Very well said. Functional neurological disorder can require a person to need wheelchair part time, a heart condition can require someone to need wheelchair part time a list of conditions can require a person to need wheelchair part time.
I have FND and Ehlers Danlos. When my body isnt convulsing my knees and hips like to dislocate. I can wiggle my toes but my legs refuse to hold me up with out dislocating something. Technically, yes, I have learned how to walk on knee dislocations.... but its still a very bad idea to do so. other days my body decides to "get it together " for once and I get pop over to the store for a loaf of GF bread considering its 200 feet from my front door but wouldnt be able to walk through the supermarket with out a hip popping out. The use of the wheel chair also is a nice work out for my upper body, making it LESS likely that my shoulders will dislocate given that those ligaments are being strengthened.
Sometimes I get looks when I park with my disability tag and get out and walk “normally”. Like you said it’s about distance, pain, etc. some days or even weeks are better than others.
I use a rollator indoors, but I totally use a wheelchair when I go outside of the house. Lots of people equate wheelchair use with being paralyzed. One time I had TSA agent at an airport in Seattle see my legs move and announced loudly "It's a miracle!" Yeah, I schooled him good.
Good, he was really rude for saying that and too many people are so ignorant that they think that all wheelchair uses have no leg mobility and that does not make any sense
I always appreciate your way of explaining your subjects. I hate that we live in a society in which people judge . If people aren't hurting anyone and doing what they need to get around. Then let them be. Bottom Line is to "BE KIND!" ❣
Unfortunately a lot of people see using a wheelchair as 'giving in' to your condition. I used to be able to walk with my cerebral palsy and the pressure to not use a wheelchair was immense, even though i struggled and would be in a lot of pain on many occasions, it would be seen as a positive so long ss i was still standing! Im now unable to walk because of being an amputee and i still get pressure to try and walk but thankfully not as much as before.
I have been having problems with my back that affects my walking and I am in so much pain trying to be on my feet. I bought a cheap bulky heavy wheelchair at the thrift store to help me out and it has helped tremendously. But since it's so big and bulky, I can't take it anywhere without help. When I do have it, I gain so much of my freedom and independence back. This disability is most likely permanent, so I asked my doctor if I can get a custom made wheelchair. Having a much smaller and much much lighter wheelchair will give me almost everything back so I can finally do what I need to do and not just sit on the couch. His response was, "When people use dependent devices, they use them, they see they get benefits. So they keep using them. I don't want you to use a wheelchair. I'm not going to get you one." (paraphrasing). In my mind, people who benefit from wheelchairs need them! I cannot do anything without a wheelchair. I can't go shopping for groceries, I can barely work, I can't get things done around my house without having a wheelchair, etc. I can walk very short distances and only be on my feet for a few minutes at a time. If I don't sit down, my pain skyrockets and I am down for days or weeks. I have been so frustrated these past few days as I really need to go grocery shopping, but I can't bring my wheelchair and the store I go to usually doesn't have a motorized cart, or if they do, they don't work. I'll be seeing another doctor next week so I'll have to wait until then and see how that goes.
Some doctors are so invalidating and just don't understand. You won't get dependent on the wheelchair - you need it. It is better for your health if you have one as it may lessen the pain and distress associated with not being able to do things. Maybe you could start a fundraiser for a wheelchair or ask a charity for support?
This happened for many veterans who is disabled and able at times to walking around the yard and back yard by noisy neighbors who called the guy who uses the wheelchair user part time are faking it which isn't true to cause trouble for the veterans who are part time wheelchair users and able to walking around the house 🏠🏡 inside as needed, it's not 🚫 finding a new place.
Thanks for explaining. I have EDS and inflammatory rheumatological disease. So I was in hospital and asked for a wheelchair to go to the park . I was even not understood by the doc, even if he knew my history. I went trekking a couple of days before, yes, but with that flare, it was not possible. And yes, I felt like faking and making things up as I know people with paralysis who need a wheelchair more than me.
I got HDS And i am getting evaluated for EDS And I went to festifale this year and I kept falling down several times and could bearly walk after that. Not to mentioned that It was really painfull. I usually have a lot of pain for standing and walking the ammount I would need to get anything done. Don't feel like you are faking, what you experience is very real and it is a problem
For the past five months Its been a challenge for me getting use to my new life with being diagnosed with a chronic autoimmune disease. Dealing with the symptoms when flares hit are the most challenging moments. I try to be strong and encourage myself mentally to tell my body to push through but some days I just physically can't. Its been a difficult journey because I'm use to being very physically energetic but since getting sick most days I find it hard just to get out of bed. When I do go out or do even the smallest of physical exertion it takes a huge toll on my body. If Im out running errands for a few hours by the time I get home I'm extremely exausted, and it takes me days to recover. I can no longer handle walking around the grocery store as I shop because its literally too much on my body, and often times if I stand for longer than 15 minutes, I risk fainting. Because of my heavy fatigue, joint pain, body weakness, Im researching ambulatory mobility aids, mainly a wheelchair because I'm seeing now that I do need it. Videos like this make me feel less awkward about going this route. So thank you for filming this video.
I have never understood how people can look at the invention that was made so that people who have trouble walking can get around independently and think "people who use this are lazy/failed/are lesser" . Like..... I would think that giving up and never getting out of bed again is failing. These wheel chairs are a tool, medical equipment, that people can use to do MORE than they other wise would be able to. When I was trying to walk and dislocating multiple joints my physical health decreased really badly and I was very unhappy with self persepctive, but once I started to use the wheel chair, 1. every thing took three times as long to do BUT 2. I was still getting MORE done and 3. my physical health, mental health and self perspective greatly increased. I am more healthy when I use the wheelchair and thats not just talking about my joints staying in place, thats talking about reuniting with my communities, rejoinging activities I throught I had lost access to, and knowing what its like to not be in constant pain. using the wheelchair allows me to not have to worry about having a seizure and sustaining further injuries, it allows me to know ill be safe in the event of a faint (I have seat belts ) . it allows me to express my self with accessories and lights and features. it gives me better access to things other people take for granted like getting further education or for some people employment. So.... tell me again how using a wheel chair is some how "failing"? I just dont see the logic in people saying that.
Thank youfor provieding me more infromation I am waiting for my first wheelchair. I will be an Ambulatory Wheelchair User. I can no longer walk long distances. and people can keep their opinions to themself, If I didn't need this cahir I would not haveone.
Very well said. Functional neurological disorder can require a person to need wheelchair part time, a heart condition can require someone to need wheelchair part time a list of conditions can require a person to need wheelchair part time.
I have FND and Ehlers Danlos. When my body isnt convulsing my knees and hips like to dislocate. I can wiggle my toes but my legs refuse to hold me up with out dislocating something. Technically, yes, I have learned how to walk on knee dislocations.... but its still a very bad idea to do so. other days my body decides to "get it together " for once and I get pop over to the store for a loaf of GF bread considering its 200 feet from my front door but wouldnt be able to walk through the supermarket with out a hip popping out. The use of the wheel chair also is a nice work out for my upper body, making it LESS likely that my shoulders will dislocate given that those ligaments are being strengthened.
Sometimes I get looks when I park with my disability tag and get out and walk “normally”.
Like you said it’s about distance, pain, etc. some days or even weeks are better than others.
I use a rollator indoors, but I totally use a wheelchair when I go outside of the house. Lots of people equate wheelchair use with being paralyzed. One time I had TSA agent at an airport in Seattle see my legs move and announced loudly "It's a miracle!" Yeah, I schooled him good.
Good, he was really rude for saying that and too many people are so ignorant that they think that all wheelchair uses have no leg mobility and that does not make any sense
People always look so judgy when someone in a wheelchair stands up. Even worse when they walk unassisted
I always appreciate your way of explaining your subjects. I hate that we live in a society in which people judge . If people aren't hurting anyone and doing what they need to get around. Then let them be. Bottom Line is to "BE KIND!" ❣
Unfortunately a lot of people see using a wheelchair as 'giving in' to your condition. I used to be able to walk with my cerebral palsy and the pressure to not use a wheelchair was immense, even though i struggled and would be in a lot of pain on many occasions, it would be seen as a positive so long ss i was still standing! Im now unable to walk because of being an amputee and i still get pressure to try and walk but thankfully not as much as before.
I have been having problems with my back that affects my walking and I am in so much pain trying to be on my feet. I bought a cheap bulky heavy wheelchair at the thrift store to help me out and it has helped tremendously. But since it's so big and bulky, I can't take it anywhere without help. When I do have it, I gain so much of my freedom and independence back. This disability is most likely permanent, so I asked my doctor if I can get a custom made wheelchair. Having a much smaller and much much lighter wheelchair will give me almost everything back so I can finally do what I need to do and not just sit on the couch. His response was, "When people use dependent devices, they use them, they see they get benefits. So they keep using them. I don't want you to use a wheelchair. I'm not going to get you one." (paraphrasing).
In my mind, people who benefit from wheelchairs need them! I cannot do anything without a wheelchair. I can't go shopping for groceries, I can barely work, I can't get things done around my house without having a wheelchair, etc. I can walk very short distances and only be on my feet for a few minutes at a time. If I don't sit down, my pain skyrockets and I am down for days or weeks. I have been so frustrated these past few days as I really need to go grocery shopping, but I can't bring my wheelchair and the store I go to usually doesn't have a motorized cart, or if they do, they don't work. I'll be seeing another doctor next week so I'll have to wait until then and see how that goes.
Some doctors are so invalidating and just don't understand. You won't get dependent on the wheelchair - you need it. It is better for your health if you have one as it may lessen the pain and distress associated with not being able to do things. Maybe you could start a fundraiser for a wheelchair or ask a charity for support?
This happened for many veterans who is disabled and able at times to walking around the yard and back yard by noisy neighbors who called the guy who uses the wheelchair user part time are faking it which isn't true to cause trouble for the veterans who are part time wheelchair users and able to walking around the house 🏠🏡 inside as needed, it's not 🚫 finding a new place.
This is really informative, thank you.
Thanks for explaining. I have EDS and inflammatory rheumatological disease. So I was in hospital and asked for a wheelchair to go to the park . I was even not understood by the doc, even if he knew my history. I went trekking a couple of days before, yes, but with that flare, it was not possible. And yes, I felt like faking and making things up as I know people with paralysis who need a wheelchair more than me.
I got HDS And i am getting evaluated for EDS And I went to festifale this year and I kept falling down several times and could bearly walk after that. Not to mentioned that It was really painfull. I usually have a lot of pain for standing and walking the ammount I would need to get anything done. Don't feel like you are faking, what you experience is very real and it is a problem
For the past five months Its been a challenge for me getting use to my new life with being diagnosed with a chronic autoimmune disease. Dealing with the symptoms when flares hit are the most challenging moments. I try to be strong and encourage myself mentally to tell my body to push through but some days I just physically can't. Its been a difficult journey because I'm use to being very physically energetic but since getting sick most days I find it hard just to get out of bed. When I do go out or do even the smallest of physical exertion it takes a huge toll on my body. If Im out running errands for a few hours by the time I get home I'm extremely exausted, and it takes me days to recover. I can no longer handle walking around the grocery store as I shop because its literally too much on my body, and often times if I stand for longer than 15 minutes, I risk fainting. Because of my heavy fatigue, joint pain, body weakness, Im researching ambulatory mobility aids, mainly a wheelchair because I'm seeing now that I do need it. Videos like this make me feel less awkward about going this route. So thank you for filming this video.
Thanks for explaining things in an easier way to understand
I have never understood how people can look at the invention that was made so that people who have trouble walking can get around independently and think "people who use this are lazy/failed/are lesser" . Like..... I would think that giving up and never getting out of bed again is failing. These wheel chairs are a tool, medical equipment, that people can use to do MORE than they other wise would be able to. When I was trying to walk and dislocating multiple joints my physical health decreased really badly and I was very unhappy with self persepctive, but once I started to use the wheel chair, 1. every thing took three times as long to do BUT 2. I was still getting MORE done and 3. my physical health, mental health and self perspective greatly increased. I am more healthy when I use the wheelchair and thats not just talking about my joints staying in place, thats talking about reuniting with my communities, rejoinging activities I throught I had lost access to, and knowing what its like to not be in constant pain. using the wheelchair allows me to not have to worry about having a seizure and sustaining further injuries, it allows me to know ill be safe in the event of a faint (I have seat belts ) . it allows me to express my self with accessories and lights and features. it gives me better access to things other people take for granted like getting further education or for some people employment.
So.... tell me again how using a wheel chair is some how "failing"? I just dont see the logic in people saying that.
Thank youfor provieding me more infromation I am waiting for my first wheelchair. I will be an Ambulatory Wheelchair User. I can no longer walk long distances. and people can keep their opinions to themself, If I didn't need this cahir I would not haveone.
Just stay positive ❤❤❤❤👍👍👍👍👍👍👍👍 5:19