Me when the illness is making me feel ill and the chronic pain is chronic and painful and the disability is disabling me and the fatigue is making me feel fatigued: 🥲

chronic illness is so fucking annoying because what do you mean I was completely fine and able to do tons of work yesterday with no problem but today I can't even stand up from bed without feeling like I might collapse. like what do you MEAN

I’ve just about had it with people who don’t think outside of themselves and the social norms they inhabit. Not everyone can physically train themselves out of stiff joints and muscle pain. Not everybody can work. Not everybody can just try harder. I’m already giving my 100% every day what more do you want? If you ever wake up feeling rested be thankful. If you can exist without noise-cancelling headphones be thankful. Everything I do needs to be functional and efficient or my life goes to shit. I can’t waste energy on things that are not absolutely necessary. My brain hates doing those things. There’s too many things. I want to try harder. I want to be thankful of things. I want to try harder.

If Mary Ann Skuttle has no fans, I’m dead 🍓

There’s two more weeks left in May to order stickers that will help combat sexual violence with WOAR Philly [link in description]

Everybody sit down and strap in, 'cause I have a doozy of a tale to share.

I've had anxiety for literally as long as I can remember. I've had periods of my life where it was so intense it became legitimately life-threatening (don't worry I promise this is going somewhere funny). And this was really bizarre because I have zero childhood trauma. Like, my family life is so idyllic it's almost comical. Therapists would do abuse screenings on me and look utterly baffled when I told them everything was fine at home. They'd interrogate my parents just to make sure I wasn't lying. I have one friend who I'm fairly sure believed I was just severely gaslighting myself when I said my family was great, school wasn't too stressful, and I've never lived in a dangerous neighborhood or experienced poverty.

Anyways, despite no one being able to figure out where my disorder was coming from, my doctors were able to help me manage the symptoms so that I would like, not die, and actually be able to finish high school. Which was awesome. Now fast forward to late 2021. My big sister (who has also had intense anxiety her whole life which no one could figure out why) is finishing up her doctorate and getting her physical therapist's license. Somehow, during all her studying and schooling, she finds out about this thing called Ehlers Danlos Syndrome, which explains literally everything that was going on with us. EDS is a connective tissue disorder that kinda fudges up your body in a whole bunch of little ways, including dysautonomia (episodes of very fast heart-rate that kick your body into fight-or-flight mode), and hypermobility (unusual flexibility). It's a spectrum disorder, so the severity of symptoms vary from person to person, but we definitely checked almost every box on the diagnostic list. My sister went to see a specialist, and yep, she was diagnosed EDS positive. She immediately calls my mom and goes "I know what's wrong with Niki" (thanks, sis, that's real encouraging lol). Initially we're like "okay Katie, that's nice" because honestly this kind of sounds like jumping at shadows, but I go in to see the specialist anyways just to make sure.

One consultation and diagnosis later, and suddenly my entire life makes perfect sense.

Now we get to the funny part. See, the diagnosis stuff happened in early 2022. So by the time late 2023 comes around and we're looking for a new dog (I promise this is relevant), we've been riding that chronic illness diagnosis for a while. Once again, my sister, ever the proactive one, decides she's going to help us get a new dog. She scours the adoption website, sends us photos of the cutest dogs available, and helps us make a decision. This is how we got Beverly, who has been an unstoppable force of chaos in our lives ever since we signed the papers (but she's also really cute so she can get away with it). Now on top of being a very excitable and anxious pupper, Beverly's got a weird little gimp in her hindquarters, which makes her sit all splayed-out and funny-looking, and while it doesn't seem to be causing her pain, we take her to a vet to get it checked out. Vet finds absolutely nothing. X-rays are taken and examined. Still nothing. At this point, they go "well, we could try a CT scan of her brain, which would run about $5,000, and maybe we could find something--" but my parents are already packing this dog into the car like "well that is a HARD nope." So we decide, look, Beverly seems happy and healthy, and those gimpy legs don't seem to bother her, so we'll just leave it be until it becomes clearer what's wrong with her because we do NOT have a cool $5,000 to throw around here.

Readers more astute than my family and I will likely have already figured out where this is going.

This morning, my mom is looking at Beverly sitting in her funny sprawled-out way, and something in her brain goes "wait...weird physical symptoms with no tracible cause that vets can see..." She does a bit of googling. Can dogs have EDS/Hypermobility? Yes. Yes they can. And the listed symptoms describe Beverly to a T.

So not only is my sister the one to finally figure out what's wrong with me, she also unknowingly got us a dog who has the exact same chronic condition as us. Meanwhile my poor dad, who is the only Normal Person in our house, is coming to terms with the fact that he is apparently just fated to always love chronically ill people and animals, and there's absolutely nothing he can do about it.

i have no words

source

everytime i go to the doctor i get a new diagnosis, and somehow im still shocked when it happens lol

Something non-disabked people don't realise is yes I can go out and have a normal day, I went out yesterday I walked 8 miles, but I was in pain that whole time and now today I'm in so much pain I can barely leave my bed to go to the toilet, painkillers barely touch the pain, every movement hurts every breath hurts. But I had a normal day yesterday and to some people that makes them think I'm facing (cough cough the people who decide disability benefits) and I likely will not recover until the end of the month at minimum and that's if I have not done permanent damage to my fatigue levels or joints

Just needed to vent to the void for a bit

Every time

EVERYONE GUESS WHO WALKED OUTSIDE ALONE TODAY!? ME!!! MY WALKING HAS BEEN GETTING BETTER AND TODAY I WALKED ABOUT 10 METERS OUTSIDE ALL BY MYSELF WITH NO AIDS!!!!!!!!!!

Made a cake since my mom is finally starting to take my pain seriously