Well said! Wheelchairs are liberating -- bringers of greater freedom, mobility and independence! I'm so happy to hear that getting one has been so awesome for your mum 💜💜💜

bUt sTaIRs!!!

@@jd_kreeper2799 true, but for some people it’s not being able to do stairs or not moving much or very far and I can imagine having a chair could be liberating in some ways.

@@steam_jane5580 that's a joke

Wheelchairs are such an amazing invention. They help SO many people and give many people more independence

That’s a wonderful way to put it!

what a wonderful way to describe it to people!

Beautiful story. Thanks for sharing! 💕

This helped me a lot. I am currently thinking of getting a wheelchair for myself for the same reason as your comment states. But the reasons Jo stated are keeping me back. So yes this helps, more than you might know.

Great reasoning! I think it's getting close to the time where a wheelchair would help my mom a lot. We went into Costco yesterday and she couldn't shop with me because there were no electric scooters, and even using the cart as a walker would have been too much for her.

Well said! :)

❤️

Or if possible removing the door

It's a rental, so she'd need to get her landlord's permission. Which they might well give; making the property more accessible would make it more appealing to a larger pool of potential tenants. It's worth asking.

@@astrinymris9953 Removing a door is reversible. Most just lift out of the hinges with no disassembly required, so I want tk believe that no reasonable landlord would oppose that, specially if it helps save the doors from damage.

OH MY GOSH THIS EXISTS?! IM IN AND OUT OF A WHEELCHAIR AND I’VE BEEN USING MY LEGS

I've removed doors in a rental and stowed them, then brought them back out before move out. As long as nothing is damaged and it is returned to the same condition it was in at move in, most landlords won't care.

Thanks for the tips, I'm a pain patient who is considering making the move to part time wheel chair use

I second the idea of fitting the wheelchair properly. If there are local wheel hair repair shops, or occupational therapists around, they may help adjust things. I'm not a wheelchair user, but I work in elder care. I've seen a lot of people in chairs not fitted to them, and it can be very uncomfortable/painful, and can cause issues.

I used a wheelchair for about a year but it was so bulky and hard to get through doors that I gave up. I didn't know there were many different sizes, the person at the rental store told me they were all basically the same width

@@karenak968 Yeah, I'm a PTA (physical therapist assistant) and there's a ton of measurements that need to be taken to properly fit a wheelchair. The biggest issue with an improperly fitted chair is pressure sores. And like you said, it's also more comfortable to have a properly fitted chair. The one she has now will definitely work in a pinch, but for long term use she should probably get fitted.

@@thesphnx6836 Even the standard hospital-type wheelchairs have different widths, but they may not have had them at the store. Those really suck, but they're better than walking when walking causes you pain.

This is something that I've struggled with myself. I currently use a wheelchair intermittently not because I have any issues with the musculoskeletal parts of walking but because walking involves standing and my body forgets how to blood pressure when standing if it's more than 80° outside. I have spent so long feeling like if my problem isn't musculoskeletal then using a wheelchair is like appropriating a tool others “really need”. I still struggle with feeling like I'm not disabled enough but then I think about how it's enabled me to walk to dinner for the first time in 7 years, I have felt what it feels like to run down a hill for the first time in almost 2 decades, I've gone several months without a concussion, and I can exist day to day without having to consciously will my body to raise my blood pressure. Those things help me remember that I'm allowed to do this, and it helps me, and that's good

Yeah, I've gone through that feeling a lot. It's worse when your illness is invisible, at least in my experience, because you're worried that maybe you don't really need it and you've just convinced yourself that you're struggling. (Our minds play some really messed up games sometimes.) I think there's a arge fear of stigma and/or confrontation, that we might be accused of faking or malingering, and that contributes a LOT to the thoughts of "I'm not disabled *enough* to use xyz". I know I certainly had several really awful doctors at the beginning of my diagnosis journey that actively ridiculed and pushed back against me for using mobility aids, because I was "too young" and didn't have a solid dx beyond fibromyalgia at the time, so I couldn't *possibly* be deteriorating physically without any medicines or therapies. 🙄 I've learned in the intervening years that basically, if it's going to help you gain quality of life, you're "____ enough" and you are absolutely allowed to have a better life. It doesn't make you less disabled to struggle less. (Good luck getting your insurance to pay for it, though!)

Bit of a tangent but yeah, I had to get a full set false teeth at 21 (basically oral prosthetics) and I always feel a bit off about needing the privacy of the sink/mirror in the disabled stall to fix any mishaps. (still only 22!) But what are ya gonna do? I'm pretty sure no one wants to see that but it's not like I'm legally classified as disabled (Editied to clarify just in case it's not clear: I have to remove them from my mouth and rinse them under the water, at the very least)

@@myca. Oh man, I've been needing a set like that for several years now, but have been holding off. Because of some of my illnesses, my teeth are like, disintegrating from the inside? I've still got most of the front ones, but my chewing teeth are pretty much gone, and I've got all these sharp edges from broken segments. Has the transition to full oral prosthetics been a difficult adjustment? I'm worried about losing bone mass in my gums without at least some teeth there. Yeah, people may not want to see false teeth, but they're certainly not expecting them on a 22 year old, so you've got an excellent setup for some hilarious pranks! 😄

@@OuchingTigerLimpingDragon It IS quite the adjustment, but the more teeth you're able to keep, the better! That'll give the prosthetics something to actually hang onto and there are so many fewer issues that way. And if you're able to keep any teeth on the bottom as well, don't worry about bone loss! I believe a few teeth go a long way in that regard. Getting them regularly readjusted (technically realigning) is actually one of the larger hassles for me since I'm in Puerto Rico right now. Also brushing them is misleading because you think you have less to clean but you actually have more because you still gotta brush your gums and everything! While I'd rather have implants, of course, I'd also rather have dentures than my terrible old teeth. I know what you mean about the disintegration and sharp bits. I used to have to be so careful not to close my mouth the wrong way or... crack! Broken tooth bits. But now I can chew most things that aren't like straight up gum or taffy, of course. So far my best experience has been biting directly into ice cream and chewing it with no pain!

I feel that. My functioning is basically zero without my medications for ADHD. I'm glad none of my teachers have said my medications were unnecessary because I would've slapped them across the face.

this is strictly coming from a place of love and support and not intended to shame you in any way, but in my country adhd medication is illegal bc our lovely government (/s) conflates all stimulants as drugs for fiending junkies and nothing else, so if you have adhd you’re basically fucked. i struggle with daily tasks soooo fucking much and i hate feeling inadequate and pathetic when i just can’t make myself do something i’m supposed to do at my big age of 25 and it’s a daily hourly STRUGGLE. i wish i could have access to medication. with luck i might be able to emigrate sometime next year and the first thing i’m doing when i get insurance in a more free country is get a prescription for my adhd. i hope this helps you feel more grateful for having access to life saving medication.

Yes! I felt that way about meds for ages before my friends (and others) convinced me. Turns out it helps A LOT when you’re medicated!

@@mmmmmmmmaria Good luck. I would say I can’t imagine being off my ADHD meds, but I can. Are all stimulant substances banned? Like even caffeine?

@@DeathnoteBB caffeine is legal lmao but any amphetamine derivatives are conflated with basically crystal meth and banned. i believe strattera is legal but no pharmacies ever order it so that’s inaccessible too.

Same here

@@drewharris7785 my daughter addy got pushed out of a 2nd floor window by her bully and she broke her spine and got her wheelchair last night I need help?

@@Christopherplayzz3568 oh gosh I hope she’s ok!

God bless you for offering to be somebody to talk to ❤️❤️

@@Ashleetkc can I talk to you

Hello, fellow para! T5-6 here! 👋🏻

Another fellow para!!

@@LindsayD228 Hello. I'm a T12

that looked so painful... i hope you were ok!

I am able bodied and agree that the wheelchair fall looked terrifying. Like that one irrational fear of going full extension on a lazy-boy. She seems fine, seeing how the video continued. Jo probably kept that fall in the video due to it being almost cartoonish in nature of how she ended up. It does make me wonder if I were in that situation, would I start wearing a helmet, at least in the beginning of learning how to use a wheelchair?

++ Hope she sees this

Liking for visibility. Great advice!

Or you can also tweak all wires in the wheels as I did for mine. I have changed the width of the seat about 1 cm what my chair was made to be changed. And then those wires and now I can fit into even those most narrow door frames in our country (about 60 cm). I have like 3 mm gap there, but I can fit :D

Awww this is one of my favorite comments ever. You’re so sweet, thank you! 💜

@@FootlessJo I just found your channel and I wish I had found it a few years ago. So many of the things I’ve struggled with are the same as or very similar to yours. This including my drive to be active and busy and my body’s inability to cooperate, as well as I struggle too use the aids devices that I would benefit from and need. Thank you for sharing so honestly. I don’t feel so alone ❤

Yeah. Like you, my disability is not mobility-related, nor is it visible, but that stuff about how she doesn't think of Annika as lesser, even as she thinks it of herself, I felt that too. It might be part of a poor general self-image in my case, but I am absolutely ableist towards myself in ways I'm not to other people.

I have psychiatric disabilities and illnesses, but no visible disability. I put myself to much higher standards than I would someone with a visible disability, like someone using a wheelchair. I feel guilty when I call my mom for support when having bad anxiety, but if Jo would say her leg hurt and that she'd need to sit down or use the wheelchair, that's totally fine and legitimate. It can go so far as me wishing I'd rather have a visible disability, like paraplegia or amputation, than the psychiatric stuff I have and have had for decades, because if you can't see it it's not really there, right? If I say I can't do something because of depression/anxiety it's just me not being strong and challenging myself enough, maybe even me being lazy and exaggerating my problems, but if a paralysed person says they can't walk up a stair that's legit. I hate when OTHER people don't see or respect my invisible disabilities, but I realise I've internalized their views and don't validate my OWN struggles just because they're not visible. Maybe if I started respecting my own boundaries, others would too? Or they never will, because I (quote by my psychiatry nurse) "look to healthy". Doctors think it can't be as bad as I say when I'm well-dressed, talkative and don't cry - not realising this is my highest level of functioning and that I've been pumped up for this appointment that was the happening of my day/week, and I'm just gonna rest and be depressed the rest of the day when I come home. Sometimes I wish I had a sign in my forehead that said "much more ill than you think!" and that people would actually believe it...

@@SamirCCat Asthma can be that way too. I’ll look totally fine one minute, and have an asthma attack the next. Some people think I’m faking it, which makes the stress of it all so much more worse. I believe you when you say, if you had a sign, it might be easier. Don’t be so hard on yourself hon, the world is hard enough on you as it is.

Oh I love this idea - thank you so much!!

I know someone who is an artist, who painted the back and seat of their wheelchair with fabric paint and added patches and embellished it with rhinestones I think a lot of people with Ehlers-Danlos (like they do) have some very complicated feelings about using wheelchairs - I don't know how much you're still painting, Jo, but personalisation definitely seems like a good idea!

@@FootlessJo you can get spoke covers as well!! I used to love them! Don’t add much weight either x

@@aim-to-misbehave5674 I... I know this isn't the case, but for some reason I thought the rhinestones we like, on the sitting surface and was just... "Wow that'd suck to sit on for an extended period."

yess! when I was younger I had a walker for mobility and it was completely covered in ribbons, stickers, and bedazzlement. It definitely made me feel more confident and exited to use one :)

wow you look so young on your profile picture!

@@chancia8990 thanks. The pic is a little old, I’m 44. I was injured when I was 6.

This is a large part why I watch this channel. I fell it makes me a better person with a better understanding of others.

As a fellow member of the wheelchair mafia, it always feels great to pass on my chairs that I no longer need. And it is a great place to start. I've seen much poorer fits!!

Having a spare helped massively when my teen nephew had his Tib/Fib broken by a thug on a school sports field. He's now walking and almost back to how he was.

Exactly! Thank you for your service! :)

That probably would've happened anyway =/ Maybe while hiking, or just going to work/school with a backpack, or maybe even just stretching while getting out of bed (like me). Spine injuries suck and it's kinda cool to be able to "blame" it on a specific cause/event but injuries from wearing a backpack are things that would've probably happened anyway. Unless you somehow knew that you shouldn't be wearing backpacks anymore after the first time your back was sore after doing it (which is seen as perfectly normal as it usually is). I was never in the military but always wore backpacks (duh! school, etc) 🤷🏼‍♀️ I didn't know my discs were weak, how could I? It's great that you can get benefits for your injury as it technically happened "at work" though. Hopefully you'll be way better after your surgery (and following PT). I can only wish I could afford good doctors and surgeries, sadly with just my husbands salary we cannot even afford health insurance (in our city it's $1000/month/person for the kind that doesn't come with a high deductible =/ ) and because he works we don't qualify for any help.

@@d-meth this is absolutely heartbreaking, can you not get treatment in Canada? Would it not be cheaper there?

@@lightblue254 I don't know. I doubt that a surgery in Canada would be all that much cheaper. Then of course I'd have to get there, rent a hotel there, husband would need to take time off work to accompany me, etc. No way we could afford it =/ I'm hoping he can convince his boss to pay for his insurance and we could just buy the $1000/month other half. Then I can get treatment right here in NYC. US healthcare sucks! If we were to divorce I could go get on welfare (medicaid) and have stuff done for free, would just have to wait. And the doctors wouldn't be great but then again the insurance the city offers* is probably limited too =/ Ridiculous. * there's only 2 options for buying private insurance in NYC. Good insurance (humana, blue cross blue shield, aetna, etc) won't insure a private person, you can only get good insurance through an employer. 🤷🏼‍♀️

@@d-meth Wow, that is cruel, are you sure it won't be cheaper to just go to Canada? You could do it on a holiday without having to literally divorce your husband... Current US Healthcare indeed sucks

I got my first glasses at 14, I probably needed them years earlier, but I was really good at compensating. I even passed my eye tests at the doctors with 20/20 even though my glasses were reasonably strong for a first pair of glasses. I never had issues reading the board in school, even from the back. I my brain somehow learned to automatically interpret whatever letter is was based on the shade of grey that the blob was. I didnt even notice until I got my first glasses. I lost that skill so fast after I didnt need it anymore.

Sorry if this sounds weird, but why two wheel chairs? Is it one of those situations where it is more convenient to have them in separate locations? Or do wheelchairs have different type for different situations?

@@popenieafantome9527 My first chair was very worn out and has been retired, So I actually have one functional chair.

The ego, or personal stigma of what others may think, is definitely the hardest aspect of most any change; when as it turns out, a lot of folks don't even notice, or care. It tends to be worse when little kids start asking the questions, and their parent, older sibling or guardian tries stopping them, when one is willing to teach them about why they are in their current health condition.

I don’t have MS but have been wanting to get myself a cane for my bad pain days, this has really helped with how I think about it, I love ‘gotta let my ego take a break’ ☺️❤️

Ooh, I love the designating chair days and times idea. Best to be proactive instead of waiting for flare ups or injury. Thanks for sharing!

sending you love too!

I'm going through something similar... and coming to terms with the fact that this might be permanent. I'm in my early 50s and always looked and felt young... health issues and the past 2.5 years have taken their toll. For stability and endurance, my PT suggested a cane and I refused. However, I started using one of my old trekking poles (which I had angrily packed away last year when I realized I wouldn't be hiking anytime soon)... it has really helped! I live in downtown Seattle and now I go walzing around on my 3 daily walks (since I can only last about 10-15 minutes each time) with a trekking pole. I don't own a car anymore, so walking is supposed to be my mode of transport. My hips don't hurt as much, I feel stable when I walk, and it's gotten me out of the house which has done wonders for my mental health. I bought a second collapsible one so I can throw it in my backpack for days when friends drive to come take me to coffee and I can be in "stealth" mode but not have to go without my safety device. I hope you're able to push past those thoughts and give yourself the mobility you deserve!

I've had a bad knee since the day I was born, and, well, 30 years later, I finally broke down enough to get myself a cane. I'm still coming to grips with the idea of using it more often, but it's a life-saver on my bad days by letting me transfer some of the load off of my left leg. It's... A slow process to accept that, yes, I need this, and no, people don't generally care because we're all stuck in our own mental bubbles. I've gotten more questions from kids than adults, and kids are inquisitive, not usually meaning anything bad when they ask, "But, aren't those only for old people?" Chances are, they've only ever _seen_ old people walking around with a cane before, so seeing someone relatively young with an oak cane in hand is something that prompts questions. I remember that, and mention that, "I was born with a bad knee, and the cane helps me walk without pain." The only adult who asked about it was actually rather friendly, and he was more interested in where I'd gotten my cane because he wanted a similar one. (For the record, mine is very plain, but it _is_ made of oak. He had a collapsible one, and had mentioned that he'd had an unpleasant fall when he'd failed to lock it properly.) I think there's a lot of truth to the saying "we are our own worst critics" when it comes to disabilities. We see people with canes, wheelchairs, crutches, and think nothing of it ourselves because "Well, it's fine, they probably need it." We then look at ourselves and think, "I can still walk on my own two feet. Sure, sometimes it hurts, but I'm not 'that' disabled that I 'need' a cane/chair/crutch." When, in reality, that's the perfect time _to_ use that mobility aid, because it delays it getting worse. I know it's not right, but the way I go through it mentally for myself is, "If I don't use my cane, I will end up in a wheelchair before I'm 40, and it'll be my own fault for being too stubborn to use a cane when I had a chance." It's not that I have anything against using a wheelchair, but I *really* don't want to have to do that unless it's my last option available. So, I've picked up using my cane on the bad days, and going without it when I feel good enough to walk on my own. If I'm going on a trip somewhere, I put it in the car "just in case" because some days I feel good until around lunchtime, then I hurt. And when the day comes that I find myself using that cane all the time, I might consider the next step of, "Maybe I should get myself a wheelchair, because while the cane has been helpful, there are some days I'd likely be more mobile, more independent, if I had wheels." From a friend of mine who went from a cane to crutches to a wheelchair, as he put it, "Once you have one mobility aid, it's easier to justify the next one. That first one is the hardest one." So, do yourself a favor, get yourself a cane. Let's be honest, they have a _lot_ of different types, and any sturdy stick of your choosing will help you out. For me, it's a curved-handle oak one. My father uses a walking stick. We make quite the sight in stores, I'm sure, and no one really comments on it.

Wheelchairs are amazing - do try one for “early” bad days… no idea what disease, symptoms etc. but wearing yourself out and hurting yourself by avoiding them is never good.

@@JohnR31415 I appreciate the feedback. I’m not looking forward to using one but I will definitely follow your suggestion 😀

@@downingj8288 no one looks down on the most common mobility aid in the west… the car. 🙂