IM SOBBING

*casually dislocates finger and snaps it back in place*

I love EDS

disabled system asks: 1-4, 10!

1. Is your disability invisible, visible or both?

Both: invisible in the way that there appears to be nothing outwardly wrong with us (as doctors kindly keep reminding me) but visible in the way that we use mobility aids almost all the time. We wear a sunflower lanyard in public, and use a mixture of a cane, crutches and a wheelchair depending on the day.

I wish to add, as someone who has looked able bodied, and disabled in various fonts.. people don’t treat disabled people better if they’re in a wheelchair or visibly ill, and some are arguably worse to young wheelchair users.

2. Do you use mobility aids? If so, what for?

We do! As said above. We have a mixture of issues (ranging from endometriosis to POTS to hEDS to fibromyalgia) that create.. well, a mixture of issues XD. We’ll use the wheelchair on bad pain and fatigue days and carry the crutches.. or, on better days, just use the crutches to take some pressure off our knees, and aid as balance. As cool as our cane looks (photos later), we stopped using it as it was giving us pretty severe hip pain on one side from the way we had to lean to get support from it (still my fav visually though).

3. Is there a specific alter/part/headmate who fronts to deal with pain? How do they manage it?

Yes, that would be me. I split when we were very young to deal with injury, particularly blood. As our chronic pain increased, so did the amount of time I spent fronting, until I slowly became our most common fronter. Sucks though, cuz that was never meant to be my job, I was supposed to stay sitting on the sidelines only appearing to deal with first aid and other protector things. Instead, I’m here, and somehow I make it everyone else’s problem.

My appearance as most common fronter got us outed as a system because I’m so drastically different from the common fronters of the time. {its a little more complicated than that but you get the idea}

I manage it with a combo of pain killers (including medicinal CBD, THC, and flower, pregabalin, panadol, ibuprofen, codeine and morphine amongst other things… happy to answer questions about any of them if you’re curious), dissociation, weaponised tears and sheer fucking willpower… I wish I could say sheer fucking will was still working, but it is not very well anymore. There’s only so much one can deal with, and our pain has been getting steadily worse for the past few years with very little support (most of our illnesses have no cure, only management). We’ve reached the point where our doctors and specialists aren’t sure what to do with us and are wondering if there’s something they have missed…but uh, our tests, bloods and results are coming back clean. Looking into that at the moment lol.

4. Do you experience pain variety based on who’s fronting?

Oh hell, do we ever. Certain members of the system *cough* Kyle *cough* have dreadful pain tolerances - I always know when one of them is cocon because our pain skyrockets into impossible levels, even if I’m trying to keep it under control. Certain other members of our sys have average pain tolerances, some age regress to cope, others just curl up in a ball and sob.. depends on the alter - and the cyclical nature of parts of our pain make it difficult to manage, and to recognise how each alter is affected. Plus, it’s hard to compare pain tolerances when each of us have no other/barely any frame of reference.

10. Do you decorate your aids?

YES. We use a combination of spray paint, cheap nail polish, stickers and in the case of the wheelchair, holders designed for prams and bikes (water bottle holder, clips, bells, reflective stripes etc).. aids start out super boring and for us, decorating them and making them prettier is the only way to make them tolerable. And political - if the government is going to make our life into a political ‘issue’, we will turn right back around and make them aware of our existence ;)

the pic doesn’t grasp it very well, but we painted the chair’s spokes rainbow (and they look super cool when we’re driving it)

Thanks to @disabled-systems for the game <33

Why can't I just turn it on and off again, or factory rest it please

I just found out my cousin and her sweet little girl in middle school, a little one I held when she was is diapers are both starting to show signs of my disease and it’s such a hard feeling of validation that I’m not alone and absolute dread knowing the pain they’ll feel. That sweet little girl should never have to know this. She’s already needing pt for her ankles and knees. Fuck man disability isn’t fair.

TL;DR: Obvious amputee struggles, hidden hEDS hijinks, failed attempt at mooning church ladies with my sexy yoga talents.

Invisible disabilities are still disabilities, and even if people can't outwardly see what you struggle with, you have the right to look "unsightly" or "inappropriate" in public to take care of yourself. This is taking medications, this is sitting down, this is doing whatever you need to do to keep your body happy and healthy. I'm used to being very obviously different with a congenital forearm amputation that doesn't really get in the way of my life besides the occasional inconveniently short microwave handles (can't get my residual joints behind them) or the way strangers and family often treat me in public for it (very poorly; this is my main struggle and I'd go so far as to say social separation is my main lifestyle difference. I am always unsightly in public.) . . . But the less notable side of my body, which is a progressively worsening diagnosis of hEDS that I've been dealing with for half of my life, is something I am still getting used to accepting and managing. With or without a lot of physical therapy, supplements, rest, and preventative care, I have issues that won't go away. Lately, this means that I can't sit up straight or stand for long periods of time, and very often need to do strange little jigs to get my ribs back into their parking spots in my poorly-oiled upper back— essentially, I can't look proper in quiet spaces. As a woman attending a tri-city snooty-suburb church primarily composed of prim-and-proper older ladies and their equally judgy sheltered tweenagers who would have a conniption at the idea our planet Earth being over 6,000 years old or, God literally forbid, people being themselves, I have at least one personal worst place to have three ribs twist themselves out of me so suddenly while mid- un-pretzelifying my body (to avoid back pain on a shitty pew) (also read: standing up like I'm an overburdened robot). That said, I love my community for the things they do correctly, and I love and prefer the church I attend while at my university for being much kinder, more open-minded, science-loving people.

So anyway, you do what you have to do, even if this means gasping like a fish with a harmonica stuck in its throat, squeezing past 10 of those people very forcefully, and lumpily skittering out of the room (picture a constipated armadillo. I'm fond of my parenthetical similes if you can't tell) to the aghast spite of plenty to put your rebellious skeleton back together in the bathroom, hands covered in napkins and ass directly to the door like this:

(I was taught this funny hot banana-pyramid pose by some very good friends of mine. It saves lives.)

Some people will still love you when they see your nice ass at church, and others will be offended over silly things, and even more will have the right intentions but a terrible mindset. . . But you matter most in this context, unless you're bowling over 95-year old grandfathers for bonus points.

And no, I didn't get caught. And, as a final addition, I think this whole connective tissue disorder thing has helped me to start accepting the visible part of me more. As I've mentioned before, I was raised to stamp out the idea that I was different, and to ignore my own support needs to convince others. Those needs were much easier to believe for something new and fresh that I could demand regular appointments for, and the wacky things I have to get up to to avoid pain have helped me to give less of a shit about others, even if it's hard to.

Oh my god I get that feeling so so much. Currently using a cane (my joints suck so bad lmao) and people are so stupid about it!!!!!! Legitimately this is part of the reason I had to leave my former school, people are so rude and stupid about younger people having canes sometimes. Ya either have people acting like you can’t do anything for yourself or like you’re making everything up.

I think the most unfortunate thing is that a lot of the people who give me issues are older people who *also* have canes, they tend to think I’m faking or doing it for the aesthetic just bc I’m younger.

But yeah pretty much the point of all this is that you’re so valid bestie, people should butt out of your business and you should do what’s best for you, good luck!

My knees are getting bad again to the point where I'm considering using my cane again. I don't mind using it, it really does help, but there's always the annoyance of people asking questions or being like "Oh, I'm so sorry for you" with the pity route or "You're young, you don't need that" with the ignorance route. Or, gods, the fucking looks people give me.

I want to be able to use my cane in peace if I need it, thank you. I feel like I walk through a minefield everytime I try and bring it up in conversations about needing it again.

Today’s predicament: had to get my Mamie’s (grandma) dog out of a gulley via scooting down the steep ass hill. Need crutches? That’s rough buddy one of them is missing the rubber tip!

Solution: Old soda bottle lid, cut up sponge, duct tape