Part-time wheelchair user

[Pg2005]

I have Complex Regional Pain Syndrome, a progressive neurological disease. Because of it I've started using a wheelchair for longer outings such as shopping trips. It has made a WORLD of difference in my life. I used to avoid going out at all.

My job requires that I walk... a lot. It takes a lot of medication to get through my work days and I still suffer. And I suffer the day after as well. I'm currently looking into other ways of using my nursing license.

I used to keep my CRPS diagnosis a secret, but have been trying to "get the word out" so people understand why I am the way I am. I recently ran into a coworker while I was out in my wheelchair. Her eyes got huge and she had a what-the-heck look on her face. She knew I have CRPS, but couldnt understand why she has just seen me walking yesterday and now I'm in a chair. I also can't help but think cashiers are wondering how this girl was walking yesterday and now she's in a wheelchair.

How do you deal with people sometimes seeing you walking, and sometimes youre in your chair? I hate to say it... I feel embarassed and worried I'll run into someone I know.

[t8burst]

Gosh, I don't know. Probably because I can't walk and people never see me without my chair.

[Sue Pendleton]

People with MS have this happen a lot. If you feel you must explain just say with your disease/condition that you have good days and bad days and this is one of the bad ones.

[darkeyed_daisy]

I agree with Sue.

On a side note, you have lots of job opportunities as a nurse even not being required to walk. So keep that in mind as your body changes. I had several friends with disorders such as yours who worked for hospitals in Arizona I was at. If you can just keep your mind focused as the pain intensifies will be your battle.

Do what you need to do to enjoy life and live it to the fullest. Your coworkers may not understand but that is okay too. Usually the best answers to give are the shortest as in "good days and bad days" like Sue said.

[SCI-Nurse]

Dear darkeyed_daisy,
I hope that you have been up front about your disability with your employer. It is a federal law to be protected.

There are other nursing positions that do not need to walk/stand- telephone triage for example. I used to work in the field and many of the nurses who came there could no longer work on the floors because of surgery, disabilities, etc.

good luck to you. I think the scenario with running into a co-worker in your wheelchairis the start you need to get the word out slowly about your abilities.

pbr

[SCI_OTR]

How do you deal with people sometimes seeing you walking, and sometimes youre in your chair? I hate to say it... I feel embarassed and worried I'll run into someone I know.

It is what it is. You gotta do what you gotta do.

You know it makes a huge difference and that is what is important.

I'm a health care professional as well. I was injured in '82, but didn't begin using a wheelchair at all until around 7 years ago. I knew I needed an efficient wheelchair in order to continue working (after all I was the seating specialist).

Sure there may be some awkward moments when you run into people you know who are caught off guard by it, but there is no sense worrying.

After all,

It is what it is. You gotta do what you gotta do.

[~Lin]

If its strangers, I really don't care. I'm sure some people probably stare at me and wonder when they see me get out of the car and walk around to the back to open it up and unload my chair, then wheel away. People don't understand disabilities and the way they work. Especially with chairs, they think its all or none.

I have a similar fear, but its running into people I used to work with. I'm not able to work currently, but still know a lot of people in the horse community. When I was working, I kept things to a minimum between my boss and coworkers, and pretty much hid things completely from students. The only things they knew was that I wore joint braces for "bad joints." So I worry about running into past students or coworkers while I'm out in my chair. It hasn't happened yet. If it did, I'd just briefly explain that I have a genetic disorder that increasingly limits my mobility and am now using a wheelchair part time.

My friends really don't know in detail about things either, so that makes it awkward too. It was very awkward when I started using a service dog, especially around friends who had known me for so many years. They still see me as where I was when we first met, and not how I actually am currently. I even hide as much as I can from my roommate who helps me out tons with my limitations. I'm sorry I don't have an answer, I don't think there is one for how to handle situations like this. Some people are very open about their health problems, some people aren't. How YOU handle it depends on things like that.

Are you familiar with the "spoon theory"? Its from the website "but you don't look sick." Its a good way of helping close friends or family (or anyone that you're willing to share with) what its like living with a chronic illness. Cliff notes, we are limited and as a result must make choices with everything we do and cannot do things without thinking the way an able bodied person can. If I take this shower now, will I have energy to run errands after? If I walk instead of taking my wheelchair, will I be paying with pain later? I think it also helps with the fact that things aren't all or none. I have a bad habit of trying to do things I shouldn't be doing, which confuses people even more because they see me push myself to do it but don't see my spending 3 days recovering from it.

Someone who isn't disabled will never fully understand. Thats never going to happen. Those that care about you will try to understand. And who gives a damn what strangers think.

[TechDad]

I understand your dismay with occasional wheelchair use. I have a progressive form of MS which gives me some bad days where I use a manual wheelchair and some not as bad days where I can get around with out it. It used to bother me that I too would see folks I knew or if the store clerks who would wonder why is he in a chair when they saw me yesterday walking. Then it hit me - I like being able to be self-suffient and besides I have a pretty cool looking chair. I just got used to telling people that I have good days and bad - bad days I get to ride and the good days I am forced to walk. Amazingly the more times I saw people I knew while I was in my chair the more times I would hear "why don't you use the chair more often?...you look miserable when you are walking." It never occurred to me that the store clerks or friends were more supportive than I had initially given them credit for. You may find the same thing.

[Pg2005]

Thank you for all of the helpful replies. Sorry it took me a bit to get back to this thread... I was too busy getting married!

I walk tons at work and people say they wouldn't even guess I have crps. Even if I look good on the outside I'm hurting so so bad on the inside. I pay for it for days.

some believe that physical activity helps crps so look at the wheelchair as a big no no. Ive been to the best of the best for treatment and nothing has helped. So I can either sit home or be active out in my chair. I'm going for the spinal cord stimulator this fall and crossing my fingers. I'm also looking for a chair friendly nursing job, but don't want to switch until after my surgery so I have my fmla benefits.

Life sure can turn cruel in an instant, but I won't let it keep me down.

[Coleen]

congrats on getting married! I also use a chair/scooter when I need to go more than 5 or so feet or have had a bad pain day - There's no real way to explain it besides the 'good/bad day', but I've seen that the people who don't understand aren't worth my time. Good luck & good(better) health & understanding!