#actually spoonie

[something-existing-somewhere]

Sorry I Spent all mY spoons this week already and it's fucking Tuesday. We're heading to the knives

[apologyacceptedcaptainneeda]

DONT take a persons medical device

I shouldn’t have to say that but here we are

One of the managers at work likes to take and hide peoples stuff as a joke. My manager took my pulse ox when I wasn’t looking. When I noticed it was gone I started to panic. A pulse ox is minimum $30 and I’ve had mine for over 7 years and have named it. So yeah I was panicking. I immediately paged my manager to my register and when he arrived I demanded it back. He did give it back.

I informed him that it was stupid and dangerous of him to take a medical device from someone especially like that.

So again

DONT TAKE A PERSONS MEDICAL DEVICE

[spookietrex]

I am valid even when my small victory is that I took my meds that day.

[flashbackonyourbehalf]

I have a coworker who blows quota out of the fucking water every single week - whereas I have to really push myself to even make quota - and he challenged me. Little old me. I beat him on numbers the first two times and he now has decided that we have an epic anime rivalry.

I was feeling like an asshole one day and asked him, only partially joking, “You’re always number one in the office, so why do you gotta pick on the disabled guy?”

He responded, “You ever play basketball with a disabled guy? They’ll fucking smoke you.”

It hyped me up, and every time I feel like shit, I remember that conversation.

You too can smoke people, even on your worst days.

[frenchfrysword]

I had such a good and social weekend and now I'm completely wrecked.

And I expected this, having lived in this body for quite a while. But still I find it hard to explain this to able bodied people. That yes, sometimes I will go past my physical limits to have a good time, calculated, not-too-often, clearly defined start and end, worth it because it gives me so much...

And then having to defend that I refuse to go past my physical limits for for example a daily chore I post-poned too much, or a difficult and unnecessary errand in a hard to reach place in the city...

It comes down to math: A calculation if the cost will be worth the rewards. Especially these special events where it's just a handful times a year? I think that especially explains why I will go past my limits consensually and happily for something that is a very clearly defined chunk of time, and not something that is so frequent that it cannot be defended to cross that limit each time (daily chores). Cost adds up.

And also that my able bodied social worker team doesn't really get that disability is 24/7, and that the example I vent to her about not being able to do that, that that's just one moment I've picked from the week. Just the tip of the iceberg. This doesn't stop. "Just push past your limits, it is worth it, it creates endurance" is not how it works. If that worked, disabled people would have unlimited endurance and rule the world. Unstoppable.

Anyway, that's my rant. Am sore, but happy. Currently doing small things in the home and leaving things that can wait to wait.

[alostlittleriverlotus]

rant post

I love that every day is a new day of pain. Yesterday, both my knees were hurting so bad I could barely walk. Today, it's my back + my sinuses have gone into my throat so now I feel sick not to mention my eyes are really painful today so I need my eye drops.

Every day it's something new. I don't even wanna get outta bed most days cause of it. And yet, my family will still never believe I'm disabled. This could have been prevented by taking me to the doctor whenever I said I had pain which I've been saying since childhood, but no. They wanted to believe it was just me needing exercise.

I can't even sit up today without feeling dizzy and in pain. I'm only up now cause my parents are gone and I have responsibilities plus I need food. But I can't wait to get back to bed with water and food, taken some Advil, and to just do nothing. Not to mention I am feeling the fatigue especially today.

Luckily I made sure all my ice packs were frozen and I have a heating pad so I'll be fine. It just sucks having a lazy day like this cause of pain. Forced lazy days cause of disability aren't fucking fine, they're exhausting and I spend all day in pain despite what I do to help it. And my parents still want me to get a job. I can barely leave my room.

I'm just frustrated and tired while waiting on my food to cook.

[glitchdollmemoria]

oh hey btw, apparently tumblr mobile now has an option to report ads for having flashing lights, if you click the three dots in the top right corner it should show up. not sure how long thats been there but i dont remember it being there at least a few months back, i would venture to guess it came with the recent update but shrug. fucking ridiculous that they cant just not put flashing ads in our faces in the first place, but at least this is an option.

people who dont have issues with flashing lights are allowed and encouraged to reblog

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

[cr-pplepunx]

if youre considering using a mobility aid, youre probably thinking about getting a cane. even if it seems like youre issues arent bad enough, you should probably still consider other mobility aids. please look into the pros and cons of several different mobility aids, especially in conjunction with your specific disability/diagnosis/needs.

i got a cane at first because i thought my issues were "mild" and therefore i needed a "mild" mobility aid. but canes are moreso for stability than support. i damaged my wrist and worsened my scoliosis by deciding to use a cane without an educated opinion.

i now use forearm crutches primarily, a rollator for longer outings, and a wheelchair for worse days and longer events. dont make the same mistake as 16-year-old me. dont choose your mobility aid based on palatability, consider your needs and address your internalized ableism if need be.

[anxious-and-in-pain]

it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

[spookietrex]

I got new compression gloves and ankle sleeves and I actually slept through the night for the first time in months.

My mobility aids now include:

- a purple foldable cane

-a blue walker with a glow in the dark dinosaur basket I made (2 wheels in front)

- a blue rollator (4 wheels)

- a blue wheelchair

Hell yeah! I can leave my house. I got a disability lawyer. My PCP confirmed she understands I can't work and is willing to help me get disability.

[narcatsisst]

something i think a lot of able bodied people dont understand is that being chronically ill affects your emotions. constantly being exhausted and feeling bad is going to make you sad or depressed or angry or jealous. constantly being in pain is going to affect your mental health. never feeling "good" is obviously going to affect the way you act.

[frenchfrysword]

How many mystery symptoms can a dude have? I know, realistically, it's just my body shutting down from a decade+ of stress, but I often wonder (or maybe hope) that there's like a medical explanation behind it that can be treated. Some weird as syndrome that sums up all my weird ailments.

[alostlittleriverlotus]

My friend was describing their fatigue and I just sarcastically go "wow, that sounds hard. I wonder what that's like." (/lh)

I love it when my friend finally has to deal with a fraction of what I deal with.

I get sarcastic and remind her this is what I deal with nearly constantly, but then I validate her. I use it as a teaching moment so she can better understand my disabilities and struggles, but I do validate her because I never mean it to be like "I have it harder so stop complaining." Nah cause her fatigue is valid too. I just use the opportunity so she can better understand my struggles since I know it isn't always easy for her to imagine what it's like :p cause she's so important to me.

He's a real sweetheart and has been working hard at beauty school lately. I'm actually SO proud of him and he genuinely looks so mature. I love them so much.

. . ★ . .

(for ref: friend's pronouns are she/they/he)

[stellaltumi]

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.