Discussion in 'Fibromyalgia Main Forum' started by momof27, Aug 23, 2009.

  1. momof27

    momof27 New Member

    used the walker for the first time today and I'm dieing, it is humiliating for me please tell me how to cope.
  2. keetta

    keetta New Member

    I was just told that I have FM the other day, still not too sure if I have it or not. Seems like the thing to tell people they have if you really dont know what else is going on with them and he was a new Dr. as well~getting a second opinion.
    Anywho! My husband and I were at the Dr.'s office when we kept seeing the older ladies going in with their walkers when I asked him if he was going to be able to handle being with me when I was no longer able to walk (due to back problems), he instantly popped off and said " I'll always be with you, who else is going to trick out your walker"!!!! I almost cried! We continued to laugh and plan how were were gonna fix up my walker and what color he was going to paint it for me and the mag wheels that were gonna be on it.... I felt a lot better to say the least.
    Please dont let this get you down, your able to still get around on your own. Thats all thats important! Who cares what people think about it, they dont have to live your life and they sure arent the ones that are stuck somewhere not able to get around!
    Decorate it, make it yours and let your family help you! Live and forget the rest!!!!
  3. gb66

    gb66 Well-Known Member

    I had to use a wheelchair a few months ago for the first time while at my doctor's office. It was in a hospital and they had chairs. At first I felt self -conscious, but being in a hospital setting it wasn't too bad.

    Later, I started thinking how nice it would be to go to the mall again if I had my own chair. Family finally convinced me to get one. I've had it for 2 months and still haven't gotten the nerve to go out. I know I will one day but I do know how you feel. I guess it's just hard to get the first time over with. Much easier in a hospital. GB66
  4. DemonFairy

    DemonFairy New Member

    Aw, don't be humiliated by a walker. It's just something that helps you get around. Some of us get to use invisible pills, some of us walkers, some of us wheelchairs, and some of us just limp all over the place like I was doing at the grocery least with a walker, people think you have a legitimate illness/injury. Don't worry about other people and just look at it as helping you live a better life.
  5. It's nothing to be embarassed about.

    I was ANGRY. SEETHING, bawling angry tears, when I came home from physical therapy, NOT with another appointment scheduled... but, instead, a prescription for a broad based quad cane, and was basically told by someone no more than my age, at that time (I was 26) that, in so many words--- I WAS TOO SICK/WEAK for physical therapy!!!!! That, maybe at another time, when I had stronger muscles, or better balance... we could achieve more, but, the PT was not willing to repeatedly watch me fall down, or into the walls.

    Also, my therapist at that time (she was not only an RN, but had her BSN (bachelors in science/nursing or something like that) degree, and counseled people with chronic illnesses.... then decided that the cane was not stopping my falls (I have MS, as well as CFS, FM, arthritis, pancreatitis, PCOS, etc etc et al, ad nauseum !!!)

    So, SHE then had my integrative doctor (at the time, he was far more involved in my treatment then ANYONE, but, especially my 'primary care physician' ) so, she had *him* rx a wheelchair...

    She also wanted occupational therapy to visit my home, and decide what other handicapped aids I needed, wanted railing along my kitchen, & other larger areas where I commonly fell...

    THAT- I put my foot down on, and said NO. I would have my dad install rails in the bathtub (and he did), and *consider* a shower chair... but, NO RAILING. I felt it was *overkill*...
    she tended to *over-sympathize* to a fault.

    Her own father passed away, and- he'd been in a motorized wheelchair, due to *Guillan-Barre Syndrome* (spelling is off there, sorry) some time ago, :O which from what I'd read on Guillan-Barre syndrome was/is a rare occurance with GBS, which sounds as if it is *easily* and totally treatable. Who knows though, when her father was diagnosed, etc.

    However, please remember, if we don't laugh, we'll cry-

    Allow yourself to grieve, be angry, question, cry, yell, whatever feelings you go through etc... *for a while*... and then you just pull yourself right back up again. (and, that won't be permanent, the grieving at loss of control, will come and go at times. it's ok. you're human.)
    Know that there are people younger, older, the same age, as you, using all sorts of *aids* to help our mobility, and, safety- and that is what they are- *aids* I really can forget that, in my wheelchair, when I'm having a hard time dealing with stares- whether they be sympathetic, inquisitive, or disdainful. You'll get them all.

    I was once wearing my (one of *numerous*) smart-alec T-shirts I own, that, ironically said "Keep staring, I might do a trick" while I was coming out of one of my appointments with my sister, I walking out of the automatic doors at the hospital- I tripped over their special floor mats they have (bolted down) that are there to PREVENT 'slip & fall' accidents... but not so good for people who can't always pick their feet up entirely, LOL... I tripped,my right knee buckled (the knee buckling is the cause of my falls 90% + of the time).. and went down- landed RIGHT on the metal plate at the bottom of my quad cane, on my hip (OW!!!!!)

    Some lady FAR older than me, RAN to my aid (my sister was oblivious, LOL, until I, laughing myself... yelled for her- she busted out laughing as well- not because I fell, but, because she'd not even known! LOL)and was walking & talking to herself, LOL.

    This lady was probably twice my age, maybe older- and SHE'S helping ME out of the floor- THAT was a hard pill to swallow.
    So was my husband's best friend's 82 year old grandmother, insisting I let her (tiny little frail thing!) hold onto my elbow as we went up some steps, at the funeral home, when her husband had passed away (car accident they were both in).

    There will always be those little "kick me while I'm down" moments...and you will feel angry at God, even, and he knows that.

    and I say this with true compassion, and full understanding through experience... but, I know how HUGE these moments feel, when they happen (and.. for quite a while after, if you're like me, very sensitive, as well as 'tender-hearted', big, big thinker- I've always been a "why" person- I "why" things to death- and still never have fully learned, or gotten it through my own head, that sometimes there ARE NO ANSWERS,) "why" will only drive you crazy sometimes.

    However, point being, I guess... you can see that you are definitely not alone, you are normal to feel how you feel- and as far as people who are close to you, and even those who are not- NO ONE has the right to tell another person how to feel. It's something Dr. Phil says, but, something that helped my 61 year old mother in her life/marriage sooo tremendously (mom has been disabled for about 14+ years, with fibro) and, my stepdad just DOES NOT GET IT!!!!

    Noone has the right to tell you how to feel.

    Noone can make you feel inferior without your permission.

    You teach people how to treat you (you hold your head HIGH Mom! You KNOW you should, deep down! You can no more control having gotten sick, than you could control the weather.)

    And- lastly.. SOME people will ALWAYS stare... (some of us on here have very sharp senses of humor, and that is when it really comes in handy, to say something witty, rude, just state an obvious fact, or, even hurl a 3rd grade type of remark their way- that usually turns their head)

    My own father- LOOKS like he's staring at people, all of the time.. He's *not*... he is "out to lunch" mentally, pretty much all of the time... but, it has ticked more than one person off.. they think he's staring, when in actuality, he is completely off in his own world.

    But, some people always WILL stare- some people literally look down upon people who are disabled, JUST BECAUSE they are disabled- people just hate- just for the sake of HATING.

    (and, btw... SCREW THOSE PEOPLE!)

    I've dealt with dirty looks, curiosity, disdain, hate, rudeness, and just the opposite- sympathy, empathy, kindness...

    and (equally as rude as staring, sometimes IMO- is OVERLY sympathetic actions-

    I have been "patted", "hive-fived", etc) at rock concerts (usually after people are good & drunk- my friend in NY & I jokingly call it "pet the gimp" because they do act like 'aww, let's pet(pat/high five) the cripple"....

    getting touched by total strangers, and even treated as if I *must* be mentally handicapped, as well, since I'm in a wheelchair. And, that happens to me nearly at every concert I go to. UGH! Last year, some 'teeny-bopper' patted me on the shoulder, at the end of the aisle, and told me "you are hard-core chick" (Why? because I have a wheelchair, but, am standing with my cane, rocking out to the concert, just like everyone else??) Lol... wow, I stood out amongst 25,000 people. Yay, (*wink*)

    It's a crazy world. But you are not a crazy person. And you are NOT a second class citizen, either.

    Allow yourself the time to cope, but, hopefully with all of our support, & shared stories, it will help you.

    Big Hugs,

    AintAsGoodAsIOnceWas (part time quad cane/wheelchair user. :)
    [This Message was Edited on 08/24/2009]
  6. hang in there, I use a cane when I need to walk a distance as my body is so weak. I was embarassed but what choice do I have. People are rude and stare alot but thats THEIR problem!
  7. FibroFay

    FibroFay New Member

    I felt the same way the first few times I used the handicapped parking space and hung my placcard on my rear-view mirror. I wanted to die.

    But, you know what? I got used to it. It took about 6 months. Now I don't even think about it any more. I've developed a whole other attitude about it. Thank goodness for my handicapped placard. I don't go anywhere without it. And I no longer feel at all self-conscious. I just feel grateful.

    I think you'll adjust. Hang in there, mom. Let us know how it's going. We are cheering for you!

  8. AuntTammie

    AuntTammie New Member

    I am in the same process of adjusting to using a walker....I am trying to be grateful, though, that it allows me to do things that I otherwise would not be able to do.....and to be happy that when I have it, I will no longer have to worry about getting stranded places (as has happened several times in the past)....still I totally know what you mean about feeling bad about it