"“consistency is key” doesn’t apply to many disabled people."

southwestforests

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Just saw this post from January 25. I have not looked at anything about the person who wrote it.
It definitely applies to having ME/CFS,

zylahbee
Jan 25

“consistency is key” doesn’t apply to many disabled people.

going to the doctor and having them tell me that, and that i need to stick to a schedule they have deemed appropriate is completely comedic.

what about the fact that my health and ability to do anything is a constant gamble? it can change drastically and almost instantly at any given time.

what about how right now i can stand up and make myself breakfast, but by lunch time? who knows. i may be unable to even sit up.

how do u listen to me explain that i dont have a daily or weekly schedule because of how unpredictable my health is, and reply by giving me a schedule.

do you not think i have tried to stick to a routine and schedule like all the healthy people around me??

all i see is people with consistency. i grew up thinking i was broken because i couldnt. i have pushed myself to breaking points trying to fit your mould of success and health.

im sorry if you experience this too. im going to make another post about what consistency can look like for me and other disabled people. because while we dont fit the classic definition of it, there are ways we can make our own version. i wish doctors would listen to me and would help me find my version instead of insisting on theirs, but they havent, so i wanna try help others find theirs. prt. 2 here (now going to make multiple more posts on this topic lol)

 

southwestforests

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And here's part 2 they mentioned,

zylahbee
Feb 24

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.


 

southwestforests

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a term and it might not be politically correct anymore
I do not now about the rest of society and the rest of social media, but '#crip time' is in use on Tumblr.

And as recently as a 12 hours ago reblog of a Feb 24 post,


And another post linked to this 2017 article,

https://dsq-sds.org/index.php/dsq/article/view/5824/4684

I keep returning in my mind to a moment in a doctor's office in the summer of 1995. I was twenty-three years old and had recently entered the world of disabling illness, had crossed some invisible and excruciating threshold from being someone with health problems to being a problem, apparently insolvable. I had come to this doctor, a psychiatrist, after many months and many doctors, searching for a diagnosis to explain my constant pain, weight loss, wavering legs, and thumping heart. Like the others, this doctor didn't have an answer. What he did offer, though, was remarkable compassion and a willingness to listen.

What I keep coming back to is this one thing he said to me. "You've lost so many things already in your life: your parents, your health, your independence. You have a level of loss we would usually expect to see in someone in their seventies."

Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time.

Oh well, so much for consistency,

A year after I sat in that psychiatrist's office, learning to recognize what I had lost, I was back on the path once again to health, or to what I wanted to believe would be health. I was practicing tai chi every day, learning how to move slowly and gracefully through the world, as part of a group all making the same movements, synchronized, flowing. I felt more at home in my body, with other people's bodies, than I ever had.

Then it all came apart. My tai chi instructor kept explaining to me how to align my hips, kept looking at me quizzically and saying, "I don't know what you're doing that's wrong." Then one day, at home, I reached up for a book on a shelf and felt my hip separate from my body, pain zinging down my leg which quickly turned numb. It happened in a flash, and it also lasted forever. It took me six long months in physical therapy to get back to where I could walk more than a few steps, and I was never again able to walk as far as I had before. Tai chi, which I loved deeply and which was supposed to fix me, broke me instead. It moved in one direction and my body moved in another.

And so, I moved backward instead of forward, not into a state of health, but further into the world of disability, the world I was now coming to understand as my own. I moved from being someone who kept getting sick, over and over, to someone who was sick, all the time, whose inner clock was attuned to my own physical state rather than the external routines of a society ordered around bodies that were not like mine.
 
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bad1080

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I do not now about the rest of society and the rest of social media, but '#crip time' is in use on Tumblr.
i said it because i can't keep up with what's deemed offensive these days while at the same time trying to not step on anybody's toes, but i feel like "cripple" is an outdated term.

By the 1970s, the word generally came to be regarded as pejorative when used for people with disabilities.
from: https://en.wikipedia.org/wiki/Cripple

Crip, slang for cripple, is a term in the process of being reclaimed by disabled people.[1][2]
from: https://en.wikipedia.org/wiki/Crip_(disability_term)

well would you look at that, so i guess it's ok to use if you are disabled. tmyk...
 

Dysfunkion

Senior Member
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491
I can keep what I call a skeleton routine. I wake up every morning when I wake up that isn't a set time even though I have my alarm, put on the coffee, get my breakfast, and do very simple things like that at general times every day but even this often gets thrown off. I make plans all the time when I'm feeling a bit better but can't follow through with them because my symptom patterns can be so unpredictable. If I'm doing reactiopn experiments and trying new things like I am right now that unpredictability by the day gets even more varied. There's just no telling what I'm going to be able to do outside of my skeleton schedule that keeps me alive. I for example was going to watch a show tonight but after tonight's symptom swing I couldn't even do that. At some point I put on a low volume youtube video in the background but it was essentially just noise to my brain, it couldn't take in anything that was going on or experience any enjoyment in it.The only thing I'm capable of when the dust really kicks up like this is sleeping and the rest is ironically terrible too. I will black out like a rock yet will get no refreshment from the rest, usually my alarm will go off but I'll just pass out again for hours.
 

southwestforests

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Missouri
I can keep what I call a skeleton routine. I wake up every morning when I wake up that isn't a set time even though I have my alarm,
I like that you gave input, I don't really like the struggles you are having, this disease and other things which happen along with it, can and do rough a person up pretty well.

Mentioning alarm clock brings to mind that I still keep it set at 6am as a sort of anchor point in the day.
Sometimes I turn it off then hours later I'm finally good for getting up.
Sometimes like right now I'm wide awake at 4am.
There's just no telling what this body is going to do.
Or not do.
 

Dysfunkion

Senior Member
Messages
491
I like that you gave input, I don't really like the struggles you are having, this disease and other things which happen along with it, can and do rough a person up pretty well.

Mentioning alarm clock brings to mind that I still keep it set at 6am as a sort of anchor point in the day.
Sometimes I turn it off then hours later I'm finally good for getting up.
Sometimes like right now I'm wide awake at 4am.
There's just no telling what this body is going to do.
Or not do.

I feel for all of us and there are many here in even worse boats,, often i have no words for how severe it can get even having been down there at one point myself. I never reached bed bound though.

Yes I treat the 6 AM alarm as like an anchor point so I know what time it is but will just go back to sleep anyways often. I'm a light sleep despite how easily I pass out. Not to mention I gotta be up even earlier for work most of the week. When you have no choice your body has a way of surviving but the results aren't pretty. Often by Friday its very difficult to even speak and I am constantly out of breath with aches everywhere in my body. If I wasn't drinking black coffee like a fish I wouldn't be able to do it period. By Thursday-Friday though I can barely feel any stimulation, it just keeps things running.
 
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