I can walk, but with extreme pain, though I have not yet been diagnosed with anything the pain is also there when I am not walking and is in various parts of my body, I also have weakness in my ankles, knees, and one hip, and back pain. Walking causes my to be fatigued too and I end up spending much of my time in bed.
I chose to get a wheelchair, which I self propell when I can, at a daycentre I go to during the day, and when I go into town, and at times of severe exhaustion my partner pushes me.
The pain is much less and I find that I am not so worn out when I get home, and it has felt so much better that I am currently using the chair all of the time when out of my home.
I have had very negative reactions from staff at the daycentre I go to – who have called me lazy, (despite that using the chair I am getting more exercise than I have been able to in years), and say I am too young to be taking to a chair (I’m 30), they keep telling me to get out of the chair and exercise, even though this defeats the object of allowing me to rest my body. I think they would rather I suffered the pain or didn’t come to the center.
My parents have also been very against me using a chair, and say it will make me less mobile because I am not using my legs when I’m out of the house.
Because I already have mental health problems the way people are treating me is really affecting and hurting me.
How can I deal with this sort of reaction and show them that I am actually better off using the chair, even if I do so for the rest of my life?
Although as I said I do not have a definite diagnosis, I am waiting to see specialists for more tests, I have been told by the doctors who I have seen so far that using the chair is best for me at this point. Apologies for not being clearer about that, and thanks so much for all the replies, I appreciate them all.
Also, in ref. to Madkins reply, I am not a full time user and do walk for short distances and in my home, albeit with difficulty. I am not resigning myself to becoming a permanant chair user and if the tests which I have lead to me being given options to avoid using a chair then I will follow that advice.
These people do not understand the way the body works. If your body gets over tired and you keep on moving you can end up hurting yourself. Once you lose your mobility it is harder to get it back versus keeping your mobility and using it when you feel good. I do more than I ever did using a scooter than I did when walking once things got rough.
Use your chair when you are going to be out for a long time. And try to maintain your mobility on your legs at home. Balance between using and not using will get you farther.
unless they have been in your exact situation then they have no room to talk. If using the chair is allowing you to finally get some exercise, have more energy, and get around better than by all means use the chair.
They do not see how tired you are at the end of the day from walking in extreme pain all the time. When some people see wheel chairs they automatically assumed handicapped when it is really the other way around. The chair is allowing you a freedom you were once not able to achieve using your own legs.
Non-PWDs are very ignorant about PWDs and Disabilities. Do not let judge you out of ignorance. You might try getting a written statement from the doctor stating that it is medically necessary for you to use a wheelchair. The next time Non-PWDs judge you out of ignorance, you can state that you have a written statement from the doctor that states that it is medically necessary for you to use a wheelchair.
I had the same problem but in a different way…I use to walk with heavy braces and as I got older I went mainly to the wheelchair…My sibling told me I should still use my braces…
In ways I should have keep at times putting on my brace,but not walk with them cause my back has become more curved and my lungs are not as good as they use to be…
What does your main doctor tell you to do…Maybe as someone said when home walk..and when out use the chair…But do what you think is right for you…Your family don’t know the kind of pain you are having with walking…
I had the same problem only in reverse. My family was all for me using a wheelchair that way I could be more involved with them. My doctor on the other hand was against it. She told me I should walk as much as possible. I am also in extreme pain all the time and if I do walk I have to use crutches and even then I fall down all the time. Luckily I have only suffered minor cuts and bruises and a broken pride from my falls. I finally had to stand up to my doctor and tell her she was not the one who was in pain and falling all the time. She finally heard what I was saying and ordered me a chair. Sometimes you just have to put ignorant people in their place.
Well, what I would do is just tell your family that it helps. Also I would tell the administration at your daycenter what their staff is doing. It isn’t any of their business. Also if you haven’t already I would ask your doc what he thinks. If your family is getting on your nerves to bad ask your doc to have a talk with them. I know exactly how you feel, my family doesn’t believe that I could be in as much pain as I am even though my doc tells them that "Yeah, she is hurting.", sometimes all you can do is just ignore the comments and do what is best for you.
This letter really worries me… I am on their side based on what you wrote… mostly because of that first sentence- you have not been diagnosed with anything.
You see, I know a LOT of people at the rehab center I work at who argue that they need a wheelchair for various reasons that their doctors and therapists cannot verify. The problem is that if you give into it, you never get out of it. The mind can make a TON of pain and a thousand good reasons to use a chair.
You make a few good points- more energy through the day, etc.- but it seems to me the best course of action here would be to figure out WHY you are in pain, etc. and deal with the root causes rather than skipping all of that and going to what seems to be ‘an easy fix’.
aww. {hug}
hmm. Anyone that has the *amount of pain* you are in, sheer/severe exhaustion and amount of stress you may be under, will show it and I don’t doubt you do. You would think staff seeing you on a regular basis would be your biggest supporters. And if you’ve been needing assistance for a while now that should have told them. You actually shouldn’t have to be defending your motives in taking care of yourself. .
**Some Doctors fail in diagnosing pain correctly. That’s why Doctors ask you: "On a scale of 1-10 what is your pain level?" Pain cannot be measured by blood work or ur.samples etc. Still, my advice would be for you to go see your primary care physician to be evaluated and get orders for a wheel chair, if that is agreed upon, and for other necessary means to assist you.
**Wheel chairs keep people from falling and hurting themselves. If you have to be in a wheel chair for the rest of then that is your assistance to handle pain and suffering. Age has nothing to do with it. There are children in wheel chairs.
**Please also remember that you know your body more/best than anyone and don’t let that discourage you from doing what you can do to alleviate pain until you can see someone in the medical field. Be assertive, people will listen.
note: If you had to come on Y/A to ask this, darn tootin’ there is something wrong with your situation.
p.s. If I were you, I would talk to administration higher up than the management at the center. Tell admin. about your treatment by staff and so forth.
love ya.
{{{hugs}}}
Your parents and the other people who criticize you for using a wheelchair are not in position to understand your problem and they should not be judging you. You are the one who experiences the pains and the difficulties. If the wheelchair genuinely helps you then I see no reason why not to use it.
It might be good to not use the chair absolutely all the time though. Using your feet at home for example will help you keep your feet strong enough. If you always use the wheelchair the muscles in your feet will become weak with time, so I recommend standing/walking on your feet for at least a little while every day.
You should also keep trying to find out what is causing all this pain. If your doctor cannot help you then try seeing another doctor and search for information on the internet to see if you find some medical condition that might fit with what you are experiencing and then have a doctor verify if you have that.
I’ve had chronic pains and mobility problems for years. At times it’s so bad I can barely walk and barely move my fingers. For a long time doctors insisted that I’m healthy (some even without examining me, just assuming I’m fine because I’m young) and it was indicated that those problems were all my head. I suspect that if you will be diagnosed you can both get help and people will also be more understanding of your choice to use a wheelchair. People tend to believe that if you’re not diagnosed with anything then you are fine.
There is a strong connection between physical and mental health. Bad physical health can cause bad mental health and bad mental health can cause bad physical health. It’s a vicious circle. Make sure to try to improve both your physical and mental health. Once one of them improves you might find that the other does too.
Good luck!
don’t worry yourself over what people think or say! people are cruel ! if you think the chair helps use it.only you can do this.i’m disable myself.i have to use the chair myself from time to time.and i hate it,but i do need it sometimes.Good Luck!
You’re torn between the wheelchair as a symbol and as a tool. Your disability is not readily visible. People who care about you may feel that "depending" on a wheelchair means you "can’t cope," and that you’re "sentencing yourself" to a life of dependency, etc., and that using a wheelchair is putting a sign around your neck that says "cripple," "helpless" "not normal." They think it’s a stigma. (People still think this old-fashioned way — with values and attitudes that are 50 years out of date.) Wrapped up in this is the fear of dependency…a slippery slope leading to invalidism.
But a wheelchair is nothing but a tool, like eyeglasses. You don’t bang in nails with your fist or open bottles with your teeth (at least one hopes you don’t.) You use the most efficient and simple tool around. In this case, it is a wheelchair, used occasionally when necessary.
At certain times, a wheelchair can make you more independent. Independence is being able to determine and take responsibility for one’s own life. .While ykou’re waiting for the specialists’ to deliver their diagnoses, there’s no reason to "play through the pain." Instead, take advantage of the tools that are available to you — it is not surrender, but a realistic assessment and solution.