I have ms (multiple sclerosis), spasticity, numbness and pain in both leg. I start to use a wheelchair to go shopping, it help me so much, I can enjoy the day, not just thinking "Damn It going to hurt like hell later..."
I am 68 years old and I am learning so much from your videos! No one escapes prejudice and intolerance in this world. Good and bad are simply a part of life. The best way to defeat negative people is to smile. You are a courageous young woman, and you make me smile. Thank you!
You speak so eloquently about this, it completely makes sense and I found it really validating to listen to someone talk about their experience which is so close to mine. I also have ME and use a manual chair 80% of the time and a power chair 20% of the time, but i used to be a little more mobile, so would walk short distances a you said you do, and even then people judged me because they couldn’t understand dynamic disability and why I might need a wheelchair some days, and other days did not. Always felt that pressure to explain myself and prove my illness, which was exhausting! Thanks for making this video, it was so interesting and informative ❤️❤️
I was so excited to get my wheelchair because I honestly thought I could get outside again and be able to go anywhere. Since having my chair I have been dismayed by the lack of accessibility. I can't even get from my house into our local park, just 5 minutes away, due to the state of the footpaths and roads, and all the people who park on the paths blocking the way. My chair is literally gathering dust! I can deal with negative comments but I can't deal with the lack of accessibility. Super informative video as per usual 👏
Oh this! Just earlier my challenge was trying to weave through the paths nearby on bin day, feels like a blummin' obstacle course sometimes. Thank you for watching!
oh my goodness! You are ABSOLUTELY NOT alone! I almost cried watching this video. I am a ambulatory wheelchair user myself and i'm still very new to it but like yourself I found it amazing as it helped me move more freely. It has been such a hard journey. I recently had a very very horrible ER visit where the doctors were very ableist (i also already suffer from mental illnesses, agoraphobia etc) and the way the doctor grilled me even after my partner was away from me about my use of a wheelchair (I'm plus sized) seems like its different kind of hell being overweight and in a wheelchair... I won't go into details as the memories are still vivid and i'm still working up the courage to go outside again since, (I have just not in the wheelchair) We need more education on these matters... I don't understand why disability is thought of such a black and white matter. There was a research paper that said 70% of chronic illnesses/disabilities were infact invisible. Why is there so much stigma around using mobility aids even with doctors themselves? I knew if I asked the GP I had at the time when I realized I needed a wheelchair they would of pushed back because of my weight because losing weight is more important than avoiding how much chronic pain, agony and energy I spend everyday in and how that limits me... (I also have ME/CFS)
Please I'm 19.5 St so I'm plus sized too and in a chair part time pls pls don't let anyone stop you been you, don't ever let anyone stop you using your chair. As for the disgusting behaviour of the Dr /nurse at er they should be ashamed of themselves pls pls put a complaint in writing to the hospital director/clinical director or patient services as it's clear the Dr needs to be spoken to about disability act and how to talk to disabled people.
Some years ago, when I found myself moving around my home by holding onto the walls and furniture, I realized that it was time for a mobility aid. I did my homework and got a pair of offset handled small base quad canes. They were a big help, but my 2 bad knees continued to get worse. Several years ago, I did my homework again and got a Nova Mini Mack rolling walker. That has been a great help to me. When shopping in a large store, I do need to use one of their mobility scooters to get around. When in medical places, if they need me to quickly get to another part of the building, they give me a ride in one of their wheelchairs, as I can't move fast with my rolling walker. I could have gotten a mobility scooter instead of a rollator, but I think that using the rollator will help prolong my walking life. It might even improve my condition a little. Also, my personal sports used to be walking, hiking, and biking. Using my rolling walker gives me a faint echo of the fun I used to have.😊 anyway, technically, I'm not a wheelchair user, but there are occasions when I need to use one or use a mobility scooter. Disabled people are like everyone else. Sometimes, we have bad days, too. When that happens, we may need to upgrade our mobility aids for a while. I can still get around with my 2 canes, but get around better with my Nova Mini Mack and with less pain, too. I had to use a non rolling walker during a recent hospital stay. It's the old 2 wheeled style. It was horrible and made more so because even on its lowest setting, it was too tall for me. I was eventually transferred to one of the nursing homes connected to the hospital, where I am continuing to receive treatment. Not long after I got here, I had a relative bring me my own rolling walker, so now I'm getting around better. There is an old saying: Never judge a book by its cover. That applies to disabilities too. There is no one set way for everyone with a particular disability to be. Variation is actually the norm, not the exception. And remember, not all disabilities are readily visible. Don't be quick to condemn someone who appears okay but has a handicapped license plate or placard. The DMV requires that you bring them a form filled out by your doctor before they give you either one. While it's true that some healthy people use the placards belonging to relatives, they can't use it forever, as the placards have to be periodically renewed. Guess that's all.😊
I have fibromyalgia and fatigue and my legs struggle when I walk and I'm fined it painful to stand for long I've been thinking of a wheelchair this video been a help has it's not a visible chronic illness makes me think like you say would be judge has can walk but not very far and not for very long
I'm so glad it was helpful, you might find this one useful too (ruclips.net/video/8oYKUOxUu-0/видео.html). I have ME/CFS rather than fibro but a lot of it applies to fatigue and pacing!
Kirsty this is my case to… I got a powerchair because the dags that i need a wheelchair my arms has no juice Either. If, take your time choosing. i did an expensive misstake first. Also check out all mobilityscooters avaliable❤️🤗
@Anna Eriksson thankyou I will keep looking I am in the stage of deciding what is best for me has my legs and my back is in some much pain and when I go to the doctors all he tells me is keep active and doing physio exercise I've told him I think a need to use a wheelchair has I'm so struggling with walking and he just keep tell me must keep active witch I do try I'm only a year in to this illness so still learning but just don't feel that get much support from the doc x
Thank you for sharing your experience! I've been living undiagnosed with a complex neurological illness for over 20 years. My health finally got to the point where I can't get out of the house without a chair. My PT pushed for me to get a wheelchair which was very validating. I'm still in the process of getting a power chair, but hearing your experience and advocacy makes me more confident this is the right choice for me. ❤
@Wheelsnoheels this is something I'd love to see Ur view on this topic. Pippa I am in Ur situation too I have nsd/ fibromyalgia copd and muscle wastage in both left limbs as well as other issues but I can walk for a couple of mins just like you, I'm so glad that people like you and wheelsnoheels do these videos to spread the word about these topics. To try to educate others that a wheelchair does NOT mean "paralysed" or "paraplegic" ❤❤❤❤❤
Great video. I've recently started to use a chair . I have severe lower back pain due to Ankylosing Spondilitis and can barely walk now, though I can use my legs. I struggled with accepting I needed one, I had internalized so much ableism. Best choice I've made. I can go into town or to the coast with my wife for hours now with no pain , I have my freedom back.
I have POTS and EDS, but the main reason I use a wheelchair is because of an L5 incomplete spinal cord injury I sustained almost 9 years ago (no actual broken bones, but significant nerve pressure on my spinal cord that still frustratingly acts like it). I feel like I'm in an even rarer subset of ambulatory wheelies, because I can walk as far as I want on uneven surfaces without any issues (if uphill is involved, I might have to stop to catch my breath, but I'll be fine other than that), but on a smooth surface (like a sidewalk), my max is about 1/2 block before my left knee starts giving out on me (from the spinal nerve pressure). Thankfully my dr. has been great throughout this whole process, and I've found workarounds for some things, but there are times where my chair is my only way to get around even the house (usually I'm fine walking around the house without any aids).
Man the response of getting a wheelchair from family is shocking the persecution is unheard of that you get. If it was a stranger not a problem because you can get away unlike disfuncanel family where your stuck. But if your lucky your family will support and help and understand.
Yep. I live alone, 1000 miles from the rest of my immediate family, and when I was getting ready to get my first chair, my mom had the audacity to insist that she would be the one who got to choose what kind of chair I would be getting (I got the exact kind that she tried to tell me that I wouldn't be allowed to get); she also complains bitterly whenever I'm visiting and I need to bring my chair somewhere where she thinks I shouldn't need it (bringing my chair usually means we have to take a different vehicle - it's a manual chair, so we don't have to worry about the cumbersomeness of a power chair) - she thinks that she can decide when I do and don't need it, and gets mad when I don't follow that; after 7 years, she still hasn't accepted that she can't control what my body decides to dish out to me on any particular day, or even hour. Last month when I flew home, my sister was giving me a ride to the airport, and she was driving in such a way that she was literally throwing my chair around in the back of her car (yes, the brakes were on, but they only do so much going around turns when the chair is turned sideways) and refusing to be more careful, despite me asking her nicely - her justification: "It takes more of a beating than that when you hop off curbs!", which is SOOO not true; my sister is now forbidden from giving my wheelchair a ride ever again. I actually had to do some maintenance on my chair when I got to the airport because of it. She has even had the audacity to claim that the wheelchair isn't even mine (it absolutely is mine, regardless of where the money to pay for it ultimately came from), that I wasn't allowed to get another one when the time came (I absolutely will be - 368 days to go!), and that she can pile whatever she wants on top of my chair without permission and gets really, really mad when I tell her she can't, claiming "You [meaning me] weigh more than [item she wants to/has put on my chair]! Get over it!" or "If you [meaning me] can do it, so can I!" She doesn't care that it's a $5600 custom built FRAGILE piece of equipment, and that popping the cushion means 2 months and $400-$600 to replace. Even one of my aunts (the only aunt that I see on any kind of even remotely regular basis) has gotten worse about it - the last time I rode in the car with her (I did not have my chair with me because what we had planned to do didn't require me to bring it (my chair is my only mobility aid - crutches/walker/etc. don't really help me: on a normal day, I'm perfectly fine until suddenly a switch flips that makes me need my chair - there's no in-between, and I know at what point that switch normally flips)), we stopped in at a store so I could return something, and I told her as we pulled into the store's large parking lot that I had my handicapped tag with me and so she could park in a handicapped spot (I can't remember whether I actually asked her directly to park in a handicapped spot or not), but she flat out refused to do it (there were several open ones) and instead insisted on parking halfway across the parking lot - I barely made it into the store, and almost didn't make it back to the car, because I had to wait in line inside for a bit and there was nowhere to sit down except the floor (sitting down for however long it takes is the only way to give my system a reset to allow me to walk my max distance again after I've already walked my max), which I was not going to do in mid-January (we get real winter, so the floor was all wet and dirty).
I look normal when I stand and walk. My wife is the only who sees the pain I'm in afterwards. It can be so bad that I can't sleep, even with the pain protocol that I'm on. It can take days to recover. After four spine surgeries and a lot of pain due to stubbornness, I eventually got a rollator, it made going to the store "manageable". I could sit when I needed to. Eventually the rollator wasn't enough and I was back to days of recovery. My wife pushed me to get an electric wheelchair. I resisted, but now that I have one, I know I should have done it earlier. Don't let your ability to walk keep you from doing what you need. The people who have a problem with me using a wheelchair haven't had to pay the price of not having one.
Oh the looks I get when, in my manual wheelchair, I choose to stand and walk into the disabled toilet (I can't self propel far so it's actually easier). Usually old ladies who may or may not need to use said disabled toilet... I use my manual wheelchair in the exact same way as you. I rarely use it to known places where we park outside (eg GP or local cafe) but longer distances, queues or unknown places it's a must.
I completely understand xx I cant leave my house with out chair even though my legs work.. because of heart failure and erythromelalgia/ eds etc.. swelling from heart failure is horrific.. I constantly get stuck places because I can’t not take my chair.. Ive even been trapped in london before 🙈 or had to roll ( power chair) 5 miles home in a storm because there are no taxis.. lack of accessibility is horrific xx
@@LifeOfPippa i really hope so.. Its so hard because my daughter also has mobility problems.. she is more like you and only takes her chair if she has too, but because of her issues, she can’t wheel herself, so if we don’t have a third person its hard.. going to london this weekend and she can’t take her chair because I literally can’t be without mine, and already scared incase I can’t find seating for her 🙈 we don’t go anywhere very often, but its comic con and she loves it x
@@jenniandlucy0115 can you get a personal assistant for your daughter? Ask social work. They could go with you to things like comic con (if you can pay the extra hours etc)
@@escott696 Ive looked into this but we are both autistic and i struggled to understand how to employ a pa and noone really helps. We got told we could have funding for it, but noone would help with the process.. the la sucks x
Very good video. Thanks. I'm finding that I'm having to use my walking stick a lot more due to a nerve imbalance. I'm 52, but look younger & get comments when using the disabled seat on a bus like "Have you stolen your grandmother's walking stick to use that space?" My late best friend though, was given an NHS walking stick to use during her cancer treatment, yet refused to use it because she 'didn't feel disabled enough!' Ironically, a wheelchair arrived at her flat a week after she passed away. She still probably wouldn't have used it though. Keep up the excellent content. Sending Spoonie Hugs and Love 🥄🤗💜
Thank you for sharing your experience! It's so important to hear people's stories so it can influence the way we view others and the world, hopefully so the education can create more compassion and empathy.
I have hEDS and I am an ambulatory wheelchair user as well. So I always take crutches with me in case I get up and walk. This seems to be understandable by other people. I am sometimes asked whether I have Multiple Sclerosis - that is a disease most ppl know- so I answer that no, but I have a disease which makes similar symptoms.
Well done, you smashed it right out of the park, so many people are extremely judgemental with no knowledge or understanding. Part time ambulatory users need to be accepted without explanation.
I started using a cane years ago Then it progressed to a walker eventually I will chair most of the time the bottom parts of my legs and feet stay so my Nam
Thank you very much for doing this particular segment. Everything you said definitely does apply to me and you put it in a way that I had not thought to express or explain. I have a similar situation, but I have a degenerative spinal condition and I have several other conditions, we won’t go into the Long medical, but I also, use the power chair most days at least at some part of the day. I can stand up, I can walk,however; I can’t walk very far before I start falling down. Again thank you very much. This was extremely helpful to me.
Loved your video, I have BVH bilateral vestibular hypofunction. So I’ve very little balance, I fall easily and break bones. I’ve been using a powered wheelchair at home and sometimes going out with trekking poles but this is now too risky. I’ve just bought a smaller fold up powered chair to go out in and I’m terrified. I feel it’s the finally part of accepting my disability and not pretending I can walk safely. Feel I’ve taken too long to get to this point, which was very foolish. I’m 75 so don’t need to go out yet but will try and get someone with me first time. It’s so hard.
I just got my wheelchair last month and love it! Like you, I wasn’t able to leave the house often, now I can leave the house maybe once a week. Recently I have dealt with terrible muscle spasms in my legs and back when I walk too far, so the wheelchair has kind of become a must. I’m definitely not sorry I bought one! I haven’t really gotten out of the wheelchair and walked out in public. I’ve had a few people maybe stare when I get out of the car and into the chair. Overall I’ve been pleasantly surprised at how kind and considerate people have treated me as a young disabled person.❤️
Ahh that's so good to hear! It's of course important to acknowledge the struggles and stigma but I so wish we heard more of the positive and compassionate ones like these too!
Thank you Stacey, I’m so glad you did post this video and it’s excellent timing! Just got an electric wheelchair but need to practice with it before venturing out into the wilds of our rural village footpaths! It is not easy but like you, I think it will help with managing my energy envelope. I mentioned why I was thinking of getting one to a physio and OT and I don’t think they were really aware of how it can help people with energy limiting conditions and dynamic disabilities but they were open to it, so I hope attitudes will change for the better. It takes a lot of energy to deal with unwelcome attention! Articulate and informative video as always! 😀
Thank you for watching! Made me giggle that you called me Stacey, I get that a lot 😆 So pleased you have something of your own, hope you adjust as smoothly as poss and here's to plenty of little adventures!
Ciaooo sono contento per te ok 👌👍 grazie per aver il piacere di parlare con te ti saluto ai un ❤cuore grande ti saluto Davide scusa nn conosco l inglese ma sono co te yes
Hi Pippa, At 73, I'm able to walk, but to do housework, especially washing dishes I have to sit down. Any 4wheeled chair would do any advice, please. Thanks Josie
I am thinking of getting a scooter i use a walking stick, i have me/fibro and spinal stenosis in my lower back so i struggle to walk far or stand for long ,i also have a lot of payback with fatigue..but i know there will be judgement,im 43 but have young children
It's pronounced "Am-bu-lay-tory" but don't stress you did well. I have lived this way on and off over the past 20 years. I'm Looking at getting a new wheel/power chair once again for the reasons you have mentioned, to reduce fatigue and other effects of my illness. I wanted to ask, if you had a chance to get a new w/c which one would you look for and why? Great video
Gahhh, I knew it! Thank you! I don't have any specific brands in mind really but I'd probably invest in one with a higher back and a better battery life, but still portable or foldable. I quite like the look of some of the AXUS ones but haven't done enough research yet!
![Seungmin "그렇게, 천천히, 우리(As we are)" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/kAzmhLHePqU/mqdefault.jpg)
I have ms (multiple sclerosis), spasticity, numbness and pain in both leg. I start to use a wheelchair to go shopping, it help me so much, I can enjoy the day, not just thinking "Damn It going to hurt like hell later..."
So true, really glad you have something that makes life a little easier!
I am 68 years old and I am learning so much from your videos! No one escapes prejudice and intolerance in this world. Good and bad are simply a part of life. The best way to defeat negative people is to smile. You are a courageous young woman, and you make me smile. Thank you!
Thank you so much for the kind words, you made my day!
You speak so eloquently about this, it completely makes sense and I found it really validating to listen to someone talk about their experience which is so close to mine. I also have ME and use a manual chair 80% of the time and a power chair 20% of the time, but i used to be a little more mobile, so would walk short distances a you said you do, and even then people judged me because they couldn’t understand dynamic disability and why I might need a wheelchair some days, and other days did not. Always felt that pressure to explain myself and prove my illness, which was exhausting! Thanks for making this video, it was so interesting and informative ❤️❤️
Thank you so much for watching! Fingers crossed there's more understanding and empathy to come, hey?
I was so excited to get my wheelchair because I honestly thought I could get outside again and be able to go anywhere. Since having my chair I have been dismayed by the lack of accessibility. I can't even get from my house into our local park, just 5 minutes away, due to the state of the footpaths and roads, and all the people who park on the paths blocking the way. My chair is literally gathering dust! I can deal with negative comments but I can't deal with the lack of accessibility.
Super informative video as per usual 👏
Oh this! Just earlier my challenge was trying to weave through the paths nearby on bin day, feels like a blummin' obstacle course sometimes. Thank you for watching!
This is my experience too.
Maybe speak to the council about accessibility, so annoying.
oh my goodness! You are ABSOLUTELY NOT alone! I almost cried watching this video. I am a ambulatory wheelchair user myself and i'm still very new to it but like yourself I found it amazing as it helped me move more freely. It has been such a hard journey. I recently had a very very horrible ER visit where the doctors were very ableist (i also already suffer from mental illnesses, agoraphobia etc) and the way the doctor grilled me even after my partner was away from me about my use of a wheelchair (I'm plus sized) seems like its different kind of hell being overweight and in a wheelchair... I won't go into details as the memories are still vivid and i'm still working up the courage to go outside again since, (I have just not in the wheelchair)
We need more education on these matters... I don't understand why disability is thought of such a black and white matter. There was a research paper that said 70% of chronic illnesses/disabilities were infact invisible. Why is there so much stigma around using mobility aids even with doctors themselves? I knew if I asked the GP I had at the time when I realized I needed a wheelchair they would of pushed back because of my weight because losing weight is more important than avoiding how much chronic pain, agony and energy I spend everyday in and how that limits me... (I also have ME/CFS)
Please I'm 19.5 St so I'm plus sized too and in a chair part time pls pls don't let anyone stop you been you, don't ever let anyone stop you using your chair. As for the disgusting behaviour of the Dr /nurse at er they should be ashamed of themselves pls pls put a complaint in writing to the hospital director/clinical director or patient services as it's clear the Dr needs to be spoken to about disability act and how to talk to disabled people.
Some years ago, when I found myself moving around my home by holding onto the walls and furniture, I realized that it was time for a mobility aid. I did my homework and got a pair of offset handled small base quad canes. They were a big help, but my 2 bad knees continued to get worse. Several years ago, I did my homework again and got a Nova Mini Mack rolling walker. That has been a great help to me. When shopping in a large store, I do need to use one of their mobility scooters to get around. When in medical places, if they need me to quickly get to another part of the building, they give me a ride in one of their wheelchairs, as I can't move fast with my rolling walker. I could have gotten a mobility scooter instead of a rollator, but I think that using the rollator will help prolong my walking life. It might even improve my condition a little. Also, my personal sports used to be walking, hiking, and biking. Using my rolling walker gives me a faint echo of the fun I used to have.😊 anyway, technically, I'm not a wheelchair user, but there are occasions when I need to use one or use a mobility scooter. Disabled people are like everyone else. Sometimes, we have bad days, too. When that happens, we may need to upgrade our mobility aids for a while. I can still get around with my 2 canes, but get around better with my Nova Mini Mack and with less pain, too. I had to use a non rolling walker during a recent hospital stay. It's the old 2 wheeled style. It was horrible and made more so because even on its lowest setting, it was too tall for me. I was eventually transferred to one of the nursing homes connected to the hospital, where I am continuing to receive treatment. Not long after I got here, I had a relative bring me my own rolling walker, so now I'm getting around better. There is an old saying: Never judge a book by its cover. That applies to disabilities too. There is no one set way for everyone with a particular disability to be. Variation is actually the norm, not the exception. And remember, not all disabilities are readily visible. Don't be quick to condemn someone who appears okay but has a handicapped license plate or placard. The DMV requires that you bring them a form filled out by your doctor before they give you either one. While it's true that some healthy people use the placards belonging to relatives, they can't use it forever, as the placards have to be periodically renewed. Guess that's all.😊
I have fibromyalgia and fatigue and my legs struggle when I walk and I'm fined it painful to stand for long I've been thinking of a wheelchair this video been a help has it's not a visible chronic illness makes me think like you say would be judge has can walk but not very far and not for very long
I'm so glad it was helpful, you might find this one useful too (ruclips.net/video/8oYKUOxUu-0/видео.html). I have ME/CFS rather than fibro but a lot of it applies to fatigue and pacing!
Kirsty this is my case to…
I got a powerchair because the dags that i need a wheelchair my arms has no juice Either.
If, take your time choosing.
i did an expensive misstake first.
Also check out all mobilityscooters avaliable❤️🤗
@Anna Eriksson thankyou I will keep looking I am in the stage of deciding what is best for me has my legs and my back is in some much pain and when I go to the doctors all he tells me is keep active and doing physio exercise I've told him I think a need to use a wheelchair has I'm so struggling with walking and he just keep tell me must keep active witch I do try I'm only a year in to this illness so still learning but just don't feel that get much support from the doc x
Thank you for sharing your experience! I've been living undiagnosed with a complex neurological illness for over 20 years. My health finally got to the point where I can't get out of the house without a chair. My PT pushed for me to get a wheelchair which was very validating. I'm still in the process of getting a power chair, but hearing your experience and advocacy makes me more confident this is the right choice for me. ❤
@Wheelsnoheels this is something I'd love to see Ur view on this topic. Pippa I am in Ur situation too I have nsd/ fibromyalgia copd and muscle wastage in both left limbs as well as other issues but I can walk for a couple of mins just like you, I'm so glad that people like you and wheelsnoheels do these videos to spread the word about these topics. To try to educate others that a wheelchair does NOT mean "paralysed" or "paraplegic" ❤❤❤❤❤
This is the best explanation of post-exertional malaise I've heard. Thank you for sharing! Hope more people learn about ME/CFS.
Thank you so much Steph!
Great video. I've recently started to use a chair . I have severe lower back pain due to Ankylosing Spondilitis and can barely walk now, though I can use my legs.
I struggled with accepting I needed one, I had internalized so much ableism. Best choice I've made. I can go into town or to the coast with my wife for hours now with no pain , I have my freedom back.
I have POTS and EDS, but the main reason I use a wheelchair is because of an L5 incomplete spinal cord injury I sustained almost 9 years ago (no actual broken bones, but significant nerve pressure on my spinal cord that still frustratingly acts like it). I feel like I'm in an even rarer subset of ambulatory wheelies, because I can walk as far as I want on uneven surfaces without any issues (if uphill is involved, I might have to stop to catch my breath, but I'll be fine other than that), but on a smooth surface (like a sidewalk), my max is about 1/2 block before my left knee starts giving out on me (from the spinal nerve pressure). Thankfully my dr. has been great throughout this whole process, and I've found workarounds for some things, but there are times where my chair is my only way to get around even the house (usually I'm fine walking around the house without any aids).
Man the response of getting a wheelchair from family is shocking the persecution is unheard of that you get. If it was a stranger not a problem because you can get away unlike disfuncanel family where your stuck. But if your lucky your family will support and help and understand.
Yep. I live alone, 1000 miles from the rest of my immediate family, and when I was getting ready to get my first chair, my mom had the audacity to insist that she would be the one who got to choose what kind of chair I would be getting (I got the exact kind that she tried to tell me that I wouldn't be allowed to get); she also complains bitterly whenever I'm visiting and I need to bring my chair somewhere where she thinks I shouldn't need it (bringing my chair usually means we have to take a different vehicle - it's a manual chair, so we don't have to worry about the cumbersomeness of a power chair) - she thinks that she can decide when I do and don't need it, and gets mad when I don't follow that; after 7 years, she still hasn't accepted that she can't control what my body decides to dish out to me on any particular day, or even hour.
Last month when I flew home, my sister was giving me a ride to the airport, and she was driving in such a way that she was literally throwing my chair around in the back of her car (yes, the brakes were on, but they only do so much going around turns when the chair is turned sideways) and refusing to be more careful, despite me asking her nicely - her justification: "It takes more of a beating than that when you hop off curbs!", which is SOOO not true; my sister is now forbidden from giving my wheelchair a ride ever again. I actually had to do some maintenance on my chair when I got to the airport because of it. She has even had the audacity to claim that the wheelchair isn't even mine (it absolutely is mine, regardless of where the money to pay for it ultimately came from), that I wasn't allowed to get another one when the time came (I absolutely will be - 368 days to go!), and that she can pile whatever she wants on top of my chair without permission and gets really, really mad when I tell her she can't, claiming "You [meaning me] weigh more than [item she wants to/has put on my chair]! Get over it!" or "If you [meaning me] can do it, so can I!" She doesn't care that it's a $5600 custom built FRAGILE piece of equipment, and that popping the cushion means 2 months and $400-$600 to replace.
Even one of my aunts (the only aunt that I see on any kind of even remotely regular basis) has gotten worse about it - the last time I rode in the car with her (I did not have my chair with me because what we had planned to do didn't require me to bring it (my chair is my only mobility aid - crutches/walker/etc. don't really help me: on a normal day, I'm perfectly fine until suddenly a switch flips that makes me need my chair - there's no in-between, and I know at what point that switch normally flips)), we stopped in at a store so I could return something, and I told her as we pulled into the store's large parking lot that I had my handicapped tag with me and so she could park in a handicapped spot (I can't remember whether I actually asked her directly to park in a handicapped spot or not), but she flat out refused to do it (there were several open ones) and instead insisted on parking halfway across the parking lot - I barely made it into the store, and almost didn't make it back to the car, because I had to wait in line inside for a bit and there was nowhere to sit down except the floor (sitting down for however long it takes is the only way to give my system a reset to allow me to walk my max distance again after I've already walked my max), which I was not going to do in mid-January (we get real winter, so the floor was all wet and dirty).
I look normal when I stand and walk. My wife is the only who sees the pain I'm in afterwards. It can be so bad that I can't sleep, even with the pain protocol that I'm on. It can take days to recover. After four spine surgeries and a lot of pain due to stubbornness, I eventually got a rollator, it made going to the store "manageable". I could sit when I needed to. Eventually the rollator wasn't enough and I was back to days of recovery. My wife pushed me to get an electric wheelchair. I resisted, but now that I have one, I know I should have done it earlier. Don't let your ability to walk keep you from doing what you need. The people who have a problem with me using a wheelchair haven't had to pay the price of not having one.
Oh the looks I get when, in my manual wheelchair, I choose to stand and walk into the disabled toilet (I can't self propel far so it's actually easier). Usually old ladies who may or may not need to use said disabled toilet...
I use my manual wheelchair in the exact same way as you. I rarely use it to known places where we park outside (eg GP or local cafe) but longer distances, queues or unknown places it's a must.
Can definitely relate to the toilet thing, if it's a small space then sometimes even with my power-chair it's easier to just get out and walk in!
I completely understand xx
I cant leave my house with out chair even though my legs work.. because of heart failure and erythromelalgia/ eds etc.. swelling from heart failure is horrific.. I constantly get stuck places because I can’t not take my chair.. Ive even been trapped in london before 🙈 or had to roll ( power chair) 5 miles home in a storm because there are no taxis.. lack of accessibility is horrific xx
Everything crossed we see big improvements in access in years to come!
@@LifeOfPippa i really hope so.. Its so hard because my daughter also has mobility problems.. she is more like you and only takes her chair if she has too, but because of her issues, she can’t wheel herself, so if we don’t have a third person its hard.. going to london this weekend and she can’t take her chair because I literally can’t be without mine, and already scared incase I can’t find seating for her 🙈 we don’t go anywhere very often, but its comic con and she loves it x
@@jenniandlucy0115 can you get a personal assistant for your daughter? Ask social work. They could go with you to things like comic con (if you can pay the extra hours etc)
@@escott696 Ive looked into this but we are both autistic and i struggled to understand how to employ a pa and noone really helps. We got told we could have funding for it, but noone would help with the process.. the la sucks x
So sorry for your inaccessible experience
Very good video. Thanks. I'm finding that I'm having to use my walking stick a lot more due to a nerve imbalance. I'm 52, but look younger & get comments when using the disabled seat on a bus like "Have you stolen your grandmother's walking stick to use that space?" My late best friend though, was given an NHS walking stick to use during her cancer treatment, yet refused to use it because she 'didn't feel disabled enough!' Ironically, a wheelchair arrived at her flat a week after she passed away. She still probably wouldn't have used it though. Keep up the excellent content. Sending Spoonie Hugs and Love 🥄🤗💜
Thank you for sharing your experience! It's so important to hear people's stories so it can influence the way we view others and the world, hopefully so the education can create more compassion and empathy.
Thank you for this video!
Incredibly articulated. You are not alone in your concerns.
All the best mate!🇦🇺
I have hEDS and I am an ambulatory wheelchair user as well. So I always take crutches with me in case I get up and walk. This seems to be understandable by other people. I am sometimes asked whether I have
Multiple Sclerosis - that is a disease most ppl know- so I answer that no, but I have a disease which makes similar symptoms.
Well done, you smashed it right out of the park, so many people are extremely judgemental with no knowledge or understanding. Part time ambulatory users need to be accepted without explanation.
Thank you!
thank you so much for spreading awareness you are so helpful
I have hEDS and I’m looking at getting a power chair, so I can go further and travel more.
I started using a cane years ago Then it progressed to a walker eventually I will chair most of the time the bottom parts of my legs and feet stay so my Nam
I like what you’re talking about the same kind of problems
I have fibromyaga and pots and i use a wheelchair when i go out
Thank you very much for doing this particular segment. Everything you said definitely does apply to me and you put it in a way that I had not thought to express or explain. I have a similar situation, but I have a degenerative spinal condition and I have several other conditions, we won’t go into the Long medical, but I also, use the power chair most days at least at some part of the day. I can stand up, I can walk,however; I can’t walk very far before I start falling down. Again thank you very much. This was extremely helpful to me.
Loved your video, I have BVH bilateral vestibular hypofunction. So I’ve very little balance, I fall easily and break bones. I’ve been using a powered wheelchair at home and sometimes going out with trekking poles but this is now too risky. I’ve just bought a smaller fold up powered chair to go out in and I’m terrified. I feel it’s the finally part of accepting my disability and not pretending I can walk safely. Feel I’ve taken too long to get to this point, which was very foolish. I’m 75 so don’t need to go out yet but will try and get someone with me first time. It’s so hard.
I just got my wheelchair last month and love it! Like you, I wasn’t able to leave the house often, now I can leave the house maybe once a week. Recently I have dealt with terrible muscle spasms in my legs and back when I walk too far, so the wheelchair has kind of become a must. I’m definitely not sorry I bought one!
I haven’t really gotten out of the wheelchair and walked out in public. I’ve had a few people maybe stare when I get out of the car and into the chair. Overall I’ve been pleasantly surprised at how kind and considerate people have treated me as a young disabled person.❤️
Ahh that's so good to hear! It's of course important to acknowledge the struggles and stigma but I so wish we heard more of the positive and compassionate ones like these too!
❤ thanks for the video,very informative,i am only at the walker stage ,
Thank you so much for such an informative video Pippa 😊x
Thank you Stacey, I’m so glad you did post this video and it’s excellent timing! Just got an electric wheelchair but need to practice with it before venturing out into the wilds of our rural village footpaths! It is not easy but like you, I think it will help with managing my energy envelope. I mentioned why I was thinking of getting one to a physio and OT and I don’t think they were really aware of how it can help people with energy limiting conditions and dynamic disabilities but they were open to it, so I hope attitudes will change for the better. It takes a lot of energy to deal with unwelcome attention! Articulate and informative video as always! 😀
Thank you for watching! Made me giggle that you called me Stacey, I get that a lot 😆 So pleased you have something of your own, hope you adjust as smoothly as poss and here's to plenty of little adventures!
@@LifeOfPippa Good grief Pippa, I'm so sorry about that! Obviously more tired out than I thought!
@@jenniferbennett2781 Hahah no worries, definitely been there! Surprised I don't forget my own name sometimes knowing me!
Ciaooo sono contento per te ok 👌👍 grazie per aver il piacere di parlare con te ti saluto ai un ❤cuore grande ti saluto Davide scusa nn conosco l inglese ma sono co te yes
La carozzina elettrica spero che mi ascoltano ok ciaooo
Hi Pippa, At 73, I'm able to walk, but to do housework, especially washing dishes I have to sit down. Any 4wheeled chair would do any advice, please. Thanks Josie
Im a 42 msle. i have CP and i get this alot. i use a walker but i walk indepednt at home. lots of imposter syndrom shame
I am thinking of getting a scooter i use a walking stick, i have me/fibro and spinal stenosis in my lower back so i struggle to walk far or stand for long ,i also have a lot of payback with fatigue..but i know there will be judgement,im 43 but have young children
It's pronounced "Am-bu-lay-tory" but don't stress you did well. I have lived this way on and off over the past 20 years. I'm Looking at getting a new wheel/power chair once again for the reasons you have mentioned, to reduce fatigue and other effects of my illness.
I wanted to ask, if you had a chance to get a new w/c which one would you look for and why?
Great video
Gahhh, I knew it! Thank you! I don't have any specific brands in mind really but I'd probably invest in one with a higher back and a better battery life, but still portable or foldable. I quite like the look of some of the AXUS ones but haven't done enough research yet!
I've heard "ambulatory" pronounced differently in different countries - here in the U.S., it's pronounced am-byoo-luh-toh-ree.
I've heard "ambulatory" pronounced differently in different countries - here in the U.S., it's am-byoo-luh-toh-ree.
👍👍👍👀👀👀🦽🦽🦽