weird-and-unwell

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Love how my stomach trying to digest food makes my whole body freak out. Like no I promise I'm fine and I'll be fine in a few hours. I know I'm also shaking and not making sense and very nauseous but seriously I'm actually fine.

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ppl rly hate girls with eating disorders tbh. did anyone else notice this

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Inspired by my job wherein you get the "sweet" mentally ill kids who are shy and quiet and maybe cry a lot and want to die vs the "nightmare" mentally ill kids who scream for hours at a time and bang their head against the wall and tell you to fuck off and die.

Hate the line between the "good" mentally ill and the "bad" mentally ill.

The "good" anorexic who quietly refuses food or cries alone in their bedroom vs the "bad" anorexic who screams at you and tells you to fuck off when food is offered.

The "good" depressive who goes to work and forces a smile even though they feel like shit vs the "bad" depressive who rots in bed for weeks or months at a time.

The "good" psychotic who takes their meds every day, never complains about side effects and has some insight vs the "bad" psychotic who doesn't want meds or hates the side effects or has no insight at all.

Rinse and repeat.

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Hate the line between the "good" mentally ill and the "bad" mentally ill.

The "good" anorexic who quietly refuses food or cries alone in their bedroom vs the "bad" anorexic who screams at you and tells you to fuck off when food is offered.

The "good" depressive who goes to work and forces a smile even though they feel like shit vs the "bad" depressive who rots in bed for weeks or months at a time.

The "good" psychotic who takes their meds every day, never complains about side effects and has some insight vs the "bad" psychotic who doesn't want meds or openly hates the side effects or has no insight at all.

Rinse and repeat.

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how many times do we need to say it disability benefits aren't worth the effort of a scam

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top-tier tips: comunication w nonverbal folks

personal think these most important takeaways from video post earlier, so!

no condescend or patronise that’s stuff like “good girl,” complimenting carers on our work & skills, using babyvoice, & simplifying language when not asked for - even nonverbal child shouldnot be treat this way for just living life, let alone adult. we’re people, not trained animals!

no speech doesnot mean no comunicate if trusted person understand what we mean, is not “mind-reading” - just means we got some way comunicate w that person! body language, signs, even written notes - you might not see, but is there

no response doesnot mean being rude if we’re out alone (or trusted person has step away) we may not have way comunicate. if you ask question & get frustrate or confuse noise in response, that likely means we lack way answer - if encounter at nother time, might be able chat! without our proper aids, at best can only answer simple yes/no questions, maybe pick from short numbered list

don’t take our voice away whether means physical take device, remove access to PECS cards/book, turn away while signing, get huffy while we type answer, whatever - don’t. doesn’t matter how curious, or how bored - you wouldnot like much if someone squeeze your throat while talk, right? don’t do same to us!

nonverbal doesnot mean intelectual disability… yes, there can be overlap, & there no problem in acknowledge this. but is not always the case, & it just make awkward when assume this way. if you ask nonverbal person abt fandom, introduce by name - if they know, yay, have fun! if not, don’t make assumption on ability - just give brief rundown, warnings if need, & they’ll decide if intrest.

…but speaking of, also check how you treat & think of ID people. OK, yes, this post is abt nonverbality. but forreal, if you look at nonverbal person, come to (potential wrong) conclusion they ID, & decide must treat like young child? this also wrong & offensive. see point #1 again - try learn our level & needs as individuals.

don’t assume you know our thoughts if you see incomplete sentence typed on device, don’t try complete it. if you know we trying make choice, don’t overload w suggestions & try make it for us. at best, is slight annoy & slows down - at worst, could make complete overload.

remember: even we’re not always up for talk!

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I make art about laundry now

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"Of course they had autism back in the day! it was just guys like Uncle Billy who knows too much about trains!"

they did have autism back in the day, it was just called mental retardation or childhood schizophrenia and people with it were interred in asylums, lobotomized and experimented on, killed, shipped off to live with family abroad, hidden from the public as shameful, or died from illness or injuries. It was people like Uncle Billy, but it was people like Rosemary Kennedy, aunt to the current secretary of health and human services of the US, a man pushing dangerous rhetoric about Autism to the public.

Autism and other developmental disabilities and neurodivergence isn't something that nobody knew about until the 2000s. Autistic people have been marginalized and killed for much, much longer. Remember your high support needs, profoundly disabled, and capital-D Disabled autistic siblings in arms and don't step on them to win approval from people who want you dead too.

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"Wahhhhh neurodivergent people say they can't do stuff!!"

"Wahhhhh neurodivergent people are making EXCUSES!"

Why has it become cool suddenly to shit on neurodivergent people.

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A thing I hate about needing a carer is that if they slip up and say anything that could be interpreted as rude, people blame you for it

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I feel you on what this is about, but also holy shit OP this is amazing?? Acrylic is the bane of my existence and you've used it so well the SHADOWS the HIGHLIGHTS the text the way you've mixed sharper lines with softer strokes holy shit

"sickness, self-portrait" 10x10 acrylic on canvas

about feeling defined by illness and disability, and that all I'll ever be is a sick person trying to masquerade as something more.

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it's upsetting how much schizophrenics are excluded from the neurodivergent community, even though we are very much so a part of it.

schizophrenia is a type of neurodivergence.

it's such a good thing to see more acceptance happening for autism and adhd for example, but what's not good is seeing so many people ignore schizophrenia or act like it's "too scary" to be included.

i cannot emphasise how harmful and ableist those stereotypes are.

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Knee pain, back pain and tiredness are just the "am I making a big deal over nothing" triad:

Me for years when my sciatica was bad: Okay sure everyone's got a bad back but is it normal to have back pain and no feeling in one leg? Am I being a wimp about this??

Me even now with my knee pain: Okay sure everyone over 25 has bad knees but I can't stand or walk unaided...am I being overdramatic? Am I overreacting to a normal thing? Me coming into work admitting I slept for 20 hours solid on my day off, and my coworker saying that's normal: Is it normal or does my coworker also need to see a doctor...

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Hello!! (I have the same chair as you btw, snap!)

Hopefully some of this will be helpful:

The big wheels should be fine :) Didn't remove them, and I've not seen other wheelchair users do so either. They're more "attached" than the other bits.

You can book assistance for luggage, and depending on airport/airline, they might offer anyways when they see you have a disability. I'd advise asking your caregiver to call in advance and arrange that.

I only brought along my basic tool kit so I think you'll be fine :) Maybe bring a couple of spare screws or nuts, just in case? I can't remember what size my spare bits are, but I usually try keep a few on me to be safe.

Technically they should probably go in the wheelchair closet. I put my cushion on my airplane seat (it's a bit awkward, but it worked). I used my old chair on flight (a quickie xenon 2), so just had to remove my cushion. But my crutches, tyre pump and stuff were put in the overhead area (and one of the crew members did that when helping me on.)

Also I know you said you can walk to your seat, but I also said this right before trying to get off my flight and realising the flight had fucked with my legs. I think it's the air pressure or something, I'm not sure, but all I know is that every leg of my flight ended with my legs so incredibly wobbly that it was like when I was first relearning to walk again.

That, mixed with how narrow the plane can be, makes me suggest to consider an aisle chair. I found it very hard to navigate with crutches going to my seat. And returning from my seat to get off the plane was basically impossible.

(Not trying to scare you btw!! I just know I wish someone had warned me lol.)

Anyways let me know if you want any more information! I did a lot of research before travelling haha

ok wheelchair using friends and community!!

I have custom manual chair (Ki Rogue 2)

I will be taking flight soon, international (US to canada and back). Will have caregiver with me, both with have backpack, suitcase (to check) plus my cpap.

Need help with travel suggestions if you have them!

I plan to use my own chair, and gate check it at the plane (can walk to my seat with cane), collect it and use it between each flight. Have 1 layover with 3.5 hours to go through customs and security again and catch 2nd flight.

I can be on my feet about 1 minute, so enough to get to seat from jet bridge and not need aisle chair.

Questions

I know to Bring all removable parts with me in cabin when i gate check wheelchair. Know to do seat cushion, Backrest, arm rests, etc. But. Does this include the big wheels?? (Quick release, 24", so won't fit in overhead bin?) Input?

I can't self-propel. Would rather not have to rely on airline escort push me while my caregiver handles luggage (can't check through to destination because customs) and also dont like other people pushing me i dont know. So.... how do we deal with 2 suitcases when my caregiver has hands full pushing me?

Tools: i have 2 sets of allen wrenches (my wheelchair has both metric and imperial. Why.). Also have screwdriver kit thing (small ratchet handle with exchangeable bits), and adjustable monkey wrench. I cant fit socket set. Am I missing anything else obvious? These are all the tools I have really used on my chair so far, but nothing major has broken.

What kind of thing do i bring to shove my arm rests, seat cushion, Backrest, etc in? Do I need to try to fit this in the overhead or is this where the wheelchair closet that airplanes are supposed to have are for too?

Ok anyone has any advice or can help please feel reblog/respond/shoot me an ask! Thank you!!

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PRO TIP doctors lie all the time. one of the biggest lies doctors tell is, "the blood results came back normal, so you cannot possibly have anything wrong."

wow! the blood test? the blood test? the one single blood test? the one singular blood test which diagnoses all conditions? how fortunate humanity is to live in an era where every single condition has a blood biomarker, can be diagnosed through a tube or two of blood, and no other tests exist.

the reality is, there are thousands and thousands of blood tests out there. and there are an endless number of conditions which cannot currently be diagnosed through blood. that is why we have MRIs, echocardiograms, tilt tables, colonoscopies, nerve conduction studies, stress tests, urinalysis, biopsies, patch tests, ultrasounds, x rays, gastric emptying studies, physical exams, stethoscopes, electrocardiograms, angiograms, spinal taps, and so many more. some conditions are diagnosed through quizzes!

even among conditions that can be found in blood, there are so many blood tests out there that one person can not have them done in one day. and many blood tests have completely different requirements. some require being upright, some require laying down, some require blood samples from two different parts of the body, some require fasting, some require being dehydrated, some require consuming something specific, some require multiple blood draws over time, some require being drawn into tubes kept at specific temperatures.

and even if all of the requirements are met for a specific blood test, blood tests are not 100% accurate. they often have a high false negative, where blood results suggest you do not have a condition when you actually do. there are so many blood tests that can only indicate if you do have a condition, but not if you do not have a condition. and there are blood tests that suggest something is going on, but not necessarily what. there are also blood tests that suggest you may have a condition you do not have at all. why?

diagnostics are subjective. diagnostic criterias are decided by humans who make mistakes all the time. test results are usually interpreted by humans. diagnostic criterias are constantly being updated, new biomarkers are always being found, and not every condition with a blood biomarker has an accurate or readily available test.

if a single blood test could diagnose everything, medical school would be a hell of a lot shorter.

medicine is subjective and evolving. if your doctor tells you that you are definitely perfectly healthy because "the blood test" said there is absolutely nothing wrong, they are lying. any doctor that tries to convince you that every possible condition would show up on the one blood test they ordered is lying. it is a lie.

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Fluctuating symptoms don’t make you fake. They're normal.

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After seeing some of the reblogs on this, some special shoutouts to:

People trying to get diagnosed but who have wildly unhelpful or ableist doctors. (That's a lot of us I fear!) I wish you luck in finding a better one <3

People trying to get diagnosed but who have wildly unhelpful or ableist families. I feel you, and I hope it gets better.

People who have to try to hide their undiagnosed disabilities. It's shit to have to do that, and it's also shit for your health, so I'm sorry to hear that. Make sure you don't downplay it to doctors when you get a chance, a good doctor needs your honesty to figure things out.

People struggling with insurance. I can't imagine what a pain it must be to have some random third party as the issue!!

Indeed to the repeatedly misdiagnosed, it's so frustrating, and I hope they find the right diagnosis for you!!

To those who can't work, or who need mobility aids, or who have to turn down doing things but can't explain to people exactly why due to the lack of diagnosis.

To those struggling due to stuff like gender, pre-existing diagnosis', assumptions like "that'd have been diagnosed as a kid", "there's no way you could have this because..." etc.

Honestly those dealing with added discrimination in general. Disability is not restricted by age, gender, sexual orientation, race, religion, and anything else I might be forgetting to list!!

To those who are scared of being diagnosed and scared of medication. Honestly, I understand, and I hope whatever happens works out for the best for you.

And to those who have that "you sort of meet the criteria for this but also not quite" issue. Criterias are understandable but a pain. If it's criterias for mental health or neurodivergence, I hope that knowing that a lot of it is low key arbitary (as in, the same patient can easily be diagnosed with different things by different doctors) may give you the confidence to try again with another doctor, and to embrace yourself in the meantime <3

Searching for a diagnosis is so tiring and so hard and I just hope you all know I believe you, and I believe in you. You'll get there, just keep going.

Happy disabled pride month to the undiagnosed. To those with no idea what it could be. To those who are pretty sure they know, but can't be certain yet. To those whose doctors are trying their best, and to those whose doctors aren't. To those with test results, and those without. To those whose prognosis isn't looking good. To those scared by the course of their symptoms, and with no idea what's going to happen next. Living undiagnosed is hard, and I wish you all luck.