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@overexcitedneurons
No, Yoga doesn't cure everything. No, yoga doesn't make everything all better suddenly.
Yoga just is the only exercise I can do slightly more consistently, because sometimes it's just lying on the floor and that's all I have in me. If you're doing Yoga and you happen to also have a chronic condition, this teacher at least gets how hard that can be and doesn't push you. I like her philosophy on doing what feels good already.
We need to start sexualizing mobility aids
[Text ID: torrin a. greathouse
SICK4SICK
I think my lover's cane is sexy. The way they walk like a rainstorm stumbles slow across the landscape. How, with fingers laced together, our boots & canes click in time-unsteady rhythm of a metronome's limp wrist. All sway & swish, first person I ever saw walk with a lisp. Call this our love language of unspokens: We share so many symptoms, the first time we thought to hyphenate our names was, playfully, to christen ourselves a new disorder. We trade tips on medication, on how to weather what prescriptions make you sick to [maybe] make you well. We make toasts with acetaminophen bought in bulk. Kiss in the airport terminal through surgical masks. Rub the knots from each others' backs. We dangle FALL RISK bracelets from our walls & call it decoration. We visit another ER & call it a date. When we are sick, again, for months -with a common illness that will not leave-it is not the doctors who care for us. We make do ourselves. At night, long after the sky has darkened-in-something like a three-day-bruise, littered with satellites I keep mistaking for stars-our bodies are fever-sweat stitched. A chimera. Shadow-puppet of our lust. Bones bowed into a new beast [with two backs, six legs of metal & flesh & carbon fiber]. Beside my love, I find I can't remember any prayers so I whisper the names of our medications like the names of saints. Orange bottles scattered around the mattress like unlit candles in the dark. /End ID]
Until I see people online posting how they pretended to have a disability, I really don't believe too hard that that happens. I'm sure sometimes it happens. Maybe I don't see it because I'm just not on that side of the internet.
But isn't it interesting how the side of the internet that sees: I faked a disability, also is the side that voices and interacts so hard on: but people fake their disability... Makes me feel like there is a specific population that has decided: well if so many people are faking it, I can too.
Just a guess tho. Again, it's like foreign territory for me. I curate my feeds really carefully.
Me everyday with a chronic illness:
Hmm...I don't feel well. Is it my chronic illness? Is it a cold? Is it covid? Is it the weather? Is it because I'm tense? Is it because I went for a walk yesterday? Is it because I went for a walk today? Is it because I slept wrong? Is it because I sat wrong? Is it a new illness? Is it an old symptom coming back? Is it a flare? Is it...
question for fellow joint hypermobility/EDS sufferers: wtf do you do with unstable hip joints?? i have stuff to keep knees stable but this year my hips have started to sublux and hurt all the time and ive no idea how to stabilize them,,, what kind of braces or whatever do you even need for that
There's that full body strap for your whole body. It's expensive though but looks super helpful and people who wear it for the first time get that: "I didnt know it could be this easy" look on their face.
hierarchy of disability mobility aids
[Video ID: A video of tiktok user ‘josephakibler’. There are yellow captions that pop up across the middle of the screen. They begin the video in a wheelchair and switch to other mobility aids throughout.
Transcript:
(Speaker is facing a door at the back of the room. They turn around to face the camera in a wheelchair. Speaking begins)
Speaker: “So my neighbour saw me in my wheelchair for the first time today and asked what was wrong and if I was okay so welcome to my new segment-”
(Speaker slowly stands up out of wheelchair)
(A very quick transition and a black cane appears in their right hand. The wheelchair is no longer on screen)
(The title ‘Cane and Ableism’ flashes up on screen in bigger yellow font)
Speaker: “So shocking bit of info up top, I’m disabled. But whether I’m using this”
(Speaker gestures to cane. There’s a very quick transition where the cane disappears and is replaced by two red forearm crutches)
Speaker: “Or this. Or wheelchair.”
(Another transition. The forearm crutches disappear. The wheelchair is back on screen and the speaker slowly sits back down)
Speaker: “It shouldn’t be treated any differently. However whether it is consciously or subconsciously, society has created a hierarchy, a evolutionary chart of disability mobility aids, where wheelchairs, power chairs are at the bottom.”
(A short pause. Speaker stands up. Wheelchair disappears after a transition and the red forearm crutches return)
Speaker: “Crutches, walkers etc. In the middle”
(Right forearm crutch is held up higher and then another transition. The Crutches are replaced again with the black cane in the right hand)
Speaker: “The cane is just above that, and, of course, the alpha….”
(cane disappears, there are no mobility aids in shot)
Speaker: “To nothing at all. Now this is where it can get tricky, and this line of thinking can lead to ableism and internalised ableism, because the people who need mobility aids are doing everything they can to fight against it so they can stay right here.”
(speaker gestures to self, standing without the aid of a mobility aid)
Speaker: “So is here better? Well for me personally, here’s where I have the most pain. Now if I were to go to this”
(Quick transition. Cane pops back into frame in speaker’s right hand)
Speaker: “This (the cane) has less pain.”
(Transition between cane and red forearm crutches. The cane is gone. The crutches are on either arm.)
Speaker: “This (the forearm crutches) is less pain”
(Transition. Forearm crutches have disappeared. The wheelchair is back on screen. The speaker lowers themself to sit in it.)
Speaker: “And this (the wheelchair) barely any pain at all. So when we say what’s better, what we’re really saying is what’s better for society, when we should be saying what’s better for you.”
(Speaker points quickly to the camera)
Speaker: “And you’re the one that matters the most.”
(Speaker turns back around in wheelchair to face a door at the back of the room) /end ID]
This is enlightening.
Take time to rest today.💙
I feel that life with a chronic illness is basically just trying to get back to our baseline. We experience setbacks, take weeks to recover, and we are finally at our baseline for a few days only to experience a situation that causes another health decline. Then the cycle restarts again.
People don't understand that it takes so much energy that is already deprived, to crawl your way back to your baseline so that you can be semi-fuctional only to be hit with another setback.
So when people say that we should try harder at getting better, it's really upsetting because we are trying our best just to function. And it is so tiring.
When I have a migraine, I am an absolute ditz. I also take excedrin that cuts most of the pain. The result here is that I forget I have a migraine, try to get up, fail to walk in a straight line for 3 feet, almost throw up, and wonder for a full 5-10 minutes if I’m coming down with something before I remember I have a migraine.
The SSI Restoration Act of 2021 is currently proposed to congress. SSI is a type of disability payment for disabled Americans. The bill will increase the SSI payment to the poverty level (right now the maximum payment is 9528$ a year). It will allow disabled people on SSI to marry and not lose their income. It will increase the asset and income caps for SSI among other improvements.
Friends and I made a website that has all of this info plus a REALLY easy way to send an email to your state reps. If you click the link below and click send email, you can send a letter of support for the SSI Restoration Act to your state reps. It's already written and takes only a few minutes. Seriously it is ridiculously easy. These emails have more pull to reps than resistbot so please fill out if you can!
We also have a Facebook page called "Campaign to Fix SSI" that has this information and regular updates. Here's the link for that.
See posts, photos and more on Facebook.
Please do this and boost! It could change the lives of millions of disabled Americans.
This got a big boost in reblogs/likes the last day or two. We are up to over 500 letters sent! Please keep boosting and if you are in the US and able to, actually do the letter campaign. We got 3 new cosponsors on the bill this week alone and will only get more if you contact your representatives.
We are up to 900 signatures! The post is losing a bit of traction that it's had the last week (which has been amazing) so please keep boosting and send those letters! (and call your members of congress if you are able to. That holds the greatest weight but I understand it's challenging for many)
10,000 notes and 1,700 letters sent. Imagine if everyone who reblogged/liked who could send a letter did. The numbers would be huge. So please if you reblog/like and are able, please send a letter in support of the SSI restoration act.
This could change the lives of millions of Americans.
We are almost to 2,000 letters but we've lost a lot of momentum lately. If anyone can sign and circulate this, please do. If you have any questions, please ask. After the pretty much destruction of the build back better bill, we need to push even harder to get this passed. Millions of Americans are depending on this bill passing, myself included.
To anyone hesitating bc they think this will be difficult it is not... if you have auto fill, your name address will automatically be filled... the letter generates for you...you dont need to know your representatives names or areas it populates for you... i had to write in my telephone number in and clicked about four buttons... then shared with my Facebook and twitter which also populated on its own... its not hard and it took all off two minutes in total. Please use your voice for good
We hit 2,000 letters! Please keep sending them and boosting!
Almost to 3,000 letters! And we got a new cosponsor on the bill today
wait people really are just walking around and waking up with no pain in the morning??? huh???? wdym you have days with no pain i dont even have minutes
Some days u try to walk & your body is just like: "NO!"
Having debilitating chronic illness is wild it's like...
-Why do I use industrial strength lotion??? It's the only skin care product that doesn't paralyze my face!
-HEY! I'm making all my food from scratch w/ weird ingredients!!! so I don't have to stagger around like a just born foal!!
-Thunderstorm coming??? Guess I can't walk today!
-Trying to apply for disability??? Guess it'll take 6 months to find someone to help you with the paperwork! + it could take up to 6 years to get approved! & a fraction of what little $ you'll get goes to the lawyer you can't afford to hire!
- For 2 years my doctors kept shrugging & just hoped I didn't die!
-Seeing ppl online arguing that ppl on gov. benefits should't be allowed to buy organic food & envisioning a future where I die of anaphylaxis in the hospital!
-Getting glared at when I switch my cane into my other hand, like, no honey, my legs are not the problem.
-I can walk pretty fast in a straight line but turning? Cursed!!!!
-Bending over?? Now I hear the ocean in my ears!
-Living in a stressful/ abusive environment? Trapped for life!!!!
(feel free to rb & add on)
The best poses for feeling grounded and balanced when you have a vestibular disorder. These restorative yoga poses can be very healing for m
ETA: I just tried these with no support except a yoga mat, and while the support would be good, I didn't find it totally necessary for most of these. I felt a little awkward trying to figure out what to do & they'll definitely take practice, but I can see how they'll improve my vestibular issues if I do them regularly.
Oh these are awesome. First one makes me dizzy just looking at it, but my regular balance exercises were too easy, so I guess up the ante.
If I'm correct, looks like it's really helping stretch and strengthen the hard to reach ligaments on the sides of the legs, which us exactly where I've been finding cramping for me. I'm so glad I'm not the only one with that type of issue. I guess it's an unsteady floor/wobbly balance issue. Really good to know!
If you're prone to migraines, the Pfizer vaccine could make them worse. I don't know if it's corrolation or causation, but I haven't had a migraine with vomiting since I was 15, until now, the day after I got vaccinated. I've already puked twice and it's only been 3 hours since I woke up.
Definitely made me sleep 4 more hours than usual the following day, and didn't move much. Did it go away? Are you back to normal a few weeks after the shot?
I had one day and then a wobbly 2 days but got back to my regularly scheduled trigger causing migraines after that.
Audio processing disorder is just like "you are going to be able to differentiate 27 distinct sounds happening simultaneously EXCEPT for when someone's talking to you. Good luck"
People think because my ears are so unreasonably sensitive I must also be able to "hear" them. This is false. I can hear the clock ticking though
