WHAT IS AN AMBULATORY WHEELCHAIR USER? USING MOBILITY AIDS WITH CHRONIC ILLNESS - LIFE OF PIPPA

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Can we talk about being an Ambulatory Wheelchair User today? I was going to abandon this video and not bother publishing as I left it a little late, but after finding out it's #InternationalWheelchairDay I decided to go for it!
After I became ill, I put off using a wheelchair for a long time. I thought that they were only ‘allowed’ in certain cases and for certain people, and they’ve been portrayed so negatively in the media in the past that I thought using mobility aids should only be a last-resort, a worst case scenario. I couldn’t have been more wrong.
Using my wheelchair has given me my life back. Chronic illness made my world smaller, but my mobility aids have made it much bigger than it ever could have been otherwise. My wheelchair allows me to do more of the things I love, with less detriment to my health. Having that realisation has been so empowering.
But here’s the thing. I don’t use a wheelchair every time I leave the house. I can still walk and stand for up to a certain length of time, and I can still move my legs freely. My mobility aids are a tool that I use to enhance my life, when and how I choose to do so. And for me, that’s the essence of being an ambulatory wheelchair user. I use mobility aids sometimes, but not all the time. But y’know what? I’m still disabled/chronically ill, irrespective of whether or not I’m using mobility aids on that particular occasion.
In this video I share some of my experiences of being an ambulatory wheelchair user, alongside the debacle that’s come about partially in response to the wonderful Kate Stanforth's recent performance on The Last Leg. There’s also a bit of chatter about the impact of mobility aids on post-exertional malaise, the sometimes surprising reactions from other disabled people, and the changes I’d most like to see... Are you an ambulatory wheelchair user? What do you wish people knew?
RELATED POSTS AND VIDEOS:
Mobility Aids & ME/CFS: • MOBILITY AIDS AND ME/C...
Using A Wheelchair Has Helped Me To Walk: www.lifeofpippa.co.uk/2021/09...
Powerchair FAQs: www.lifeofpippa.co.uk/2019/10...
Using Mobility Aids With An Invisible Illness: • USING MOBILITY AIDS WI...
How To Choose The Best Mobility Aids: www.lifeofpippa.co.uk/2020/12...
My Chronic Illness Story: www.lifeofpippa.co.uk/2019/11...
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SHOP MY BOOKS AND EBOOKS: tinyurl.com/ybn7a832
MY TEDx TALK: www.youtube.com/watch?v=7j7JR....
BLOG: www.lifeofpippa.co.uk
CONTACT: lifeofpippablog@gmail.com
FACEBOOK: tinyurl.com/y8mgnb9a
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Hello! My name is Pippa Stacey and I’m a disabled writer, presenter, and communications consultant based in York. I enjoy theatre, books, and fundraising, and can most often be found wearing some form of pyjamas and drinking all the tea.
I acquired my chronic illness as a young adult and struggle daily with the challenges of living my best life alongside managing a debilitating health condition. However, I’ve finally learned that I don’t have to ‘overcome’ or ‘defy’ my illness in order to be successful, and there’s truly nobody’s path to follow but your own.
You can find out more by visiting www.lifeofpippa.co.uk, and subscribe to see videos about working, travelling, and learning to make the most of life alongside my chronic illness. Thank you so much for being here!
SHOP MY BOOKS AND EBOOKS: tinyurl.com/ybn7a832
MY TEDx TALK: www.youtube.com/watch?v=7j7JR....
BLOG: www.lifeofpippa.co.uk
CONTACT: lifeofpippablog@gmail.com
FACEBOOK: tinyurl.com/y8mgnb9a
TWITTER: tinyurl.com/yb46swvj
INSTAGRAM: tinyurl.com/ydxvl97z
GOODREADS: tinyurl.com/y8npna28
~
Hello! My name is Pippa Stacey and I’m a disabled writer, presenter, and communications consultant based in York. I enjoy theatre, books, and fundraising, and can most often be found wearing some form of pyjamas and drinking all the tea.
I acquired my chronic illness as a young adult and struggle daily with the challenges of living my best life alongside managing a debilitating health condition. However, I’ve finally learned that I don’t have to ‘overcome’ or ‘defy’ my illness in order to be successful, and there’s truly nobody’s path to follow but your own.
You can find out more by visiting www.lifeofpippa.co.uk, and subscribe to see videos about accessible travel, lifestyle, and work, as well as learning to make the most of life alongside my chronic illness. Thank you so much for being here!

Опубликовано:

28 фев 2023

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Комментарии : 57

@meleelap6999 Год назад

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..."

@LifeOfPippa Год назад

So true, really glad you have something that makes life a little easier!

@Questor-ky2fv Месяц назад

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.😊

@marydotjpeg 7 месяцев назад

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)

@rachelstewart5044 9 дней назад

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.

@kimoberholtzer8198 8 месяцев назад

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!

@LifeOfPippa 8 месяцев назад

Thank you so much for the kind words, you made my day!

@zoepollock7010 Год назад

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 👏

@LifeOfPippa Год назад

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!

@frentbow Год назад

This is my experience too.

@Moonbeamglider 2 месяца назад

Maybe speak to the council about accessibility, so annoying.

@kirstyjackson1852 Год назад

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

@LifeOfPippa Год назад

I'm so glad it was helpful, you might find this one useful too (ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-8oYKUOxUu-0.html). I have ME/CFS rather than fibro but a lot of it applies to fatigue and pacing!

@annaeriksson5065 Год назад

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❤️🤗

@kirstyjackson1852 Год назад

@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

@elinalannah0022 Год назад

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 ❤️❤️

@LifeOfPippa Год назад

Thank you so much for watching! Fingers crossed there's more understanding and empathy to come, hey?

@KernowFishy 3 месяца назад

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.

@stepht9268 10 месяцев назад

This is the best explanation of post-exertional malaise I've heard. Thank you for sharing! Hope more people learn about ME/CFS.

@LifeOfPippa 10 месяцев назад

Thank you so much Steph!

@ruby3200 Год назад

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.❤️

@LifeOfPippa Год назад

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!

@rachelstewart5044 9 дней назад

@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" ❤❤❤❤❤

@patricianorman7493 3 дня назад

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.

@escott696 Год назад

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.

@LifeOfPippa Год назад

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!

@jamienevill1768 Год назад

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 🥄🤗💜

@jenniandlucy0115 Год назад

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 Год назад

Everything crossed we see big improvements in access in years to come!

@jenniandlucy0115 Год назад

@@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

@escott696 Год назад

@@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)

@jenniandlucy0115 Год назад

@@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

@frentbow Год назад

So sorry for your inaccessible experience

@rockcollector3k 11 месяцев назад

thank you so much for spreading awareness you are so helpful

@starwarscrazy4540 20 часов назад

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.

@stevel8265 2 месяца назад

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.

@merrewynconlay7640 Месяц назад

Thank you so much for such an informative video Pippa 😊x

@abunadia5506 7 месяцев назад

Thank you for this video! Incredibly articulated. You are not alone in your concerns. All the best mate!🇦🇺

@Moonbeamglider 2 месяца назад

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.

@Xariann Месяц назад

Thank you for this video.

@TSWBM 10 месяцев назад

I like what you’re talking about the same kind of problems

@jenniferbennett2781 Год назад

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! 😀

@LifeOfPippa Год назад

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!

@jenniferbennett2781 Год назад

@@LifeOfPippa Good grief Pippa, I'm so sorry about that! Obviously more tired out than I thought!

@LifeOfPippa Год назад

@@jenniferbennett2781 Hahah no worries, definitely been there! Surprised I don't forget my own name sometimes knowing me!

@pamulawallace4330 Год назад

❤ thanks for the video,very informative,i am only at the walker stage ,

@annettesuterswiss Год назад

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.

@TSWBM 10 месяцев назад

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

@monicalee2462 Год назад

I have fibromyaga and pots and i use a wheelchair when i go out

@Cetrifuga1945 8 месяцев назад

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

@Cetrifuga1945 8 месяцев назад

La carozzina elettrica spero che mi ascoltano ok ciaooo

@TheWebtuts Год назад

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

@LifeOfPippa Год назад

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!

@rebeccarussell9618 10 дней назад

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