ughidkwhocares - Tumblr blog

[ughidkwhocares]

[ughidkwhocares]

so I got into grad school today with my shitty 2.8 gpa and the moral of the story is reblog those good luck posts for the love of god

[ughidkwhocares]

[ughidkwhocares]

I feel that when you're not able to get treatment for your chronic illness or disability, it adds to the feeling of losing control over your body.

Not only do you struggle to manage your symptoms but you have no choice but to watch yourself decline if you're unable to access proper care, especially in a timely manner. The control over your health and your body feels out of your hands. We are only as healthy as the resources and treatments that are available to us.

And this makes me question, whose body is this?

Because the less treatment you get, the more you lose control of your health, and the more power doctors hold over your body.

This body gives me life and I need help and treatment to live. I deserve care. I deserve autonomy over my own body. And I deserve control over my fate.

[ughidkwhocares]

I'm begging you, pleeeaaase if you live with a physically disabled person and they tell you what would make the living space more accessible, DO NOT SAY "just ask me for help." I don't want to have to ask for your help dumping out yesterday's coffee grounds in the french press.. I want to be able to make coffee without having to ask for help every. single. fucking. day.. Like, why don't able bodied people not understand that asking for help to do every little thing fucking SUCKS?? Also, when I'm upset because my own home isn't accessible, don't get mad at me as if it's something personal towards you.. It has absolutely nothing to do with you. I'm allowed to be mad at the lack of accessibility my disability creates... Don't make it about you.

[ughidkwhocares]

i would like to remind everyone that most disabilities come with comorbidities. what this means is that, most of the time, someone who is disabled does not have just *one* condition that causes them pain or difficulty.

for example, i have crohn's, which is an autoimmune disease primarily affecting the bowels. i also have ehlers-danlos syndrome(eds), which is a connective tissue disorder. eds can make crohn's worse because eds can affect your intestinal lining. crohn's can make eds worse because crohn's can also affect joint inflammation, so loose joints become more inflamed than they otherwise would. both can severely affect fatigue levels.

these are just two things i deal with. there are other comorbidities and complications i deal with, like fibromyalgia, dysautonomia, nerve damage, and more; but eds and crohn's are the easiest to explain how they play off each other.

i don't think abled people realize that most disabled people deal with something like this. i see disabled people online being very open about their multiple diagnoses to raise awareness and understanding - and then i see abled people shitting on them because "there's no way you can have that many things wrong with you."

but this is the truth of the situation: being disabled is almost never a straightforward, one-and-done diagnosis thing. even if it starts as one diagnosis, many people discover or develop other problems as their health changes. or even develop other issues because of medications! the intravenous medication i took for crohn's causes arthritis in a significant number of patients, and is most likely responsible for just how severe my joint inflammation gets.

so if you're abled, and you've ever seen a long diagnosis list and thought maybe someone was exaggerating - please step back and rethink. this is a very common thing. i would dare to guess that more people are multi-diagnosis than single-diagnosis. you are not helping anyone by accusing someone of faking or exaggerating, you are just being ableist.

as a disabled person, it takes immense bravery to speak openly and publicly about how our lives are affected by our disabilities, and we do not deserve to be treated poorly for being honest about our realities. your lack of knowledge or willingness to learn should not become our additional pain.

[ughidkwhocares]

normal vs disordered: fatigue edition

normal: feeling tired at the end of a long day

not normal: feeling tired regardless of what you’ve done that day

normal: waking up tired every now and then due to stress or lack of sleep

not normal: waking up tired most mornings

normal: getting a little tired after standing for long periods of time

not normal: not being able to stand for very long without tiring out. being stood up drains your energy

normal: being tired more often during times of peak stress and lack of sleep, but otherwise fine

not normal: being tired/exhausted consistently for over 6 months

normal: melting into the sofa after a long day, and then struggling a little to get up

not normal: being too exhausted to move, to eat, to talk, or to do anything a person might be expected to do in an evening

normal: not liking to get out of bed in the morning

not normal: having mornings where you physically cannot get out of bed, or struggle greatly to get out of bed

the key thing is that it is not normal for you to spend most of your time being too tired to do daily tasks, and it is not normal to exist in a constant state of exhaustion. if possible, you should seek help if you’ve been experiencing fatigue for a while

[ughidkwhocares]

hurr hurr I'm a human body hurr hurr I'm gonna solve all my problems using mucus

[ughidkwhocares]

normal vs disordered: fatigue edition

normal: feeling tired at the end of a long day

not normal: feeling tired regardless of what you’ve done that day

normal: waking up tired every now and then due to stress or lack of sleep

not normal: waking up tired most mornings

normal: getting a little tired after standing for long periods of time

not normal: not being able to stand for very long without tiring out. being stood up drains your energy

normal: being tired more often during times of peak stress and lack of sleep, but otherwise fine

not normal: being tired/exhausted consistently for over 6 months

normal: melting into the sofa after a long day, and then struggling a little to get up

not normal: being too exhausted to move, to eat, to talk, or to do anything a person might be expected to do in an evening

normal: not liking to get out of bed in the morning

not normal: having mornings where you physically cannot get out of bed, or struggle greatly to get out of bed

the key thing is that it is not normal for you to spend most of your time being too tired to do daily tasks, and it is not normal to exist in a constant state of exhaustion. if possible, you should seek help if you’ve been experiencing fatigue for a while

[ughidkwhocares]

Some people view chronic fatigue as a person being ‘overly tired’ it’s easy to just be tired, however chronic fatigue is completely different. When you have chronic fatigue you feel drained, it’s as though you have lost control of your body, you can hardly find the energy to do day to day activities. Sometimes you are so exhausted you can just about eat or drink, your sleeping pattern is automatically ruined, and it can effect you internally.

I have chronic fatigue, it’s not as simple as just having a good nights sleep. It’s mentally and physically draining, so no I’m not just ‘overly tired’.

[ughidkwhocares]

Folks have got to understand that they probably aren't messed up by some Secret Big Trauma that they just can't remember; but rather by a million tiny microtraumas that they do mostly remember but don't even register as traumatic because nobody actually understood that these things would cause trauma, much less stack on each other over the years.

[ughidkwhocares]

ableism is being told "it's good to see you on your feet" by family members as you're forced to walk because your wheelchair didnt fit through the door

ableism is being scared about having a carer for the first time, but every internet search for what it's like are "what it's really like to be a carer" articles that paint disabled people as invalids without a say or entitled dickheads hurting nurses

ableism is being told "have you tried yoga?" "my friend said the alkaline diet cured her fibromyalgia" "of course you're in pain, you don't do any exercise"

ableism is that fucking marathon analogy. "if i want to run a marathon I have to train - at first one mile will hurt me, but eventually it'll be a breeze" grit your teeth through the pain, it'll get better.

what about when it hurts to type on your phonescreen? or it takes you 5 minutes to crawl to the bathroom? how long do I have to endure these things everyday before they get easy? it's been a year

ableism is telling your doctor over and over you can still move your legs, there is no nerve damage or loss of mobility, it just hurts so much you can't bear to move. and finding "possible nerve damage and loss of mobility" on every. single. file.

and this bullshit ignorance has come from not just family, but trained professionals - physiotherapists, occupational therapists, general practitioners, and neurologists

LISTEN TO ME, listen to us, please listen! stop talking, stop suggesting, just fucking listen

do this for your physically disabled friends because i promise you they aren't getting that from anyone else

as if the pain isn't exhausting enough, being constantly ignored, talked over, and misunderstood is torture

[ughidkwhocares]

ID: Text reads "So if you're just in pain all the time what do u do at home all day?" Me: image with four panels. first panel is a small cat tucked into bed. Second image is Kermit wrapped in a blanket. Third is Kermit lying on the ground on fire. last image is a large cat laying on something resembling a pillow. By @iluvmyheatingpad End ID

[ughidkwhocares]

Quick shoutout to everyone whose disability directly conflicts with their passion.

People who love light and color and photography but have extremely sensitive eyes. People who love food but have digestive disorders and intolerances. People who would play every instrument they could get their hands on but lack dexterity and muscle strength to play. People who can’t make themselves focus long enough to study the field they want to be in. People who want to paint and draw and sculpt but can’t coordinate their hands well enough, or cramp up every time they hold a brush/pencil/tool. People across all passions who face a massive barrier to learning because following a set of instructions is difficult when they don’t feel specific enough.

There’s nothing more frustrating than knowing you’d be good at something and that it’s not your fault you can’t prove it. Especially in a world that seems to only recognize top level picture perfect talent at all times. Your passion isn’t negated by not being able to follow it, and neither is your potential. You’re not lazy. Do what you can and fuck ‘em if they think it’s not good enough.

[ughidkwhocares]

The most punk thing you can do as a disabled person is love and value yourself and not push yourself past your limits for the sake of other's approval

[ughidkwhocares]

If you see another disabled person doing something that you can’t, it’s okay. Everyone’s disabilities present differently even if it’s the same condition. It doesn’t mean you’re weak or failing because you can’t do the things they can.

[ughidkwhocares]