(guy whos scared of everything and feels guilty about everything) sorry i got scared and felt guilty

i feel like i’m dying but here i am doing laundry. this shit is so surreal sometimes.

it’s weird how if the stuff my chronic illnesses causes happened to an abled person, they’d call an ambulance but i’m just expected to get up and carry on with my day

Holy fucking shit, pain is not a matter of fucking willpower. I'm not being fucking weak when I can't push through my fucking pain. Sometimes, I just fucking can't. I don't need to fucking "stick it out" or "keep fighting." When I say I want to give up it is not because I am not fucking trying hard enough. I am trying so fucking hard every fucking second of every fucking day. The fucking able-bodied assholes that say this shit have never been in actual pain a day in their fucking lives, and it is SO obvious. I think I don't want to talk to another able-bodied person for the rest of my entire life.

also when people say “handicapable” or “super abled” it makes me want to bang my head against the wall.

"differently abled"

no no, you see we *cant* do things because of whatever reason. a disability disables us from doing so. and that shouldn't be a bad thing in your head

"differently abled"

no no, you see we *cant* do things because of whatever reason. a disability disables us from doing so. and that shouldn't be a bad thing in your head

my side table next to my bed is a pharmacy at this point.

This is to all my besties who had to miss school or work due to pain or other symptoms.

I am so proud of you. You are in so much pain and having a flare up of symptoms and you are still pushing on. You may be stuck in bed or on the couch but you are still making it. Just handling what you handle on a daily basis is so much more than a non disabled person does on a daily.

You are worthy. You are worth your space in the world. Don't let society make you feel lesser than simply because you have to deal with more than most do.

I'm sorry if this doesn't make a lot of sense, I am in so much pain I can barely move but I needed to say something to those people out there who are in my place

the first xray is my tibia and fibula. the second xray is a normal tibia and fibula. you can see just how much mine is thickened and dense compared to the normal xray.

me when people say how nice it must be to have a disabled parking placard. like i need that shit to function well its not a prize 😭

i wish disabled people got as much free shit as people think we got. i want snacks

yall are pro mental illness until they hallucinate

yall are pro mental illness until they dissociate

yall are pro mental illness until they self-isolate

yall are pro mental illness until they're paranoid

yall are pro mental illness until they split

yall are pro mental illness until it's too Scary for your comparatively neurotypical brain to handle

have you joined the chronic pain club today? it's not too late!

perfect representation of what it’s like to be bed bound because of chronic illness /disability.

perfect representation of what it’s like to be bed bound because of chronic illness /disability.

i have a disability. more specifically, i have a rare genetic condition called camurati-engelmann’s disease, or CED. it is also known as progressive diaphyseal dysplasia (PDD). it is an extremely rare disorder and only around 300 cases have been reported worldwide.

i figured i would make a post talking about it, in an effort to not only educate others, but to possibly connect with others who suffer from it as well. i apologize for the longer post but please this moment to learn about my disorder.

CED is a skeletal condition that is characterized by abnormally thick bones (hyperostosis) in the arms, legs and skull. the overgrowth in bone causes bone pain, muscle weakness and extreme fatigue. the pain feels like an electric stabbing pain, an ever-increasing pressure sensation around the bones affected, or a constant aching. pain can also occur in joints and they will often lock-up, becoming immobile and stiff. the pain is especially severe during 'flare-ups', which can be unpredictable, exhausting and last anywhere from a few hours to several weeks. this is a common occurrence for us, often causing extensive sleep deprivation from the chronic, severe and disabling pain. when this happens, we are often bedridden or housebound for days or even weeks.

those affected also have an unsteady walk and limp. thickening of the skull can also lead to neurological problems, like hearing loss, vision issues, vertigo and tinnitus. symptoms vary in severity from person to person. there are treatments, however it cannot be cured. pain management is a large aspect of living with this chronic disease.

there is very little awareness and research for CED. rare diseases are severely neglected and overlooked, as are those who suffer and live with them. research is often not considered profitable due to their cost to develop and the limited patient population. major federal funding agencies give preference to research that is likely to have a direct impact on patients.

living with a rare disease is extremely difficult and isolating. it impacts the lives of millions of us and our loved ones worldwide. those of us suffering from rare medical conditions should be entitled to the same quality of treatment as other patients. i am disabled, but i am worth it.

YOUR DAILY REMINDER: DO NOT TOUCH A DISABLED PERSON'S MOBILITY AIDS.

if you randomly push a disabled person's wheelchair. you are taking part of their autonomy.

if you knock away a disabled person's crutches. you are taking part of their autonomy.

if you grab a disabled person's cane. you are taking part of their autonomy.

if you move a disabled person's rollator/walker. you are taking part of their autonomy. I don't think people understand that our mobility aids are an extension of our bodies. You wouldn't kick an abled person in the shins or grab their arms and twist them just to see how they would react, or see if they'd be able to get around and function. You treat us like a joke. Our mobility aids aren't toys that you can play with and fidget with and god forbid potentially break. They're part of us. You have no right to touch them. If you take my fucking cane away from me, I can't walk properly.

If you touch my fucking mobility aid, you take away part of my autonomy.

btw something im working on learning is that disabled is something that im allowed to be in public.

im allowed to lay down on the living room floor if im in middle of a conversation & enjoying it but feeling too lightheaded to sit up. im allowed to sit at the table to do meal prep and to sit on a stool at the stove to cook. im allowed to use my cane while i run errands.

if people are uncomfortable with my disabled existence, it’s their responsibility to work on that, it’s not my responsibility to try to hide my disability from the view of abled people.

i shouldn’t be relegated to my bedroom or to my house or to places where no one else will be just to have accommodations. im allowed to just exist & not have to pretend to be able bodied for the comfort & convenience of others.

“why are you limping ? 🥺”

i just felt like it today.