People actually think, and even worse, say getting a mobility aid means you've given up? That's like saying my getting glasses at age 6 was "giving up."
People forget that glasses are a medical device that aids people with vision impairment. Most people Would be shocked if you tell them that their glasses are the same as other disability aids.
We need to start normalizing making pretty, cute, decorated mobility aids. I’m under 18, but the second I get myself a rollator I WILL decorate it as much I want and I WILL buy it in pink.
I really wish there was a company that made parts for customizing mobility aids. Most of the parts are standard sizes so there should be no problem swapping out parts for things the owners find more appealing.
I see this very similar to how people treat glasses. I need glasses to see but I have to use and wear them all the time so might as well get a cute pair that suits my taste and style. Mobility aids shouldn't be treated any differently if the person feels like it. I will never understand why so many aids come in this weird beige that suits no one if it's made out of any kind of fabric or meant to be worn against the body like a brace or it's silver and white. I want a green cane once I need one, I will get one even if I have to paint it myself.
Exactly! To me, "giving up" is not bothering to get a mobility aid and resigning yourself to just staying home all the time. Getting the mobility aid means the opposite of giving up.
@@dorkasaurus.gretch I wouldn't call giving up "prideful" or "refusing to adapt". It's despair and a sense of helplessness. And depending on where that came from, it can be very difficult to overcome.
I have CFS/ME and have been considering getting a mobility aid of some sort but have never gotten one because I didn't want people to think I'd given up. This comment changed my whole perspective. Thank you for this comment!
That is true, I don't go out that often and when I do it almost always hurts a lot in my legs and it's a shame because I really enjoy going out and do stuff that I like
"Giving up" is not going to pride, not going to the convention, not going shopping, not going to the party the zoo the aquarium the fireworks, etc. and resigning yourself to stay home for the rest of your life because of the pain. I was too ashamed for a long time to use a wheelchair because i didn't feel "disabled enough" but if you're missing out on things because of your disability you would definitely benefit from a mobility aid. I've used my wheelchair a few times now and i feel free, happy, and way less disabled than i did without it. Your mobility aid series and channel at large really helped me reach this stage of my life and i'm very grateful.
I feel this way. I feel like I am not disabled enough to ask for a wheelchair. It took everything I had to ask for a mobility scooter. And a rollator that can turn into a manual wheelchair. And even that one I can hardly use. Because my husband can't fit it into the car, without putting a seat down. So I feel like asking for a real wheelchair, would close too much trouble. Especially one that's electric. I still go to things, like this weekend I am going to pride. And I am using "big boy" that's what I call the big rollator, but I know, that I am going to pay for it for days after. But I also know, that I am going to grit my teeth together, and pretend that everything is fine... This is actually the first time I am admitting this to anyone... including myself.
I have a lot of anxiety and feel Like an Outsider to my own Life for staying home, thank you sm for this Lil peptalk i am gonna get the Mobility aid i wanted for so long ❤
I feel this way. I am being evaluated for EDS & I almost certainly have it. Walking & standing for a realitvely small ammount of time often hurts a lot & I start limping, then it sticks around for a really long time. I attend anything that I find to be fun but it hurts a lot & I often fall down. Sometiems I can't walk a lot for a while so I am mostly at home. I attended a festivale with friends during the summer. It was really fun but I was in a lot of pain so felt like I was making it worse for others because I had to sit down several times we all had to stop & when I get up, I am still in pain and have difficult walking. I lived alone but had to move back with my parents because I couldn't stand up long enoguh to do basic chours. I will move out next month and try to be independent. After that I will try and get a wheelchair because it would help me a lot. I am just nerveous about talking with my parents
I am in this boat. I need both hips replaced and I’m still in my 30s. My doctors said wait until it’s unbearable. Well…I have been living through pain for 5 years and I didn’t realize how terrible it’s gotten. And I’m at that point, I don’t even want to go to the mall or travel because it’s just pain. And since I’ve lost strength, even simple walking causes me to sweat like a tweaker. I’m at the point where I think a mobility aid will be what can help me build the confidence and strength to fully get back out there before and after my surgery.
I was absolutely astounded the first time I used my wheelchair in a large store. Previously, I'd just tried to rely on leaning heavily on a cart, but usually ended up getting super lightheaded around half way through the store, followed by regretting my life choices. I was actually outpacing my friend who usually goes shopping with me and I didn't feel like crap afterwards. Such a wonderful feeling!
The most frustrating part of this for me is, I know a mobility aid would help me in so many ways. But I also know that my family would judge me to death for using it. I've tried explaining how challenging things are for me and the conversation just turns into "why aren't your meds working" to which I respond "they are working they just aren't a cure" this concept seems completely lost on my abled family and I'm just at the point where I've excepted that my quality of life is going to be limited until I move out.
A lot of people don't understand that medcation can help you manage a condition but it is not a cure. My doctor explained that one can manage diabetes, but there is no cure. I try to use this example to explain to family that my condition does not have a cure, and my meds help me manage to live my life.
I'd like to tell your family that if they can't quit beeing abusive, they should go cripple themselves, or I could do them the service, they just have to ask. Jokes aside, start recording your interactions with them, and then, if you can afford it, find a lawyer to serve them with a Cease and Desist notice, including the applicable laws on harassment and time stamped transcribed excerpts of the recordings showing the pattern of their abusive interactions towards you. Sincerely, a physically able bodied guy with ADD and intermittent depression married to an ambulatory wheel chair using spouse.
I have the same struggle trying to explain mental health meds to people. Antidepressants and antianxiety meds can improve my symptoms, but they don't magically make me impervious to bullying and verbal abuse. Some people assume my antidepressants would make me magically able to also tolerate bullying, condescension, gratuitous insults and people being verbally abusive and shouting in my face. That's not how psych meds work. I eventually decided to avoid those people no longer attending the same church with them. Unfortunately, one of them became a deacon.
Ugh. I hate the "just get new meds" type of comments. I'm doing way better than I ever could've dreamed four years ago, but that doesn't mean I'm cured. I'm still in pain every single day, I still can't even get out of bed some days. But my pain level is mostly stable, unless I encounter a bad migraine trigger. I used to go from relatively fine to "turning my head makes me hurl" in a few hours. Now if I'm relatively fine I'm probably gonna be relatively fine for the next few days. This means I can actually make plans and usually attend them. Instead of making plans and having to cancel two hours beforehand, only to get "You were fine three hours ago. Why do you never think about anyone else?". Like oh, sorry, I didn't realize "having to change plans" was worse than "having to cancel plans you were really looking forward to so you can hug a trash can for the next 12 hours while your head explodes while being judged that you "don't care about other people's feelings"". It must be soooooo hard for you. 😒🙄 But still so many people tell me "You should go see a doctor". Like you think I haven't?
Oh boy here we GO! My sister started using a manual wheelchair in middle school, and she upgraded to a motorized chair in high school. To an outsider, it might seem like her disability is getting worse, and while she’s not a little kid anymore and she needs more assistance than she used to, that’s not at all how we see it. For her, an ambulatory user who has very limited control of the left side of her body, it was a HUGE game-changer. Totally worth the cost of the chair! And last year we got a van with an automatic ramp. It’s not cheap, but fortunately we’re in a position that we can afford these aids, and each step has done so much to boost my sister’s confidence, comfort, and autonomy.
I recently broke down and got a shower chair which changed my life. The ability to just sit and wash my body without getting extremely exhausted and passing out is incredible (thank you POTS 🙄) and CRPS (complex regional pain syndrome). I'm looking for a walker chair now because it will help andI'm tired of hiding in the house. Thank you for sharing your story. Much love from Oklahoma!
I'd recommend the Hugo Navigator for a rollator/walker! It also turns into a transport chair if you need someone to wheel you around when you get faint or exhausted. It's made a huge difference in how long I'm able to be outside with POTS! Best of luck!
i also have pots and got a shower stool recently, and im in love with it! i can shower more often now because it takes much less energy, and im so happy about that
You can't mess around when it comes to the shower -- safety is your #1 priority! It sounds like you made the right decision, especially if there's a chance of you passing out in there!!!
I had my GP tell me that I was giving up when I told her I felt it was time I start using a wheelchair. She didn't think I needed one because I always looked fine when I was in her office. She missed the fact that I had to get a taxi to go the 350 meters from my house to her office. Then I had a pain specialist in one of the biggest hospitals in the country tell me I didn't need a wheelchair because being able to stand and walk for 10 minutes at a time was "plenty." Nevermind that I had to walk more than 10 minutes just to get to my bus stop. Then I had another GP tell me that I'm too young to be using a wheelchair and that we should work on getting me out of it. I haven't used my wheelchair at all the last few years, mostly because I haven't left my house much because of Covid. But hearing those things from doctors just makes it all so much harder.
I am having this issue as well. They will not even entertain the idea of a wheelchair. I know that I need to keep my function up, which I do but there are times where walking is almost impossible. I tried a rullator but when I am so poorly it is dangerous for me to try to walk with it. I run the risk of having it shoot away from me. I stay home if it gets that bad now. They whinge over me using a cane. I have used it almost everyday for four + years. The canes I have bought with my own money because they won't prescribe one for me.
@@MsArmitage I would go off on my Drs if they did that to me. To my Drs credit none of mine have told me anything like this but I have decades of X rays showing my knees and hips degenerating. I bought and made my first canes.
My mom used to tell me this about a wheelchair, even though I spent my childhood with crutches and walkers. It's unfortunately common for parents of disabled people to do this as their abilities change with age. In a similar vein, as the parents age, it's often hard for them to realize their grown children, though younger, may be having a harder physical time than they are.
As a physical therapist the idea of someone saying you are "giving up" by getting the help you need and taking care of yourself, your needs and getting to be more involved in you own life just makes my blood boil!! Thanks for helping educate and spread awareness👏
My little brother took a cane on his last class trip, to help him stay on his feet all day. He doesn't have anything diagnosed, so he told me he felt guilty when a guy on the underground gave up his seat for him. I think I'll forward this video to him
also, tell him that using a cane to have energy last all day is no different than changing worn tyres on a car before they blow out and requires towing.
this is how i feel too, i'm a young person and i don't have anything diagnosed but i use mobility aids to keep me going and on my feet because i struggle with fatigue, standing and unsteadiness. and i'm always worried about my future, and i also often feel guilty. ik i don't personally know ur brother but let him know i'm so proud of him. ❤️ it's still scary for me and i've been using aids for a long time, i wish i had learned sooner that it's ok to use mobility aids if it helps me in any way.
Your channel has helped me be more comfortable with my disability (even naming it so is a big step!) And I bought a cane for a trip coming up to help with long walks or standing that hurt my back and I'm so excited to see how it goes! Thank you Jessica, you're such a treasure!
She's done the same thing for me too! While I'm still pretty young (first year of university), I have a lot of chronic pain and joint instability due to being an athlete for around 10 years (anything I could sign up for, I was there. Volleyball, basketball, track, soccer, curling, figure skating, running, badminton, competitive dragon boating, etc) and being a major league klutz and getting many injuries, including somehow almost dying while in curling practice. I recently started using a cane, I'm also a music major and often carry my ~30 pound saxophone case on my back walking around campus, which is rough on my back and neck. Using a cane on a not very accessible campus isn't the easiest thing, but using a cane makes walking between buildings or even between rooms so much easier! Her videos have made it so much easier to accept and embrace my disabilities!
I live in Pennsylvania and am generally considered able bodied, but a hiking pole is a must on some of our hills. Especially in bad weather, like snow, rain and flooding that cause mud, or really wet leaves. We have lots of wet leaves because our name literally means woods. Fall is very slippery.
@@letitiajeavons6333 Wet leaves and ice are both so brutal! I'm Canadian, so we generally have ice and snow from mid October to late April/early May (we just had the biggest blizzard in a century in my province, 6 feet of snow in some places, winds well over 90 km/h consistently), and an ice attachment for my cane is a huge help, though not foolproof, as I have fallen on ice on campus at least 4 or 5 times due to the sidewalks, parking lots and wheelchair ramps being super icy.
One of my favourite quotes by a musician I love is "sometimes, decisively giving up is the bravest thing you can do." He said it in the context of comforting someone who had given up on their dream, and it really changed how I look at giving up. Giving up, choosing battles, accepting defeat, it takes an enormous amount of courage to choose what to do. While I don't think using a mobility aid is giving up, I also don't think people need to be hard on themselves when they do give up on something.
I just picked up my first custom made wheelchair as an ambulatory user. It was a huge decision to make, but I love the independence it's given me already.
Every friend and spouse/partner of someone with a disability or mobility impairment HAS TO SEE THIS! I'm so tired of the ppl in my life saying things like, "Why do you need that, you can walk just fine!" No, sunshine, I can walk until l can't and I don't want to be in a position where I pushed myself too hard and then I'm stuck. Even the greeter at our Walmart gave me the very obvious slow updown to internally determine if I was actually disabled enough to ask for a scooter. I just looked at him and said, "It must be nice to be able to stand on your feet all day and judge people!" I was taught to keep my mouth shut, but he made me so angry! I'm so tired of it and my joints and feet are in so much pain! I have a rollator for big events like the occasional comic expo and use a cane almost 100% of the time now. I'd like to start using either the rollator or a wheelchair but that judgment, especially from my own family really hurts.
exactly, they wouldn't think about questioning you for servicing or refuelling your car regularily instead of waiting until it breaks down, so why do they expect you to skimp on preventative maintenance of your own body and let yourself break down to the point you'd need to be carried home or to the ER?
Ignore your family. Use that rollator or wheelchair. I got a rollator around Feb/Mar 2923. Within a week, it made the biggest difference in my life. I went from barely being able to walk to get my mail to finding it to be a piece of cake. I was using a cane, but it didn't do much for me. It took me 15 minutes to walk to the mail gazebo one way. Now, using my rollator, I can make the whole trip in the 15 minutes stopping to look at new growth and flowers along the way. I can also walk a mile to get prescriptions and groceries or go out to eat. It took over a year to work up to that distance. I can barely walk out to the parking lot without my rollator even now.
This video came at the perfect time for me. Though I've been disabled for 24 years, I just used a wheelchair for the first time last weekend to get around a convention. It was so wonderful to be able to enjoy the event instead of gritting my teeth through pain the whole time. I didn't have to spend days in bed afterward as my "punishment" for doing something fun. Now I wish I'd started using an aid years ago. This video really reassured me in the wake of the few remaining hesitations I had after trying out the wheelchair. Thank you so much for your empowering content!
I first used a mobility scooter at a large convention, with the same wonderful results. My mother was also there and delighted in my laughter when I sped by her on the way back to our room. Then, I rented one for my eldest daughter's wedding activities. My husband was so impressed with how much I was able to do that he started saving for me to own one myself. What joy to roll to the library, a store or the beauty shop independently! Sadly, after a surgery to fuse my knee, a scooter no longer provides enough support. Neither does an inexpensive and foldable power chair. We could probably squeak a payment for a power wheelchair but then we'd not have enough money to move to a less expensive area when my husband retires in a year or two. My insurance won't pay either, since the Medicare rules they follow seem to believe it's completely unnecessary to ever leave your house. They do provide a cheap rollator for my use.
Exactly. I understand the gritting teeth through pain part, lol. Exactly why the rollator and wheelchair are on my list of next stage of my life items. I no longer want to be held captive to the pain. If anything gives me more freedom, bring it on!
@@southernlady5085 I got a rollator last week and used it at an event where a wheelchair wasn’t practical. It was great! I was up doing household chores the day instead of in bed. Highly recommend!
I'm such a big fan of mobility aids. If they make your life easier, then how can it ever be bad to get one? I've been an ambulatory wheelchair user since I was 15, and without it I wouldn't have been able to go to school. These days I can't leave my house at all, and I can't use my wheelchair indoors because my arms are too weak to push myself, so my wheelchair doesn't get used much, but I now get around my home with a cane and a rollator and they save me a lot of energy.
@@ReaderOfBooks88 If you're going to use outdoors I'd recommend a mid wheel drive, they cope better with slanted pavements, hills, etc. I've had 2 rear wheel drive and they both tried to kill me, most drop kerbs and driveways the path slants towards the road, and they'd slide into road, even with both feet down and pulling back joystick (reverse). I had many close calls, but no problems at all with my current mid wheel drive.
@@reachandler3655 That's really good advice, thank you! I'll keep that in mind. I'm glad your current mid wheel drive doesn't try to kill you like your rear wheel drives did. Those close calls must've been scary!
My chronic illness developed 8 years ago. Some of my family always preached the idea of "use it or lose it" this year I have finally got a mobility aid wish I had got one before
I got my first rollator recently and it's given me so much freedom dealing with my severe, chronic back pain. Instead of focusing on the pity I keep getting, I'm decorating it with spray paint, glitter, and custom accessories 😊
When I got my first wheelchair, I called it my freedom chariot. It opened the world back up to me. I was no longer limited to destinations where I could park directly in front of the entrance. And I could go on “walks” again.
I've very recently started using a mobility aid (a very snazzy and stylish walking stick!) and it's been such a great addition to my life. I now actually have energy left when I come home after a shopping trip or outing, and I don't have to worry much about dizziness, because if I get dizzy I have something to lean on that helps me keep my balance. 😍
A family friend has a lovely cane that she has started using, especially in winter, for safer mobility. It is teal, with a silver metallic dragon scale pattern engraved. Our entire family has actually remarked admiringly on the beauty of the aid she has found, and how well it suits her!
Oh this. So much this. Mobility aids changed my condition management and quality of life completely for the better and I wish more people realised that! 💜
Absolutely perfect timing. I just got a mobility scooter and I am a bit insecure about it but you get me right over that hurdle. Me and my joints thank you
As always, thank you. I got my first manual wheelchair the summer before Covid, which helped immensely with my job as a teacher, and a custom one this past winter. Having a wheelchair that fits is so much better and I have a lot more energy! Finally with Covid in a slight period of abeyance I am actually getting out and about to events, and enjoying myself. That's something I hadn't been able to do in years. Yes, I can stand and walk - a lot of the time, but I cannot stand easily or safely sometimes, and I cannot walk very far ever even with crutches. I rarely stand or walk in front of my students because it alarms them when I am in pain or actually fall. The wheelchair was my act of defiance because it has kept me able to work at a job I love instead of having to quit and stay home. Giving up? No. Getting out and enjoying myself a lot more? YES!
Yes! So glad for you! I also have used both a rollator walker and a wheelchair in my classroom. I'm not sure I'd even have gotten through student teaching without them.
Nodding along so much with this. I wear glasses because they help me see better. I use a walking stick and a mobility scooter because they help me get about better. What's the difference!? No one has a problem with the glasses, but everyone has things to say about the stick and scooter. When I bought my mobility scooter, I absolutely wasn't giving up. completely the opposite. It gave me more freedom, more independence. I love it!
I have fibro, I have lots of really good days, people see me more on my really good days. On my bad days my legs hurt and feel like lead and I can deal with a lot of vertigo. Rest and NOT pushing my body beyond gentle exercise is what my body needs to get to the good days. My husband and I have talked recently about getting me a wheel chair for when bad days meet needed movement. Especially since I have a painful surgery coming up that could make me flare badly. I know there are parts of my family that are going to judge, judge, judge. But they also tend to be the same people that keep asking when I will be going back to work. The answer is never, Uncle J, N.E.V.E.R.
Thanks for this! When you said, '...because I don't leave my house...daily!' I laughed myself silly. Right there with you. The day I got my rollator (with a handy built-in seat) and could finally go to an art gallery BY MYSELF for the first time in ages was a a few hours' worth of absolute joy. Sure, it's odd to get those pitying/disbelieving looks in public, but it's a lot worse to fall down in public, so I'll take a mobility aid every day I need it. 💜
This make me feel so much better about using my crutches when I need them for lowering my pain to a bearable level while I "technically" could still walk without them. Thank you.
My doctor told me to use it if it helps. Technically I don't NEED a cane just yet but I still have one at home just in case. A simple foldable one for now I have never used it but it doesn't take up much space and I know where it is if I wake up and it's a really bad day.
This video means so much to me. I recently got a walking cane to help manage my postural tachycardia syndrome. Having something to lean on helps me get to a safe place more easily if I’m about to faint, as well as helping with balance. It has made a huge difference to my confidence while being out by myself, but I’ve also dealt with some backlash and mean comments from strangers who think a young, otherwise healthy-appearing person shouldn’t have a cane. I’m so glad to have this video to show my family so they might understand a little better. My cane does give me more freedom and hearing you explain that so eloquently brought me to tears. Thank you Jessica
4:44 omfg, this mentality almost killed my mom when she needed dialysis! And she's still fighting against getting a mobility aid because of cultural stigma.
I still fight this mentally even though it's been years since I started using a wheelchair and walker. I was ok with a cane because I found one that I liked and looked cool. My biggest problem is my circulation in one leg isn't great so sitting upright is quite painful, makes my leg swell, and causes clots. I really want to do more, but the 6 days in hospital with to quote my Dr "A large clot in each lung and a multitude of smaller ones in both." has made me reevaluate pushing my boundaries too hard. (death being a bummer and all)
“Giving up” is actually just deciding that if you can’t do something without a mobility aid, you’re not going to do it. 🤦♀️ Also: “if it’s annoying to use, you don’t need it” is such good advice. I usually say, “My cane is more trouble than it’s worth, until it’s not.” And that just means that sometimes you need it and sometimes you don’t.
Oh, my cane is annoying sometimes, like when I need two hands, but it is great when my ankle goes out,and I don't fall! Or when I can go to a convention or Disney World, and still be able to walk at the end of the day.
One of my siblings and I both have hEDS/HSD and we were just talking about this! It's valid to be afraid of going outside with a mobility aid for the first time because of worries about ableism you may face, and we were chatting about just this fear. But if it helps you gain independence long-term, it may be worth it. Often a good metric for when you should look into getting a mobility aid is this: the moment when you start to wonder if you need a mobility aid and whether or not your life would be improved with one... that's often a sign that you should consider looking into one. 💖 (Obviously there are exceptions and nuances to this, but as an idea, it's often a good place to start!)
i had a stroke 3 years ago I just got a powerchair it has changed my life i now have freedom, I am no longer trapped in the house,I can get some sunshine.
I need a cane and knee braces due to undiagnosed pain. (I haven't had time or money to get to the a doctor, but I know I need to) When I first started using the cane, I nearly cried because it made walking so much easier and took off so much stress from my body. The only time I don't use it is when I'm around my parents, who I don't think would understand...but I don't see them too much, seeing I'm in collage multiple states away
See if your college has a student health clinic. Most services at the Student Health Clinic are provided at no cost to students and special needs assistance is one of the things they do normally. They may also have access to programs to make things more financially available to you. Good luck. Don't wait too long like I did. I pushed through pain for decades until one day my knees and hips were so damaged walking more than a little ways was impossible.
Same but I use ankle and wrist braces I probably should use knee braces too but they're really itchy to me and I haven't found ones that don't bug my sensory problems
@@douglascampbell9809 my school's health center isn't great...I went in with lung problems three times and they couldn't find anything wrong, I go to the er once and l leave with a diagnosis and medication
@@danielcollins3142 yeah, I need ankle braces, but I have the reverse of your problem. Any that I've used for my ankles have upset my sensory issues, while my knee braces have been mostly fine
@@boyisbored6421 @Daniel Collins you both might have tried this already and I'm giving stupid unwanted advice, but have you just tried wearing the braces over thick socks or leggings so they won't touch your skin and cause discomfort? I don't know if that would work but I always wear braces over clothes so they don't itch.
I wish I'd seen this ten years ago! I started using a chair last year after nearly 13 years on crutches, pregnancy ruined my body (yay fibro and EDS!) I've struggled with the idea I'm giving something up and even now I have to remind myself how much I do now since using the chair that I couldn't before. I don't use crutches anymore because when I need to be supported just for a few steps. My partner is listening to this video and saying this is very me, he's heard me say it all.
YES! I got my first wheelchair after a year of barely leaving the house (and falling over every time I did). I could *go places* again and *do things* and not just sit staring at four walls. It was, and still is, freedom. Nobody has ever suggested (to me at least, but I suspect at all ever) that wearing glasses is "giving up", but they are an aid to seeing, ie. a tool to make up for the fact that my eyes are rather crap. My wheelchair is just a tool to make up for my legs being rather crap too.
We visited Chicago with ALL my problems. It was full of pain and full of finding benches. A year later, I had some answers and a wheelchair. Same city, new visit, full of JOY and SPEED as my husband could walk his super fast-paced way while wheeling me. I got to experience my first art museum without 95% "where is a bench" thoughts. Fast forward 5 years, I don't need the chair, have a lot more treatments. And that's not better or worse than five years ago. It's just proof that this "giving up" is nonsense. Different seasons of life, our journey towards answers, the drama of treatment ups and downs... I still won't go into triggers (hot summer days) walking around. But I do not regret owning wheels! The only failure is "sucking it up" so others don't see our pain...nobody's judgement is worth it.
When you get diagnosed with EDS and realizes one of your favorite TH-cam who you already follow for Automomic Dysfunction has it and you feel happy because now you have another reason to watch videos!
This video is really helpful for me. I work at a drugstore, so naturally they sell mobility aids (canes, wheelchairs, walkers, etc.) and every time I walk past them I end up messing with a cane or two. I feel like I wouldn't be valid in using one for a variety of reasons (I'm 17, don't seem to have any major diagnosed disability) but I still want one really badly due to energy issues and joint pain (plus soreness from standing 8 hours a day). And now, maybe, I'll get one. Thank you, Jessica, for providing helpful and informative content as always. xo
You don't need a diagnosis to know your own body. That's what frustrates me with the US system. They've convinced most of us that we have to wait for a doctor to approve that we are disabled before we ourselves are allowed to believe it. Get a cane or a walker if you need it. You know what you need.
@@cbryce9243 I believe that I am disabled (to some extent) but because it's not diagnosed no one around me would believe it, and that's my problem. My pain and fatigue get dismissed as being "my fault" because I'm not performing health for them. I try my best to be "healthy" but I'm exercise intolerant and have issues with food and sleep so it's pretty hard. Yet those issues are because of other medical or mental health conditions that I have no control over, so in the end, I'm doing as much as I can and being told that I really could be doing better if I just pushed myself. But pushing myself would only cause more issues. It's a never-ending cycle.
I've been debating on creating a GoFundMe to get an electric wheelchair for months but I can feel like "it's not really necessary" but the truth is that I don't go out at all and not having an electric wheelchair is keeping me isolated 😔 and then the factor of having to ask strangers for money feels super weird :(
if you think having at will access to an electric wheel chair would leave you with more energy to do what you actually want and not just what you are forced to do to survive, do it ASAP! There are no posthumous awards for self flagellation.
Good luck if you use GoFundMe to raise funds for a power wheelchair. I tried it and, though many friends reacted enthusiastically, I only raised $150. Not even enough for a decent manual chair...
It sounds like a brilliant idea! If it would improve your life, then it isn’t a question about necessity or not 😊 If you do decide to do it, I would personally love to donate!
Love the cutaways! I missed them. It is so hard to explain to people that exercise is sometimes bad-we all know it is good based on massive media coverage! The health care industry try’s the one size fits all idea.
And sometimes even when exercise is good, some people can't do certain exercises and have to pick the right ones. Because certain disabilities (or sometimes even old age - hello dad blowing out his shoulder doing two thousand push ups when he's not as young as he used to be) can make some exercises not a good idea at a given point in one's life. Yes, even if you are in a condition where exercise in general is a good idea. Even more so when physical disabilities prevent it. Heck, for some people they get physical disabilities BECAUSE they got hooked on a specific exercise and didn't listen to bodily cues that say "Stop!" (this happened to a neighbor of mine - too much running and not enough rest and now has severe back and other mobility issues he would not have otherwise). Yet somehow nobody blames the exercise for causing the disabilities, or it gets ignored even in the most obvious cases (i.e. Kerri Strug and the fact that the injury she suffered while doing a vault ended her career as a gymnast, an injury that wasn't just ignored but glorified).
I am lucky enough to be able to stand and walk, but I have family members (my mother and my child) who are not so lucky. I saw them both struggle not so much with 'giving up' (a factor informed by other people's ideas about disability) but more with acceptance that their disabilities were likely to be long-lived and/or permanent, which can be a very difficult thing to come to terms with. But once they did, their quality of life improved dramatically with the help of mobility aids, leaving them both much less isolated, more independent and more able to get out and do the things they love! Mobility aids truly make a tremendous positive impact, but can we also talk about the cost? For people who are able to walk at least a little they are rarely (if ever) subsidised or provided by healthcare services to my knowledge, which means they are cost prohibitive to so many people who would benefit greatly from them. We saved for months for a wheelchair and while it is wonderful and game-changing, I know that this isn't possible for everyone who needs it, and I really feel for people for whom a life-changing mobility aid is out of reach just because it's unaffordable.
My grandmother completely refused to ever sit on a wheelchair! And thus she was stuck in her (extremely nice and beautiful) older people home. My husband's grandmother on the other hand went on several outings and even holidays, even to a foreign country 100% don't dismiss mobility aids!!! We are so blessed that they are available and more advanced then before
I was Ill for many years. It was unrecognized by doctors. Not having a mobility aid made me LESS active, not more. It kept me isolated in the house and not able to go out much of the time, but I could have gone to events if I could expend less energy by standing and walking.
I partially broke my spine with a pinched nerve recently and at first I wasn't able to walk at all. I always felt like no matter how much pain or how little mobility I had in my legs that I wasn't disabled enough. People would ask me why I was in a wheelchair judgmentally because they cannot see my fracture. Thank you for your channel, you give people with disabilities inspiration, hope and visibility
Your channel has helped me accept my diagnosis of fibromyalgia ( among many other issues) and made me realize its ok to not be as intense and active as everyone else. I just purchased my first walking cane and im so excited!! You make me feel like myself again as i realize that yes my body is changing and in other words failing me, but im able to cope and get through everyday with your videos
Getting a mobility aid for me means I refuse to give up. I wont stay home, I wont stop enjoying myself i WILL live my life, even if its with a wheelchair.
I recently started using a cane, and while I had not seen this video yet, hearing people say "if you're asking if you need it, you probably do" is a large part of why I finally started using it. It has made such a difference, especially with having to walk across my uni's campus many days. I had been hurting more and more lately, and while the pain is still there, it isn’t as bad as it would be
I'm not even disabled. But have a severe ankle sprain and can barely walk even with my brace. Decided after a week of debating to get a wheelchair, I felt like I didn't need it bad enough. I got it today, I smiled for the first time in like 10 days today. Realised that if you need it you need it, doesn't matter how 'much" you need it.
I feel like if someone is telling you that using a wheelchair is giving up and you will only get worse, they don’t really believe you and think exercise is the answer
I wish I'd seen this video when I was younger. I resisted mobility aids for so many years when I needed them because I'd been conditioned to see them as 'bad'. I missed out on outings that I can now go to because I'm in a wheelchair and caused myself extra pain because I didn't use a walking stick. Like you say, using a walking aid is gaining something, not giving up. Thank you for this video and all you do for disability awareness.
I started using a cane a week ago so this was rather briliant timing :) without my cane, I can't enjoy 5 minute walk. without pain, but with the cane I definitely can walk a lot more and somehow even conserve energy? It is great
I love my cane, walker and shower chair. The freedom to shower and walk further and longer is wonderful. I have MS, POTS, and migraine. I was young like Jessica when I first got them and it is strange that it has bothered my husbands family so much. They will still see my walker and ask” do you really need this?” It also confuses my neighbors when one day I can walk okay and the next I am using a cane or a rolling walker. Disability is not linear.
one thing that always makes me hesitate when I think about getting an aid (besides like.. all of the hassle of finding a good one and the fact i rarely leave the house anyway so is it worth the money?) is that I'm rarely feeling pain. even when i cant leave bed or walk around the house much, there's rarely pain involved but is instead pure fatigue. I'm always thankful to you for mentioning its not just for when you're in pain, or when you're out of energy, but also for when you're conserving energy, because it makes my desire for a mobility aid feel validated. (and if anyone makes a fuss I can send them your videos and maybe get them off my back xD)
Fatigue is challenging in a completely different way than pain! My friend and her mom have both, and sometimes it really isn't the pain that keeps them homebound. It's awful for anyone to go through.
Having a motorized wheelchair would open up my life so much. I don't know how you do things where you live, but in America, you have to be evaluated to see if you are disabled "enough". Next week I am being evaluated to see if I "qualify" for a motorized wheelchair. I too am ambulatory, but have a condition called Erythromelalgia and arthritis, which makes walking extremely painful after a few short minutes. If I had a motorized chair, I could get so much more done around the house, weed the garden, AND I could go for walks around the block. Being stuck inside is just miserable. You and your family are so sweet and smart. I always get excited when I see a new recording in my feed. Thank you!
we shouldn't be insecure about things that could help yourselves i used to feel so embarrassed when my meds got bigger i feel like I failed and I wasn't trying enough but this was not true!! i hope everyone understand that the bigger priority is being okay even if we need some help
Omg this too, the number of people who can be like "oh if you start meds you will never stop" or "you will be worse after starting on meds" when life is already a pain or even a burden without :') Im so glad for you you went past that feeling !
Using a mobility scooter has helped so much with my POTS. My fear about about standing because I get dizzy and faint disappeared and I am a lot more relaxed going out. Though I wish it was better known wheelchairs/scooters are used for people with all sorts of conditions including heart problems and dysautonomia, not just because our legs might not work!
God I didn't know that that was something people actually think! Having an aid to help you move around and have a better quality of life is in no way giving up!!!
And this applies to accessible parking to. I did not realise how much I needed it till I said I'd only use it when I absolutely need it... and almost always use it now.
I'm trying to get assessed with EDS (NHS waiting lists aside) and I'm facing the likelihood of getting a mobility aid within the next five years... it's a concept I'm struggling with a LOT, both with the aspects of "giving up" but also bring "visibly disabled"
I have been diagnosed with EDS and it is honestly life changing to actually start get help and proper meds instead of being told "It's just depression". I have rented a couple wheelchairs for visiting museums and I actually enjoyed a museum for the first time I can remember instead of constantly in pain and needing to leave after only a couple hours. Best of luck to you!
Getting my wheelchair changed my life! Even before I got to the state I'm in now my eds meant that days out were really painful and knocked me out for week after from exhaustion and since having my chair it only takes a day to recover at most which feels amazing! I did the classic googling of 'how to know if you need a wheelchair' and it felt very like my earlier googling of 'am I gay' and the answer to both is definitely if you're googling it then you already know the answer!
My annoyance with my cane comes from the fact that I am very clumsy and I trip on it all the time which just leads to more pain 😂 but ultimately it helps immensely day to day
I have POTS/EDS and fibromyalgia and i didnt feel like thats "enough" for a mobility aid but this video kinda helped me realize my Cane is just not enough so im hopefully able to get crutches soon :] thank you
This video is applicable to people everywhere. And when I mean people I mean every single human on the planet Earth. Because even if you were born being able to move around on your own someday that will change. Or at least hopefully you'll get old enough to where that is the problem. Thanks for addressing this Jessica.
The advice about realistic evaluation of things like cutting trips short or having aftereffects if you don't use it - really resonates. I use a scooter for grocery shopping because even though I definitely could walk with a cart, I would pay for walking on the concrete floor and bending to place items in the cart with a night of no sleep and 2-3 days of pain. So I use the scooter.
Absolutely not! Using mobility aids enables me to be more engaged in life. I love my rollator and my electric trike. Imagine needing eye glasses but refusing to wear them because it would be "giving up". That would be crazy!
Oh how wonderfully timed! Brought a stick less than three weeks ago and a wheelchair chair just two days ago! I’m so excited to be able to work towards getting some freedom and spoons back
Thank you for this video Jessica. I refused to use my walker because I'm not old dammit. I'm 66, one poorly replaced knee and the other looks rather like that kitchen sponge you threw away last week. I also have arthritis pretty much everywhere else too, especially my back, oh, and scoliosis. The point of my story is that last week I did not have a ride to the clinic but I did have an appointment. Now the clinic is only two blocks away but that is too far for me to walk. So I bit the bullet and used my walker (it's been prescribed for several years). I was amazed at how well I did. I walked upright so didn't stress my back, I didn't put uneven pressure on my knees. It was a breeze. I'm not saying it didn't hurt; it still did, but no tears. And, I could make the trip back. Use the damn mobility aid!
this is such an important video. I have never been able to understand the people who are against the use of mobility aids. i think the mobility aids should be encouraged. don't know why people connect using devices that help us live our life better to being lazy or "giving in to your body's disability". Like people do know their bodies and they know how much better they can feel and how much more they can accomplish with some aid. my mother is more than 65 years old and she has trouble walking long distances (like walking around a park or even grocery shopping). usually i walk with her and either warn her of any sudden steps etc or hold her hand so she won't fall. And even though i have tried to reason with her that she can use a walking stick as she has trouble with her balance and falls over a bit more than usual (almost every time she goes out alone) but she has this idea that using a walking stick would make people look at her like she is old and frail and she would find it embarrassing. i know a lot of people associate the use of mobility aids with being "weak, ill or disabled" (and take it as a bad thing somehow) which is just ableism. i hope mobility aids can be made more normalized and the world could be made more accessible for every one.
I’m with you. I don’t understand how people wouldn’t want others to not be in pain or to be safe or to be able to do more. Who cares if they need some sort of aid?
It’s like you are describing my parents and my in laws. My dad is 82 and was unsteady on his feet but refused to use a cane. He fell badly 5 months ago and shattered a leg. He now has to use a walker all of the time and probably for the rest of his life. My mom- who is 77- had their bathrooms remodeled and took out the grab bars and shower bench in the remodel because “ it looks like old people live here”. My mother in law has bad knees and falls a lot but says she will never use a cane because she is afraid of what the neighbors will think. Is this an older generation way of thinking??? I have pain and autoimmune diseases and use a cane and shower chair and never cared what other people thought. For me it was like getting prescription glasses.
@@jenniferw1595 oh, your poor parents and in laws! All that added pain and stress. I’m with you, who cares what other people think if it helps you. -When we remodeled our bathroom we put bars in the shower figuring that my wife’s bad back will just get worse as she gets older and she will eventually need them. Never even crossed our minds how it will look to others.
Hi all. I have fibromyalgia, DDD and osteoarthritis in my spine. I bought a folding walking stick when I went on holiday with my folks a few years ago and even tho I was in immense pain, the stick in my bag was my dirty little secret. My conditions are getting worse and I'm now seriously considering next steps...wheels. terrified about judgements of others but I know I'd be able to walk the dog every day if I had the option of a mobility scooter or electric wheelchair. X
Almost cried as always watching your videos on disability haha, but this really helps feeling "legitimate", as a 22yo using a cane to not just pass out by standing up or walking 200m, it was and is still hard sometimes to accept it, but this helps a lot thanks (and i will definetly send this to all the people who are saying to me "IF YOU WANT IT YOU CAN DO IT" lmaoo) because your first part on the difference between abble and disabled bodies is really nicely explained ! And your life doing everything by sitting down : yes. That's my life too xD
The whole reason I felt comfortable getting a mobility aid was because Jessicas videos about finding an electric wheelchair and I will forever be grateful for that.
glasses are also mobility aids. Yes you can see without them and you can get around without them but certain tasks require the glasses and you can see more and get more thi gs done so it's similar to a different mobility aids. Yes you can manage without the mobility aid your using but it helps you do things more and in some cases you need it.
i love this, i have POTs and my main worry is ... am i a good mum because im not able to do the things most mums can do, its nice to see another mummy who struggles but is still a great mum ...thankyou
I just wanted to tell you I just got a foldable cane and decorated it with glittery washi tapes and I'm so thrilled and happy to be able to walk at the end of a long day. Thanks. I've been coming back to your videos about disability since we couldn’t figure out what was wrong, and then watched them again after the EDS diagnosis and each time I felt down, and I feel so understood ❤
I used to be a cane user, and it was a life saver. I could walk for longer, and it helped with dealing with fatigue, plus, I sort of felt safer, having a cane for protection. I don't need it nowadays, since my condition improved drastically, but honestly, I am glad it was there for me. When I see people using mobility aids, I feel happy for them, for having such great tools for independence, and taking care of themselves.
My sister had a severe connective tissue disorder (polychondritis). When she found she could not get in and out of a regular bed any longer, she got a recliner that would help her get to a standing position and slept in that. For walking around the house, she had a walker and for going out, she had a wheelchair. But all of her mobility aids helped her to live the best she could. Without them, she would have been bed-bound the last five-six years of her life. Why would anyone think that something that helps you is giving up is beyond me.
For me, not getting one was giving up - giving up going out, giving up working, giving up having fun and being outside in the sun. Now with a wheelchair, i can do alll of those things despite having fibromyalgia and CFS, z
It certainly does NOT. Work smarter, not harder. Happy to see this conversation out there! It's low key ableism and so many folks fight that inner voice because they don't want feel like they've given up.
I'm struggling so hard with adjusting to having to need a cane, let alone the chair when I do. Thank you for making this vid, I've been watching your content even before I lost mobility. You rock in helping spread awareness and advocating for everyone!!!
I need to show this to my sister so bad - she recently got a diagnosis of fibromyalgia but she won't accept getting herself a mobility aid or even borrowing my shower chair or adjustable walking stick because she 'used to be fine doing xyz' 😟 maybe hearing from someone who isn't her baby sibling will help?
My gosh, I wish I could send this video to my therapist. I use a walking cane after a very complicated leg injury. She insisted a very long time, I should get rid of it and my cane makes me look like an old lady (I am 29). Disregarding the fact that although I CAN walk without it, I have less pain with it and I can walk longer distances. THANK YOU for this video! Love your chanel very much.
I'm about to travel a long distance with my mobility aid, crutches, for the first time and while I'm freaking out about having to handle them alongside bags, TSA agents etc, I know they'll help me move around the airports and transportation so I don't waste all my energy on the traveling! I'm going to London for the first time to see a concert, I wanna be able to spare energy for the things that matter. I don't use them a lot and I can usually walk around town in my everyday life without a lot of trouble, but when I do need them they're INDISPENSABLE. Thanks for this video, Jessica, you're as lovely as always!
Getting a cane meant that I can walk without pain. And getting one that was extremely fashionable for me was essential so it didn't look like a medical device. I call my cane Gertrude or Gertie for short and I love walking around with her when my arthritis gets bad because I know she'll turn heads.
It's not giving up imo, it's accepting where you are in life in the moment and that you need help, nothing wrong with that, I'd probably hurt myself more trying to walk and push myself, I'm letting myself heal and just accepting this is what it is for now, and I'm glad to have the resources!
When I learned to use a walking stick I watched a video that said "better to walk 500 meters with a stick than 2 meters without" and I think about that all the time
![Why I Need A Mobility Aid (Scooters) // Mobility Aids 2 [CC]](http://i.ytimg.com/vi/z4srWPeQeEc/mqdefault.jpg)
People actually think, and even worse, say getting a mobility aid means you've given up? That's like saying my getting glasses at age 6 was "giving up."
People forget that glasses are a medical device that aids people with vision impairment. Most people Would be shocked if you tell them that their glasses are the same as other disability aids.
I wish use of mobility aids was as normalized as using glasses.
Me too.
I obviously gave up at the age of 12, and considering that I just switched up to varifocals I’m probably doomed.
Totally. If you take antibiotics have you given up on your immune system?
We need to start normalizing making pretty, cute, decorated mobility aids. I’m under 18, but the second I get myself a rollator I WILL decorate it as much I want and I WILL buy it in pink.
I did this with my mobility scooter. Its covered in stickers now it represents me and not my chronic illness.
Yes! Couldn't agree more! Love that you're getting a pink one!! 😁
I really wish there was a company that made parts for customizing mobility aids. Most of the parts are standard sizes so there should be no problem swapping out parts for things the owners find more appealing.
I just got my rollator. Mine is maroon.
I see this very similar to how people treat glasses. I need glasses to see but I have to use and wear them all the time so might as well get a cute pair that suits my taste and style.
Mobility aids shouldn't be treated any differently if the person feels like it. I will never understand why so many aids come in this weird beige that suits no one if it's made out of any kind of fabric or meant to be worn against the body like a brace or it's silver and white. I want a green cane once I need one, I will get one even if I have to paint it myself.
Exactly! To me, "giving up" is not bothering to get a mobility aid and resigning yourself to just staying home all the time. Getting the mobility aid means the opposite of giving up.
YES!! This is exactly what I've said to the few people who've questioned why I got my chair, it means so much freedom to me
Yes! Giving up on yourself is choosing to be prideful and refusing to adapt to new challenges
@@dorkasaurus.gretch I wouldn't call giving up "prideful" or "refusing to adapt". It's despair and a sense of helplessness. And depending on where that came from, it can be very difficult to overcome.
I have CFS/ME and have been considering getting a mobility aid of some sort but have never gotten one because I didn't want people to think I'd given up. This comment changed my whole perspective. Thank you for this comment!
That is true, I don't go out that often and when I do it almost always hurts a lot in my legs and it's a shame because I really enjoy going out and do stuff that I like
"Giving up" is not going to pride, not going to the convention, not going shopping, not going to the party the zoo the aquarium the fireworks, etc. and resigning yourself to stay home for the rest of your life because of the pain. I was too ashamed for a long time to use a wheelchair because i didn't feel "disabled enough" but if you're missing out on things because of your disability you would definitely benefit from a mobility aid. I've used my wheelchair a few times now and i feel free, happy, and way less disabled than i did without it. Your mobility aid series and channel at large really helped me reach this stage of my life and i'm very grateful.
I have said so many of the things you have said here. It feels good that some understand what it is like to be disabled, but not enough.
I feel this way. I feel like I am not disabled enough to ask for a wheelchair. It took everything I had to ask for a mobility scooter. And a rollator that can turn into a manual wheelchair. And even that one I can hardly use. Because my husband can't fit it into the car, without putting a seat down. So I feel like asking for a real wheelchair, would close too much trouble. Especially one that's electric. I still go to things, like this weekend I am going to pride. And I am using "big boy" that's what I call the big rollator, but I know, that I am going to pay for it for days after. But I also know, that I am going to grit my teeth together, and pretend that everything is fine... This is actually the first time I am admitting this to anyone... including myself.
I have a lot of anxiety and feel Like an Outsider to my own Life for staying home, thank you sm for this Lil peptalk i am gonna get the Mobility aid i wanted for so long ❤
I feel this way. I am being evaluated for EDS & I almost certainly have it. Walking & standing for a realitvely small ammount of time often hurts a lot & I start limping, then it sticks around for a really long time. I attend anything that I find to be fun but it hurts a lot & I often fall down. Sometiems I can't walk a lot for a while so I am mostly at home. I attended a festivale with friends during the summer. It was really fun but I was in a lot of pain so felt like I was making it worse for others because I had to sit down several times we all had to stop & when I get up, I am still in pain and have difficult walking. I lived alone but had to move back with my parents because I couldn't stand up long enoguh to do basic chours. I will move out next month and try to be independent. After that I will try and get a wheelchair because it would help me a lot. I am just nerveous about talking with my parents
I am in this boat. I need both hips replaced and I’m still in my 30s. My doctors said wait until it’s unbearable. Well…I have been living through pain for 5 years and I didn’t realize how terrible it’s gotten.
And I’m at that point, I don’t even want to go to the mall or travel because it’s just pain. And since I’ve lost strength, even simple walking causes me to sweat like a tweaker.
I’m at the point where I think a mobility aid will be what can help me build the confidence and strength to fully get back out there before and after my surgery.
I was absolutely astounded the first time I used my wheelchair in a large store.
Previously, I'd just tried to rely on leaning heavily on a cart, but usually ended up getting super lightheaded around half way through the store, followed by regretting my life choices.
I was actually outpacing my friend who usually goes shopping with me and I didn't feel like crap afterwards. Such a wonderful feeling!
That is great :D I find walking in a large store for even a short ammount of time to be really painful
The most frustrating part of this for me is, I know a mobility aid would help me in so many ways. But I also know that my family would judge me to death for using it. I've tried explaining how challenging things are for me and the conversation just turns into "why aren't your meds working" to which I respond "they are working they just aren't a cure" this concept seems completely lost on my abled family and I'm just at the point where I've excepted that my quality of life is going to be limited until I move out.
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A lot of people don't understand that medcation can help you manage a condition but it is not a cure. My doctor explained that one can manage diabetes, but there is no cure. I try to use this example to explain to family that my condition does not have a cure, and my meds help me manage to live my life.
I'd like to tell your family that if they can't quit beeing abusive, they should go cripple themselves, or I could do them the service, they just have to ask.
Jokes aside, start recording your interactions with them, and then, if you can afford it, find a lawyer to serve them with a Cease and Desist notice, including the applicable laws on harassment and time stamped transcribed excerpts of the recordings showing the pattern of their abusive interactions towards you.
Sincerely, a physically able bodied guy with ADD and intermittent depression married to an ambulatory wheel chair using spouse.
I have the same struggle trying to explain mental health meds to people. Antidepressants and antianxiety meds can improve my symptoms, but they don't magically make me impervious to bullying and verbal abuse. Some people assume my antidepressants would make me magically able to also tolerate bullying, condescension, gratuitous insults and people being verbally abusive and shouting in my face. That's not how psych meds work. I eventually decided to avoid those people no longer attending the same church with them. Unfortunately, one of them became a deacon.
Ugh. I hate the "just get new meds" type of comments. I'm doing way better than I ever could've dreamed four years ago, but that doesn't mean I'm cured. I'm still in pain every single day, I still can't even get out of bed some days. But my pain level is mostly stable, unless I encounter a bad migraine trigger. I used to go from relatively fine to "turning my head makes me hurl" in a few hours. Now if I'm relatively fine I'm probably gonna be relatively fine for the next few days.
This means I can actually make plans and usually attend them. Instead of making plans and having to cancel two hours beforehand, only to get "You were fine three hours ago. Why do you never think about anyone else?". Like oh, sorry, I didn't realize "having to change plans" was worse than "having to cancel plans you were really looking forward to so you can hug a trash can for the next 12 hours while your head explodes while being judged that you "don't care about other people's feelings"". It must be soooooo hard for you. 😒🙄
But still so many people tell me "You should go see a doctor". Like you think I haven't?
Oh boy here we GO!
My sister started using a manual wheelchair in middle school, and she upgraded to a motorized chair in high school. To an outsider, it might seem like her disability is getting worse, and while she’s not a little kid anymore and she needs more assistance than she used to, that’s not at all how we see it.
For her, an ambulatory user who has very limited control of the left side of her body, it was a HUGE game-changer. Totally worth the cost of the chair! And last year we got a van with an automatic ramp. It’s not cheap, but fortunately we’re in a position that we can afford these aids, and each step has done so much to boost my sister’s confidence, comfort, and autonomy.
Same! It's about the independence!
The less work she has to put into manually moving, the more energy she can devote to other things! 💜
I recently broke down and got a shower chair which changed my life. The ability to just sit and wash my body without getting extremely exhausted and passing out is incredible (thank you POTS 🙄) and CRPS (complex regional pain syndrome). I'm looking for a walker chair now because it will help andI'm tired of hiding in the house. Thank you for sharing your story. Much love from Oklahoma!
I'd recommend the Hugo Navigator for a rollator/walker! It also turns into a transport chair if you need someone to wheel you around when you get faint or exhausted. It's made a huge difference in how long I'm able to be outside with POTS!
Best of luck!
i also have pots and got a shower stool recently, and im in love with it! i can shower more often now because it takes much less energy, and im so happy about that
You can't mess around when it comes to the shower -- safety is your #1 priority! It sounds like you made the right decision, especially if there's a chance of you passing out in there!!!
@@gracemangum you are so right!
Honestly, taking a shower sitting down is one of the best chronic illness tips I have ever used. It really helps with being less exhausted.
I had my GP tell me that I was giving up when I told her I felt it was time I start using a wheelchair. She didn't think I needed one because I always looked fine when I was in her office. She missed the fact that I had to get a taxi to go the 350 meters from my house to her office.
Then I had a pain specialist in one of the biggest hospitals in the country tell me I didn't need a wheelchair because being able to stand and walk for 10 minutes at a time was "plenty." Nevermind that I had to walk more than 10 minutes just to get to my bus stop.
Then I had another GP tell me that I'm too young to be using a wheelchair and that we should work on getting me out of it.
I haven't used my wheelchair at all the last few years, mostly because I haven't left my house much because of Covid. But hearing those things from doctors just makes it all so much harder.
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Good heavens. Those horribly unempathetic and ignorant doctors don’t belong in the health-care field. I’m so sorry you had to go through that!
Um. Don’t go back to those doctors. That’s horrible
I am having this issue as well. They will not even entertain the idea of a wheelchair. I know that I need to keep my function up, which I do but there are times where walking is almost impossible. I tried a rullator but when I am so poorly it is dangerous for me to try to walk with it. I run the risk of having it shoot away from me.
I stay home if it gets that bad now.
They whinge over me using a cane. I have used it almost everyday for four + years. The canes I have bought with my own money because they won't prescribe one for me.
@@MsArmitage I would go off on my Drs if they did that to me.
To my Drs credit none of mine have told me anything like this but I have decades of X rays showing my knees and hips degenerating.
I bought and made my first canes.
Getting a mobility aid means gaining power. Great subject for a video Jessica x
Probably why the abelist dislike them
Love this comment! ❤️
The fact that someone would tell another person that getting a mobility aid (or any kind of health/quality of life aid) is “giving up” is just insane.
Exactly what I was thinking, thank you!
I think its a sign they're fighting. If soemthing will improve their quality of life then they need it.
Is like telling somoene they're "giving up on seeing" by getting glasses. completely insane
My mom used to tell me this about a wheelchair, even though I spent my childhood with crutches and walkers. It's unfortunately common for parents of disabled people to do this as their abilities change with age. In a similar vein, as the parents age, it's often hard for them to realize their grown children, though younger, may be having a harder physical time than they are.
@@azulineamphisbaena9997 i have had kind of the same experience with my dad.
As a physical therapist the idea of someone saying you are "giving up" by getting the help you need and taking care of yourself, your needs and getting to be more involved in you own life just makes my blood boil!! Thanks for helping educate and spread awareness👏
Sadly, it was my Physiotherapist who told me they didn’t want me to get a wheelchair. I needed it to be able to engage in my life. :’(
@@legibletiger839 I'm so sorry they did something like that to you
My little brother took a cane on his last class trip, to help him stay on his feet all day. He doesn't have anything diagnosed, so he told me he felt guilty when a guy on the underground gave up his seat for him. I think I'll forward this video to him
also, tell him that using a cane to have energy last all day is no different than changing worn tyres on a car before they blow out and requires towing.
this is how i feel too, i'm a young person and i don't have anything diagnosed but i use mobility aids to keep me going and on my feet because i struggle with fatigue, standing and unsteadiness. and i'm always worried about my future, and i also often feel guilty. ik i don't personally know ur brother but let him know i'm so proud of him. ❤️ it's still scary for me and i've been using aids for a long time, i wish i had learned sooner that it's ok to use mobility aids if it helps me in any way.
Crying at "disability is not an innately bad thing" thanks lesbian mom ❤
Your channel has helped me be more comfortable with my disability (even naming it so is a big step!) And I bought a cane for a trip coming up to help with long walks or standing that hurt my back and I'm so excited to see how it goes! Thank you Jessica, you're such a treasure!
She's done the same thing for me too! While I'm still pretty young (first year of university), I have a lot of chronic pain and joint instability due to being an athlete for around 10 years (anything I could sign up for, I was there. Volleyball, basketball, track, soccer, curling, figure skating, running, badminton, competitive dragon boating, etc) and being a major league klutz and getting many injuries, including somehow almost dying while in curling practice. I recently started using a cane, I'm also a music major and often carry my ~30 pound saxophone case on my back walking around campus, which is rough on my back and neck. Using a cane on a not very accessible campus isn't the easiest thing, but using a cane makes walking between buildings or even between rooms so much easier! Her videos have made it so much easier to accept and embrace my disabilities!
Me too!
I live in Pennsylvania and am generally considered able bodied, but a hiking pole is a must on some of our hills. Especially in bad weather, like snow, rain and flooding that cause mud, or really wet leaves. We have lots of wet leaves because our name literally means woods. Fall is very slippery.
@@letitiajeavons6333 Wet leaves and ice are both so brutal! I'm Canadian, so we generally have ice and snow from mid October to late April/early May (we just had the biggest blizzard in a century in my province, 6 feet of snow in some places, winds well over 90 km/h consistently), and an ice attachment for my cane is a huge help, though not foolproof, as I have fallen on ice on campus at least 4 or 5 times due to the sidewalks, parking lots and wheelchair ramps being super icy.
One of my favourite quotes by a musician I love is "sometimes, decisively giving up is the bravest thing you can do." He said it in the context of comforting someone who had given up on their dream, and it really changed how I look at giving up. Giving up, choosing battles, accepting defeat, it takes an enormous amount of courage to choose what to do. While I don't think using a mobility aid is giving up, I also don't think people need to be hard on themselves when they do give up on something.
I just picked up my first custom made wheelchair as an ambulatory user. It was a huge decision to make, but I love the independence it's given me already.
Oh! That has to be so much more comfortable!
Every friend and spouse/partner of someone with a disability or mobility impairment HAS TO SEE THIS! I'm so tired of the ppl in my life saying things like, "Why do you need that, you can walk just fine!" No, sunshine, I can walk until l can't and I don't want to be in a position where I pushed myself too hard and then I'm stuck. Even the greeter at our Walmart gave me the very obvious slow updown to internally determine if I was actually disabled enough to ask for a scooter. I just looked at him and said, "It must be nice to be able to stand on your feet all day and judge people!" I was taught to keep my mouth shut, but he made me so angry! I'm so tired of it and my joints and feet are in so much pain! I have a rollator for big events like the occasional comic expo and use a cane almost 100% of the time now. I'd like to start using either the rollator or a wheelchair but that judgment, especially from my own family really hurts.
exactly, they wouldn't think about questioning you for servicing or refuelling your car regularily instead of waiting until it breaks down, so why do they expect you to skimp on preventative maintenance of your own body and let yourself break down to the point you'd need to be carried home or to the ER?
My husband agrees, and sent me this video as confirmation of a discussion we'd recently had. 😊
Ignore your family. Use that rollator or wheelchair.
I got a rollator around Feb/Mar 2923. Within a week, it made the biggest difference in my life. I went from barely being able to walk to get my mail to finding it to be a piece of cake.
I was using a cane, but it didn't do much for me. It took me 15 minutes to walk to the mail gazebo one way. Now, using my rollator, I can make the whole trip in the 15 minutes stopping to look at new growth and flowers along the way.
I can also walk a mile to get prescriptions and groceries or go out to eat. It took over a year to work up to that distance. I can barely walk out to the parking lot without my rollator even now.
This video came at the perfect time for me. Though I've been disabled for 24 years, I just used a wheelchair for the first time last weekend to get around a convention. It was so wonderful to be able to enjoy the event instead of gritting my teeth through pain the whole time. I didn't have to spend days in bed afterward as my "punishment" for doing something fun. Now I wish I'd started using an aid years ago. This video really reassured me in the wake of the few remaining hesitations I had after trying out the wheelchair. Thank you so much for your empowering content!
A wheelchair is preventative maintenance of your body.
I first used a mobility scooter at a large convention, with the same wonderful results. My mother was also there and delighted in my laughter when I sped by her on the way back to our room. Then, I rented one for my eldest daughter's wedding activities. My husband was so impressed with how much I was able to do that he started saving for me to own one myself. What joy to roll to the library, a store or the beauty shop independently!
Sadly, after a surgery to fuse my knee, a scooter no longer provides enough support. Neither does an inexpensive and foldable power chair. We could probably squeak a payment for a power wheelchair but then we'd not have enough money to move to a less expensive area when my husband retires in a year or two. My insurance won't pay either, since the Medicare rules they follow seem to believe it's completely unnecessary to ever leave your house. They do provide a cheap rollator for my use.
@@macherie1234 That’s a shame! I feel you - now that I know how much I need a power chair, I have to figure out how to pay for one …
Exactly. I understand the gritting teeth through pain part, lol. Exactly why the rollator and wheelchair are on my list of next stage of my life items. I no longer want to be held captive to the pain. If anything gives me more freedom, bring it on!
@@southernlady5085 I got a rollator last week and used it at an event where a wheelchair wasn’t practical. It was great! I was up doing household chores the day instead of in bed. Highly recommend!
I'm such a big fan of mobility aids. If they make your life easier, then how can it ever be bad to get one?
I've been an ambulatory wheelchair user since I was 15, and without it I wouldn't have been able to go to school. These days I can't leave my house at all, and I can't use my wheelchair indoors because my arms are too weak to push myself, so my wheelchair doesn't get used much, but I now get around my home with a cane and a rollator and they save me a lot of energy.
Maybe you'd benefit from an electric wheelchair. I have poor stamina and weak muscles, so I can't manage a manual wheelchair, but I ❤ my electric!
@@reachandler3655 Ooh, I have been thinking a bit about an electric wheelchair... I think I'll look into one, thank you!
@@ReaderOfBooks88 If you're going to use outdoors I'd recommend a mid wheel drive, they cope better with slanted pavements, hills, etc. I've had 2 rear wheel drive and they both tried to kill me, most drop kerbs and driveways the path slants towards the road, and they'd slide into road, even with both feet down and pulling back joystick (reverse). I had many close calls, but no problems at all with my current mid wheel drive.
@@reachandler3655 That's really good advice, thank you! I'll keep that in mind. I'm glad your current mid wheel drive doesn't try to kill you like your rear wheel drives did. Those close calls must've been scary!
@@ReaderOfBooks88 terrifying!
My chronic illness developed 8 years ago. Some of my family always preached the idea of "use it or lose it" this year I have finally got a mobility aid wish I had got one before
I got my first rollator recently and it's given me so much freedom dealing with my severe, chronic back pain. Instead of focusing on the pity I keep getting, I'm decorating it with spray paint, glitter, and custom accessories 😊
When I got my first wheelchair, I called it my freedom chariot. It opened the world back up to me. I was no longer limited to destinations where I could park directly in front of the entrance. And I could go on “walks” again.
I've very recently started using a mobility aid (a very snazzy and stylish walking stick!) and it's been such a great addition to my life. I now actually have energy left when I come home after a shopping trip or outing, and I don't have to worry much about dizziness, because if I get dizzy I have something to lean on that helps me keep my balance.
😍
A family friend has a lovely cane that she has started using, especially in winter, for safer mobility. It is teal, with a silver metallic dragon scale pattern engraved. Our entire family has actually remarked admiringly on the beauty of the aid she has found, and how well it suits her!
"Walking sticks and um-ber-el-las, in their mitts, puttin' on the ritz"
Oh this. So much this. Mobility aids changed my condition management and quality of life completely for the better and I wish more people realised that! 💜
Absolutely perfect timing. I just got a mobility scooter and I am a bit insecure about it but you get me right over that hurdle. Me and my joints thank you
As always, thank you. I got my first manual wheelchair the summer before Covid, which helped immensely with my job as a teacher, and a custom one this past winter. Having a wheelchair that fits is so much better and I have a lot more energy! Finally with Covid in a slight period of abeyance I am actually getting out and about to events, and enjoying myself. That's something I hadn't been able to do in years. Yes, I can stand and walk - a lot of the time, but I cannot stand easily or safely sometimes, and I cannot walk very far ever even with crutches. I rarely stand or walk in front of my students because it alarms them when I am in pain or actually fall. The wheelchair was my act of defiance because it has kept me able to work at a job I love instead of having to quit and stay home. Giving up? No. Getting out and enjoying myself a lot more? YES!
You go!
Yes! So glad for you! I also have used both a rollator walker and a wheelchair in my classroom. I'm not sure I'd even have gotten through student teaching without them.
Nodding along so much with this. I wear glasses because they help me see better. I use a walking stick and a mobility scooter because they help me get about better. What's the difference!? No one has a problem with the glasses, but everyone has things to say about the stick and scooter. When I bought my mobility scooter, I absolutely wasn't giving up. completely the opposite. It gave me more freedom, more independence. I love it!
I have fibro, I have lots of really good days, people see me more on my really good days. On my bad days my legs hurt and feel like lead and I can deal with a lot of vertigo. Rest and NOT pushing my body beyond gentle exercise is what my body needs to get to the good days. My husband and I have talked recently about getting me a wheel chair for when bad days meet needed movement. Especially since I have a painful surgery coming up that could make me flare badly. I know there are parts of my family that are going to judge, judge, judge. But they also tend to be the same people that keep asking when I will be going back to work. The answer is never, Uncle J, N.E.V.E.R.
Thanks for this! When you said, '...because I don't leave my house...daily!' I laughed myself silly. Right there with you. The day I got my rollator (with a handy built-in seat) and could finally go to an art gallery BY MYSELF for the first time in ages was a a few hours' worth of absolute joy. Sure, it's odd to get those pitying/disbelieving looks in public, but it's a lot worse to fall down in public, so I'll take a mobility aid every day I need it. 💜
This make me feel so much better about using my crutches when I need them for lowering my pain to a bearable level while I "technically" could still walk without them. Thank you.
My doctor told me to use it if it helps. Technically I don't NEED a cane just yet but I still have one at home just in case.
A simple foldable one for now I have never used it but it doesn't take up much space and I know where it is if I wake up and it's a really bad day.
A mobility aid doesn’t mean you’ve given up. It means you’re just getting started. I love the videos.
This video means so much to me. I recently got a walking cane to help manage my postural tachycardia syndrome. Having something to lean on helps me get to a safe place more easily if I’m about to faint, as well as helping with balance. It has made a huge difference to my confidence while being out by myself, but I’ve also dealt with some backlash and mean comments from strangers who think a young, otherwise healthy-appearing person shouldn’t have a cane. I’m so glad to have this video to show my family so they might understand a little better. My cane does give me more freedom and hearing you explain that so eloquently brought me to tears. Thank you Jessica
Keep on doing what is best for you. Good luck.
People just need to learn to mind their own business!
Ayyyye another POTSie with a cane! 👊🏻 Jessica has the same affect on me ❤️
4:44 omfg, this mentality almost killed my mom when she needed dialysis! And she's still fighting against getting a mobility aid because of cultural stigma.
It is infuriating how we have been manipulated and brainwashed into not trusting ourselves.
I still fight this mentally even though it's been years since I started using a wheelchair and walker. I was ok with a cane because I found one that I liked and looked cool.
My biggest problem is my circulation in one leg isn't great so sitting upright is quite painful, makes my leg swell, and causes clots.
I really want to do more, but the 6 days in hospital with to quote my Dr "A large clot in each lung and a multitude of smaller ones in both." has made me reevaluate pushing my boundaries too hard. (death being a bummer and all)
❤️
“Giving up” is actually just deciding that if you can’t do something without a mobility aid, you’re not going to do it. 🤦♀️
Also: “if it’s annoying to use, you don’t need it” is such good advice. I usually say, “My cane is more trouble than it’s worth, until it’s not.” And that just means that sometimes you need it and sometimes you don’t.
Oh, my cane is annoying sometimes, like when I need two hands, but it is great when my ankle goes out,and I don't fall! Or when I can go to a convention or Disney World, and still be able to walk at the end of the day.
One of my siblings and I both have hEDS/HSD and we were just talking about this! It's valid to be afraid of going outside with a mobility aid for the first time because of worries about ableism you may face, and we were chatting about just this fear. But if it helps you gain independence long-term, it may be worth it. Often a good metric for when you should look into getting a mobility aid is this: the moment when you start to wonder if you need a mobility aid and whether or not your life would be improved with one... that's often a sign that you should consider looking into one. 💖 (Obviously there are exceptions and nuances to this, but as an idea, it's often a good place to start!)
also, why the f*** isn't wheel chairs designed with shock absorbing suspension as a default?
i had a stroke 3 years ago I just got a powerchair it has changed my life i now have freedom, I am no longer trapped in the house,I can get some sunshine.
I need a cane and knee braces due to undiagnosed pain. (I haven't had time or money to get to the a doctor, but I know I need to) When I first started using the cane, I nearly cried because it made walking so much easier and took off so much stress from my body. The only time I don't use it is when I'm around my parents, who I don't think would understand...but I don't see them too much, seeing I'm in collage multiple states away
See if your college has a student health clinic. Most services at the Student Health Clinic are provided at no cost to students and special needs assistance is one of the things they do normally.
They may also have access to programs to make things more financially available to you.
Good luck.
Don't wait too long like I did. I pushed through pain for decades until one day my knees and hips were so damaged walking more than a little ways was impossible.
Same but I use ankle and wrist braces I probably should use knee braces too but they're really itchy to me and I haven't found ones that don't bug my sensory problems
@@douglascampbell9809 my school's health center isn't great...I went in with lung problems three times and they couldn't find anything wrong, I go to the er once and l leave with a diagnosis and medication
@@danielcollins3142 yeah, I need ankle braces, but I have the reverse of your problem. Any that I've used for my ankles have upset my sensory issues, while my knee braces have been mostly fine
@@boyisbored6421 @Daniel Collins you both might have tried this already and I'm giving stupid unwanted advice, but have you just tried wearing the braces over thick socks or leggings so they won't touch your skin and cause discomfort? I don't know if that would work but I always wear braces over clothes so they don't itch.
I wish I'd seen this ten years ago! I started using a chair last year after nearly 13 years on crutches, pregnancy ruined my body (yay fibro and EDS!) I've struggled with the idea I'm giving something up and even now I have to remind myself how much I do now since using the chair that I couldn't before. I don't use crutches anymore because when I need to be supported just for a few steps.
My partner is listening to this video and saying this is very me, he's heard me say it all.
YES! I got my first wheelchair after a year of barely leaving the house (and falling over every time I did). I could *go places* again and *do things* and not just sit staring at four walls. It was, and still is, freedom.
Nobody has ever suggested (to me at least, but I suspect at all ever) that wearing glasses is "giving up", but they are an aid to seeing, ie. a tool to make up for the fact that my eyes are rather crap. My wheelchair is just a tool to make up for my legs being rather crap too.
We visited Chicago with ALL my problems. It was full of pain and full of finding benches. A year later, I had some answers and a wheelchair. Same city, new visit, full of JOY and SPEED as my husband could walk his super fast-paced way while wheeling me. I got to experience my first art museum without 95% "where is a bench" thoughts. Fast forward 5 years, I don't need the chair, have a lot more treatments. And that's not better or worse than five years ago. It's just proof that this "giving up" is nonsense. Different seasons of life, our journey towards answers, the drama of treatment ups and downs... I still won't go into triggers (hot summer days) walking around. But I do not regret owning wheels! The only failure is "sucking it up" so others don't see our pain...nobody's judgement is worth it.
When you get diagnosed with EDS and realizes one of your favorite TH-cam who you already follow for Automomic Dysfunction has it and you feel happy because now you have another reason to watch videos!
This video is really helpful for me. I work at a drugstore, so naturally they sell mobility aids (canes, wheelchairs, walkers, etc.) and every time I walk past them I end up messing with a cane or two. I feel like I wouldn't be valid in using one for a variety of reasons (I'm 17, don't seem to have any major diagnosed disability) but I still want one really badly due to energy issues and joint pain (plus soreness from standing 8 hours a day). And now, maybe, I'll get one. Thank you, Jessica, for providing helpful and informative content as always. xo
You don't need a diagnosis to know your own body. That's what frustrates me with the US system. They've convinced most of us that we have to wait for a doctor to approve that we are disabled before we ourselves are allowed to believe it. Get a cane or a walker if you need it. You know what you need.
@@cbryce9243 Exactly, it's preventative maintenance!
@@cbryce9243 I believe that I am disabled (to some extent) but because it's not diagnosed no one around me would believe it, and that's my problem. My pain and fatigue get dismissed as being "my fault" because I'm not performing health for them. I try my best to be "healthy" but I'm exercise intolerant and have issues with food and sleep so it's pretty hard. Yet those issues are because of other medical or mental health conditions that I have no control over, so in the end, I'm doing as much as I can and being told that I really could be doing better if I just pushed myself. But pushing myself would only cause more issues. It's a never-ending cycle.
I've been debating on creating a GoFundMe to get an electric wheelchair for months but I can feel like "it's not really necessary" but the truth is that I don't go out at all and not having an electric wheelchair is keeping me isolated 😔 and then the factor of having to ask strangers for money feels super weird :(
It sure does. I don't know if you can afford, but they do make payment plans.
if you think having at will access to an electric wheel chair would leave you with more energy to do what you actually want and not just what you are forced to do to survive, do it ASAP! There are no posthumous awards for self flagellation.
Good luck if you use GoFundMe to raise funds for a power wheelchair. I tried it and, though many friends reacted enthusiastically, I only raised $150. Not even enough for a decent manual chair...
It sounds like a brilliant idea! If it would improve your life, then it isn’t a question about necessity or not 😊 If you do decide to do it, I would personally love to donate!
Love the cutaways! I missed them. It is so hard to explain to people that exercise is sometimes bad-we all know it is good based on massive media coverage! The health care industry try’s the one size fits all idea.
And sometimes even when exercise is good, some people can't do certain exercises and have to pick the right ones. Because certain disabilities (or sometimes even old age - hello dad blowing out his shoulder doing two thousand push ups when he's not as young as he used to be) can make some exercises not a good idea at a given point in one's life. Yes, even if you are in a condition where exercise in general is a good idea. Even more so when physical disabilities prevent it. Heck, for some people they get physical disabilities BECAUSE they got hooked on a specific exercise and didn't listen to bodily cues that say "Stop!" (this happened to a neighbor of mine - too much running and not enough rest and now has severe back and other mobility issues he would not have otherwise). Yet somehow nobody blames the exercise for causing the disabilities, or it gets ignored even in the most obvious cases (i.e. Kerri Strug and the fact that the injury she suffered while doing a vault ended her career as a gymnast, an injury that wasn't just ignored but glorified).
I am lucky enough to be able to stand and walk, but I have family members (my mother and my child) who are not so lucky. I saw them both struggle not so much with 'giving up' (a factor informed by other people's ideas about disability) but more with acceptance that their disabilities were likely to be long-lived and/or permanent, which can be a very difficult thing to come to terms with. But once they did, their quality of life improved dramatically with the help of mobility aids, leaving them both much less isolated, more independent and more able to get out and do the things they love!
Mobility aids truly make a tremendous positive impact, but can we also talk about the cost? For people who are able to walk at least a little they are rarely (if ever) subsidised or provided by healthcare services to my knowledge, which means they are cost prohibitive to so many people who would benefit greatly from them. We saved for months for a wheelchair and while it is wonderful and game-changing, I know that this isn't possible for everyone who needs it, and I really feel for people for whom a life-changing mobility aid is out of reach just because it's unaffordable.
My grandmother completely refused to ever sit on a wheelchair! And thus she was stuck in her (extremely nice and beautiful) older people home.
My husband's grandmother on the other hand went on several outings and even holidays, even to a foreign country
100% don't dismiss mobility aids!!! We are so blessed that they are available and more advanced then before
I wish videos like this were available when I was as diagnosed. It was easy for me to feel bad about needing help.
I was Ill for many years. It was unrecognized by doctors. Not having a mobility aid made me LESS active, not more. It kept me isolated in the house and not able to go out much of the time, but I could have gone to events if I could expend less energy by standing and walking.
I partially broke my spine with a pinched nerve recently and at first I wasn't able to walk at all. I always felt like no matter how much pain or how little mobility I had in my legs that I wasn't disabled enough. People would ask me why I was in a wheelchair judgmentally because they cannot see my fracture. Thank you for your channel, you give people with disabilities inspiration, hope and visibility
Your channel has helped me accept my diagnosis of fibromyalgia ( among many other issues) and made me realize its ok to not be as intense and active as everyone else. I just purchased my first walking cane and im so excited!! You make me feel like myself again as i realize that yes my body is changing and in other words failing me, but im able to cope and get through everyday with your videos
"wonky body"
I feel seen
Thank you darling Jessica ❤️
Getting a mobility aid for me means I refuse to give up. I wont stay home, I wont stop enjoying myself i WILL live my life, even if its with a wheelchair.
I recently started using a cane, and while I had not seen this video yet, hearing people say "if you're asking if you need it, you probably do" is a large part of why I finally started using it. It has made such a difference, especially with having to walk across my uni's campus many days. I had been hurting more and more lately, and while the pain is still there, it isn’t as bad as it would be
I'm not even disabled. But have a severe ankle sprain and can barely walk even with my brace. Decided after a week of debating to get a wheelchair, I felt like I didn't need it bad enough. I got it today, I smiled for the first time in like 10 days today. Realised that if you need it you need it, doesn't matter how 'much" you need it.
I've literally been grappling with this. I already follow and saw this title pop up and I cant wait to see
Same here.
I feel like if someone is telling you that using a wheelchair is giving up and you will only get worse, they don’t really believe you and think exercise is the answer
I wish I'd seen this video when I was younger. I resisted mobility aids for so many years when I needed them because I'd been conditioned to see them as 'bad'. I missed out on outings that I can now go to because I'm in a wheelchair and caused myself extra pain because I didn't use a walking stick. Like you say, using a walking aid is gaining something, not giving up. Thank you for this video and all you do for disability awareness.
I started using a cane a week ago so this was rather briliant timing :) without my cane, I can't enjoy 5 minute walk. without pain, but with the cane I definitely can walk a lot more and somehow even conserve energy? It is great
I love my cane, walker and shower chair. The freedom to shower and walk further and longer is wonderful. I have MS, POTS, and migraine. I was young like Jessica when I first got them and it is strange that it has bothered my husbands family so much. They will still see my walker and ask” do you really need this?” It also confuses my neighbors when one day I can walk okay and the next I am using a cane or a rolling walker. Disability is not linear.
jessica is so stylish
one thing that always makes me hesitate when I think about getting an aid (besides like.. all of the hassle of finding a good one and the fact i rarely leave the house anyway so is it worth the money?) is that I'm rarely feeling pain. even when i cant leave bed or walk around the house much, there's rarely pain involved but is instead pure fatigue. I'm always thankful to you for mentioning its not just for when you're in pain, or when you're out of energy, but also for when you're conserving energy, because it makes my desire for a mobility aid feel validated. (and if anyone makes a fuss I can send them your videos and maybe get them off my back xD)
❤️
Fatigue is challenging in a completely different way than pain! My friend and her mom have both, and sometimes it really isn't the pain that keeps them homebound. It's awful for anyone to go through.
Having a motorized wheelchair would open up my life so much. I don't know how you do things where you live, but in America, you have to be evaluated to see if you are disabled "enough". Next week I am being evaluated to see if I "qualify" for a motorized wheelchair.
I too am ambulatory, but have a condition called Erythromelalgia and arthritis, which makes walking extremely painful after a few short minutes. If I had a motorized chair, I could get so much more done around the house, weed the garden, AND I could go for walks around the block. Being stuck inside is just miserable.
You and your family are so sweet and smart. I always get excited when I see a new recording in my feed. Thank you!
Did you get your chair in the end? I hope you did
your tudor joke cracked me up
we shouldn't be insecure about things that could help yourselves i used to feel so embarrassed when my meds got bigger i feel like I failed and I wasn't trying enough but this was not true!! i hope everyone understand that the bigger priority is being okay even if we need some help
Well said! 🙂🧑🦯👩🦼🧑🦽💜
Omg this too, the number of people who can be like "oh if you start meds you will never stop" or "you will be worse after starting on meds" when life is already a pain or even a burden without :') Im so glad for you you went past that feeling !
@@Ombie_Art Yes! I take medication to improve my quality of life. If they didn't help, I wouldn't still be taking them.
Using a mobility scooter has helped so much with my POTS. My fear about about standing because I get dizzy and faint disappeared and I am a lot more relaxed going out. Though I wish it was better known wheelchairs/scooters are used for people with all sorts of conditions including heart problems and dysautonomia, not just because our legs might not work!
God I didn't know that that was something people actually think! Having an aid to help you move around and have a better quality of life is in no way giving up!!!
Using any kind of tool aids preventative maintenance ffs!
@@SonsOfLorgar sorry I'm sleep deprived and not quite sure what you mean?
And this applies to accessible parking to. I did not realise how much I needed it till I said I'd only use it when I absolutely need it... and almost always use it now.
I'm trying to get assessed with EDS (NHS waiting lists aside) and I'm facing the likelihood of getting a mobility aid within the next five years... it's a concept I'm struggling with a LOT, both with the aspects of "giving up" but also bring "visibly disabled"
It is what's best for you. After getting your mobility aid, you might find that you are able to go places that you have not been able to. Good luck.
I have been diagnosed with EDS and it is honestly life changing to actually start get help and proper meds instead of being told "It's just depression".
I have rented a couple wheelchairs for visiting museums and I actually enjoyed a museum for the first time I can remember instead of constantly in pain and needing to leave after only a couple hours.
Best of luck to you!
Getting my wheelchair changed my life! Even before I got to the state I'm in now my eds meant that days out were really painful and knocked me out for week after from exhaustion and since having my chair it only takes a day to recover at most which feels amazing! I did the classic googling of 'how to know if you need a wheelchair' and it felt very like my earlier googling of 'am I gay' and the answer to both is definitely if you're googling it then you already know the answer!
My annoyance with my cane comes from the fact that I am very clumsy and I trip on it all the time which just leads to more pain 😂 but ultimately it helps immensely day to day
True, my feet got tangled up in a cane and a walker I was always hunched over. And neither one helped.
I have POTS/EDS and fibromyalgia and i didnt feel like thats "enough" for a mobility aid but this video kinda helped me realize my Cane is just not enough so im hopefully able to get crutches soon :] thank you
This video is applicable to people everywhere. And when I mean people I mean every single human on the planet Earth. Because even if you were born being able to move around on your own someday that will change. Or at least hopefully you'll get old enough to where that is the problem. Thanks for addressing this Jessica.
The advice about realistic evaluation of things like cutting trips short or having aftereffects if you don't use it - really resonates. I use a scooter for grocery shopping because even though I definitely could walk with a cart, I would pay for walking on the concrete floor and bending to place items in the cart with a night of no sleep and 2-3 days of pain. So I use the scooter.
Absolutely not! Using mobility aids enables me to be more engaged in life. I love my rollator and my electric trike. Imagine needing eye glasses but refusing to wear them because it would be "giving up". That would be crazy!
Oh how wonderfully timed! Brought a stick less than three weeks ago and a wheelchair chair just two days ago! I’m so excited to be able to work towards getting some freedom and spoons back
I just needed to hear all of this. I have pots and I need a wheel chair. I've been having a hard time with it. Thank you love.
Thank you for this video Jessica.
I refused to use my walker because I'm not old dammit. I'm 66, one poorly replaced knee and the other looks rather like that kitchen sponge you threw away last week. I also have arthritis pretty much everywhere else too, especially my back, oh, and scoliosis.
The point of my story is that last week I did not have a ride to the clinic but I did have an appointment. Now the clinic is only two blocks away but that is too far for me to walk. So I bit the bullet and used my walker (it's been prescribed for several years). I was amazed at how well I did. I walked upright so didn't stress my back, I didn't put uneven pressure on my knees. It was a breeze. I'm not saying it didn't hurt; it still did, but no tears. And, I could make the trip back.
Use the damn mobility aid!
I am going to Easter dinner for the first time in 4 years. I was going to try and go without the wheelchair, but am going to take it. Thank you.
this is such an important video. I have never been able to understand the people who are against the use of mobility aids. i think the mobility aids should be encouraged. don't know why people connect using devices that help us live our life better to being lazy or "giving in to your body's disability". Like people do know their bodies and they know how much better they can feel and how much more they can accomplish with some aid.
my mother is more than 65 years old and she has trouble walking long distances (like walking around a park or even grocery shopping). usually i walk with her and either warn her of any sudden steps etc or hold her hand so she won't fall. And even though i have tried to reason with her that she can use a walking stick as she has trouble with her balance and falls over a bit more than usual (almost every time she goes out alone) but she has this idea that using a walking stick would make people look at her like she is old and frail and she would find it embarrassing. i know a lot of people associate the use of mobility aids with being "weak, ill or disabled" (and take it as a bad thing somehow) which is just ableism. i hope mobility aids can be made more normalized and the world could be made more accessible for every one.
I’m with you. I don’t understand how people wouldn’t want others to not be in pain or to be safe or to be able to do more. Who cares if they need some sort of aid?
It’s like you are describing my parents and my in laws. My dad is 82 and was unsteady on his feet but refused to use a cane. He fell badly 5 months ago and shattered a leg. He now has to use a walker all of the time and probably for the rest of his life. My mom- who is 77- had their bathrooms remodeled and took out the grab bars and shower bench in the remodel because “ it looks like old people live here”. My mother in law has bad knees and falls a lot but says she will never use a cane because she is afraid of what the neighbors will think. Is this an older generation way of thinking??? I have pain and autoimmune diseases and use a cane and shower chair and never cared what other people thought. For me it was like getting prescription glasses.
@@jenniferw1595 oh, your poor parents and in laws! All that added pain and stress.
I’m with you, who cares what other people think if it helps you.
-When we remodeled our bathroom we put bars in the shower figuring that my wife’s bad back will just get worse as she gets older and she will eventually need them. Never even crossed our minds how it will look to others.
Hi all. I have fibromyalgia, DDD and osteoarthritis in my spine. I bought a folding walking stick when I went on holiday with my folks a few years ago and even tho I was in immense pain, the stick in my bag was my dirty little secret. My conditions are getting worse and I'm now seriously considering next steps...wheels. terrified about judgements of others but I know I'd be able to walk the dog every day if I had the option of a mobility scooter or electric wheelchair. X
Almost cried as always watching your videos on disability haha, but this really helps feeling "legitimate", as a 22yo using a cane to not just pass out by standing up or walking 200m, it was and is still hard sometimes to accept it, but this helps a lot thanks (and i will definetly send this to all the people who are saying to me "IF YOU WANT IT YOU CAN DO IT" lmaoo) because your first part on the difference between abble and disabled bodies is really nicely explained ! And your life doing everything by sitting down : yes. That's my life too xD
The whole reason I felt comfortable getting a mobility aid was because Jessicas videos about finding an electric wheelchair and I will forever be grateful for that.
i wish i could exaplin this to my OH and family. You always have such a way with explaining things thank you for being the voice so many people need.
glasses are also mobility aids. Yes you can see without them and you can get around without them but certain tasks require the glasses and you can see more and get more thi gs done so it's similar to a different mobility aids. Yes you can manage without the mobility aid your using but it helps you do things more and in some cases you need it.
i love this, i have POTs and my main worry is ... am i a good mum because im not able to do the things most mums can do, its nice to see another mummy who struggles but is still a great mum ...thankyou
I ordered my first cane last week. Without your videos I would not have been ready to care for myself in that way.
I just wanted to tell you I just got a foldable cane and decorated it with glittery washi tapes and I'm so thrilled and happy to be able to walk at the end of a long day. Thanks. I've been coming back to your videos about disability since we couldn’t figure out what was wrong, and then watched them again after the EDS diagnosis and each time I felt down, and I feel so understood ❤
I used to be a cane user, and it was a life saver. I could walk for longer, and it helped with dealing with fatigue, plus, I sort of felt safer, having a cane for protection.
I don't need it nowadays, since my condition improved drastically, but honestly, I am glad it was there for me.
When I see people using mobility aids, I feel happy for them, for having such great tools for independence, and taking care of themselves.
May I show this to my doctor. See every doctor I have asked says this,and you said it better than I can.
My sister had a severe connective tissue disorder (polychondritis). When she found she could not get in and out of a regular bed any longer, she got a recliner that would help her get to a standing position and slept in that. For walking around the house, she had a walker and for going out, she had a wheelchair. But all of her mobility aids helped her to live the best she could. Without them, she would have been bed-bound the last five-six years of her life. Why would anyone think that something that helps you is giving up is beyond me.
Right? I’m with you, I don’t understand it either.
For me, not getting one was giving up - giving up going out, giving up working, giving up having fun and being outside in the sun. Now with a wheelchair, i can do alll of those things despite having fibromyalgia and CFS, z
It certainly does NOT. Work smarter, not harder. Happy to see this conversation out there! It's low key ableism and so many folks fight that inner voice because they don't want feel like they've given up.
I'm struggling so hard with adjusting to having to need a cane, let alone the chair when I do. Thank you for making this vid, I've been watching your content even before I lost mobility. You rock in helping spread awareness and advocating for everyone!!!
I need to show this to my sister so bad - she recently got a diagnosis of fibromyalgia but she won't accept getting herself a mobility aid or even borrowing my shower chair or adjustable walking stick because she 'used to be fine doing xyz' 😟 maybe hearing from someone who isn't her baby sibling will help?
My gosh, I wish I could send this video to my therapist. I use a walking cane after a very complicated leg injury. She insisted a very long time, I should get rid of it and my cane makes me look like an old lady (I am 29). Disregarding the fact that although I CAN walk without it, I have less pain with it and I can walk longer distances. THANK YOU for this video! Love your chanel very much.
I'm about to travel a long distance with my mobility aid, crutches, for the first time and while I'm freaking out about having to handle them alongside bags, TSA agents etc, I know they'll help me move around the airports and transportation so I don't waste all my energy on the traveling! I'm going to London for the first time to see a concert, I wanna be able to spare energy for the things that matter. I don't use them a lot and I can usually walk around town in my everyday life without a lot of trouble, but when I do need them they're INDISPENSABLE. Thanks for this video, Jessica, you're as lovely as always!
Getting a cane meant that I can walk without pain. And getting one that was extremely fashionable for me was essential so it didn't look like a medical device. I call my cane Gertrude or Gertie for short and I love walking around with her when my arthritis gets bad because I know she'll turn heads.
It's not giving up imo, it's accepting where you are in life in the moment and that you need help, nothing wrong with that, I'd probably hurt myself more trying to walk and push myself, I'm letting myself heal and just accepting this is what it is for now, and I'm glad to have the resources!
Perfectly timed! I'm awaiting delivery of my powerchair and this has been a gentle confidence boost that I'm doing the right thing 🥰
When I learned to use a walking stick I watched a video that said "better to walk 500 meters with a stick than 2 meters without" and I think about that all the time