@spacedocmom

visibly disabled people will present others with the most basic and easy to understand request like “please don’t talk to me like I am a small child” and in response people will just start monologuing about how difficult and confusing this is for them and how they’re doing their best and how they need patience and understanding too and it’s so fucking tiring lol

When talking about disability and chronic illness, people don't understand that happiness isn't optional. Humans have a fun meter in their brain just like the sims, and that doesn't change for disabled people.

I love recognizing limitations and accommodating myself when I can, but at the same time, I WANT to do things for my own happiness. I WANT to cosplay at an anime convention, even if that means I won't be able to walk for 3 days. I WANT to go canoeing with friends, even if that means I'll be sick for 2 months after. I want my room to be clean and I want to decorate my space and I want to go have fucking fun in the real world and not just video games for once.

And when it comes to instances of stuff we do purely for fun, people still talk down to us and give us the "know your limits" speech like us having fun exists in the same context as breaking our bodies for the sake of capitalism. It's not the same thing. Quit shaming disabled people for doing shit. Let disabled people chose informed risk for the sake of fun and happiness. Fun and happiness are not optional.

went to my general practitioner and suddenly got diagnosed with post covid and cfs. after he had not taken my symptoms seriously in the past. after years of medical gaslighting. i mean i still think its mecfs but thats probably as close as it gets. which is so much better than nothing. nevertheless i don't really seem to feel much about it even after i've recovered for over a week from this draining excursion. just endless exhaustion

to me, the universal trust in doctors from people who haven't experienced medical mistreatment/neglect is akin to the trust that upper middle class and white people have in the police. they haven't experienced the mistreatment themselves so they assume it doesn't exist. they assume that every doctor or police officer is only in it for protecting people. they assume that the people who made the rules for these organisations are somehow all-knowing and know the truth about what is morally correct for society. the difference is that there actually is such thing as a good doctor, while there is no such thing as a good cop.

me: ive been bedbound for six months

dr: have u tried getting up?

me:

dr: being upright is good for u to prevent deconditioning

me:

dr:

me: it was in fact the first thing i tried

I was outside today! For the first time in weeks except medical appointments. Went for a very short walk. It was great, but i'll probably have to pay for it and also i'm more sad now than i was before. The distance between where im at and where i would like to be is just too big.

chronic illness really makes the weirdest ‘would you rather’ scenarios come to life.

like, would you rather: show up to christmas with no presents for anyone or show up having not showered for a week?

would you rather: feed yourself or do the dishes?

you can choose both but your penalty is to spend an unknown amount of time bedbound afterwards.

Your friends and family with chronic pain aren't doing well.

Yes, even the ones that say they are.

Yes, especially the ones that are complaining and lashing out already.

Chances are high that however bad they will admit things are it's actually worse. By a lot.

We're conditioned to be "okay". If we're breaking down at non scheduled times we aren't coping well. I promise.

Your sibling/partner/bestie/parent who is breaking down without preamble on a Tuesday is suffering. Be kind. We're sorry.

I won't lie gang... this past month I have gone from using a cane to get around outside to only using my wheelchair- propelled by someone else- to get from my bedroom to the bathroom. needless to say my condition is progressing at a really steady rate and things are getting scary. I am unable to make myself food or even hold my phone and type for too long. However as this is all so new and happening over the christmas/new year period I am not getting adequate assistanc or healthcare as I still need to APPLY FOR ASSISTANCE to help me APPLY FOR ASSISTANCE which could overall take 6+ months. Despite people pushing me to remain hopefull, I can really only see myself getting worse from here. My resilience can only keep me awake for so long. What I really want to ask, specifically the me/cfs community but the wider chronic illness community too, is for help arranging a sort of "living will" for however long I'll be alive but not able to do very much. my will for what happens to the life that I used to have before it all got worse - and how I would like to be taken care of. Are there any templates out there that I can send to my carers? If not that, some advice or words of support anybody can give?

giving birth sucks tbh. not only do you and the baby you’re birthing almost die, usually you shit yourself and often you tear your taint. then you have to push an organ out of your body (placenta) and if even a little of that remains in your body, you can hemorrhage to death or develop an infection that essentially rots your body from the inside out. even if you had a relatively “easy birth”, you bleed for weeks on end. even after that stops, your body and brain is changed for the rest of your life, the pregnancy leeched minerals from your bones, that can cause osteoporosis later. minor urinary incontinence is not uncommon, brain scans of people who gave birth show permanent changes in their brain, you’re never quite the same.

I say all of this not to say giving birth is disgusting but it is a harrowing and visceral experience. society downplays how fucking awful it is and makes it out to be a ~magical~ experience but it isn’t a magical transformative experience for everyone. it can be an extremely traumatic experience for someone who wanted to carry a pregnancy to term, much more so for someone who did not want to be pregnant in the first place or someone who knows their baby won’t survive the birth. anyway, abortion is a right. pregnancy and birth aren’t just inconvenient, it’s fucking awful.