#daily living activity

[alex2xander]

Shout out to all the tumblr users dealing with daily fatigue and severe depression.

Respect to those who have medium and high support needs who need assistance with bodily functions.

Love to those who cannot safely leave their bedrooms or home due to the pandemic and lack of societal support.

Care to those who spend the majority of their life online because this is the only way they can socialize with the outside world

There are so many of us trying to make it day to day. I love you and you're not alone in this.

I love you people who have to be carried, lifted, or escorted in mobility aids to do daily living tasks

I love you people who depend entirely on your cariers and personal aids for every function

I love you people who haven't been able to shower in over a week and therefore have tangled or matted hair and body odour

I love you people who have been wearing the same clothes for over a week

I love you people who dont have the energy to get out of bed to use the bathroom and need to use diapers or a bed pan

I love you people who havent been able to cook their own meal in months

I love you people who have piles of dirty clothes and trash scattered around their room

I love you people who uncontrollably drool on yourself and your property

I love you people who have slowly lost mobility and function over time and are adjusting to their new life

#disability appreciation #disability love #disabled love #disability #disabled #disability awareness #medium support needs #high support needs #severe depression #fatigue #disabled appreciation #disability advocacy #bodily function #disabled hygiene #daily living activity #activities of daily living #i love you #spoonie #chronic illness #mobility #chronically ill #bodily fluids #dirty clothes #dirty room #isolation

[chronicallycouchbound]

I feel like people often don’t talk about the experiences of disabled people who have caretakers because so much of the conversation is about us—not including us.

I receive in home care for 30 hours a week (+ 4 hours/week for respite). This is paid for by Medicaid (state insurance). Outside of paid hours, my primary caretakers care for me unpaid and assist me most of the time. I’m very rarely left alone due to my high support needs. Often, when I am left alone, I am completely bedridden or at minimum housebound. I have frequent emergency life threatening health problems, falls, and serious injuries even with support in place, and these things significantly increase when I’m on my own.

I’m extremely lucky that my paid caretakers are my partner, my sister (the only family member I have regular contact with, I’m estranged from the rest of my immediate family and most of my extended family) and my best friend.

I used to have agency staffing which was horrible for me and borderline traumatic. At several points, before doing the self directed care option (which allows me to choose my own staff, hire and train them myself and dictate hours for them), I opted to not have any staffing. I was regularly in the emergency room. I can’t drive, so I was having to walk and if I was lucky enough to be able to take the bus on occasion or get a ride from a Facebook acquaintance, they were few and far in between. I don’t have family support, and even my sister who is supportive wasn’t living in the state at the time and doesn’t have a car most of the time.

And before I could even choose which staffing option, even though medically it had been deemed essential for me to have in home care, even though my insurance covered it, I had to wait several years (I was 18 when I was approved) until I was 21 to qualify to start. The reason why: I was legally an “adult disabled child” because of my high support needs (which is funny because I STILL don’t have SSI at age 24) and thus legally unable to consent to my own care plan. I needed a blood relative to consent, and that same blood relative (who had to have proof of such!) couldn’t care for me. At the time, my sister was the only person who could’ve been my caregiver and also she is the only verifiable blood relative I have contact with for safety reasons, and my only relative on this side of the USA.

The first business day after my 21st birthday I immediately got things set up to get in home care.

This is out of date, I get assistance with more than just these highlighted ADL (activities of daily living) tasks now.

In short: my day-to-day life is entirely dependent on others.

And there’s power imbalances that exist between me and my caregivers, even with my current caregivers being amazing and anti-ableist. They will always exist. We talk about the power dynamics of me being dependent on them for my survival, and how heavy that weight can be for each of us.

Having caregivers often means that accessibility is extra difficult— I’ve been told straight up multiple times that I can’t have assistance from my caregivers to help me change in a changing room when we’re out shopping. That they can’t go into the bathroom with me, that they can’t help me get un/dressed during appointments, that they can’t come into spaces with me.

I’ve been denied access to psychiatric care because I can’t do my daily living tasks (ADLs- the highlighted items) independently. And when I’m in a hospital or emergency room, I can’t have my in home workers be paid to care for me, there’s an expectation that the nursing staff at the hospital will do it. Even though my caregivers were specifically trained to learn my body and needs for weeks and have been working with me for years. I have severe cPTSD and showering in front of a stranger is something I cannot do. I would rather fall or faint or get injured or just not shower than deal with that. But I’m expected to just let anyone have access to my body just because I’m physically disabled and need support.

When I faint/fall/get injured/have life threatening health issues arise while I’m not clothed, or when I’m otherwise vulnerable, I’m supposed to let strangers just touch me however they want to. I have to show them my chest (for my cardiac care) and let them poke and examine me. I can’t object without losing access to vital care.

I have agency. I have rights. I have autonomy. I deserve to be able to exercise these things.

#chronically couchbound #disability #disabled #disabled pride #cripple punk #cripplepunk #disability pride #high support needs #ableism #professional caregiver #activities of daily living #ADL #medicaid #healthcare #in home care #home care #home care aids #nothing about us without us

[reasonablysurmised]

Me, naive, foolish, reading the Dracula Daily updates: Maybe this time Lucy really is better!

Me, upon reading the next day's update: Once again I have been Bramboozled.

#dracula daily #LET MY CHILDREN LIVE #lucy westenra prayer circle activated once more

[chthonic-cassandra]

So striking how at once a) three days of work travel can render me so extremely incapable of meeting my basic needs and thus fuck up my body really badly really fast and then b) how much better a night in my own bed next to my partner and a few cups of good tea can make me feel.

#this is all part of the accepting that i'm actually disabled thing #without routines and predictability and really specific conditions and also concrete support from my partner #i cannot actually reliably do activities of daily living! #and that feels shameful to admit and like i should be able to sleep and obtain food & c #but it's actually the reality of my life and that has to be okay to work around #anyway i hope the people i was traveling to train got a lot out of it #personal #internalized ableism //

[awtistix]

Eating is hard!! Making food is hard!!! Getting everything out and together. The numbers to measure and heat up stuff. It gets so scrambled in my brain. I stare and stare and stare. I still forget and and get confused. It stops me from eating. I also don't even remember to eat a lot of the time. I have been underweight because of these things. Eating is very slow and I often need reminders to keep eating to finish food.

1. Grocery - I get lost and I wander (need find exit and find person task) + I can't drive 2. Making food - scrambled and confused by numbers and ingredients and time to heat up 3. Planning - forget to eat 4. Slow eating and often forget to finish food without prompting

#i typey type #iadl #iadls #instrumental activities of daily living #autism #neurodevelopmental conditions #autism spectrum disorder #asd #neurodevelopmental condition #neurodivergent #neurodivergence #neurodiversity #meal preparation #autistic #actually autistic #vent post #tw vent

[chronicsymptomsyndrome]

Mentally preparing to physically prepare to shower wish me luck lol

#audhd problems #executive dysfunction #sensory issues #autistic things #autistic thoughts #i hate showering #adhd autistic #neurodiversity #activities of daily living #self care #autistic self care #autistic trauma #adhd paralysis #adhd brain #adhd problems #adhd life #audhd brain #audhd struggles #adhd experience #adhd adult #autistic adult #autistic experiences #audhd life #adhd mood #audhd creature #audhd things #comorbidities #chronic fatigue #chronic illness #chronic illness vent

[cairamelcoffee]

palestinian doctors refused to leave their patients when they could've and journalists came back to targeted hospitals from safe places so that if there was a massacre people would know

#if these people can risk their lives for each other daily #you can skip an overpriced cup of coffee #and you can actually respect these journalists that are also be actively targeted by sharing what they have to say #so much fucking grief i pray they know how much hope they give me #free palestine #from the river to the sea palestine will be free #palestine

[dogpantry]

#yeah. #healthcare is. #i wish i could explain how i love my career #but hate the system it lives in #i’m so tired. all the time #i can’t explain this kind of tired? #every day is something new. something sad. something awful #there have been two active threats against the hospital that required a lockdown #in just a few months. and i can’t even come home and talk about it all #because i can’t dump the daily trauma on my spouse or friends #i’m exhausted haha

[sleep-safe]

people who need assistance to use the bathroom are cool and normal and awesome and i mean this genuinely with no exceptions.

#disability pride #disability #activities of daily living #support #high support needs #als #cp #mine

[crengarrion]

few things are as touching as the appreciation hardworking, heartfelt, passionate, dedicated young people express when you support them. sometimes this appreciation is shown by those young people sending you unedited footage of their professional wrestling ambulance matches and it fucking rules.

#[ whispers ] #mango brought to my attention a ugandan pro wrestling promotion fundraising for their first wrestling ring and i decided to reach out #to them because i made a post raising awareness on my wrestling sideblog. they asked me to record a video saying hello to a young lady #wrestler of theirs i said i'm a fan of. so she can record a video saying hello back to me! and then sent me exclusive footage of a match! #i cannot stress this enough: reach out to dreamers. reach out to the people making their dreams reality. to artists and musicians and #writers and people blogging about their cultures' food and their daily lived experiences and dedicating their lives to community outreach #and harm reduction and activism and rescuing animals and raising awareness. tell the people making what you love that you love it and #admire their hard work. thank the person bagging your groceries and driving your bus with a big smile. tell the makeup artist standing with #palestine openly what that means to you. one of my favourite authors is on tumblr and i'm reaching out to her after i read her new book that #just published. one of my friends became a well known poet in pakistan because a group of us all sent CDs of our spoken word poetry to each #other and made all of our friends listen. i'm friends with youtubers because i've been vocally supporting their videos since pre-YT or early #into their channels and have met up with some of them to hang out and talk shop. don't just cheer people on silently! let them know! #long post #sorry. overcome by my simple love for humanity in the midst of unfathomably dark times. it will happen again

[pivotpathways]

Fitness isn't just a gym game.

It's about being active in your daily life.

Walk more, take the stairs, play a sport.

Make movement a part of your lifestyle, not just a routine.

#active living #daily moment #healthy habits #fitness #health & fitness

[qangelbluebird]

Going from dead/non-updating media to technically-updating-but-games-take-years-to-make media to qsmp is wild. From nothing to “the link is still missing where is missing link<-(it’s been a year)” to “do you remember,,,, QSMP,,,, it’s been decades<-(it has been five days. It is coming back in another five days. You people are fascinating(pos))”

#the link that is missing is kingdom hearts missing link btw. where is she #I am saying all of this affectionately y’all were being fed daily for ages it makes sense you’d miss it even for a bit #the dramatics is just very funny. we have fun here，if this was any other media you people would have starved/j #shout out to qsmp for being that good that people freak out when it’s gone for a few days #just all the fandoms I’ve been in before have been for wildly different types of media. the closest would have been hlvrai and #I got into that after it ended. seeing how fandom works for such an active story with so many different perspectives to watch from and #so many languages all at the same time is so interesting to me. hearing about things happening second hand from people live as they are #happening is wild. the interesting new lore happenings and the mundane yet entertaining chaos of non-lore days #the clips in languages I don’t speak being lovingly translated by people who are excited to share their sides of this story #how this is one story but it is also a thousand other stories each just as interesting and the fact that you people will tell us about #the bits that you focus on that we might have missed in a way that can spark our own interest and just #I love this thing I love it it’s great #this turned into me just talking about how cool qsmp is and the pocket of fans I follow huh. no regrets #blue babbles

[madtomedgar]

I think if you can understand that someone can be good at text analysis and bad at spelling, you should also be able to understand how someone can have solid and interesting and well reasoned ideas about societal organization but be bad at laundry and taxes.

#like. yes the mundane basics of life are incredibly difficult for some people #that doesnt mean everything else about them is without value #or that they should hide in a shame hole rather than like. #expressing themselves publicly with allegedly too much confidence #for someone who cant balance a checkbook #idk im getting really tired of the dunks being like #lol look at this person who struggles with activities of daily living #thats called a disability and is not generally regarded as a personal failing #by people who dont have their heads up their ass

[snixx]

middle/high school me didn't form parasocial relationships with celebrities they formed serial parasocial relationships with random lesbian 20-something bloggers with a penchant for being 24/7 haters on increasingly obscure platforms (often that they had abandoned years ago) and would stay up till like 4am every night reading their posts from like five years back and collecting the Lore

#if you look closely i may still not totally be over that tendency - [gunshots] #and it was hilarious id know ALL these details about their lives ok. from their old abandoned blog on wordpress dot com #and i would stalk them and try to find if they were still active somewhere #oh the stories #so first was the forums on fanfiction dot net. i would stalk them daily #and these people would overshare everything about their lives on the internet and id meticulously collect all the details and fantasize #about joining their group someday #and sometimes i would leave reviews on their stories and mention some detail i picked up and they'd be like wait how'd you know that - #and i would make up some shoddy excuse like i did not know every single detail about all their lives #they used to have so much drama too it was hilarious. like full out brawls and catfights #and then there was goodreads. i would get obsessed with a reviewer and stalk hundreds of their reviews #and slowly put together pieces of their life and personality i would never use #there was this one reviewer in particular called emma and she's probably like 25 now?? anyway she was my IDOL in eighth grade #and her entire brand was she loved leaving long rambly one star reviews #and then my blogging era. there were a few then but the most notable was this girl called elle #i know what university she studies at i know her birthday i know all her family drama her girlfriends which taylor swift songs she thinks #are the gayest and she doesn't even know i exist lol #anyway she was A HUGE ONE. she's still influenced such a huge part of my personality to date #and she recommended me so many of my all time favourite books and she was the reason i got into glee #anywayy i stalked her all the way onto tumblr and even summoned up the courage to send her an ask one time #she was the reason i realised i was sapphic actually. and the person who made me the obsessive sapphic media enthusiast i am today #i remember having the awakening at 4am reading her blog posts from years ago on my kindle and listening to all too well #which btw she considered the gayest song of all time so i naturally did too #and i got reallyyy into sapphic media after that #then there was this blogger who went by may #then of course i came on here 💀 and the rest is history #definitely had a bunch of those here too there was this woman named heather #and i was perennially stalking her blog she randomly left tumblr after falling in love with a guy #and making this dramatic post about how she had a burning red love with lots of women in her time but now her love with this guy was golden #noooooo i ran out of tags compulsory stop to my obsessive rant ig

[compacflt]

do you have a fav icemav fic?

ive read exactly three top gun fics in total so yes but also statistically no lol.

dancingdisaster (?)’s “Men Like Us” was the first top gun fic i ever read, back when i was a hangster-only guy, and it opened my third eye as to “omg what if ice survived all the way through tgm?” which then in my weird little brain turned into -> “omg how would ice have reacted to mav dying?” -> “omg what if mav died before ice ever got to say he loved him?!!!!” -> “omg i have to write that fic rn.” so that would be the fic I would cite as most obviously having had an effect on me & the story I wrote (rooster going to boot camp & ocs etc)

but yeah i don’t read a lot of tg fic because i try not to read fic for fandoms im actively writing in. the other two fics that i have read are time to let go (idk who by sry) and my beloved mutual sliderkerner’s (vulcanx on ao3) excellent “leave a tender moment alone,” which you should all be reading rn if u aren’t already. But that’s pretty much it

So if you were wondering why I’m so myopic/blinkered about top gun stuff/act like my interpretation is the only one, it’s because i literally do not consume any tg content that is not my own lmao. i am a top gun poaster, not a top gun consoomer. TG isn’t even my most brainwormy fandom (that’s succession rn)—TG is just the fandom i post for. but i have no idea what’s going on in the rest of the fandom/what other ppl think about ice & mav (or even what people think about MY ice & mav). i have no idea if my thoughts are original at this point, I’m just poasting thru it & continually grateful people are here to listen

#i was a diehard hangster-only guy until i considered the ice lives AU #(dropping my rooster and hangman dolls on the floor) I DONT WANT TO PLAY WITH YOU ANYMORE #OLD MEN ONLY!!! #there's a universe in which I wrote 300k words of hangster fanfic instead #oh well. #anyway sorry i can’t rec more fics i just don’t read any #i do regret that im not a more active member of the fandom #but i only barely have time for my daily 10 am post here as it is #Ty for the ask! #asks #fic rec

[meatlessmcmuffin]

twitter suspends me for "violent speech" seconds after i make a joke about tapeworm physiology but the overwhelming amount of people who responded to wednesdays shooting by blaming lewistons somali community are just fine? fuck offff

#like getting suspended was funny for a second and then i remembered the actual droves of violent speech under headlines whilei was trying to #make sure my classmate and her children were safe and checking in with my coworkers who go to lewiston auburn all the time. #when the pictures came out immediately somebody expressed disappointment that he wasnt black #every other comment stated “hes obviously middle eastern look he has middle eastern features” on a super blurry security cam screenshot. #im so sick of it. people died. we lost 4 members of the deaf community and at least 2 more were injured. one of the victims was 14 years ol #this is jjust i mean. on top of horrific zionist comments that go undetected because people controlling media and censorship just dont care #and actively promote israel propoganda and censorship of palestinian voices and resistance #sorry my thoughts are all oer the place. i am trying to continue to spread awareness and updates on palestine but this shooting happened #literally less than half an hour from where i live and work. lewistons community is intertwined with my daily life so i will be pretty voca #about it on top of sharing as much as i can on palestine #okay also to clarify i do not want to suggest what happened here is more important than what is going on in gaza rn. #i do not want to draw attention away from this genocide and i firmly believe focusing as much energy as possible into spreading awareness a #and donating/protesting/campaigning anything whatever is possible is most important right now. #overwhelmed as i am by the tragedy in my community it will never stop me from advocating for palestines freedom. i do not believe anyone #not directly affected has a right to “take a break” from this issue