Mobility aids

[stiff thicket]

could one forearm crutch maybe be better for balance or do you definitely want a cane?

[boreal kettle]

Is that decent to get over steps and stuff

That's my thing. I want it to be convenient enough to be able to get over curbs, etc without being incredibly annoying

[night lynx]

crutches do work for that but u might end up hurting ur elbow cos it's bending as ur going down stairs

and to get a rainbow one u either need to buy a wrap to go round a plain stick or you'll need to buy one from cool crutches which is stupid expensive first hand and very rare that u can find them second hand

wrestlingunicorn ↩️

[Reply to:](#1208395612853243935 message) I am trying to find a rainbow one

[boreal kettle]

I can decorate it myself

[stiff thicket]

i usually find it okay even with two, and for me crutches provide much better shoulder/arm support compared to a cane as long as it is at the correct height :)

[boreal kettle]

It's starting to bother my elbow

It pops out of the joint easily

[boreal kettle]

I decided to go with more supportive cane.

Quad bottom and offset cane

Cat photo bomb

Lol

I used ribbon to wrap it. And attached a pop it.

[wicked sequoia]

Cool

Why are offset canes more stable?

Is it cause like the pressure doesnt go through one rod but has to slow down at the bend?

Also the ribbon looks cool

[zealous flicker]

a little less than 6 weeks

[boreal kettle]

The bend put the persons weight directly over the tip.

[gusty igloo]

I have a straight cane and I can confirm it is not very stable - it is constantly bent forwards!!

[boreal kettle]

What tip do you have on it

Also are you planning on switching it

[gusty igloo]

I just have a standard tip. I would love to switch it - I have lots of balance issues and because it is foldable it is even more unstable. But its so expensive to buy a new one and I havent been able to find anything better in the chemists. But i should definately look.

[boreal kettle]

I asked my insurance

It took time

But pt got it done

[boreal kettle]

I got a shower chair

[wicked sequoia]

Yay

[solemn gale]

Congrats!

[honest lintel]

i really want to ask my parents if i can get elbow crutches to help me with my balance and everything on the bad days where my legs are a bit wobbly, i don't have a diagnosis yet but sometimes its really hard to walk and get up. does anyone know how i can ask my parents if i can get elbow crutches to help me?

[boreal kettle]

Are they supportive mostly

[solemn gale]

Discovery: I can fit my forearm crutches lying down in the crack between my bed and the wall

[boreal kettle]

That's cool

[boreal kettle]

I want to try that now

[umbral spoke]

i have an ergonomic cane i got from CVS for super cheap. it’s my first cane and works great with keeping me stable without my wrist or thumb hyperextending. it’s the michael graves cvs comfort cane

[gusty igloo]

thats so cool!! I need an erganomic one - my fingers and thumb keep hyperextending and I now have like an exosceleton of ring braces all over my hands!!

[night lynx]

Trying to work out if I need/would benefit from a cane, but I’d have to ask my parents

[boreal kettle]

What are your thoughts why? Not trying to sound like doubting you. Just awkward

[night lynx]

There’s worse days than others, but sometimes my legs are very weak or my joints hurt a lot when I walk

And I can still walk but idk I don’t feel very stable

[boreal kettle]

Do you have a physical therapist

If you don't. There are cheap canes that you could try and if it doesn't help. No harm done. Even foldable ones that you wouldn't even have to ask to try. If you can buy without them knowing

Just try it on a walk alone first. If you like it then talk to them.

[wicked sequoia]

If you ever need mine just ask yea? Ill always lend it too you if you need it

[night lynx]

Thanks

[boreal kettle]

Do you guys live close don't say where but are you close?

[wicked sequoia]

Yea

[boreal kettle]

That's nice

[wicked sequoia]

Quite close

[wicked sequoia]

Yea

[indigo tapir]

I borrowed my friends wheelchair as they don’t use it much and I was gonna use it for the first time today but I got too freaked out about using it so I just went to the store without it and now I’m really tired and I missed my theater class:(
Do yall have any tips for being more comfortable using a more noticeable mobility aid?

[vale gorge]

Have you used a wheelchair before?

I like to think of mobility aids as really helpful items and occasionally i absolutely need them to leave the house
What wheelchair are you using?

[vestal crater]

Honestly using it around the house at first, then up and down your street. Goal is to go farther and farther in moderate increments. Getting yourself used to it before anything

[compact cliff]

it it okay to get mobilty aids without a doctor saying its neccisaary

[vestal crater]

Yes

Use it if you need it!

We have crutches without our doctors knowledge

[compact cliff]

i really think it would help if i had a rollaider or wheelchair i have fnd and pots

[vestal crater]

Go for it!

Also compression socks. I cannot stress this enough. For POTS….it helps so much.

Also braces when you need them for your limbs, or KT tape

[livid wind]

Same thing has happened, although there are some facts, I had coffee this morning and some hot chocolate, I've also been out helping my dad at his school with the kids which is more than I usually do in a day. My medication could be another factor. It's just I don't know.. been so tried today. Oh and the heart rate started going down a bit when I layed down and up a bit, only a bit, when I standing up again, I don't know.
Also reading my body energy, it's like..no wonder I'm always tired.

It tends to be higher though, like once when I got my pulse and stuff checked once at the mental health clinic and I had to lay down for like 20 minutes before it went down which was obviously linked to being stressed.

But this just makes me wonder what it'd do to have like a walker or maybe even a cane that I could lean on or sit down on and when I sat down it wouldn't have to be on the floor. /;

[livid wind]

I have slowly begun to consider getting a form of mobility aid but I'm really unsure. If I even should and if I do..what.

[livid wind]

And it's also like..I'm always so tired and I'm like sure it could be something else but then I also have ADHD so it's like urh I don't know.

[livid wind]

It happened again rn where I checked my watch as I was up and it said like 124 and then now I've sat down in bed it's like 88? Within a few minutes.

[livid wind]

And again there's the thing of not knowing if it's worth it.
And not knowing if everyone will understand or agree by with it and as said if it's actually worth it or not and battling with the "not unwell enough" thoughts and "what if it just makes things more difficult" and the list goes on.

[boreal kettle]

Yeah. That's my wheelchair debate right now. I get it

[solemn gale]

A rollator might be nice bc you can sit on it, just know it may limit your ability to do stairs/rough terrain

[wide walrus]

GG @solemn gale, you just advanced to level 11!

[solemn gale]

In general though if you’re considering whether or not you need a mobility aid you probably do

[boreal kettle]

The only thing with the rollator is its kinda big.

[livid wind]

Sorry to hear you're stuck in this debate too. But nice to know I'm not alone.

[livid wind]

Yeah that's the main reason I was considering it. A wheelchair I feel like may just create more hassle but you can maybe lean on or sit on a walker.
I don't know, I never thought I'd be having this debate with myself and I'm just so lost.

[livid wind]

Thank you for your supportive comments it really does mean a lot.

[bitter wyvern]

I am considering a mobility aid and have been wanting and needing one for awhile but my doctor does not really approve because I seem fine to them. I can’t just get my own mobility aid as a minor and my parents tell me to wait for everything to be diagnosed and it’s been two years and we still haven’t figured it all out

[livid wind]

Made my bed and it's like 130 or something..what?

[livid wind]

That's really rough I'm so sorry that's the case for the at the moment. I sadly don't know if I have any specific advice but that if you feel like it's the right move and you've weighed out the pros and cons and think it may help you, don't stop fighting for it. Don't fall for the "you seem fine so that means everything is okay" that can cause problems. Keep standing up for yourself and fight your corner, especially the doctors and make sure to explain why and how you think it'd help you.

I'm really sorry you're in this situation and I really hope you get the right support you need and deserve.

[solemn gale]

That’s really rough, I’m sorry. Depending on what kind of aid you want you could always just buy it yourself? I bought my canes/crutches without my parents’ knowledge or permission

[bitter wyvern]

My parents track what’s being bought and I am never allowed access buying anything because they check my accounts

[boreal kettle]

Could a friend buy it for you

and bring it to school for you

[wicked sequoia]

How do you manage to keep crutches on the downlow?

[celest ivy]

That's what I do; I use my aac, braces, etc anywhere except my near my parents

( or people who are known snitches and will tell my parents things )

[solemn gale]

I don’t use them in the house

They fold in half and came with a bag so I just carry them out to my car and then set them up later

[solemn gale]

What about buying in cash?

[wicked sequoia]

Ah hats cool

[bitter wyvern]

I am not of age to drive and find one to buy

[solemn gale]

Ah, gotcha

[boreal kettle]

Could it get delivered to a friends house?

[neon horizon]

Hello there ! it's been a while ! I've tried several wheelchair in the meanwhile : lightest electric chair, active and light manual wheelchair, and manual wheelchair with the Minotor System motorization. I thought I might share some of my observation in case it helps any one :

I've really enjoyed the "light manual wheelchair (Ego Progeo) + Minotor", it really life changing too have the option to move without pushing myself to exhaustion, plus the chair was super comfortable. However, for me, do the transfer to a car was such a hassle : the battery and equipment of the Minotor was too heavy to carry for me, so it was an exhausting process. So this motorisation was good, but was not the best for me to manage transfers to a car, especially as I'd like to be able to do that completely independently. I would recommend to at least try it for anyone wondering, though. If it was not for the prices and the emergency of my situation which mean I can't "wait to put aside money" at the money, I would consider this option. However, my supplier doesn't recommend using the Minotor with the super light wheelchair, apprently the weight disparity could be a problem or risk in the long run. I don't know what to think about that, but I thought I would share it with you.

The light and fully electric one was also great, the main advantage of this one being the time it takes me to do transfer to a car. It's foldable and light weight, and allow me to leave my house in total autonomy, which was almost a teary experience to leave aha 😅 🥲 . I just which this one was more design / prettier. I might customize it, cause it's important for me to add some colors to something "medical".

I've tried another light manual wheelchair, not fordable cause more stable for my need, just by it self and it was my favorite experience so far (Quickie Nitrum) : I could push myself with such ease and felt lighter, stronger cause I could finally do more things. Forgot something at the opposite of the room ? no problem, quick light pushes and I'm there. No shortness of breath, and less pain on my arms and wrists. I can move by myself without extreme pain, it's so freeing !! The only thing is, in my case, without motorization, I can't go far outside, extreme fatigue and weakness have the best of me in these situations. But still, even simple things such as crossing a street, leaving the pavement and handling curves is wayyyy easier. Like, above anything I imagined.
Motorization added to a manual wheelchair is still a great option. I might still explore this option in a future, but with other equipment like the "Alber SMOOV one".

[boreal kettle]

I have pots, i am looking into something like this

Lightweight manual

its foldable and the wheels come off easily

anybody have experience with pots and manual vs. Electric

i am leaning towards manuel but i am concerned about fatigue

[craggy harbor]

A lightweight manual is a good way to start imo
But do keep in mind that most foldable lightweights are still somehow hard to navigate alone for a longer time. At least that’s my experience.
I also have one and decided to add electric wheels after only 2 months of ambulatory use.
If you’re looking for something to conserve energy with I would suggest to have an electric option.
Also depends on how independent you want to stay.

[boreal kettle]

I want to make it through a grocery store and go on like 5 mile hikes on paved paths. Ivwant my life back

[boreal kettle]

Guess who just got sent their custom wheelchair prescription and handicap plakard is on the way in the mail!!!!

[wicked sequoia]

Yayyyy

[wicked sequoia]

Cool

[balmy wadi]

woah fire

[wide walrus]

GG @balmy wadi, you just advanced to level 7!

[odd oyster]

I love the colours!!!

Hey I have a variety of chronic illnesses and I have a wheelchair which I originally got because of FND but am using currently because of POTS, fatigue and joint instability/pain and I'm in a flare.
This is extremely helpful for long distances and long days, however I would like another option for shorter distances, when I don't want to use my chair, an in-between option for no mobility aid (causes problems on bad days) and a wheelchair (sometimes almost too much at times and I want to try be more mobile when I can).
I'm considering getting crutches and I feel they would significantly benefit me. (I don't think a cane would considering some of my joint problems etc) Only problem is I have no idea how to navigate the conversation with my parents and explain to them the benefit I would receive. They support me using my chair but don't love it (understandable but i don't think they grasp the benefit I get or the complexity of chronic illness).
For further context my family is active and wants me to be the same, they also don't seem to understand the way it works with fluctuations, energy and how it is chronic. This is absolutely nothing against them, they have been incredible, there's just some things that i don't think they properly understand.
I was wondering if anyone had advice or thoughts?

[livid wind]

I don't really have much pain but I do have a lot of fatigue. Does anyone have any recommendations for an aid or any tips on how to make it easier for me?
Something sturdy I could sit or lean against but also not something that would make me even more tired trying to manage the aid.

[modest cedar]

a couple of things I've found really helpful are a shower chair and also a bar stool type chair in the kitchen for cooking. I don't just use the shower chair for showering but also for any bathroom related stuff like also sitting at the sink to brush my teeth, shaving etc

[wicked sequoia]

I was at a shopping center and i looked in a chemist and they had suprisingly good looking wheelchairs, i was like damn

[celest ivy]

Spray painting?

[boreal kettle]

Yep!!!

[boreal kettle]

Getting fitted for my wheelchair today!!!

[balmy wadi]

i love this omg

[neon horizon]

I have a question : how do you deal with healthcare professionals telling you they are against you using an electric wheelchair cause you're too young and this means for them you'll never be able to walk again ?

[boreal kettle]

Hmm. Can you see a different doctor

Will be here early January

[odd oyster]

Love the colour!

[wicked sequoia]

Oohcool

[onyx bison]

I’ve been wondering about using a mobility aid at some point if my pains keep coming. It makes it painful to walk sometimes and I also get pains if I walk more than 5000 steps in a day, sometimes even less and it will happen randomly sometimes.

I would like some advice on what to do next

[boreal kettle]

Do you have any diagnosis? You don't have to say if you don't want to. I am thinking for insurance purposes

[livid wind]

I have actually thought of that in some extent. I've used a chair once when I was prepping food by the counter, at that point I was really tired and it was actually quite useful.
Thought I had something I could use in the shower but turns out we chucked it so I may have to buy something.
I don't know..I guess it's one of those things where some people around me and even myself I wonder if it's all actually necessary but I mean.. something's clearly not right so I don't know..

Anyway thank you so much for your tips and I'm so glad they helped you. < 3

[onyx bison]

Just hyper mobility and autism but I don’t think that those would be insurable for this.

[boreal kettle]

Internalized ablism. If it makes your life easier, do it

[boreal kettle]

What have your doctors said

[onyx bison]

I haven’t asked them yet but if these pains continue I’ll ask them

[livid wind]

Yeah that's very true.
I think it's also because like I don't look it ill..so it's hard to like explain my tiredness and since I'm often not in pain and I think calling it 'being tired' doesn't get my struggles across.

But yeah you're very correct, thank you for your realistic but supportive outlook<3

[boreal kettle]

Yeah, invisible illnesses are hard for people to understand. I like to use the word fatigue instead of tired, because people tend to associate that with chronic fatigue syndrome and stuff and sometimes take it more seriously. Not always. But sometimes. I will play into the stereotypes to get people to understand. I don't know how good that is, but as far as i can tell its not hurting anyone and it gets idiots off my back.

[modest cedar]

also something I didn't realise to begin with is that you don't need to only use aids when you're already feeling unwell, but also as a preventative measure to stop symptoms triggering or worsening. Like with the shower chair, if I know I need to use a lot of energy that day sometimes I will use it even if I feel fine in the moment to make sure I have more energy later

[onyx bison]

Yeah same, I’ll play into stereotypes sometimes to get people to actually believe me. Or I’ll exaggerate a bit but to me it doesn’t feel like exaggerating sometimes, it’s just how I show pain at times.

[boreal kettle]

Well your base level is more Than they would deal with on a daily basis anyway. Its fine to just show it.

[onyx bison]

Yeah, I’m really hoping that when I go to the physio it will actually help, might ask about mobility aids too if they do those

Bc hanging out with my friends shouldn’t be something that causes me immense pain

[livid wind]

That's actually very clever and sensible. Something I will take note of as you're 100% correct in this. You shouldn't have to wait until you're feeling poorly to use them.
Thank you again, so much, for sharing.

[modest cedar]

no worries, good luck with finding what works best for you :)

[livid wind]

Thank you so much, I really appreciate it.

[neon horizon]

Same

[neon horizon]

Is this question intended to me ?
The problem in my case is that seeing another one might take too long. Either way, I don't plan on re-seeing him, as he was also the kind who think that finding a diagnosis is a "waste of time". But the comment about me being too young to have mobility aid when those are the few things that helps me maintain an "active" life is really hard to swallow. So I wonder if anyone had some tips or any thing, really

[livid wind]

Awh..
Remember, whatever it is you're going through, it's valid and so are you. <33

[neon horizon]

Thank you ☺️🫂❤️

[wicked sequoia]

Does anyone have any advice on bringing up my use of a cane to my sibling? I want ti be able to use my cane at school more when i need it without the need to hide it, they are two years younger then me but im nkt sure how much they would understand, they most likely would just be like ok but i dont think theyd understand properly

[boreal kettle]

How old are they

also do they need to understand? I think young kids often don't understand but can be very accepting anyway

[wicked sequoia]

They are 12, idk if they need to understand but they will ask questions

Wait they might be 13 yes ey are

[boreal kettle]

Do they know anything about your struggles? If not you could just say i struggle to stay balanced and feel stable

Or whatever it is

[wicked sequoia]

They dont know, ok thank you

[vestal quail]

Does anyone have any good folding forearm crutch recommendations?

[jolly hazel]

i don’t have recommendations but i would suggest to try not buying it online. being foldable could lead to damage while delivering it. try to look around you if there’s anyone who sell them and ask specific questions so they get you the best they have for your needs. /gen

[dusk forge]

I use Antdvao ones, the red ones. They’re on the cheaper side (relatively) and I got them from Amazon. Haven’t had any problems with them yet! (Keep in mind though that folding crutches have a lower weight limit than non-folding ones)

I agree with trying to find them in person though! It was much nicer trying to find a cane in person because I was less anxious about it being broken when delivered

[vestal quail]

Ok thank you

[odd oyster]

I mentioned to my mum about using crutches and she thinks it's worth trying!❤️

[wicked sequoia]

Yayyyy

[boreal kettle]

Yay!!!

[livid wind]

Oh my gosh that's amazing!

I'm so happy for you!

[odd oyster]

Update! We have some hospital type ones that we found randomly in a storage are under our house and I was using those today, and it was amazing being able to walk a bit more normally, and be able to get out of the car to go into the petrol station to choose my own ice cream rather than telling someone what I want. (It's the little things).
I've noticed my elbows are a bit sore and it would be awesome to get some decent ones at some point (why are they so expensive, and I want something that looks good) but in the scheme of things I am so happy!

Does anyone have ideas on how to decorate these kinds of crutches to look less medical and more fun? I hate the silver and ugly grey

[livid wind]

Girl, I'm so ecstatic for you, that's amazing! So so so happy that you're slowly bit surely getting an aid to help you which you need and deserve.
I really hope you can get something more proper asap so it isn't mean and hurts your elbows.

Sending my love and tons of happy cheers!

[odd oyster]

Thanks!!! I dream of the day when I can invest in a pair of cool crutches, the patterns are so pretty and they are designed to be a lot more comfortable. That'll probably be something I do late February after I start uni.

[zinc abyss]

u can

paint them

or like

add colorful tape

or add like patterned paper and stick it to the crutch

or even stickers

and keychains if you dont mind the dangle

[waxen latch]

You could spray paint them or put a bunch of fun sticker on them

Oops I didn't see the previous replies

But I'm seconding those

[solemn gale]

You can paint them, I would just recommend sending them so that they’re not perfectly smooth first, maybe watch a few videos. You can also use duct tape/washi tape or stickers or make fabric sleeves for them

[storm sparrow]

Any advice on how to tell friends you’re gonna start using a mobility aid (specifically a cane). What sort of reactions and questions to prepare for (I am fine with questions for the most part)? Telling in a group? I’m considering telling a big group to avoid awkwardness when they first see me with a cane but I know others I either can’t contact or won’t care (not in like a rude way but are just like really accepting). Is this a good plan? Ways to word telling people etc.

Also a bit more casual do any of you have names for your mobility aids?

[unreal heron]

I’d say just show up with it. If anyone asks what happened/what it’s for, your answer can be as detailed or as simple as you want. I normally just say I’ve got a long term condition/disability - people generally get the hint not to pry further. Real friends should be wholly understanding and accepting!

[wide walrus]

GG @unreal heron, you just advanced to level 7!

[waxen latch]

The fabric sleeve thing gave me another idea. You know those "yarn bomb" crochet art people put around trees or lamp posts or whatever? That could probably also work for something smaller like crutches. So if you or someone you know knows how to crochet, that might also be an option

[solemn gale]

Does anyone know if Cool Crutches are truly ‘silent’ like they claim to be? I’ve heard good things but also the yt video I just watched didn’t fill me with confidence… not sure if it’s just an audio/production issue or if they actually still make noise

[solemn gale]

I’ve actually thought about doing this with my cane/crutches—I’ve seen some where they do this and it looks really bulky but I still think it’s worth a shot

[solemn gale]

You could say something like ‘hey, just a heads up, I’m going to be using a cane at xyz,’ optionally with something like ‘just wanted to let you guys know in advance so you’re not blindsided by it’ or with a brief (or lengthier if you prefer) explanation as to why. You could also add something along the lines of ‘ feel free to ask me if you have any questions’ or ‘ I’d prefer if you guys don’t ask about it/acknowledge it’

[waxen latch]

You could try using thinner yarn if you want it to be less bulky

[slate creek]

I just showed up to the function with one. Nobody rly cared. Some were worried and asked what happened and why I have it, so I gave them a brief explanation and everyone went on with their day (some thought that it looked cool and one assumed I just wanted to be stylish. Mind you, I was wearing sweatpants xD)
For others that I couldn't meet up with at that time, I just texted them telling them sth like 'hey, look what I got! Isn't it fancy? I can come along again' or sth like this
What I've noticed is, that the less awkward you're about it, the less awkward others will be :)
(at least that's my experience)

[arctic cove]

here is a picture of my crutches. i put stickers on them and my mom made me this little pouch i can put things in (sry for the bad quality, im quite shaky at the moment lol)

if any of you decorated their mobility aids, id love to see them!

[slate creek]

Had it like this for Christmas time

[slate creek]

So cute!!

[waxen latch]

Oh I love the fairy lights!

I hadn't even considered that as an option

[slate creek]

Also only got the idea cause I didn't have two of them so it didn't look good on my wheelchair 😂

[slate creek]

Also good to be seen in the dark

[wicked sequoia]

I had my cane decorated in silver and gold different threads and at the bottem section it was red and green for christmas(i dont have a photo sorry)

[odd oyster]

When I decorate my crutches I will send a photo

[wicked sequoia]

Ill send a pic when i use it next

[odd oyster]

Don't know if this counts as a mobility aid but I want to share a pic of my feeding pump named Felix!

[storm sparrow]

I just ordered my first cane!!

[wide walrus]

GG @storm sparrow, you just advanced to level 2!

[rain pebble]

When getting crutches what is important? I’m gonna use them for pain, fatigue, dizziness and weakness, and I just thought if there is anything important to remember about different models and stuff and what to go for? Also any ideas on how to introduce the idea of mobility aids, to parents who are in denial about your symptoms?

[slate creek]

Idk much about crutches, as I don't use them, but I know there are like different kinds of crutches distributing the weight differently or sth
Like those forearm crutches and those who go fully under your arm (I'm not sure what they're called but they seem to be standard in us hospitals)
Also you should probably get some where you can change the height to fit you (especially if you still grow it can be useful for them to last longer)

And for the introducing mobility aids to your parents part... I mean idk your parents or your situation (like can you buy them on your own, are they like 'just' in denial or do they get angry at the idea, etc.) but for me (keep in mind, I don't live at home anymore, my parents are kind of in denial but try to be supportive and I bought my mobility aids with my own money) it helped showing them how much they help me. Mobility aids are incredible inconvenient for ppl who don't need them and make life a lot harder! But thanks to my then cane, now wheelchair, I can go to school, grocery shopping, do things around the house, and more. And ppl who don't need mobility aids usually don't fantasise about getting them.
Hope that at least kind of helps :))

[slate creek]

Also it can be helpful to see if anyone posted about their experiences, like which kind they prefer, how to properly use them (IF you don't have the opportunity to go to physical or occupational therapy and have a professional teach you) and so on and so forth :)

[wide walrus]

GG @slate creek, you just advanced to level 3!

[pseudo sand]

the first picture is an ergonomic handle notice how it has the bit that goes out so your hand can rest more comfortably. the second is a normal shaped cane handle.

[wide walrus]

GG @pseudo sand, you just advanced to level 1!

[onyx bison]

Not sure if I need a mobility aid, wondering if anyone can tell me how to tell if it’s time to get one? I would use it to reduce pain bc while I do feel pain walking sometimes, it would be to prevent horrible pain in my legs I get in the evening if I walk ‘too much’ (meaning like 3000 steps). I might bring it up to my physio when I get one bc that’s exactly why I would be seeing them

[slate creek]

Do you think about how nice it would be to have a mobility aid? Then you probably need one. People who don't need them, don't fantasise about them. They are incredibly inconvenient for those who don't need them.
Also, it's fine if you don't constantly use one. Many chronic illnesses, disabilitie,... Are dynamic, meaning there are phases in which the symptoms (like pain) get better and phases in which they are worse

[onyx bison]

Yeah I have been thinking that it would be pretty nice to not be in pain after hanging out with my friends. Compression socks have worked pretty well but I only have one pair so when it’s in the wash I don’t want to be either stuck at home for the day or in pain bc I decided to leave the house for ‘too long’ for my body

The doctor says that the pain is from my hyper mobility and muscles that aren’t supporting those joints

So I’m hoping that when I get into physio it will go away but I’m very aware that may not be the case

[solemn gale]

Thanks haha - I’ve long since bought a cane with an ergonomic handle and it was the best decision I’ve made

[boreal kettle]

It will help but probably not go away. I just finished mine. Its not all gone but significantly better

[onyx bison]

Ahhhh thanks!! /gen

[slate creek]

My new wheelchair arrived!!!! :D

[boreal kettle]

Pictures?

[wicked sequoia]

Yayyyyyy

[slate creek]

Sure
When I'm back home
Had to try it out by grocery shopping heheh
But it's beautiful, light and sooo fast hahah not used to that

[boreal kettle]

Yay!!

[wicked sequoia]

Yayyy

[slate creek]

It's in the pic channel :)

[boreal kettle]

My wheelchair is coming tomorrow!

[slate creek]

Whoooo amazing!!

Congrats

[wicked sequoia]

Yayy

I found a way i think could work if i ever manage to get forearm crutches without parents knowjng- we libe right next to a sailing club i am a part of and there for know the access key, i could hide them in one of the sabots that no one uses and then have the ability to use them when i need too

[odd oyster]

I spray painted my crutches black and they look so good!

[wicked sequoia]

Oog cool

[vale gorge]

What is a good manual wheelchair to start with?
(I have fnd and require one at times)

[slate creek]

You can go with a standard one, but usually they don't fit well and are heavy, but they got the job done and are the cheapest
I got an active wheelchair now which is way lighter but also more expensive.
I think it depends on how much money you're willing to spend, how often and for how long you wanna use it, your upper body and arm strength and your size
(like if you are like rly small and slender and stuff you'd probably need a smaller one)
I got my new one on ebay, so that's a place where you can look for one if you can't get one through the official way (like doctor, insurance,...)
I'd also recommend to look online on YouTube or even tiktok to see how ppl feel about certain types and get a wider perspective :)

Tiktok in particular helped me a lot with choosing my current one, cause I got to see what features I'd like mine to have
(eg: my old one had a high back, two food plates and high armrests. I wanted a lower back, one food rest and only side guards instead of armrests cause that's what fits me and my needs best)
Look at what you and your body need! When I got my first one, I didn’t know about all the options. But then I could specifically look for one that fits my imagination :)

[unreal heron]

Idk if you have mobility showrooms where u are (they’re very common in the uk, not sure about anywhere else) - but those are great places to try out tons of different setups and features. Normally u gotta book an appointment, but they let u try stuff out for free

[vale gorge]

I do not unfortunately

[unreal heron]

Oh no that’s a shame!!

[vale gorge]

Yes unfortunately

[unreal heron]

If you’re near a major city they sometimes hold mobility expos?

Normally once a year tho

Other than that, it’s like Sammy said: depends on your budget, how often you use it, and whether you intend to self propel most/all the time. Standard chairs can be a good solution for some people but not others.

I’ll be real if u can find a second hand rigid active chair cheap on eBay, that’s probably your best bet. (Assuming you can’t afford to drop thousands on a custom). Even if it’s not the right measurements it’ll be much easier to push than a standard chair. I used one for a year (before getting my full custom chair) that was way too big, but it was still amazing. I can’t self propel outdoors in standard chairs at all

This is my old chair versus a standard chair! It was the same seat dimensions as most standard wheelchairs (18”x16”), so not the most efficient for reaching the wheels, but a low(ish) back and no arm rests make a world of difference in posture. Same with having your feet together. Plus of course it’s MUCH lighter

[boreal kettle]

No, my wheelchair was delayed!

[slate creek]

Yeah
Mine's not used but it pretty much fits my measurements I'd say and it was less than a thousand euros, which is nice

[slate creek]

The new one looks waaay more comfortable

[unreal heron]

My fully custom one is even better!!!

[slate creek]

Woahhhhh

[unreal heron]

So glad you could find something like that!

[slate creek]

Yessss!
Though getting a custom one would have been even nicer, at least this one is fully mine, not dependant on doctors and insurance :)
(I also don't think I'd be able to get a custom one cause insurance already approved a standard one (didn't know that you needed a specific prescription kinda thing for that, cause I never used one before and my doctor didn't inform me about that and the provider told me bs about getting a fitted one once it's approved) and they usually won't approve another wheelchair)

[slate creek]

Btw, does anyone here know how to find local communities who use wheelchairs? Cause as much as I love and appreciate my friends, I'd love to have ppl who can like rly understand to hang out with. To share experience and spend time...
I looked online but couldn't rly find anything
Any tips?

[wide walrus]

GG @slate creek, you just advanced to level 4!

[unreal heron]

Adaptive sports groups for sure!!! Most countries have a governing body for wheelchair sport (in the UK it’s Wheelpower) - through which you can find stuff near you

[slate creek]

Found a wheelchair sports club for basketball... I can't guess distances and am afraid of balls (like not in a way that I'm actually afraid of them, but since I can't guess distances I suck at catching them and tend to get them in the face hahah) xD (also a sports chair is not in my budget unfortunately and Idk if they'd let u use one and how much that would cost...)

But at least going to the cat café works (there will be train staff with a ramp 🤌🏻👍🏻)

[unreal heron]

Pretty much all clubs will have sports chairs for you to use free of charge, so don’t worry at all about getting your own chair! If you’re worried, def send them an email to confirm. Many clubs ask for a fee if you become a regular member, but will let u try out a few sessions free of charge

As for the worries about the sport itself, what’s the harm in giving it a go anyway ;)

From personal experience, my disability stops me doing much exercise, even with the wheelchair. So I’d go along to basketball, join in with the warm-up, and then practise some simple drills (shooting, dribbling, picking up the ball etc) on the side (while everyone else played matches) along with anyone else who was a new player. When I was too tired or fed up with drills, I’d sit by the side and cheer my friends on as they played :D

Got to know so many lovely people from that! Moved to uni and I miss it so much :(

[slate creek]

Maybe
I'll try as soon as exams are over
Thanks :) /gen

[waxen latch]

You could also ask them if they know any other groups or activities in the area, even if it turns out basketball isn't your thing

[bronze oxide]

Hi

[wicked sequoia]

Im going jnto the city with my friends in a couple of days, at the city you can rent a wheelchair- we are goung to opshop (thrift) and there is alot of walking involved, i kinda want to rent a wheelchair cause i feel like i would be wiped and i would benefit, but im almost 100% sure my other friend will be renting one(his wheelchair recently broke) and i dont want to cause an issue or anything or idk, i have my cane but im not sure if itll suffice, idk any adivce whether i should or not?

[boreal kettle]

Do you have like crutches or something in between?

[wicked sequoia]

No unfortunately

If i did i would definitely use them though

I guess itll just end up how i am on the day

[boreal kettle]

Could you rent it halfway through, like try, and if you cant, then get one?

[wicked sequoia]

I could, but that would require me and my friends to go back to the place where you hire them which is like nearly a kilometre walk (if i remeber correctly) in itself, i might see how i feel on the day, thenk you for the advice though

[boreal kettle]

Yeah. Makes sense

[bronze oxide]

Does everyone have any ideas on how to carry things when walking with a cane? I start art classes Monday

[night lynx]

I’m sure they have more than one wheelchair there if that’s what you’re worried about

ratssssssss|| ratbags sys ↩️

[Reply to:](#1208395612853243935 message) Im going jnto the city with my friends in a couple of days, at the city you can rent a wheelchair- w…

[boreal kettle]

Backpacks

[bronze oxide]

I have a large art portfolio that I have to been to class

Like big canvas

[wicked sequoia]

Mo its that ill get in the way or be a nusancd or be annoying

[wicked sequoia]

If you have most things in a bag and then your canvas in your hand/arm that isnt using he cane? It might not be the most practical but unless you have a real big backpack?

[bronze oxide]

Yeah that was the best I could think of but I thought I would ask, thank you

I did find nice cooler and backpack combo so I can carry water and snacks too.

And a bottle of salt because the doctor said so

[wicked sequoia]

Welp

[slate creek]

Backpacks or if it's only for a short distance (like once across the room) restaurant server style

[slate creek]

Oh... Well... Nvm :')

[rugged slate]

Anyone have any tips to ask a doctor or physical therapist about mobility aids?

[boreal kettle]

What specifically are you having trouble with? Embarrassing?

[rugged slate]

Like with asking or why I think I need them?

[slate creek]

I'd just be like 'hi, I'm thinking about getting xyz mobility aid, because...' if they try to argue or sth you can tell them how you think they'd help/ why exactly you think you'd benefit from having one

[boreal kettle]

I got a small wheelie!

[slate creek]

Whoooo congrats!

[wicked sequoia]

I rented a wheelchair from the city gor the day and oml its so handy i love it sm

[rugged slate]

I mentioned it, she said I’ll have to finish my 6 week PT (on week 3 rn) and speak to head pt person

[wide walrus]

GG @rugged slate, you just advanced to level 5!

[wicked sequoia]

Hehe i can kibda do a wheelie

[wicked sequoia]

Ooh

[boreal kettle]

My wheelchair has been incredibly helpful. I could function so much more today than in like 8 months

[slate creek]

Good luck!!

[slate creek]

Fancy!!

[night lynx]

(Sorry for the yap that’s about to happen)
Hi, so we have an alter who is extremely hesitant to use any kind of mobility aid, but we’re trying to figure out how necessary it is.
Today, we had basically a normal day out and partway through our legs started shaking and were incredibly weak, to the point it got kinda hard to stand. We kept going and it wavered along the day, but my legs were so tired and mildly achy that I had to go home earlier than I wanted, and now it’s night and my knees are aching and I just don’t want to really do anything cause it’s too much of a bother (might be slight laziness) and I’m just so tired. We don’t really do as much exercise as we should but I’m kinda finding out why… I don’t really know what to do
I don’t think my parents will want me using a mobility aid without trying exercise and talking to a physician but I kinda want to use a cane when I’m out if my friends offer
It would really help us convince that alter if you could chime in with your own reasoning please and thank you :)

[azure parrot]

\ oh and feel free to ping

[boreal kettle]

I went to mall. Got pretzels and looked at stuffed animals. Went out with my wheelchair. It went awesome!!

[storm sparrow]

Got my first cane yesterday morning. It feels so incredible, I can move around with like no pain for the first time in a while. In a couple days I’m hanging with friends and planning to bring my cane with me, I’m really nervous but I’m hoping I can do it on the day. I’ve been practicing going out with it but going out alone feels different to going out with friends. Wish me luck 🙂

[gusty igloo]

I am talking with my parents and starting to talk to doctors and stuff about getting a manual wheelchair for my POTS / undiagnosed 'mysteriously hypermobile body.' I was just wondering, because I would really prefer a manal wheelchair for many reasons but how hard is it to self-propel a well-fitted manual wheelchair?

[boreal kettle]

I started using one this week. And in flat ground easy. On snow or anything significantly harder

Even rough pavement isn't too bad

its just snow is very hard

Ramps are hard too. But the thing is you will develop muscle for it

[slate creek]

Oke, so when I started using a manual wheelchair it was not well-fitted at all and my arms were untrained so I did have sore muscles for the first few days/ weeks
I think a Well-fitted one should be a lot easier to push and also if you've used your arms in any kind of way that builds muscle it should be fine (and if not, it'll get better over time eg. I used to take 3 to 5 brakes up the hill that I currently live on, only like a month in I didn't need any anymore)
It also depends on what ground you're rolling on (eg. the sidewalks here are all dropping down towards the street while not even being drop curbs so all of it has to be more or less pushed by one hand)

[boreal kettle]

I have the same combination of pots and hypermobility and another thing is that i noticed i was in much less pain. I didn't realize how much walking hurt until it didn't.

[slate creek]

Same
Though I do struggle with a lot of pain in my wrists and shoulders now

[boreal kettle]

I already have issues there, and i have braces for it so that is under control for me. As long as i keep the joint in the socket, i am fine.

I just need to be wearing my braces

[slate creek]

Ouhh what braces?
I currently use tape

[boreal kettle]

I was thinking of trying tape. Does it work well for you?

i can get the links off amazon if you want

[slate creek]

I don't rly know yet
We taped yesterday evening
I still woke up during the night because of it but it got less today
Also it feels like the joint pain got less and mainly the pain of the sore muscles is less
Didn't sublux my shoulder last night so I consider it a win

[boreal kettle]

I am considering it because my work is no metal so i have to be wanded every time I go in. It annoying

thats good results for only a day!

I am allergic to adhesive so i would need the spray that puts a layer over your skin first

[boreal kettle]

Update. Ramps are fine with proper grip!

gloves

Necessary

[slate creek]

Still need some hahah

[onyx bison]

Hi! I’m wondering which mobility aids would be best for when I’m having to walk a lot (like when I’m out with friends) bc afterwards I can be in a lot of pain in my legs, but i don’t know how to describe the pain bc it doesn’t feel like muscle fatigue

[bronze oxide]

I have a back brace now ☺️

[odd oyster]

Hey I need some ideas for wheelchair backrests. My current wheelchair is custom, but was customized several years ago when my needs were vastly different. My current back sits extremly high which limits my movement when pushing. To get my custom wheelchair (which funded through the hospital) I had to fight increadibly hard, which is why I do not want to go through that route if I can help it. Most options I have looked at online are ordered in through a health provider or something similar, not direct to client.
Does anyone have ideas of a cheap way I can get a lower back rest? Even if someone has an idea of how to make something?

[unreal heron]

I assume your backrest is fabric, not rigid?

If your backrest is high, the backrest poles will be high too. So you can’t just put shorter upholstery on it unfortunately :(

You could look into a rigid backrest, which can clamp onto the back posts at any height. But expect to spend 300-700 on one. And you’d probably have to saw the backrest poles down anyway so they don’t get in the way of your shoulders

Is there no way you’d be able to go back to your wheelchair provider, and ask if they can fit a new backrest that’s more appropriate to your needs?

[odd oyster]

I have a rigid backrest which is held on with brackets. I can take the backrest off to fold it down.

[unreal heron]

In that case, you will probably just have to slide it as far down the canes as possible until you can get a shorter one :(

[boreal kettle]

Could i see a picture?

[onyx bison]

Forgot to mention that I do also use compression socks but they can only do so much

[onyx bison]

Also it’s mostly my legs that get affected by the pain

[boreal kettle]

So the whole back isnt super high. Could you cut the top off? And the sides? And the sew it back

[odd oyster]

Not really, because it's solid metal and foam, and it also feels wrong to cut up a perfectly good back.

[vale gorge]

Can’t you get a new backrest?

[boreal kettle]

Oh, yeah. I thought it was just fabric

[odd oyster]

They cost alot, also considering my chair is custom. One of my struggles is how much I had to fight the system to get this chair when I was in desperate need of it, so to try get a new back which wouldn't be defined as "necessary" is very difficult.

[vale gorge]

Oh

I wanted to get a new chair but it costs too much

How did you get your chair ?

[gusty igloo]

Could you maybe trade it? like is there any way you could put it on facebook marketplace or something as a trade for a smaller backrest?

[waxen latch]

I went for a walk a few days ago thinking it would be fine but now my knees have been hurting more again. I'm helping a friend paint his room today which means I'll have to stand up a lot, so I put on my knee bandages (plus compression socks). They help a bit but I really hope I can get proper knee braces/orthotics soon because the bandages slide around a bit and need to be readjusted which is annoying. I also can't really sit down when wearing them bc the fabric bunches up in the back of the knees and causes pain and numbness after some time. They're also a bit itchy and need to be worn under my clothes so they cause sensory issues (I usually don't wear any kind of tight fitting clothes bc of sensory issues).

[slate creek]

Saying goodbye to my first ever wheelchair is for some reason waaaaaaay more emotional than I expected 🥲😭

[odd oyster]

It was funded through the hospital as where am we have a free healthcare system. When I got this chair I was paralyzed from my FND, and the hospital provided chair was inadequate for my needs. We had to fight so much for them to fund my current chair.

[odd oyster]

I've had a really good look online for options but they are all well out of my price range, especially since I'm starting uni this year. Also my country doesn't have many support groups for wheelchair users, or options online when it comes to buying second hand.
Thanks for the thoughts though🥰

[vale gorge]

Oh

[still crest]

I’m tryna get a rollator as my FND has become worse and I’ve been having episodes of paralysis and numbness I had a TIA (||FND stroke||) last week and I’m still recovering,

I’m not sure if I actually need one tho as I can walk but my leg just hurts constantly and I’m in constant pain without any explanation.

[odd oyster]

I think I'll just leave the backrest idea for now. I can potentially mention it at an upcoming appointment. I just am worried that I will be dismissed, or they will argue against the wheelchair.

Thanks everyone for their input though🥰

[odd oyster]

If you think it would help I'd recommend getting one. A rollator is for if you can still walk but need more support still which seems to fit what your describing.

[still crest]

It’s just convincing my dad is a difficult bit as I’m currently in recovery and leg has been getting better but I can’t walk long distances so I need to sit down occasionally

[odd oyster]

Is there anyway you can mention it an appointment or to one of your doctors?

[still crest]

I have a neuro app in march

I’ve already had two more minor episodes since the first big one so I’m like ack

[odd oyster]

Is your dad generally supportive?

[still crest]

Yeah he’s amazing he allowed me to gets walking stick and helped me get comfy with my gender etc

It’s just he likes to wait on things and he’s usually right about it but I’m worried I might have more episodes in my legs

I’m in pain almost 24/7 thanks to something that it’s been investigated atm so I’m hoping if I get one it’ll help

[odd oyster]

I reckon you to talk to him then. Explain to him why you think it will help and how your health is impacting your day to day life. Maybe try find some options that you can show him as well?

[plush thicket]

Does anyone have an recommendations for easy walking aids for school? I'm not sure how my parents or teachers would react, but sometimes I could really use something for my POTS syndrome

*any

[odd oyster]

Walker for support and to sit down as needed. Wheelchair is good for sitting and getting around. Canes and crutches can provide support and reduce fatigue.

I'd say that a cane or crutches will be best for limiting negative reactions, however people will ask questions either way. I'd look for the best option for what you need and the severity of your symptoms

[night lynx]

Used a cane for the first time today, it helped way more than I thought it would, but I didn’t use it much and my legs are incredibly shaky

[waxen latch]

The knee bandages helped quite a bit yesterday but I did have to take them off halfway through the day bc they started to cause pain and get uncomfortable. I'll try wearing them more often for things like going for walks to see if they work as a preventive measure. I'll still ask my orthopedist if there is a way I could get proper orthotics through insurance. Bc I looked it up and they cost like 10x more than my bandages (I apparently got the cheapest option which makes sense I guess) 🥲

[wide walrus]

GG @waxen latch, you just advanced to level 4!

[rugged slate]

Anyone have any recommendations for wheelchairs?
I’m looking at one to use for long distances. Like for museums, aquariums, zoos etc.

[unreal heron]

Tbh if it’s only at long distance entertainment venues, they normally have ones that you can borrow for free (or borrow with a refundable deposit)

It won’t be the most comfortable or easiest to get around in, but no point spending many £££ on something that you don’t use very frequently!

[unreal heron]

There are some brands of standard wheelchair that can be modified a little, making them slightly easier to self propel in. I can find some if you’d like?

[jolly hazel]

jumping here with an "off topic but on topic". few days ago i saw on a social (maybe ig) a person (she/they) which uses both walking canes and or wheelchair, and they decorated lots of their canes! also she matches them with outfits here and there! i love the idea!!! did you ever decorated a mobility aid??

[wicked sequoia]

Ive decorated my cane (its still slightly christmas themed but idgaf atm)

[waxen latch]

I don't use mobility aids that can be decorated at the moment, but I did help two of my friends decorate their mobility aids.

[rugged slate]

Well I was also going to use it for during college. But for now just long distances.

I’m working towards forearm crutches for school right now.

[slate creek]

Yup
During Christmas season I decorated my cane with fairy lights

[lucid laurel]

found out that my insurance will cover a wheelchair

[wide walrus]

GG @lucid laurel, you just advanced to level 4!

[wicked sequoia]

Yay

[odd oyster]

Yay!

[fair vessel]

yay!!!

[slate creek]

Yaaaay congrats!!

[odd oyster]

I was just in the supermarket using my crutches, and some random lady came up to me, asked what was wrong with me, and then when I told her I have problems with my hips (I get chronic pain in my joints and I didn't know what else to say) she said she'd pray for me, Jesus loves me and God bless. Like I know she means well but coming up to a teenager who is wearing headphones and minding their business, and asking what's wrong with them is just weird.

[slate creek]

What the- 😵‍💫

[balmy cradle]

Oh gosh people... 😭🤣 They unhinged and they don't even realize it

Hello friends ! I’m in the process of buying a new car and I was wondering what features to look out for in a car that could help or alleviate the discomfort of driving with EDS (and AuDHD).

What adaptive things do you have in place to help you ?
For reference I’m an ambulatory wheelchair user, I currently lift my chair without taking the wheels off in the boot of my small 2001 opel corsa. (The back seats are folded down to allow that)
I use my seat cushion on the car seat otherwise I’m too short to drive comfortably (5’2or 158cm)

I was thinking about getting a spinning knob for the wheel to help with my fingers subluxating or awkward positions when maneuvering

[bronze oxide]

I use a crane and knee brace

[bronze oxide]

Since I started use a cane people ask a lot rude questions. The other I have one person ask my why I walk with a cane, because I look like I walk just fine. I don't think she knows what a crane is for.

[onyx bison]

Hiiii, wondering how to ask my parents about the possibility of me using a mobility aid. I’ve asked my mum before and I didn’t like how it went. Honestly I don’t remember it very well even tho it was only like a week ago.

It ended up with me trying to explain my pains to her (but I do really struggle to describe feelings and sensations)

And then being told no

[onyx bison]

Ok I asked and it went well 👍

[onyx bison]

Wondering if here are any mobility aids that can reduce the distance I need to walk while I’m doing long distance, bc I experience pain a little bit after I start resting from long distance walking, I’ve figured out that it’s the distance that causes the pain and not the fact of putting weight on my legs. A wheelchair feels like a bit much I am willing to use one if it is the only option, seeing as while things like a rollator may be helpful, they don’t address the main problem bc I still want to be able to move around without having to take a bunch of breaks to sit down

I would also like to remain independent so that I’m not being pushed around by other people all the time

[still crest]

You might wanna look into a rollator! I’m hoping to get one for long distances!

[onyx bison]

Thanks!!!

[still crest]

No problem!

[odd oyster]

Does anyone have ideas of any wheelchair friendly activities I could go out and do today? I'm sick of being at home and have enough energy to do something fun.

[rugged slate]

Museums, aquariums, zoos!
I don’t know of any free options

[onyx bison]

One thing I’m a bit worried about tho is that I would still need to walk with it, and I’m hoping to reduce the amount of walking while not having to reduce the amount I’m moving around if that makes sense? If I can’t find one like that tho a rollator sounds like a good option

[still crest]

Yeeee makes sense!

[night lynx]

Not my experience but my host identity mom last time we were there got a new cane for her walking issues to to a back injury. We think the year before and not only does it help her get around the house way easier but its helped them enjoy nature more and they got it in a really cool reflective shiny red and black

[zinc abyss]

getting crutches at the pharmacy this afternoon. walking has been really really hard

im very anxious and scared people might judge me, i go to uni everyday, i dont like being stared at :(

if anyone has also struggled with starting to use a new mobility aid in front of people please help /lh

(my rheumatologist initially suggested a wheelchair which i can't use for now because of my shoulders, i get really bad postural pain when sitting, so we settled on crutches for now)

i will probably only use 1 crutch due to wrist pain and instability, so i can switch sides when needed instead of using 2

[unreal heron]

For what it’s worth, crutches are the most ‘normalised’ mobility aid. People use crutches suddenly all the time for injuries - you’ll probably get a few people asking ‘what’ve your done to yourself’ but that’s it! No one will judge you I promise!!

[zinc abyss]

that is true!

im also kinda uncomfortable ngl like if someone comes up to me "oh what happened to you how did you injure yourself" ill be like "uh... life? being born??? 🧍"

im gonna prepare some answers like "i dont want to answer" or "thats personal" and practice them before going back to uni on monday i think

but youre definitely right like people are used to seeing crutches. many people have already used crutches at least once in their life, often for an injury like a sprain

[zinc abyss]

got the crutches, pls let me know if you have any decor suggestions <3

ive been thinking about decorating the grey/silver part with patterned tape or gift wrapping paper!
im a bit less stressed and getting used to their presence in my room LOL

pls @ping if u reply :P

[gusty igloo]

I have heard that Crikut vinyl can be really good for decorating crutches. It stays on things really well, sticks on and comes in lots of super cool colours!

[zinc abyss]

ohhh cool!!!!

i think gift wrapping paper might be less expensive tho

thank u :D

[pulsar quail]

You could also use skateboard tape or bike handle tape as well! They are usually a bit cheaper and come in loads of colours and patterns!

[zinc abyss]

tried them yesterday and it didnt go well :(
first of all i was extremely anxious and felt like everyone was staring and like i looked stupid
this isnt the worst part 🧍
the worst part is i actually got hurt more than usual while using the crutch 🧍
my knees were in a LOT of pain and my hip kept subluxating it was honestly horrible /nav
and ofc my wrists hurt but i knew that'd happen
but yeah
im still in a lot of pain and have a hard time walking
didnt bring the crutch today as i figured it'd be more of an inconvenience :(

(yes i copy pasted this from another server)

[unreal heron]

Sorry that the experience wasn’t a good one for you :(
Crutches do take a bit of a learning curve at first.

If you’ve double checked that they’re sized properly for you, try having a practice at different gaits? Idk how you were using them, but certain gaits put more stress through your legs than others - it could be worth switching?

[pulsar quail]

Need to speak to mum about wheelchair stuff but she’s been so against it when I bought it up last time. I’ve almost saved up enough so I should be able to order it in April time I just want her to understand why I need it even though I don’t have a diagnosis yet

I’ve been referred to genetics as my neurologist has been stumped from the start

I don’t really know how to bring this up to her

[pulsar quail]

My main symptoms are: high muscle tone (legs affected only), dystonia (all 4 limbs) brisk reflexes, poor coordination in my hands and fatigueable muscle weakness which affects my whole body

[zealous flicker]

Still no mobility aid
Our leg keeps giving out when we are on our feet too long and we still don't know why
We are to scared to ask our parents and when our therapist mentioned it they didn't do anything about it or even question or like anything to acknowledge it
But we are going to try and find the cane I remember seeing around the garage or maybe the house years ago
We hope to find it but like we said it was years ago

[boreal kettle]

Yeah

[dusk forge]

does anyone have cool crutches (the brand)? i've been debating getting some but shipping (and the crutches themselves) costs a lot

[wide walrus]

GG @dusk forge, you just advanced to level 3!

[solemn gale]

No, I’ve also been considering getting a pair though

[waxen latch]

Does anyone here use knee bandages? They help me reduce knee pain when I have to walk or stand. But they don't really stay in place, they usually slide down or to the side when walking which is annoying. If anyone has any tips how to prevent that, please feel free to share.

[rugged slate]

Like braces??
If so, mine don’t move like that. But I do have mine on tight.
I also use KTape

[waxen latch]

I mean these things

They don't offer as much support as braces but they are cheaper

[rugged slate]

Ahhh. I sadly do not have experience with these

[boreal kettle]

I used to use them but switched to tape

[waxen latch]

My PT taped my knee once but the tape didn't really stay on that well

Like one stripe already started peeling off on my way home

So I never tried again

[rugged slate]

Could have been the tape they used. It also could be because the area wasn’t cleaned and prepped properly.

You’re supposed to use rubbing alcohol (or alcohol???) to dry the skin then put tape on /info

[waxen latch]

Yeah I don't remember if she did that

It was almost a year ago

[boreal kettle]

I find that i can wrap it with a thin layer of sports wrap. It stays very well

[rugged slate]

Does anyone have any cheap forearm crutches that are good??
I just need brands and has to be from Amazon

[bronze oxide]

I use a knee brace

[wicked sequoia]

I use a knee brace

[waxen latch]

I hope I can get knee braces but they seem to be very expensive compared to the bandages I got

I have an appointment with my orthopedist next week so I want to ask him again about maybe getting braces

[wicked sequoia]

I used to use bandages and overall they mightve caused more issues then they were worth(i user them on my ankles before i had braces) also you can get relatively cheap braces from doller stores and such which still work really well(mine are from this japanese doller store i dont remeber the name)

They were all under $10

[waxen latch]

Wow I've only seen braces for like... Multiple 100€
Everything cheaper were bandages

I googled and the only cheap ones seem to be on temu and I'm not sure if I trust that enough for something like braces

[dusk forge]

i have antdvao crutches! im not sure where you're located so idk how expensive shipping and stuff will be for you, but they're cheaper compared to other alternatives (and not medical-looking)

[solemn gale]

Cheap is relative but personally I have the orthostix ergonomic grip crutches and they’re… ok, but not great. They have ergonomic grips but they’re so big that they still aren’t ideal and hurt my hands to an extent (and I thought I had big hands before getting these)

[wicked sequoia]

$10 australian

[rugged slate]

I found some my friend had bought, plus we’re on sale. They are getting here Monday!

[wicked sequoia]

Ooh cool

[rugged slate]

Mhm

(Let me know if I need an ID for this picture)

[viral ermine]

hello fellow mobility aid users, i need some advice

I've been dealing with really bad anxiety around using my walking stick and idk what to do

what should i do

[boreal kettle]

Are you more comfortable with a friend? Maybe go out with them?

[rugged slate]

I get my forearm crutches today!!!

[harsh lake]

I think one is for short-term use and one is for long term use 🙂

[viral ermine]

my friends are comfortable with it but it stresses me out a lot

[harsh lake]

so have i for like school

i legit try mask everything which doesnt help

not necessarily the best advise, but i went with my anxiety

[viral ermine]

yeah masking is not the best idea

[wide walrus]

GG @viral ermine, you just advanced to level 2!

[harsh lake]

is it for school?

[viral ermine]

mostly school yeah

[harsh lake]

i put mine in a locker and use if 100% needed

[arctic cove]

what helped me most ist putting cute stickers on my crutches to make them fit my clothing stlye/aesthetic.
like yes, they are mobility aids i need to get around. but also yes, they are fashionable and part of my outfit.

[viral ermine]

i've done that for mine too, im just hoping it works soon

[harsh lake]

my friend at christmas wrapped it up in tinsle

and lights

[viral ermine]

thats so cool

[harsh lake]

looked cool

[slate creek]

Whoooo finally had a doc not go 'you are too young to use a wheelchair and don't need it' but go like 'does it help you? Do you feel fine with that? If so, I see no problem with you using a wheelchair. Do whatever makes you feel healthiest'
(feels nice to be understood)

[harsh lake]

My phyio did this, please buy that doctor a card or something.

So rare nowdays to have a medical professional actually understand that wheelchairs and crutches/sticks are not medical equipment but ARE AIDES TO OUR LIFE.

✊

[slate creek]

The funny thing is, it's the psych doc that told me that it's not just in my head

Gonna do that (but I'll probably only see him again in like 6 months)

[harsh lake]

i've had 3 physcs.

2 were trainees and only 1 of them acc understood.

[slate creek]

Yeah, I was fully prepared to go the "if you think I don't need it try doing this for a week" (also I live up a hill so I tell them that this would be a part of daily routine too) and to think about how much not using the wheelchair sucks for me, that I feel not only better and healthier using it but also that it's easier
Was surprised I didn't have to use this lol

[viral ermine]

that is the best doctor ever

i've just had an mri request rejected last week and its had me slowly losing faith

[slate creek]

Wtf
So sorry that happened :(

[viral ermine]

its ok, i just need to not lose faith in uk healthcare

[harsh lake]

what happened

[viral ermine]

aaaaaa i need to get over my fear of other peoples opinions

[wide walrus]

GG @viral ermine, you just advanced to level 3!

[bitter wyvern]

Finally getting a mobility aid once my doctor approves and I am so excited!

[solemn gale]

Congrats!

[wicked sequoia]

Yayy

[slate creek]

congrats!!!!

[viral ermine]

yippee

[still crest]

I got my rollator!!!

[viral ermine]

woooooooo

[wicked sequoia]

yayyyyyyy

[bronze oxide]

What are the benefits of forearm crutches over a cane? Just curious

[bronze oxide]

I've got acrylic paint on my cane because I'm an art student

[rugged slate]

Personally they give me more stability. They go based off my arm and not my hand.
If I were to use a cane I’d be all over the place.

[harsh lake]

Much more stable and easier to put pressure on

Also prevents dropping

[boreal kettle]

More stability and i can hold things while standing too

[rugged slate]

Mine arent full cuffs (yet) but another way it helps me is my pain changes on side quite frequently.
So I chose crutches

[pulsar quail]

Bringing up the possibility of a wheelchair to neuro in just over half an hour and I’m so nervous

I need something to help me I can’t go on like this

Medication we trialed last summer was terrible it made me feel so groggy

[boreal kettle]

Mine fought me at first

but i got it

[pulsar quail]

I have a diagnosis of fnd now and my neurologist said that fnd isn’t recommended to use a wheelchair even though I’ve used one in the past and found it really helpful (when at theme parks and longer distances)

[keen scroll]

I already use a wheelchair, but I’m planning on getting forearm crutches. Does anyone have any tips for first time users? If it helps to give advice, I use mobility aids for HSD, POTS, and balance issues.

[rugged slate]

If you aren’t sure about them. Get some cheep ones! You get them faster + you can decorate how ever. I would (if you can) talk to a doctor about them. They could either help you use them correctly or set you up with a specialist. Personally, my situation was different as I had someone who was using for purchase and I had the length of the car that they bought sent to me and mine were discounted and they’re cheap so I just decorated them but the person who got them from a friend I know, and I’ve known for like years and They taught me ways that I could use them for how they use them and how they think is like comfortable, but there are many videos on how to use them on YouTube. I know that because I try to look up how to finish the cuff on my mine since mine is only a half cup and it gave me videos on how to use them. BTW, this isn’t ever because I am using voice to type because I am currently doing chores.

[waxen latch]

Today is one of those days where I wish I had actual knee braces or some other mobility aid that keeps pressure off my knees.
I put too much strain on my knees the last two days and now even walking around the house hurts. But today I need to take a shower (standing up), agreed to help a friend with groceries (walking around store), and then have to go to work in the afternoon (hopefully I don't have to walk around a lot there). And I'll take the car to avoid standing and walking even more in public transport. But I'm afraid driving might also hurt, especially cuz my right knee is already feeling worse than the left. And my bandages don't offer the right amount of support for these kind of days unfortunately. They mostly work to prevent pain when I don't have any yet but need to stand/walk a lot.

[wicked sequoia]

Hey so im going to a convention tomorrow, and i was gonna hire a wheelchair- ibe done it in the past and stuff and its helped, but i really really dont want to fr some reason this time, i dont know why, i know that if i just use my cane im not gonna make it through they day with out collapsing or something and then being an issue for my freinds, but also im like what if im just making a bigger deal over nothing, and its so stupid, idk if anyone can give any reassurance or anything, like i know that i should but st the same time i dont want to?

[livid wind]

Recommended cane for fatigue?

Anyone have any advice?

[solemn gale]

I’m being. So very brave rn (family knows about my cane but has never seen me with a crutch before)

[livid wind]

Awwh oh my goodness, you're SO brave. I'm so proud of you! 🥺

[wicked sequoia]

I had a lowkey terrifying interaction today, i was using the wheelchair i had rented and so was my friend and we had left the con and was just sitting in the touristy section of our city csuse it was close, and this women comes up to us and starts asking us questions and telling us abt her son who is non verbal and cant walk, and we were liek ok, little weird to just come up but its fine, and then she asks abt us and my friend says i have brain inflammtionnand i say not sure but we are in the process of figuring it out- there was some other things but it isnt that necessary- and she stsrts to get angry at us saying like my son cant walk and you can get up and walk, and luckily there was a guy next to us and he was like im going to call the cops to her, and said to her leave now their just teenagers, it was terrifying, ive never had an interaction like that before and props to the guy for saying liek stip, and multiple other people came up afterwards cause me and my friend were crying and our other friend was very shaken, like i understand thst her son not being able to walk or talk is hard but to attack teenagers about it?? Idk its crazy, like yea i can walk but ill fall over if i had been walking all day at the con, and ill probably flare up afterwards- i mean im already kinda flared up but like-
Idk has anyone had any experiances like that or similar, it was reay scary especially cause she seemed to ve like nice and stuff st trh stsrt
Idk lmk if i should move this, or censor anythung

[gusty igloo]

I have had so many experiences like that with my wheelchair, nj tube and walking stick. People are so terrible. and I am so sorry it happened to you!

[devout tangle]

That's horrible, I'm sorry that happened. You are totally valid ❤️ PS I also have neural inflammation, hiiii

[wicked sequoia]

Hii

[boreal kettle]

Hello

i need to get a job i can do in my wheelchair

how have people done that?

[gusty igloo]

I just told my job I'm using a wheelchair and kind of just didnt give them an option to say no.

[boreal kettle]

Its not accessible

my job isn't

i need a new job

[devout tangle]

I feel like I need mobility aids because walking is difficult sometimes but what if I recover and don't need them anymore? I'd feel like an imposter

[devout tangle]

I'm sorry about that! I guess it really depends on your interests and skills

[gusty igloo]

I felt exactly the same way. Most chemists sell folding walking sticks for like 20$. I would reccomned trying it out, because then you can just fold it up if you dont need it. I started using mine just inside libraries to get used to the feeling and then realised what a big difference it made and slowly got rid of that feeling.

And sometimes, if you know you have a supportive doctor / allied health professional (dont ask if you dont think they will support you bc that might make it worse) but if you tell them what you said before, they will often support you and agree that you need a mobility aid which is really validating!

[solemn gale]

If you get better and don’t need it anymore you can always donate it, and getting better and not needing it anymore won’t negate the fact that you needed it for a time

And a lot of people who use mobility aids have varied need levels - depending on where you look, you don’t always see it talked about, but a lot of people who use mobility aids only use them some of the time. Personally, I use crutches some of the time, a cane some of the time, and nothing a lot of the time. That doesn’t mean I’m faking on the days I do need extra support, just that my needs vary

[devout tangle]

Thank you for the replies, that's all very helpful!!

[boreal kettle]

I use crutches some days and wheelchair some. And in my house where i can lean against walls and stuff i use nothing

[devout tangle]

Okay I don't know if this is a stupid question but like, how do you use canes? I see a lot of people using them for CFS and it helps to lean on something, but I also feel like it's tiring because of the effort I have to do from my arms to lean on it

[gusty igloo]

I find it really helps with my pots/oh, i get really dizzy and have balance issues and find having another point of contact massively beneficial! Also it helps my fatigue because I am using less effort to stay upright!

[solemn gale]

When your arm hangs relaxed at your side, the top of the cane handle should be the same height as the crease on the inside of your wrist
When you walk, your cane moves at the same time as the leg on the opposite side of your body (sorry, house MD lied to you)
If you don’t have a good side/bad side, it’s generally recommended you use your cane in your non-dominant hand so that you can still do things with your dominant hand
You also really shouldn’t be putting more than about 20% of your body weight on a cane

[devout tangle]

Wow, that's great, thank you!

[solemn gale]

Yep! Feel free to ping me with more questions if you have them!

[viral ermine]

im looking for some advice

i've been using a cane for a while but it doesnt help much with my balance issues as much as i want it to. what other aids can i use that are affordable and my dad would be willing to buy for me or i buy for myself in the future

[solemn gale]

Either crutches or a rollator would probably be the next step up. Both of them are going to offer more stability, and a rollator has the added benefit of a seat, although its a little more expensive than crutches (brand dependent) and is limited to areas without stairs unless you can lift it

[viral ermine]

stairs are so evil

i hate them with a passion

[harsh lake]

i hate the ones with gaps between each step ❤️

[wide walrus]

GG @harsh lake, you just advanced to level 8!

[devout tangle]

Used a cane for the first time in uni today!! Felt brave and it really helped

[solemn gale]

Congrats!

[devout tangle]

Thank you Your tips on how to use a cane were super helpful ❤️

[kind tree]

I was curious if anyone has any advice for if mobility aids should/could be used for fatigue. I'm fully able to walk around and when I work I have to stand for hours on end, so it feels weird to want a mobility aid, but I honestly can't leave my house very much bc of fatigue. I often want to sit down or lean against something, and is that a feasible use for a mobility aid? I'm not really able to exercise or exert myself but I AM pretty able bodied.

[solemn gale]

You could get something like a portable stool or one of those canes that transform into a seat, or you could look into getting a rollator

Or if you think just leaning on a cane/crutch would be enough you could try that

Here’s some alternative options beyond a rollator/‘normal’ mobility aid

[kind tree]

Tysm this is actually super useful!

[mortal lodge]

Hello there dear people, I have been a bit stuck for a while on whether or not I should get an aid and if so what kind. I have noticed lately that my mobility has been declining because of pain and I have been to a physiotherapist a few times because of the pain, as it has gotten so bad that I can't even take a walk towards a supermarket in our town or anything like that without suffering heavily the same day and several days after when I do anything at all, walking will hurt, standing, even sitting if I overexert myself. It is a pain in my hip. I will also be going to the hospital for it soon, but I don't really know what to do. I should probably wait out the hospital appointment, or should I ask my physiotherapist about aids? Because she said it wasn't right how my mobility has been, she initiated the idea of reaching out to a hospital so I'm kinda not sure what to do

[wide walrus]

GG @mortal lodge, you just advanced to level 3!

[wicked sequoia]

I thnk you should definitely talk to her about aids, they seem like they would be very beneficial to you

[azure parrot]

Wait the cane/seat idea is so cool

[vestal quail]

Out of curiosity does anyone have any good folding forearm crutch recommendations? I’ve been looking into getting some and wanted to know what others thought.

[unreal heron]

I have the kmina pro folding crutches! They’re open cuff, which isn’t to everyone’s liking, but I’ve always used this style of crutch and never had issues. They’re nice and light (obviously, being carbon fibre) and I like the sleek black look. They don’t come in other colours tho.

The handles are comfy enough, but prolonged use can leave your hands sore, and the rubber coating nicks fairly easily.

The folding mechanism is nice and easy, and, most importantly, they are SILENT!!!! No clicking noise when you walk.

The ferrule is really soft, which means it picks up all the vibrations from the floor underneath, so I’d recommend switching it out for a dif one if you’re sensitive to that kind of thing

Overall I’d highly recommend, don’t think you’ll find better folding crutches on the market that are silent. Most others with dif handle/cuff designs have the clicking problem (I can’t use ones that click it drives me INSANE)

[dusk forge]

if you're looking for ones with a full cuff (these have a stretchy band) i use antdvao crutches! they also don't click and the handles are decently comfy (but they take a minute to get used to)

i think the main difference to kmina is the closed cuff, but otherwise they're quite similar! it's just which cuff you like the best :)

but you can buy cuff pads for kmina crutches that have cushioning and a stretchy closed cuff!

[vestal quail]

Thank you guys so much for the information! I’m definitely going to look into both of those

[night lynx]

So excited my emerald green special needs stroller to help with my bad back, my knees that give out and my autistic eloping plus stress which helps all my chronic mental health conditions and my pnes was just approved and should be here in 3 weeks 😀. Finally good news with all the stress that has been going on

[boreal kettle]

Yay!!!!

[night lynx]

Thanks I am excited

It looks like this but with my own modifications

[boreal kettle]

Green? Or a different color?

i got myself new crutches

[night lynx]

I chose that green its my august 28th birth stone color

wrestlingunicorn ↩️

[Reply to:](#1208395612853243935 message) Green? Or a different color?

[boreal kettle]

Oh cool

[night lynx]

Even more excited my husband cleaned out the closet for my stroller. Can't wait. Even my alters want to make me something to decorate it with

[boreal kettle]

No fabric, that isn't easily washable

that you can just throw in the washing machine

[night lynx]

That's good tips

wrestlingunicorn ↩️

[Reply to:](#1208395612853243935 message) that you can just throw in the washing machine

[boreal kettle]

Just out of curiosity, why did you go with a stroller instead of a wheelchair?

You don't have to explain if you don't want to

[night lynx]

It makes me feel safer and more secure and I love the way it looks and feels when I sit in it and it is recommended by doctors more for me when I am in my autism non verbal state because I got the chance to test wheelchairs and strollers for a while and doctors noticed how much more calmer I am in them then wheelchairs also it fits in places like my family's home and my other family members homes better so no need for house motifications like door widening and other stuff

Owe and since it fits in homes easier it's easier for me and my husband to look for a place to move on goverment housing instead of needing to limit more due to size is also what we noticed and its also for eloping safety reasons because I have been observed by doctors and family and I don't notice danger when I am eloping so we all said this is better because I can't just wheel around and get hurt. So I said better for my safety better for me. On my record it says can be alone for short periods of time by my self but not to long because I elope and have gotten hurt. This is also something my therapist noticed when I am switched and disossiated because I will come out of it in areas I never knew I was and lots of times I am lost and have no idea where I am when I come out and my husband said he will go drive to find me and sometimes the cops have had to look for me and help me come back home. So I am gonna be using it out and about when needed for those situations to because the stroller after testing has shown to calm my disossiated state. Something about it helps me feel safe so my pshyc, doctor and therapist and family all said what ever makes you feel safe and the way the stroller leans really helps my knees that always hurt feel better because for me sitting inclined helps the pain more then sitting normal to. Idk why it doses must be a pressure thing but it really does

wrestlingunicorn ↩️

[Reply to:](#1208395612853243935 message) Just out of curiosity, why did you go with a stroller instead of a wheelchair?

[boreal kettle]

Makes sense

i want that now that you say it.

Cause i have all the same issues. My eloping is safe, except i just hide for hours and people cant find me. But i go to like closest and stuff. The danger is they don't know where i am and i faint.

[night lynx]

I pass out when I have pnes which is triggered by my mental issues and stress so that can help people with fainting and stuff like that. Because my mom reminded me how when eloping near her she has to pull me out of crosswalks

Owe and I noticed the leaning helps with pressure on my lower back issues to

[meager eagle]

I don't need mobility aids anymore, which is good news, only occasionally a cane when my feet really hurt.

[night lynx]

Ooo are you working with a permanent issue or a temporary one and trying to work on why it is what it is

[meager eagle]

I probably need some orthotics for my feet as they always get tension in the wrong spots when I walk, and multiple people noticed they deviate a little posturally.

I walk just 1.5 km and my left foot is on FIRE

Previously I used to have a more severe issue with my brain

or mind

whichever

[wicked sequoia]

Mm I need to get crutches

Also need to get a wrist brace that isn't meant for fractured wrists, but also I just need a second one

[wicked sequoia]

Whats peoples experience using like carpal tunnel wrist braces at the same time as crutches

[meager eagle]

My feet always end up severely hurting after I do 1.5-2 km, at least starting with one of them and it did just that today again

I'm wondering whether I should just buy 2 forearm crutches

it's a constant issue

So I can just switch one foot to another while giving the other a rest when it starts hurting like it's on fire

I've had problems with mobility for 3 to 4 years, first FND and psychosomatic disorder, then those vanished, now.. pain.

[wicked sequoia]

The chemist im at has forearm crutches, I had gone to buy a wrist brace.. I really want to buy them, I do Kinda need them, but the thing is idk where to hide them

[meager eagle]

whyd u have to hide them?

[wicked sequoia]

Parents

[devout tangle]

Man, that sucks, I'm sorry 😦 /sincere

[wicked sequoia]

I didn't end up buying them but I do have a wrist brace now

[still crest]

Tried my rollator a couple times for my flare ups of chronic pain and TS and it helps a lot! Yipppee!!

Im finally seeing a rheumatologist soon so hopefully i can figure out what is causing my chronic painnnn

[meager eagle]

It does help, although bulky.

[still crest]

Yeah I got one from Amazon

For when I’m having real bad flare ups

[meager eagle]

I have severe foot pain when I walk for more than 1 km. I get this.

I have a cane, but insufficient. Planning to get forearm crutches.

[still crest]

For about 3-5 weeks I got severe foot pain due to my chronic pain, I have two walking sticks that is right and left handed

So I switch depending on what side hurts more

[meager eagle]

I used to use quad canes in a pair

i sold them bc I no longer have FND

sorry if this sounds unasked but also recommend using accessible transportation for walkers, since buses can be crowded and i had so many issues back when using one bc of that + the motion

thats why I keep my disability bus card in case

now i use regular buses

@still crest

[still crest]

I’m terrified of buses so I never use them

I was kinda just given FND without any testing so I’m just hoping to see a neurologist

And get a second opinion

[meager eagle]

I know someone like that irl

mine was diagnosed by GP

[still crest]

I was diagnosed by a specialist

[meager eagle]

Can you sit on your rollator?

[still crest]

Yis

[meager eagle]

ok thats good

[meager eagle]

same no testing for me

this is the wheelchair im selling on kijiji

[still crest]

Noice

[meager eagle]

i donated my first one that was blue i hated using it

having disabilities is expensive

[boreal kettle]

Yup! It is

[meager eagle]

this was my first one

which i donated

But also there's a part of me that just wants to store something i can use in case my feet hurt way too badly and i have a bad day bc of this

My wheelchairs were called Spirit and Angel

[meager eagle]

I would keep it in storage unless I had a day like this and/or plan reeally long walking distances (more than roughly 4 km or 2.5 miles at once in a day) but the root of the problem can maybe be alleviated by orthotics

I can just use the bus tho

im talking about a type of wheelchair yes.

[devout tangle]

That's great! May I ask how it went away? You don't have to share if you don't want to

[meager eagle]

Miraculously😅

[still crest]

I’m debating if I even have FND as I have ||tics, NES and Paralysis attacks|| and my doc is not willing to explore any tests to see if there’s anything that shows it’s not FND Related or if everything comes back normal

[meager eagle]

A person can have a combination of conditions, like me who once had FND + a psychosomatic illness

Although as for psychosomatic illnesses I wouldn't want to ascribe someone with signs of FND to just that since "psychosomatic" can sound dismissive.

You don't typically see FND with an MRI, my tests also came back normal

[still crest]

Ik but I wanna see if my conditions are actually FND or not

Cause I had zero tests done

[still crest]

I just feel like I was kinda jusy dismissed with everything I’ve got and I just want clarity

[meager eagle]

valid

[still crest]

I got my symptoms called physcosematic at first until I got the diagnosis of eventually Tourette’s and that’s why I’m so adamant about getting tests done

[meager eagle]

I once thought my case of FND was caused by infection in the brain or smth from a series of events but I don't think that was the case.

I genuinely do not understand or know what triggered it

[still crest]

I just have these random symptoms pop up out of my control and it’s like huh

[night lynx]

Excited. Got a update on host identity special needs stroller. Due to ship the 28th and be here early may if everything goes well

[meager eagle]

awesome!

how will you use it?

[zinc abyss]

plus isnt FND supposed to be a diagnosis of exclusion? /gq /nfta

[still crest]

Mhm!

I was given like 3 diagnosis before Hand Like physcoseamtic tics, transient tic disorder and then FND

[zinc abyss]

yeye but. TS doesnt explain the rest of the symptoms ure experiencing so like. testing is definitely needed. i really hope ur upcoming rheumatologist appt goes well

[still crest]

Mhm! I hope so too

Thank youuuuu

[night lynx]

We will be using it for when we go out and about with others because most the time do to many factors like eloping and dissociation that causes us to end up in many places we aren't supposed to be plus knee and lower back issues we are most the time not alone but with family like our host identity husband. It will help take pressure off the body and keep our stress lowered plus it can be used when walking gets hard for the body's knees and can even hold our medical bags that can get pretty heavy to, also great for public busses in our area since we can't drive and will still need to go places with family on bad walking and extra stressful days that are full of eloping for safety reasons we didn't get a wheelchair since were more comfortable and safe feeling in these and none of us can wheel around when using it while duing eloping causing us to get lost and confused just like when eloping without it as well. Most of the system wide issues and body issues make it so we can only be alone for short periods of time unless at the house or having a friend or neighbor check in on us or having our medical workers help us to as well. Plus they are very comfy and lean back taking pressure off our lower back and knees better then when we still up right

Talia (ping me for reply) ↩️

[Reply to:](#1208395612853243935 message) awesome!

[onyx bison]

Walked just over 6km today, surprisingly I’m not feeling like I’m in too much pain but of course it’s still there and to be expected. I’m hoping that it isn’t just luck and is actually bc of my physio. Really not sure about if a mobility aid of some sort could be helpful. A few months ago I was completely convinced it would but now I feel like I’m overreacting and just wishing I need one? Very confused, still don’t want to leave bed rn for ice cream but that might be bc I only got 5 hours of sleep last night when I usually get at least 8

Wondering what other people think

[meager eagle]

I've been in a similar position as you regarding being on the fence about mobility aids, even very recently.

I wouldn't be able to do 6 km. I would be in too much foot pain.

I've wondered if I could just use a powered wheelchair for such long distances.

But only use it in such instances.

Anyways, I have a podiatrist appointment today.

[devout tangle]

I found that I couldn't really get rid of the doubt until I tried one and could see if it helped (found out it did). I know that might be difficult because they are expensive, but sometimes there are places that let you rent aids for a while and try it out without buying right away. So maybe you could look into that? Also, more often than not, if you wonder whether or not you need one is because it would actually help

[arctic cove]

i finally got a cane that fits my needs and i didnt need to pay for it myself! it has an anatomic handle and a tripod rubber tip. it will give me more stability, less hand pain and it can stand on its own.
i decorated it and so far im really happy with it! will send a picture.

also if my insurance approves, i will get my AFO soon!!

[gusty igloo]

that looks awesome! I love the decorations!!

[devout tangle]

I love the queers against capitalism sign 😆

[wicked sequoia]

Want to join Queers?

[devout tangle]

I am queer and against capitalism is what I meant haha

[night lynx]

I am queer and against it to

[wicked sequoia]

Yes

Me too

[bronze oxide]

I have a question: How do you keep from feeling socially isolated with limited availability to do activities or go out? I going to put this in the POTS chat too, because the social isolated stuff is related to both.

Also does everyone know where I could get a Folding wheel chair for cheap

[bronze oxide]

Me too

[meager eagle]

I recently ordered one from Temu at 300$ with shipping fees included. I'm currently awaiting its arrival.

It seems like a good wheelchair

manual

I understand your pain well, FND used to isolate me for 2 years

[waxen latch]

Some ideas: (video) calls with friends, attending online events (like look out for support groups or crafting classes or other community events that interest you that meet up in video call), sending and receiving letters or packages from friends can be really nice too

[meager eagle]

I no longer have it but I ordered this chair for foot pain, although I have it less now it could resurface

[boreal kettle]

Some guy wanted to watch me get in my car after the interview because he wanted to see how it works with muffin and my wheelchair and I was like ummm, it just looks like you are just staring at something and you are a random man and it's just the two of us in the parking lot and please go away. He explained after but ummmm, please no. That is weird. I am just trying to go home. So yeah. People are weird and it felt very unsafe

[night lynx]

Well our mobility aid arrived and got adjusted. we love it

[night lynx]

It's big green, makes all us in the system feels safe, it's bus ready, washable, weather ready and even leans back making us feel secure in the shoulder straps

[boreal kettle]

Yay!!

[devout tangle]

That suuucks, I'm sorry

[arctic cove]

got my AFO!!! does anyone else here use one? if so, does one get used to it or will it forever feel like theres a spring on my ankle?

[devout tangle]

What is an AFO? If you don't mind me asking

[elder gale]

genuine question, sorry if it's been asked before or if it comes across as insensitive, that's not my intent. Can you use mobility aids if you're not disabled, but think they might help anyway?

some background:

• I don't have any conditions that I know of, but I work a job that's physically demanding for me and I often have a lot of pain in my legs/back/shoulders after standing for so long. I'm often wiped out after my shifts and I wonder sometimes if it would benefit me to have a crutch, or one of those push-walkers (I've moved them for friends and grandparents and they just seem really convenient).
• Also, I suspect I have PMDD (need to talk to a doctor soon) because I have literally every symptom and the week leading up to/during/sometimes after my period I am EXHAUSTED, like can technically stand up for long periods of time but really find it hard.
• I've had the same lasting injury in both knees from years of dance. My knees and ankles just straight up roll/pop out of place and back into place rapidly for fun. That's gotten better since changing my shoes and my stretches and workouts and whatnot, but it's still noticeable. If it matters, I often wear layered cheap knee and ankle braces to help, with varying effects

The thing is, because I don't have any chronic conditions or physical disabilites, I get an immediate shame rebound from thinking that train of thought. I don't want to, like, misrepresent or take resources from people who need them. I don't have a good understanding of what the threshold is to need an aid (since all of the things I listed are at least somewhat situation-dependent). Thoughts from the community?

gathering the courage to post this now because I just finished working an almost 12 hour shift (I was doing overtime) and I had like three separate problems flare up during that time (including tendonitis/carpal tunnel type problem I also have where my wrists and hands hurt like hell and I can't hold stuff, but I have splints at home for that), and now my whole body hurts so much 😭

[devout tangle]

So, I can't speak for anyone, and I definitely want to hear what other people have to say about this but in my opinion:

1. Aids are TOOLS. Tools. That's it. Objects that help people (e.g. glasses may sometimes count as mobility aids). If you would benefit from having one, if you feel like it might help, then USE them. That's what they're there for. For example, if you had slight vision problems, you would get glasses because they HELP, but you wouldn't wonder whether you deserve them because other people need them more.
2. There are plenty aids for everyone. Buying an aid for yourself doesn't take anything away from anyone. If you wanted to buy a book about engineering but you were not an engineer, would you worry that you are taking resources away from actual engineers? No, because there are plenty of copies for others.
3. I understand the struggle, mentally, of wondering whether an aid would help you, and the shame of feeling like "you don't deserve it". In my experience, you will never get rid of that feeling until you actually try one and see if it helps. And, if you find out it does, then that's a good indication you need it. The general rule is that people who don't need aids would find them annoying rather than helpful. But I don't think it's possible to get rid of that doubt and shame by only thinking about it.

I'd suggest looking into something really cheap to try out for a while, or look up if there are any places that rent aids for a while in your area.

[devout tangle]

Sending love

[elder gale]

rip to you I try to stay in my interest lane because every time I try something new I feel like I'm intruding 😭

that's a therapy issue though

[elder gale]

true on the 3rd point also. I say this to people because I have a lot of disabled friends. we should just let everyone who says they need accomodations have them because the fakers will quickly realize it's super inconvenient and everyone else can benefit. However, I think it's partly that I KNOW a lot of disabled people that makes me feel insecure. Like I know they would never tell me not to. They would be supportive or not care, they literally get it. But part of me is like oh no what if they think I'm, I don't know, romanticizing or commodifying them somehow?

anxiety disorder coming in clutch on that one

thanks

there's also the part of me like if anyone who knew me in the past or has any conception of me at all saw me with an aid they would make The Judgements(tm) and I'd have to sink into the floor immediately

because I was the resident weird kid everywhere I went no matter what I did and I worry that everything I genuinely struggle with makes me look like an attention-seeker

I'm not necessarily ashamed of myself,, I try not to be. But I am very sensitive to the way people might percieve me. I know the truth but if they do not also know the truth what's the good

I don't NEED them. Like, I'll keep. I just wonder if it would make the fatigue and pain and other joint stuff easier sometimes

[devout tangle]

I honestly get it. I felt the exact same way. But think of those feelings as fear. How do we deal with fear? Facing it, realizing it's not as bad as we think it is. When it comes to being yourself (saying this as a fellow resident weird kid) it's just another act of bravery you have to PRACTICE. Practice is the key word here. If this scares you so much, try it one day, and increase the frequency you use them for if it helps. When I am afraid people will judge me, what I think of is, would I want to be friends with someone who would judge me so quickly? No, I wouldn't. Then I shouldn't care what that person thinks of me.

When it comes to your friends, I would talk to them about it. I know that might also sound scary, but if that's a big issue for you and they are real friends then I'm sure they'd be open to talk about it and reassure you. And say all of this to them. That you are wondering whether it might help, that you're scared people will judge you, and that you are afraid they will think you are romanticizing them or whatever. That's the only thing I can think of that will help you get over that particular point.

[elder gale]

true

you're very well-spoken

I really appreciate it

it helps to hear stuff you already know from someone else sometimes

[devout tangle]

Like I said, they are tools. Most people don't NEED mobility aids in the sense that they can't live without them. Most people could live without aids, but their lives would become extremely restricted. For most, the point of using aids is to be able to do more without dying afterwards.

But I understand all of your fears and doubts. Honestly, while I'm giving you advice, I'm going through a similar journey myself. I've been losing mobility lately, at a more accelerated pace than before. Yet, I have soooo many doubts about using aids. But like I said, I don't think we can get over it until we try; until we face our fears. If you ever need to talk about this more you can always dm me /sincere

[wide walrus]

GG @devout tangle, you just advanced to level 6!

[devout tangle]

You are more than welcome!

[devout tangle]

Thank you :))

[devout tangle]

Totallyyyy

[elder gale]

I suppose that's true. I think of my friends as needing them, because they wouldn't be able to do much without them. Because I can do most things, I think of myself differently

but that makes sense

I think it's sort of unregistered in my brain that people with mobility aids are just people who also went through this. Because I'm so accustomed to seeing them as like, part of that person. There was a point at which they were probably not confident. That's good to remember

validating, at least

probably also the time where I remember that (dis)ability is a social construct, in the way that there isn't a sudden cutoff that makes someone disabled or not. Especially because there are so many factors, like what ability we're measuring and the fluctuation of chronic illness. Perhaps (and obviously people are free to correct me on this, I'm the one asking so what do I know) mobility aids could be for anyone who feels they help, and it's internalized ableism that causes so many people to think they can't. Your example with glasses was insightful.

I was also going to ask what if, when I end up doing a less strenuous job eventually, I may not need support anymore? and then it occured to me that people have canes and crutches for temporary injuries and it doesn't change the fact that they certainly needed it at the time. So if anyone here needed to hear that, there you go

[devout tangle]

Trueee

[devout tangle]

And THIS is my main issue at the moment. I've had to cut back on so many things recently, but I keep thinking, what if I recover and don't need them anymore? I feel like that would be "proof" that I was faking the whole time. But as you said, the fact that someone recovers doesn't mean they didn't need them. I love that we are helping each other, and saying things the other needed to hear.

I also think a lot about colonialism and capitalism, and all the systems of oppression. In my opinion, the system has programmed us to think that only permanent things are valid, and that the natural fluctuation of life is wrong. The system benefits from this thought patterns. It happens a lot with the discourse of "it's a phase" towards the LGBTQ+ community. So what if my identity fluctuates? That doesn't mean it's not valid.

I'm trying to work towards collective liberation, so I'm trying to decolonize my mind and change thought patterns such as this one.

PS you're nice; could I send you a friend request?

[elder gale]

sure

[elder gale]

omg people who say any part of discovering a queer identity is a phase grind my gears. The moon has phases, it's still the damn moon 🙄

my friend said that to me once and it changed the way I view everything

[devout tangle]

WOW that's a great example. That will be my new catchphrase

[elder gale]

right??

also there's obviously nothing wrong with having permanent aids, but if you do only have them temporarily that means you're less unstable or in pain or inhibited in some other way than you were before. It's not a bad thing to have temporary aids.

the whole goal of the disability movement is accessibility, so if things are more accessible to you now than they were in the past I feel like that's a win for you. The aids probably helped you get there, because you weren't pushing yourself too hard without help when you needed it.

I dunno. Just musing

I hope this helps someone

Anyone else please feel free to give your input on my original question too. I do want to know.

[arctic cove]

its ankle foot orthosis, a brace that keeps your ankle and foot stable and helps you walk better. in my case its a pretty light one and helps my not drag my foot on the floor when im walking cause i have foot drop. this is what mine looks like

[elder gale]

Oh shit man this probably would have helped my ankle collapse issues at their height 😭

[devout tangle]

Ohh, cool, thanks!

[chrome lichen]

Hello, so I've been kinda vaguely thinking about maybe looking for a mobility aid but I don't know if I have enough or a real enough problem to need one? My main problems are that sometimes I feel really dizzy and almost faint-like maybe after standing for a while once or twice every two weeks (or less often I'm really not sure) and also sometimes my knees give out a little bit (I've only fallen once, I usually regain control before I fall) and that's pretty much it. I'm not really sure what would help or if I would even need something at all?

[gusty igloo]

I think with mobility aids - especially if you dont have access to an expert - at least in my experience - its something that just takes a bit of trial and error.

The thing that really helped my pots was buying a cheap walking stick from the chemist. It only cost like 20$ so i felt like even if i didnt need it I wasnt losing too much. It really helped me to have another point of contact as I felt less wobly. And honestly a really big part of it was also showing to the world that I was fragile and needed more help (sunflower is not recognised much here and where it is used is for neurodiversrity so people don't see you with a lanyard and think you need help) and that is also a very valid reason to use an aid!

[primal tusk]

I'm getting silver ring splints soon and i was wondering if anyone else has them and how they have helped if they did :))

[zinc abyss]

i made myself some bc theyre very expensive. and they really help for me!!

especially with typing. when i type (which i often do bc im in uni and cant really handwrite) my last knuckles hyperextend the wrong way. it does not necessarily hurt, but it is bad in the long run and it makes my finger slips -> typos.

thanks to the ring splints my last knuckles stay straight and it is actually so much more comfortable to type!!

i did not fully realize how unstable they felt when typing until i tried the ring splints on.

[primal tusk]

Thats so good to hear!

[zinc abyss]

pictures of the handmade splints :) (image 3 censored for hyperextension, might look uncomfortable)

hope theyre helpful!!!!!! (ur splints)

[elder gale]

Just looked up what ring splints are and that’s so creative omg. Like they’re so cool. I feel like you wouldn’t know that’s a mobility thing unless someone told you, which can probably be a bonus for a lot of people feeling insecure. I’m glad it helps! Low key looking into this now because of the problems I’ve been having with my hands at work

[elder gale]

What did you make these out of? Just jewelry wire?

[zinc abyss]

i used thinner wire because. well. i couldnt find bulkier wire. /neu

@elder gale

[primal tusk]

Thank youuuu!!

[wanton pagoda]

i’ve been using my cane for a while now and i would love to love to decorate it as it’s a little boring. the problem is everything i see on the internet is marketed for people with a very ‘cutesy’ style ( i have no idea what it’s call but it’s super cute) and as i dress vaguely gothish it would look a bit weird. does anyone have any tips for decoration?

(i’m not sure if this is the right chat i will move it if it isn’t :D )

[night lynx]

Try the kinda cane like hurry. It is simmilar to it but works better with feet. If you want to. Our host identitys mom had that kind you showed and then they decided to get hurry due to the 4 feet thing. It helpes with balance for back problems and helps her ballance when her stopmach spazes as she calls it causing her to jerk off balance

Calliope ↩️

[Reply to:](#1208395612853243935 message) i’ve been using my cane for a while now and i would love to love to decorate it as it’s a little bor… 📎

[zinc abyss]

spikes could be cool if u like those! maybe dangling chains. and stickers? u could also paint/draw stuff on it.

that one looks pretty cool

[wanton pagoda]

omg i hadn’t thought about painting it those spirals/cobwebs are so cool! thank you! the sticker are also a good idea! thanks so much! i’ll post a picture of the finished thing when i get around to it! ( it might be a while)

[zinc abyss]

yayayay!!!

i also know some ppl use stuff like. masking tape, vinyl paper (i think thats what its called), gift wrapping paper... and stick it to the cane :D u can make it an entirely different color that way (like if ur cane is white but u want it black, u can stick black vinyl paper on it)

example! (it is a wheelchair but works on canes too)

[wanton pagoda]

omg that’s so cool?!? the little spiders are adorable. i’m totally using that for cosplay at some point thank you!

[zinc abyss]

have fun!!!! :D

[wicked sequoia]

Ty for reminding me to redecorate my cane- painting it instead of taping it this time- it's half painted

[elder gale]

if you have the dexterity (or have a friend who does) crochet some cobwebs for it!!!!

stickers also make it very customizeable as others said

customization of these things is so cool actually. I want to crochet some covers for my wrist braces, but I'll have to be careful since that's ironically part of the reason I need them in the first place

[wanton pagoda]

Omg crochet is such a good idea! Braces decoration is something I had not thought of.

[boreal kettle]

I crochet. If anyone can find a pattern. I would love to try

Crochet a cover for the wrist brace I need to crochet. Lol

[elder gale]

Just make granny squares or other big rectangles and leave thumb holes up the sides

The same way you’d make a normal arm warmer just make it big enough to fit around the brace

Some examples

The star ones are made with granny squares, so any granny square pattern you want would work

I’ve done them before

Obviously make the cuffs as long and wide as you need to fit your braces

These are all from Pinterest btw I was just trying to gather a large variety for you

I made these frog warmers for my friend for Christmas

You could make something like that but longer if you wanted

[boreal kettle]

The frog!!!!;

Omg

[primal tusk]

I'm getting flexibe ankle "braces" soon because i walk on the inside of my feet and i was wondering if anyone has them and if they help :)

[night lynx]

Wait our host identity dose that to but on the outside of their feet. That is one of the reason why we have them wear the blue gray Billy shoes a lot. We have been told by their husband maybe we should get checked out for braces as well for that but we all have talked about it and are not sure it should be done and are hesitant to really come up with a decision we might make in the future

[shadow turtle]

im buying some rn lol

[primal tusk]

Oooh thats cool

[neon horizon]

I spray painted mine and drew on it. I love it !

[wanton pagoda]

This is all very cool I need to learn how to crochet now! :D

[shadow turtle]

just got my compression ankle braces and i love them!!

[solemn gale]

Hiii Im súper late but if you feel you might benefit from an aid, you are absolutely allowed to use it! Just because you don’t identify with the label disabled, that doesn’t mean you’re barred from using a resource that may improve your life

Just make sure you read up on how to size and use aids properly

And if it ends up being unhelpful, you can always donate it or something

[solemn gale]

Stickers are the most obvious option, but really anything can work if you get creative enough. You could absolutely do things like spikes or chains if you got some glue. Personally I have a bunch of stickers on my cane and also have made several fabric sleeves so that I can change up the design when desired

[mild plank]

I'm nervous to bring the cane to D&D tonight. My friends are accepting of me, but I just started talking about using it a little more and I can tell it's still a bit odd. We play in a public area in the back of a TTRPG store too. My parents especially will be a bit weird about it if they see me taking it

[still crest]

been using my rollator during my flare ups and its been helping alot yipppeeeee

[onyx bison]

Once again getting those thoughts wondering if a mobility aid would help me, I’m doing my physio and have been for months but I’m in a pain flare up again and if I do more than what my body accepts (which changes every day so I don’t know the limit) then I’ll be in pain for the rest of the day, and if my feet hurt from walking then that lasts a few days

I remember a few months ago when I brought it up to my mum she got defensive saying that I don’t need it and she didn’t think I need it and why do I need it

But I’ve seen the physio multiple times now, physio isn’t a cure to my pain but it does help to reduce it where possible

She can’t use the ‘we haven’t seen anyone about it’ excuse yet bc we have, and my pains are still there and have been for years

Any advice is much appreciated

If I did get a mobility aid it would probably be a rollator

[still crest]

For me the reason I got my walking sticks and rollator was the realisation that, people without pain don’t dream about having a rollator or sticks or any kind of mobility aid.

It was a game changer when I got my rollator as it means I get to sit down have something to lean on while I’m in flare ups

I got a cheap one from Amazon and it’s helped a lot

[still crest]

Maybe if you can, talking to the physio about getting a mobility aid might help! Or if you can get one, talk to an Occupational Therapist

[onyx bison]

Thanks!!!! Unfortunately I had my last physio appointment on Monday but I am hopefully going to see an OT sometime relatively soon once my government support funding has been organised (I have the planning meeting on Tuesday!!) I will also probably bring it up with my counsellor and or OT if/when I see one. But I totally agree, usually people who don’t need mobility aids don’t keep thinking about getting/needing one!!!!

[still crest]

Yeeee I got my rollator at a point where I was really struggling to walk with just my canes so I hope you find your rollator will help! If you can get one, I got mine for like 60 quid off Amazon

[onyx bison]

It would be especially helpful for me when I’m more anxious as well, bc sometimes I worry about losing balance and then get a bit disoriented or feel like I’m going to lose my balance (I never end up actually losing my balance but the worry is still there) so having something with me that will allow me to sit when I need and also support me and help me ground myself while I walk

[still crest]

Yeeee I get told now that have a rollator don’t rely on it just use it when your in a lot of pain so I try to balance how much using my canes and rollator wnd listening to my body

I’m using it on Saturday to go to my uni city as I’ve been in a flare up the past week or so

[onyx bison]

That’s a good point, I would probably only use it during flare ups to try and reduce my pain or at least give myself a break from walking for a moment, I’ve also found that even just pushing a shopping trolley helps me on the anxiety part bc it’s something I can focus on while walking to ground myself and help myself feel more secure , not the pain tho which would be the main reason I would be getting it

[elder gale]

Yess I find this too. I always volunteer to take stuff to the back when I’m working because I get to push the carts and it feels like it takes some stress off my back/legs too

I’m so worried that if I had anything people would ask me why, which I know is none of their business but I don’t have any chronic conditions I’m just tired all the time and in pain from working long shifts where I have to stand and perform moderate physical labour. It’s a lot of repetitive strains.

I’m just bad at standing up for long periods of time because my legs hurt 😭

[vivid estuary]

I’ve got a knee brace similar to the one on the picture. Every time I put it on, it takes about five minutes before it has slipped down to a point where it stops working. So I’ve tried tighten the bands and it keeps giving me
(TW: minor injuries) ||wounds and it gets really sore||. The doctors suggested that I use a sleeve under. The problem is that it makes the brace slip even more. At the top, it also sort of curls up which puts a lot of pressure on the skin and hurts.

If anyone has experienced similar or have any idea on how to fix this, it’s greatly appreciated.

[primal tusk]

If you had it make specially for you i'd suggest that you go back there to get it re-fitted properly but ofcourse that might not be the case and then i dont have any advice sadly :/ hope it works out for you!

[rugged slate]

I’m in a pickle.

I want to bring my crutches on the trip,, but my parents will be there.
Though they will be doing their own things.

So not so sure if I should bring my crutches. It’s a lot of physical activity where I’m going.

This is a school event by the way

[rugged slate]

So I’m thinking about brining them.
But not sure how security works

[elder gale]

I don't think any amount of parent or peer judgement is worth being in pain/exhausted. You want to enjoy your trip (and your life). Not having proper supports can lead to more damage later. Idk, just my opinion, and I know the circumstances might be different for you, but I say go for it. It's not your job to make yourself uncomfortable for them

[bronze oxide]

I was laying in the medical tent at pride because the front wheel of my wheelchair broke and I switched to my cane. They wrapped my joints for compression and iced them. Then I went home.

[blazing thicket]

Question (pls ping to reply)…. How do you know if you need a mobility aid? I have such severe fatigue that worsens with more-than-usual activity and heat (thanks, summertime) and additionally dizziness and lightheadedness sometimes. Starting to wonder about a rollator or even a power wheelchair… would these be beneficial, do you think?

[wicked sequoia]

Honestly if you think you need one, you do probably need one, if your struggling to function, and a mobility aid would help investing in a mobility aid would be a good idea

[solemn gale]

^ absolutely what they said - if you’re considering getting one, you probably already need one. If you are looking at a Rollator versus a power chair, a Rollator might be a better place to start unless you have been recommended a power chair

[blazing thicket]

Thank you y’all

[night lynx]

like we hear all the time. If you really feel you need one and can even list of legit reasons why then you need one. Don't let others tell you other wise. Also yes wheelchairs would. W helpful for this. We looked into one for a while before we all in the system chose our medical special needs stroller for many other reasons and we learned wheelchairs can help with lightheadedness since we get that a lot

rin ↩️

[Reply to:](#1208395612853243935 message) Question (pls ping to reply)…. How do you know if you need a mobility aid? I have such severe fatigu…

[primal tusk]

Hey yall :) i am getting my silver ring splints soon and i was wondering what the best way to store them is because i still have trouble and keep forgetting what all the little symbols on them mean haha

[wanton pagoda]

does anyone have any recommendations for cheap but good crutches? i want to get some for my high pain days.

[wide walrus]

GG @wanton pagoda, you just advanced to level 3!

[whole viper]

Mine are Vive forearm crutches, I also bought the padding. Not too expensive but really high quality. I got them on Amazon, but you can also get them on the Vive website

[unkempt nacelle]

hey, i’m tal, i have undiagnosed chronic illnesses that sometimes cause balance issues, muscle weakness, fatigue and joint pain and stiffness. Can i use mobility aids even without a diagnosis? and how do you talk to your family about using mobility aids for the first time?

[still crest]

Mhm! Even without a diagnosis you can still get one if you need one. As I’ve said before NT/able bodied people don’t dream/want a mobility aid as they don’t need one. For me when I went to my dad about he saw I was struggling and allowed to get walking sticks

[wanton pagoda]

thank you! these look great :)

[gusty igloo]

Absolutely- most doctors (at least in my experience) just kind of expect you to buy a walking stick if you need it and won’t suggest it. I would absolutely reccomend buying a cheap walking stick from the chemist and just seeing if it helps! What I did was I just bought a folding cane (that I could hide) and used it when I was alone first so I was really comfortable and confident with it. Then I told my parents how much it was helping me and how I wanted to use it more. I know that may not work for everyone but in my experience I really liked being confident in myself before talking to my parents who may have otherwise tried to talk me out of it

[bronze oxide]

What is a rollator

[solemn gale]

Most people would just call it a walker - there are two main types of walkers, rollators and zimmer frames. Zimmer frames are the ones that are shaped like a u when viewed from the top - typically they’re plain gray and only have two wheels. Rollators are most commonly red but come in other colors and have wheels on all four feet

So this is a zimmer frame

And this is a rollator

[wicked sequoia]

Decorated cane, the bottom is decorated with thin rainbow wire and the top with gold rainbow wire, and i have mixed gold glitter with glue and put it just below the handle and on an adjustment thing

[wicked sequoia]

I just remembered that mobility aid decoration forum existed so I.probably should've sent it in there sorry

[solemn gale]

Nah here is fine too

[pulsar quail]

Has anyone successfully managed to get a wheelchair through the nhs for fnd? I am struggling a lot with walking/fatigue and pain symptoms but my neuro thinks it might make me worse even though I can’t do much of what I used to do because of said symptoms. I’ve rented out wheelchairs/mobility scooters in the past which have been helpful but part of the issue is that they are often to big for me and have caused injury (mainly bruising and cuts/scrapes) as they haven’t been built to my needs. I’ve tried a sports chair at college as well when we did wheelchair basketball for an end of year treat which was a lot easier to move as it was closer to my needs being lightweight. I do see another neuro for a second opinion in august so hoping that I can get it as I think it would give me a lot of freedom back.

[vivid estuary]

I get the “it will make you worse” argument all the time. It’s sad to hear that others get that too.

[blazing thicket]

What mobility aid would be best for drop attacks/drop seizures?

[wicked sequoia]

When I've been using a wheelchair its felt very safe, especially when I have had a seizure in it- that's just me tho

[radiant quiver]

Hello does anyone have a reference for a foldable walking stick with a comfy handle not too expensive please ?

[solemn gale]

If you only use your cane in one hand, I really like the kmina palm grip cane, it can be a little on the pricier side though

[radiant quiver]

Thanks. It seems really good but yes a little bit pricy for me😅

[still crest]

Mine is a wooden Ergonomic handle! They are so comfy

https://www.walkingsticks.co.uk/56l.html?gad_source=1&gad_campaignid=20481819529&gclid=CjwKCAjw7rbEBhB5EiwA1V49nRz534NoBWyJ17on2SWPb3IYebAT_p00VBWMub2osk06zeb5l7qLoxoCMWkQAvD_BwE

Looks like this

Not sure if you can find one that’s foldable tho

NVM!

https://www.walkingsticks.co.uk/90JR_charles_buyers.html?gad_source=1&gad_campaignid=20481857467&gclid=CjwKCAjw7rbEBhB5EiwA1V49ndMH300PjlF9UHufk-I_fbgQGl4zAbREQ7pcSrbxEh5kBuaVDbh4RxoC8r0QAvD_BwE

Sorry for the spam

[radiant quiver]

Oh thanks a lot I didn’t know that wood could be comfy. I will look at what you linked thanks again

[still crest]

No problem!

[radiant quiver]

Unfortunately they didn’t deliver to my country and the price is ×2 on amazon

[still crest]

Oof sorry

[river sparrow]

How do i convince my mom to let me get a cane for my hEDS and POTS?

[celest ivy]

Slightly related to the one above this. I’ve heard some folks use canes for POTS and I’m thinking of getting one as my chronic anaemia is progressing ( also chronic pain ) because it’s very similar to POTS: how do you use it? I’ve only found people who use canes for one-sided stuff and I just realised that doesn’t need to be the case so how does that work???

How does one walk with a cane if using it for something that isn’t one-sided? I don’t think my PT knows either tbh cause they’re not really experienced in the use of canes for more abstract things like POTS and the such

[thorn nova]

Canes help with balance when you're feeling dizzy/uneven on your feet. They also provide something to lean against when standing still.
If you don't have pain/a weaker side you can use it on whatever side is easier to use it.

[river sparrow]

I have chronic pain mainly in the right side of my body from repeated hEDS injuries, so for me it is pretty one sided. But also for balance and too feel more grounded to reality when I get lightheaded. Ive borrowed one of my Grandma's canes in the past, but it wasnt really the right size. so make sure its sized properly to avoid possible injuries.

[bronze oxide]

Question is it normal to feel disconnected from your body when moving to bigger mobility aids like a wheelchair

Since starting to use a wheelchair and more braising equipment to deal with the hypermobility/swelling I feel less like myself and a little less human

If anyone has some mental health resources that would be helpful

[analog lion]

i usually pick which side hurts most. it’s important to know how to use a cane properly so you don’t do more damage. it should be on the opposite side of the leg you wish to support. (i.e. your right leg hurts so you have your cane in your left hand.) the handle of the cane should be at the height of your wrist where it bends. i also recommend an ergonomic handle to prevent strain. when you walk you walk with cane and opposite leg. if your right leg steps then the cane in your left hand goes with it at the same time. if available i’d recommend talking to a physical therapist to make sure you don’t hurt yourself

[wide walrus]

GG @analog lion, you just advanced to level 13!

[meager eagle]

Doesn't count as a mobility aid but I wear sunglasses for photosensitivity. Not epilepsy-related, btw.

I don't have seizures. I'm just sensitive to lighting.

[waxen latch]

I also keep at least one pair of sunglasses in my bag (or wear it) at all times to be able to prevent sensory overwhelm. I think there might be another chat here for talk about sensory aids, but I'm not sure.

[steep igloo]

What’s youre opinion about the sentence: when you think of using a mobility aid it’s a sign that it could be helpfull

[river sparrow]

I see it as "Able bodied people see mobility aids as an inconveinence to themselves rather than a tool". If they can walk/stand fine and without pain, then using a cane or crutches will just take up money and hands. So if you think you could benefit from the extra support and stability a mobility aid gives you, you probably do need it.

[solemn gale]

If you are using it for something that isn’t one sided, the recommendation I’ve seen is to use it in your non-dominant hand so that your dominant hand remains free to do stuff. It may feel less natural, there may be a little bit of a learning curve, but that’s natural

In terms of general use, when sizing your cane, the handle of the cane should come to the inside crease of your wrist when your arms are hanging loose by your sides. When using it, your arms are hanging should not be locked and your shoulder should be in a neutral position - rather, your arm should be slightly bent, generally at roughly a ten to fifteen degree angle. Your cane should move opposite leg, opposite hand, so if you’re using it in your left hand, it should move at the same time as your right foot, and vice versa. I’m sorry, house md lied to you. Also, if you’re using it have it in the car, never hold it upright - it need to be down flat in the floor, or you run the risk of injury if you’re using it get in a collision

[celest ivy]

I'm ambidextrous ( not fully but that's mostly because I had an intense complex around using my left hand for a large portion of my childhood ) so I don't know which would be the non-dominant hand. I think left cause my let's a bit weaker but idk

[solemn gale]

Gotcha. If you’re ambidextrous and not using it for something like pain or one-sided issues it doesn’t matter as much then

You could also switch hands periodically if the need arises, although from what I’ve read it doesn’t really sound like you’d have need to

[celest ivy]

Yea, prob

[river sparrow]

Also, a good guide for sizing canes that ive heard is to let the top of it end at the ridge of your femur (right below your hips- the widest part of your leg)

[azure parrot]

Or at your wrist

[night lynx]

Happy my host identity husband will be home some time next week because he has been saying he will help us use our mobility aid for teh first time since we got it in May due to its a 2 person to operate thing. Our knees and back and anxiety will thank him so much

[meager eagle]

is it a sort of transport chair if i recall?

[night lynx]

Yes

Talia (ping me for reply) ↩️

[Reply to:](#1208395612853243935 message) is it a sort of transport chair if i recall?

[severe nova]

Hii! I want to get a retractable cane to help with my pots, but I have no idea what to look for in a cane. I'd like to use it when I'm on day trips with my friends (parents will be too judgemental). I just don't know the difference between the different handles and stuff and most of the ones on amazon look dropshipped so does anyone have recommendations?

[waxen latch]

I don't know any recommendations specifically, but another idea: If you know a physiotherapist or can go to a medical supply store, they can also give advice or maybe even let you try different options in person.

[still crest]

I always look for handles that are ergonomic! They are a lot more comfortable

[arctic cove]

yup, i agree with alin!! if the ones in the med suppily store are too expensive for you, you can try them out and take the advice in person, and then buy a similar in a dif store or order it online. also depends on your insurance situation and where you are located, you can try to get it prescribed by a doc and that way pay less for it.
sorry about the judgy parents :/
an alternative to a retractable cane could be a foldable one.

[arctic cove]

they are more comfortable. and maybe even more important for long term users: they are less likely to cause injury or damage to your body.

[severe nova]

thanks for the advice!!! Sadly I can't go to a med supply store because there are none near me, so my parents would have to drive me and that's just not an option but I am looking into foldable ones with an ergonomic handle and they seem to have quite a good range in online medical stores here. But are all canes with an ergonomic handle made for just one hand or does some sort of universal ergonomic handle exist?? My muscle weakness changes sides so I'd like to be able to switch sides with my cane as well

[arctic cove]

i dont know about both hands ergonomic handles. i decided on my right hand because i dont really have the motor skills in my left hand to use a cane on that full time. i have an anatomic handle idk if there is a difference to ergonomic. with my handly i can use my cane for short periods on my left side (mostly stairs) but it gets unformtable in my hand pretty fast.

okay i did a quick search and theres different shapes of ergonomic handles. anatomic is just one of them. a lot of them seem to be usable on both hands.

i dont have the capacity to do more research rn, so idk what the pros and cons of each shape are. hope this helps somehow :]

[severe nova]

oohhh that helps a lot!! thank you so much!!!

[onyx bison]

Not sure if I need a mobility aid or not, I’m back in the spot where I’m sick of the physio I need to do to be able to be in less pain. I know that most of the time people don’t fantasise of having a mobility aid if they don’t need one but what if I’m just being lazy, I can still walk fine without one and I feel like I’m just being lazy and trying to find a way to not do my physio anymore. It isn’t that bad, but man I sick of still getting pains even tho I am doing it when I’m meant to, wondering what others think? My mum suggested I get knee braces (after saying I don’t need mobility aids and then months later suggesting this)

[arctic cove]

you are not lazy. you are in pain and looking for something to ease it. which is a perfectly healthy reaction to do so.

[whole viper]

I ordered a power assist today, should be coming in next week or the week after! I’m so excited!!!

[onyx bison]

Thanks, it means a lot to be validated, also my mum now says she doesn’t remember suggesting that so now I’m back on square one again, might just have to get them myself (tho that will be annoying bc I’m unemployed and have to use my savings)

[waxen latch]

You're not being lazy or just avoiding physio! It sounds like physio isn't even enough to prevent the pain, so it makes sense to look for other solutions too. You can still do physio and it'll probably still help but if that's not enough you obviously need more support and braces or bandages are an option you can try. So I'd say go for it!

I do the same, I have my physio exercises I try to do daily (but can't always do all of them which is alright, I try to do at least a little bit so I don't get overwhelmed or pressure myself too much but also don't loose the habit completely so it's easier to get back into on days I have more time and energy)
But it's not enough and I still have "wobbly days" so I got knee and wrist bandages to wear when I need to do more than usual and want to prevent pain or fatigue, or when I already have a particularly wobbly day and need more support to be able to recover. And I'm thinking about getting or making a body braid type thing in hopes to be able to support my hips too.

[primal tusk]

Ooh i've been thinking about getting a body braid aswel but reviews are mixed and its quite expensive so i will probably wait a while

[onyx bison]

Currently doing my physio, today has been an annoying but not terrible day for pain, first exercise and my back hurts (might be doing it wrong tho, wrong posture)

I am getting really sick of this

Really struggling with motivation, I wish there was a way for me to not have to do this so much

[waxen latch]

Same, that's why I've been waiting too

[waxen latch]

Do you have a physiotherapist who listens to you? If yes, I think you should bring this up to them next time you see them. If the exercises cause you back pain, they should know that so they can adjust the exercises to something that works better for you and your body.

[onyx bison]

I pulled a muscle in my shoulder bc I was messing around 😭

[onyx bison]

It wasn’t causing pain initially, I think it’s the weight I’m using (5kg) and the fact that I’m probably not using the correct posture, I’m not currently seeing her bc we decided to see how I go and go back if issues occur

[meager eagle]

I deeply reassessed my health the last month based on stuff that's been happening, and I am pretty sure I can no longer function or live 24/7 as a fully abled person anymore. Using my full body all the time really drains me and becomes increasingly uncomfortable. It's time I listen to my body.

[onyx bison]

I can relate to that, I have two different types of physio I have to do, I’m doing physio every weekday. I’m constantly exhausted, my ‘battery’ never feels like it goes above 60%, I’m in pain often but I keep going. In pain? I keep walking and ignore it, but one of the people who helps with my autism program has said to stop doing that, but if I stop doing that then I’ll need a mobility aid of some sort bc of how often I become in pain while walking or just going through my day.

[onyx bison]

Yup having a shower for 25 minutes (was redying my hair lol) has caused me some pretty annoying foot pains that are still present when laying down

Maybe it is time for a mobility aid of some sort

[fierce isle]

have you considered geting a shower stool/ chair if standing up for long periods effects even when laying down. I have a shower stool and sideboard but i use the sideboard more often also if you struggle with balance it would help as well as getting hand rails or like grab bars so you dont loose your balance also if struggle sitting on things that dont have a backrest i'd say get a shower chair that does have a back piece i hope this helps and i hope you foot gets better!!:)

[wide walrus]

GG @fierce isle, you just advanced to level 1!

[onyx bison]

Unfortunately I don’t think I’ll be getting those anytime soon, I don’t think my parents would believe me, plus I feel bad with how much time I already take up, so taking up more space in the bathroom to store the stool (I share a bathroom with my brother) will likely make me feel even more guilty

[fierce isle]

do u live in uk or somewhere else? i think your brother would want you to be safe while showering if your parents think your faking put together when u flare up so theres proof so they dont get to say your lying or something

[meager eagle]

I realized I do need motorized wheelchair part time now.

I saw my doctor this morning. He's done a prescription last year twice for insurance and he renewed it. He was surprised because I had barely any issues for 9 months straight but now.. it's all hitting me back with possible CFS, plus a few weird autistic like traits acting up that make me chronically feel like I'm dragging a clunky tired heavy human suit around. I have significantly improved life and recentering when I used one and will again.

Can't let my group home know just yet.. which is why I'll leave it at my mom's place for now. Part time use.

I just feel so uncomfortable being in my body and physically so. It's so draining. I am very fortunate to have 4 different diagnoses explaining this.

When I use one, I feel like I'm regaining and keeping so much energy in me and also some neurosomatic recentering/therapeutic tool.

I can't use my whole body all the time. Not anymore.

[meager eagle]

Better focus, happier, less neurosomatically fragile or unstable and all that.

I want people to understand I do this really not for fun. I need to use one.

I am super fortunate to have a compassionate medical team and family.

[fierce isle]

I have a question you know like the wheelchairs the NHS gives and wheelchair attachments would they work together or no?? I don't really use my wheelchair but imma need to when I go collage

[meager eagle]

My legs get very very sore often too

[fierce isle]

Like joints or muscles or both?

[meager eagle]

muscles

[fierce isle]

What about like your arms if your using a normal wheelchair..?

[meager eagle]

I did that before with manual ones, it's tiresome.

I don't want a manual one unless the electricity grid permanently collapses.

Even then I'd just get solar panels and charge the battery but might take longer

[fierce isle]

i find it hard with crutches and idk how im gonna mange with wheeling myself 💀

[meager eagle]

I do not recommend it if you're often going to use a chair outdoors or just if you tire easily overall

I prefer motorized for that reason

I had 2 manual ones

in a row

It comes with the downside of potentially running out of charge but that's my responsibility to plan out my trips outside

Hybrid motor/manual ones are very rare, I only know of one model and it's apparently not that great

[fierce isle]

its gonna be indoors i find it easier indoor but outdoor hell tf noo

[meager eagle]

I guess the overall theme is where are you going to use it and and how often

[fierce isle]

what about the attachment that zara has??

[meager eagle]

I am not familiarized in personally handling such an attachment, I have never used one.

I think it would take too much space for me personally with my preferences of wheelchair.

Different tools for different needs

Also what transportation is accessible or available in your region etc also plays into that

[fierce isle]

mines custom but i hate the frame like boxy

[fierce isle]

buses and taxis:/

[meager eagle]

Yeah, I get that. Even with regular buses that claim to be accessible, there's a problem of being too crowded and you can't always plan in advance according to what rush hours are.

A downside of being disabled is you have to plan out stuff like that constantly.

I have used paratransit before, and even these buses in my region seem to get far more problems breaking down nowadays.

That's why I'm learning to drive. Honestly, that's the most advantageous option for transportation in my case.

[fierce isle]

that legit why i dont go out bc i have to plan thing ahead of time and if it fucks up like my brain doesnt know what to do

[fierce isle]

i wish i could dtive but ive got a visual impirment😭

[meager eagle]

Sadly that's true for visually impaired and blind people who also have a mobility issue, dependence on others can become a thing but of course not voluntarily

[meager eagle]

I'm really sorry about that. I know that I used to be isolated because of disabilities to a great extent.

[fierce isle]

ive alwways wanted to be inderpendent tho and i dont now how that going to happen

[fierce isle]

how did you start going out without burnning yourself out or putting yourself in flare ups??

[meager eagle]

I used mobility aids.

[fierce isle]

i shall see what im like walking around collage with crutches

[onyx bison]

Went to the markets today, after like 20 minutes of walking my legs already hurt, went away eventually when I kept walking tho

[fierce isle]

does that happen all of the time or just today??