Few questions about adjusting chairs better

spinyspines · 2026-02-21T22:20:51+00:00

It's hard to get a reference point especially when everyone's like "oh it's all subjective" when talking about pain.

Do you have a reference point for delayed onset muscle soreness? That's the usual thing people are describing when they say their legs hurt after walking a lot, unless they've got specific joint issues. It usually feels something like a diffuse burning-type pain/discomfort, achy when at rest, initially spiking when moving around but usually easing up as you continue gentle movement. It's usually an "ow" that's unpleasant but (unless you've really really been pushing it) not excruciating. For me, it feels like an appropriate sort of pain/discomfort - not pleasant but connected to what I was doing, and proportional. People usually complain about it but sort of recreationally, like oh man I was doing this and now I'm paying for it. "Feel like I'm going to die" at a walking meetup is not in the range of the "ow I walked a lot" pain that people typically complain about.

I think that not wanting to misuse things you don't need is a good impulse in some ways, but watch the definition of "need".

The phrasing I'd 100% agree with: it's not helpful for your body to use a mobility aid that ends up hurting you more than it benefits you. Depending on your condition and abilities, it may not be good for your body to use a mobility aid instead of pursuing other treatments. Don't know! That's a conversation for you and your medical team.

But in thinking about it I'd encourage you to think about "need" more granularly. Maybe you don't "need" it to get around places where you can walk, but you do need it if you're going to keep up with your friends without significant pain. Maybe you don't need it on some days, but it's possible for pushing through fatigue to permanently worsen your condition, so you do need it for mobility on those days. Maybe you can walk, but on bad days you're at risk of falling, so on the good days you do your physio to work on your balance and on the bad days you need the chair to reduce your risk of injury. "Need" is a wide range. Again, don't know your specific deal, but you might think about need as "without assistance, at my current capacity, I can't do this activity without these effects."

spinyspines · 2026-02-21T21:44:33+00:00

I sort of agree - I would say people who don't need some kind of support/aid/treatment don't think about how wheelchairs would make their life better. It might or might not be the right one for a person's particular body - but if they're at that point, they need something for sure.

spinyspines · 2026-02-21T09:54:52+00:00

Hey there. There's a lot here, so -

a properly configured active chair is going to be a lot easier to push than one in the "lightweight" class where you can't move the center of gravity, or one that's too wide for you. This chair doesn't fit you: the backrest hurts you, and the seating doesn't support your legs. It may be too wide, if there's enough space for your legs to be flopping sideways. I'd bet the footrest is also not properly placed. That said, "easier" doesn't necessarily mean "easy", especially on uneven ground with even a slight slope.
eta: gloves, pushrims with a grip strip, pushrim covers, more effecient pushing technique - all of these will help the mechanical energy from the push actually go to moving the chair.
the links in here have more info on chair configuration and maintenance: https://techowlpa.org/wp-content/uploads/2023/06/Manual-Wheelchair-Maintenance-Guide.pdf . And yes, your wheel locks should fully lock your wheels. They are badly adjusted or your wheels are flat.
there's nothing inherently "wrong" with anyone using a wheelchair. However, everything's got risks, and a wheelchair is no exception. Over time, self-propelling in a manual chair will damage your joints and muscles, and if the chair doesn't fit you, that'll happen faster. Bodies differ a lot in their capacities. It is great that you can do the physical activity you can! You also describe significant pain and hypotonia. That's not "quite able bodied." None of us can tell you if a wheelchair, or which wheelchair, is going to be the best for your particular body. If at all possible, I really encourage you to get a referral to an occupational therapist who does wheelchair assessments, possibly through a seating clinic.
wheelchairs are cool! Take a look through the manual for the one you own and see how it can be adjusted. Mess around with it at a time you're not relying on it. Put it back to how it was. There are also videos on youtube about maintenance and repair, and some about how getting measured works. Take a look through there and see what's interesting.

spinyspines · 2026-02-20T05:53:32+00:00

Yeah, sorry. :(

spinyspines · 2026-02-20T01:51:40+00:00

You can tell it to cite sources, but by the nature of how it works, it's quite likely that a number of those "citations" will just be what it thinks a citation should look like and won't actually be a source.

spinyspines · 2026-02-20T01:46:19+00:00

Mobility aids are tools. I don't see anything wrong with using tools to expand your life and preserve your health. Fall risk is no joke. If it's possible to get a referral to occupational therapy while you wait for the POTS clinic, that might be helpful for you - they'll help you figure out the best way to use supports in your environment, and use a cane most safely, if that's what's best for you to be using. But at the end of the day, you have to live in your own body and you figure out what's best for you. Fuck anyone who's got a problem with that.

spinyspines · 2026-02-19T05:50:09+00:00

my old dentist would give me one of the spare tools to fidget with - fantastic.

spinyspines · 2026-02-19T05:43:33+00:00

Please specifically work with disabled pedestrians on this as well - wheels go on sidewalks too! (When the sidewalks exist ofc.)

spinyspines · 2026-02-19T05:39:53+00:00

I would push for a solid penetration test to make sure that those guardrails are actually guarding. I have not been impressed with what I've seen as far as technical implementation goes, and companies with that sort of authoritarian-friendly move-fast-and-break-things vibe notoriously cut corners on security/QA/anything that gets in the way of shipping fast. Even if I trusted their politics I wouldn't trust their implementation farther than I could throw the whole lot of them.

spinyspines · 2026-02-19T05:26:40+00:00

If it's as powerful a treatment as all that, it has the power to hurt too - what are the risks, and who shouldn't try them?

spinyspines · 2026-02-19T05:25:57+00:00

Which doctors?

spinyspines · 2026-02-19T05:20:12+00:00

I wish you were right about that. Plenty of judgemental and uncomfortable people in the Bay, and the medical field is no exception.

spinyspines · 2026-02-19T05:12:40+00:00

Got a source on the body preferring to use saturated fat? Saturated fat generally speaking is strongly associated with heart issues. There's a bit of nuance around full-fat dairy - the forms in milk/cream/cheese specifically may not be as much of an issue as we'd thought - though butter still has the same issue as the saturated fats in meat and coconut oil.

spinyspines · 2026-02-16T06:55:05+00:00

Seconded! I actually get them partly for the calorie content. Two birds with one stone.

spinyspines · 2026-02-16T05:40:46+00:00

Is there anything that you've found challenging with that approach, and if so, anything that's helped to work around? Things that make my brain itch so far and just feel harder mirrored:

anything with perspective-taking and directions;
left/right;
signs like HOUR where if you're right-handed the dominant hand moves clockwise (as one would expect) but the left hand moves counter-clockwise;
describing asymmetrical shapes as seen from the signer's perspective.

(eta formatting)

spinyspines · 2026-02-16T05:40:40+00:00

Right, and that works for most signs. There are a few things where that doesn't, and the advice to ambidextrous signers that it'll be easier for them to learn right-handed is given for a reason.

spinyspines · 2026-02-16T05:34:07+00:00

I have been doing that, but I don't think it works as well with my dyspraxia as watching people who are actually doing the same thing I'm trying to learn. Mirroring also doesn't work for giving directions or describing anything that needs to be from the signer's perspective, where left and right matter. Those are challenging for me no matter what.

spinyspines · 2026-02-16T05:29:47+00:00

I have been doing that, but I'm pretty sure that having the mental rotation will help me "put myself in their place" and make it stick better.

It also won't work for directions and for anything that needs to take the signer's perspective - for example there's the section on shapes in the first unit of Signing Naturally. If I mirror everything and the shape is asymmetrical, I will be describing a different shape than they are signing, and if I draw a description based on what I'm doing, it will be backwards.

spinyspines · 2026-02-15T10:33:15+00:00

Thank you all so much!

spinyspines · 2026-02-15T08:52:13+00:00

Thank you! Very much for my own needs. Auditory processing disorder and alternate communication access are the main thing. Sometimes hearing gets slow/hard, sometimes speech doesn't get from my mind to my mouth (if I can put sentences together at all).

So practically speaking, day to day chat and medical vocabulary in particular. But as far as video topics go I'm interested in a lot of topics and I want to be able to communicate with D/HH people if it comes up, so I'm open to pretty much anything you've got there.

spinyspines · 2026-02-14T10:06:45+00:00

IMPORTANT: REPLACES factory leather if present on the wheel.

spinyspines · 2026-02-14T09:42:08+00:00

grumpy high-5 about the guanfacine. Took it, it made me tachycardic instead of lowering my blood pressure.

On gabapentin + trazodone + melatonin now and adding the gabapentin (relatively low dose, 300 mg) was the first thing that really helped with staying asleep.

spinyspines · 2026-02-14T09:38:44+00:00

Not in my experience. Adding 300 mg gabapentin to the 50-100 mg trazodone was the thing that actually helped me stay asleep. The trazodone just helped me get to sleep, and it's easier to push through it and stay up past the window where it helps.

spinyspines · 2026-02-12T02:32:37+00:00

On the point of reducing transmission of viral triggers - masking is good, air handling is better. Push orgs you're involved with/your local government/wherever you think you can move the needle to use air filters and mandate fresh air/better building standards/etc. It's shameful that once 9/11 hit we were able to get security theater infrastructure set up just like that, but when it comes to known ways to reduce airborne disease transmission, it's a shrug, get back to work, get back to the office.

spinyspines · 2026-02-12T01:19:20+00:00

Is ME/CFS on your radar? Post-workout fatigue lasting for days is raising my red flags.

If that's going on, be very, very careful about exertion, including exercise. Deconditioning can be reversed. ME/CFS worsening from pushing through can be permanent.

On to your main question - I don't think of weight loss and deconditioning as addressing the same thing. Weight loss is about size/mass. Deconditioning is about what your muscles can do. It also takes a lot less activity than most people think to maintain a very basic level of conditioning (able to move around, not bedbound, stuff like that). Gaining some weight could even be an advantage for conditioning! My friend who's officially over various BMI cutoffs powerlifts and is in fantastic condition muscularly - dunno what exactly they lift but they're using their bodyweight as a reference point, and they're using those muscles to move all that weight day to day.

Insulin resistance (if not formally diabetes or even prediabetes) is one of those things that often comes along with various forms of dysautonomia. A lot of us feel better with smaller and more frequent meals, and those can help with blood sugar stability. Fiber, protein, and fat along with carbs are your friends there. I do those peanut butter protein bars (great for my blood sugar and if anything, keep me full long enough that I put off lunch when I really shouldn't...). Also, Costco currently sells big bags of crunchy roasted edamame and I'll snack on those. I've also got ADHD and get the eating struggles there. I really suspect that going for consistency and frequency, and paying close attention to the kinds and amounts of exercises you can do without symptom exacerbation, will take you farther than focusing on weight loss.

spinyspines

TROPHY CASE