Mars

Inactive because of health issues I put the chronic in chronic

[martindykewood]

idk what other disabled person needs to hear this but if you need someone to do something for you that would be very difficult for you to do but very easy for them to do, that is a small favor. you dont have to feel gratitude and guilt at scale based on how hard it would be for you to do it disabledly

[longdistancepyromania]

My chronic pain doctor suggested I exercise more

I asked him “how?”

He looked confused. Said I should try a bit every day

I said “not when, how?” I asked what exercises I should do

He suggested half a dozen options that had all been explicitly banned by other doctors. I’m not allowed to run. I’m not allowed to bike. I’m not allowed to use my rowing machine or my punching bag.

I walk my dog whenever I have the energy and when it doesn’t hurt too much

What else can I do?

He told me I should exercise more

And then he changed the subject.

[spooniestrong]

Next time a doctor tells me that, I'm asking "how?"

[yournewfriendshouse]

the first thing I did in my journey out of bed was kind of an accidental win. I bought a weighted blanket when I didn’t even have a gp because my other one left the area just before the pandemic hit, and didn’t give me any suggestions where to go when I was struggling a lot with brain fog; so I was without support or painkillers for a year.

it’s pale pink and fluffy. lighter than the one the company recommended for my age and size, and it’s still very heavy for me. the way all of the beads pull in such an unwieldy fashion can make it difficult to pull onto the bed. I could only handle half an hour at a time at the beginning.

but slowly, completely by accident, it actually helped. especially my core muscles and thighs from turning over in bed. I was just feeling anxious. I had no room in my head for thoughts of exercise. but I actually put on a scant bit of muscle. it was crazy

the second bit of exercise I started doing was to get out of bed and sit in a chair by the window instead of laying in bed.

the third, wearing clothes. showering a little more often. putting two braids in my hair instead of one.

then doing laundry

then learning to cook again, because brain fog had robbed me of most of what I knew.

and of course cooking meant more and better food, which gave me more energy and helped my body get a bit stronger

in there were stretches. I had no room in my head for videos or books so I did the three I could still remember from back when I saw a good physio years ago. I could only do three repeats at first, not even the five that was a recommended set.

all of that helped me get strong enough to make it to sit through a two day course at the pain clinic, and thankfully they weren’t like OP’s doctor, they were adamant that pacing is vital to any improvement if you have chronic pain. pushing too far too fast is the enemy. low and slow. persistence. is key

it was crazy to sit in that chair with my blanket and a pillow to hold onto so I could lean on it, and prop myself up, because a lot of what they said I’d kind of worked out. but they were scientists and doctors who had all experienced chronic pain and so they had the terminology and were able to piece it together

and most of all they vindicated my own course that I’d stepped on by accident.

and finally when my new gp asked me every month whether I’d thought about taking some walks I was able to say ‘I believe I’ll get there, but not yet. and the pain climic agree with me.’

and I did get there. I don’t walk as much as she would like but honestly I don’t think she’ll ever be happy lmao

the thing most doctors, even many chronic illness specialists and chronic pain specialists fail to account for is that the activity you’re already doing is important (vital, even, because personal maintenance and living life is very important!) and it’s already exercise and strain and very energy consumptive. it counts! and also they greatly underestimate the incredible value of seriously seriously small, tiny, incremental steps that can actually account for massive improvement over time for the chronically ill—if we’re allowed to pace ourselves properly, for, like…ever and not just a certain period of time

I don’t know your pain, I don’t know your body. but I recommend that you sit down and think about—or perhaps actually just take note over the course of your days and weeks, what activity you’re already doing. maybe at first you’ll only notice when something makes you hurt, but take note of it. because that matters*. and you can build off of that. slowly slowly slowly.

you’re a persistence predator. we walk slower, we do everything slower; and many of us will never get to a place where the average physio will approve of our condition.

but fuck them. we can build muscle; I’ve seen it. we can gain small amounts of improvement without undoing all of the good work we put in. but we have to be patient, and persistent, and we have to be cautious and we have to be brave

*I do feel the need to add that I also learned how to arrange my day so that some activities hurt less. and I learned over the course of a year —and really i’m still learning—to see my days in fifteen minute to half hour increments because I have to consider PEM as well. stretches have to happen if I sit in the chair too long. especially if I’m on my computer. a very short walk is best if I’ve been out and sitting at tables because that puts so much strain on my back. it takes spoons and it’s really tempting to think it’s too much but I generally find the pain the next day if I don’t takes more spoons than if I do. most activities at home are done in fifteen minute on thirty minute off shifts. when I say slow I mean slow

that’s not always possible. I don’t have kids, and just sent the cat I was living with to another home with someone who could bend without crying all the time. I have time and space to set that pace and not everyone can. life can be complicated.

but

you can exercise. you just need to vastly vastly change what the word exercise movement activity mean for you.

anyway I hope that helps

big pain day today so I’m feeling very bitey esp about doctors

[sigridstumb]

you’re a persistence predator.

[this-is-fatphobia]

@this-is-ableism Not ableism, but I think it could be useful for people on your blog as well as here!

As for my followers and anyone who sees this, I hope this helps. When Doctors don't give real solutions to pain/mobility issues/chronic illness symptoms because they brush it off as a "weight problem", carefully finding what you can do to strengthen your body and lessen pain can be vital.

[this-is-ableism]

this is solidarity.

[painonmars]

Genuinely baffled that i have to pay my doctors to write a note allowing me to get tattoos.

[cripinpain]

when i say that i can’t do something due to my disabilities, like the dishes or mop the floors, the thing i hate most is hearing other disabled people go “well i can’t do it either but i don’t have a choice so i do it anyways” because like, there are those of us who can’t do a thing under no circumstances. it doesn’t matter if i don’t have a choice or if im forced to do it, i still can’t.

my entire apartment looks like shit, it’s very dusty, there’s dirt all over the floors, i have no clean dishes & im tuning out of bowls/plates & cutlery. and i can’t do anything about it. like literally.

for some of us, “i can’t do it” very literally means I CANT DO IT.

[this is MAINLY about physical disability, but people who can ACTUALLY relate to this even if it’s not because of physical disability can reblog & share their thoughts etc.]

[wheelie-sick]

I feel like I have so much solidarity with fat people as a wheelchair user because we both take up more space than thin pedestrians and we both have people refuse to move for us when we need to get somewhere.

[flowercrowncrip]

I got asked by a stranger again tonight if they could have a go on my wheelchair, and I just really want to know what is going through peoples minds when they ask this? Like, do they want to sit in my lap? Do they expect me to like, lie on the floor while they make off with my very expensive very difficult to replace power chair? …What's the plan?

[bebsi-cola]

abled bodied people also need to understand that, for physically disabled people resting isn't "free time" that you can use up with assigning us tasks or duties because you're busy. it's an essential part of managing disability and some of us have a hard limit that we're avoiding by having days where we do nothing.

[painonmars]

I wish people would stop saying ‘maybe one day’ when I tell them I can’t do something.

No

I’m disabled

With a degenerative condition

There will be no ‘one day’

Let that be okay

[curlyhaircripplegf]

Hot take it’s not actually accessible if I have to ask an abled body person for help or assistance

[bebsi-cola]

disability benefits are a lifeline for many of us. sometimes that lifeline is a rope just long enough to hang ourselves with. but i appreciate that it's an option. and i want people to remember that there are disabled people all over the world, including un countries that have absolutely no formal disability support or financial aid. like not even the bare minimum. disability rights is for disabled people everywhere

[five-thousand-loaves-of-bread]

not all wheelchair users use manual wheelchair

some wheelchair users use giant group 3 CRT power chair that weigh 300lb+ / 136kg+ n cannot collapse or folded must be transported by big vehicle with wheelchair lift or ramp. that wide & bulky n can’t squeeze through tight space.

but also. not all manual wheelchair user use custom ultra light active wheelchair with low backrests, that really light, that easily maneuverable, that narrow n easy fit through tight space with tight turning radius, that can be collapse n put into small car trunk easily conveniently

some wheelchair users use hospital or off-the-rack wheelchair that really hard to use

some wheelchair users fat n so their wheelchair need be wide

some manual wheelchair users use manual tilt in space wheelchair

some manual wheelchair users use custom wheelchair, often even with ultra light frame, but their seating positioning needs make custom wheelchair bulky & big & heavy. over 50 lb / 22kg. some even approach 100 lb / 45 kg (frame for manual tilt in space can be heavyyyyy). my wheelchair like this n it meet (some of) my needs but it inconvenient as hell n absolutely not light n airy. n wish people like. remember we exist

[nondivisable]

me carrying a stuffed animal around while being disabled is not "infantilizing disability"

I am an actually disabled person who carries a stuffed animal as comfort bc disability is hard

what's "infantilizing disability" is assuming that just bc I carry a stuffed animal I'm not capable of making decisions for myself. or that having a stuffed animal makes me a less serious, adult person than you are.

[painonmars]

Sometimes it’s good to do things that are reckless in an effort to understand your limitations…..

Is what I’m trying to tell myself after I attempted ice skating and ended up fainting with a sprained ankle.

[cripinpain]

physically disabled people who are also fat deserve mobility aids just as much as physically disabled people who are skinny.

we also deserve to have mobility aids that fit us, we shouldn’t have to settle for ones that don’t meet our needs. whether it’s having a high enough weight limit or being wide enough or being sturdy enough, we deserve that.

it doesn’t even matter whether a person is fat because of their disability/ies or if they’re disabled because they’re fat. that person still deserve good mobility aids that meet their needs.

[this is a post about fatness and physical disability, derail and i will steal your mail for three months and two days]

[crippled-peeper]

If you’re physically disabled and you’re reading this you did a good job today

[cripinpain]

i’ve said it before but i think it’s important so; someone being more affected by a disability than you does not invalidate your struggles with said disability. it doesn’t not mean you aren’t disabled, it just means someone has a harder time with it.

there will always be someone more affected than you are and i know it’s hard to accept because it can feel invalidating especially if people are constantly telling you that someone has it worse. but its more “someone has it worse but that doesn’t mean you’re not struggling” and less of “someone has it worse so you’re not really disabled”. and yeah many people do see it the second way but that is not reality, people will always be ignorant about how disability works but you have to get it in your head that it’s not the reality we live in.

it’s okay to struggle with this, many people do, but it’s not okay to take it out on these people who do struggle more! which means if someone makes a post talking about their struggles, it is not okay for you to make assumptions or attack this person because you feel invalidated as the majority of the time, people are not out to personally attack you, they’re just talking about something they are affected by.

[bebsi-cola]

shout out to people dealing with (imo) one of the nastiest symptoms out there. goddamn nausea. it's so difficult and you're dealing with it