Have to start using a wheelchair sometimes

Discussion in 'Fibromyalgia Main Forum' started by EllenComstock, Sep 2, 2003.

  1. EllenComstock

    EllenComstock New Member

    and trying not to feel sorry for myself. I was diagnosed with FM over a year ago, but have had it most of my life. I posted a message about a week ago about how walking on pavement causes severe pain in my legs, hips and feet.

    Last Sunday, my husband and I went to the fair with my in-laws. I thought I would be okay as we were walking slow and I took frequent breaks and sat down. My husband even brought a comfortable lawn chair for me. Later that day and night I was in such severe pain that I got no sleep that night and was so wiped out the next day. Fortunately, it was Labor Day and I didn't have to work.

    As much as I hate to give in, I guess I will have to start using a wheelchair when we go to these places. It's either that or we don't go and I don't want to totally stop living. I guess I am at a point where I am having to really accept my illness, but I don't want to just give up. I keep trying to find new ways of doing things if I can. Still, I can't help feeling sorry for myself for having to use a wheelchair sometimes even though I know there are people who are worse off than I am. Like most of you, I have always been so active and it's hard to accept the fact that that life is gone forever or until maybe a cure is found. I don't want to totally give up hope. I have been on the guafenesin program since mid-May and am hopeful that in time this will help.

    Sorry this is long, but just needed to let out some of my feelings. Thanks for listening!

    Ellen
  2. ranger

    ranger New Member

    Hi Ellen,
    I recently went through the same experience and I did use a wheelchair the next day, as we were on a vacation. I was sore, tired, actually pretty lousy feeling that day. But this place was something I had come to see, 3,000 miles away. (I'm still recovering from the road trip). This was in July. I thought I'd feel guilty but I didn't. I knew how I was hurting. I sorta thought I didn't deserve it, when I am able to walk...but the wheel chairs that people rent, are there at these places for a reason. They know some people can't be on their feet that long. I imagine otherwise, the people who can't walk, have their own wheel chairs. I hope I won't have to too often, but like you said, in order to get out there, we can do what it takes. I did it and I'm not sorry. I plan to again. So there!, normal people. LOL
    Ranger
  3. Lexied

    Lexied New Member

    and I know how you feel. It's like you don't want to "give in" to FM, but you also don't want to give up life and not be able to actually enjoy going places. I've had FM/MFS for 2 1/2 years and I have gone through all the pain and emotions that go along with it. I became almost completely captive in my own home because I was not able to endure the pain and fatigue I experienced when I did go out. My husband was suffering too because he always felt like he needed to stay home with me. I felt SO guilty! Not only was MY life passing me by, but HIS life was too! He kept telling me over and over to let him push me in a wheelchair when we went somewhere for any length of time or somewhere we would have to walk a lot. One day I FINALLY gave in and at first I felt guilty, ashamed and weak but after I "rode" around for a while I didn't worry so much about what everyone else might think... I was ENJOYING being out with my husband again! When I got home I wasn't soaking wet and exhausted like I used to get. I don't always use a wheelchair because I know it's important for me to move as much as I can, but I will use it if I really need to and I'm NOT going to feel bad about it!! I applaud your "Courage" and am so happy to know that you have a loving husband like I do that just wants you to be as comfortable as you can be!! I also pray that you will get better every day!

    Love - "Hot Wheels" LOL
  4. tansy

    tansy New Member

    for years. It is my enabler and means of independance.

    Most of us go through feeling we are giving in or admitting defeat when we realise this is necessary for us. The GP I went to at that time put me straight, in fact verbally he was quite brutal, but it made me realise how ridiculous my concerns were.

    As a single parent using a powered wheelchair made significant difference in both my son's, and my own, quality of life.

    If you need one to get out and about without an awful payback then do so. It's not giving up hope or being negative, it's being honest with yourself and practical about how you can participate in activites.

    Go for it.

    love

    Tansy
  5. EllenComstock

    EllenComstock New Member

    for your words of encouragement. Yes, you are right-I shouldn't feel ashamed or guilty because I need to do this sometimes. I guess I should look at it this way. If the wheelchair enables me to go places that without it I couldn't go, then it is actually helping me to live my life more to the fullest. I guess most of us hate to be seen or looked at as handicapped. I have to admit, too, that I wonder what people will think when they see me get out of it and walk around like I am "normal". But you are right, I shouldn't worry about what other people think. I know I can't continue to go places and then pay the price later with terrible pain.

    Thanks for your support.

    Ellen

    P.S. I am happy to see that more places have wheelchairs you can rent. I guess I would have to call ahead of time to be sure. Nothing like getting there and no wheelchair.
  6. Mar19

    Mar19 New Member

    I've had a wheelchair that I use on and off for a little over three years now. My insurance company supplied it, so check first and see if yours will do the same.

    In the beginning I was able to push myself, but now my arms and shoulders have been affected quite badly and I can't push myself for any length of time.

    What I do sometimes is push myself for a bit and alternate with pushing the chair, using it like a walker. (Makes a great place to put stuff if you're shopping, BTW.) I also give whoever is with me a chance to push me, or just to put the foot rests up and "walk" the chair a bit -- great for bookstores, you can sit and browse at eye-level, and move along a little bit at a time down each aisle.

    Using a combination of all the stategies makes me feel like I have some control in the matter. I'm still not crazy about going out in the chair, but most of the time it's my only option. Hope everything works out for you.

    Love and blessings
    Mar
  7. HuggyMummy

    HuggyMummy New Member

    following a v long, v hot, v exhausting day-trip to Paris (which followed a week-long, hot and tiring camping holiday in Cornwall, UK). Been suffering a major 'exhaustion' flare since, and I've decided it's really not worth the pay-off anymore!

    I'm only 42, look well, no 'major' illness (according to the UK criteria), and I know my family already believe I'm not trying hard enough - but what the heck - if they want me to accompany them on trips, then they'll have to accept a wheelchair, too! (And I'm going to get an Aero bed for camping - thin 'airbeds' are downright dangerous for those of us with fibro.)

    Thanks for yr encouraging example:)

    All the best Ruth
  8. sunshine8957

    sunshine8957 New Member

    Ellen I've had to use a wheelchair off and on for over a year now. My friends would take me to the Super Walmart and help me get necessities - those little baskets don't hold enough so some one would follow me with the big cart.

    If I am having a bad day, but have to go out, I will always get a wheelchair. Shopping is hard enough, there is no reason not to make it a little easier.

    If I have to travel, usually alone, I always request "wheelchair assist" - my running days are over - these airports get bigger and bigger and I certainly can't handle all the hussell and bussell trying to catch a flight. FYI - did you know that if you are a little late and are close to missing a connecting flight, they will hold the plane for you - but not for the "NORMALS".

    I don't know if you have a handicap plate or tag, if not, ask your doctor to write to the request and go to the clearest Motor Vehicle Dept. Being able to park up close the a building is soooooo much easier.

    So forget what others may think and take care of yourself as you see fit - which in the end will only help you with your pain.

    I'm sending you lots of soft hugs.]

    Take care of YOU!

    Hugs,

    Sunshine8957
  9. jadibeler

    jadibeler New Member

    all for this thread. I'm going to print out every message and send them all to my cousin. Maybe these experiences will encourage her to change her thinking - a mixture of pride and not wanting to "give up".

    She does not have a computer, so I pass along everything I'm learning to her. So this board is helping both of us.

    JoAnn
  10. Jackie41

    Jackie41 Member

    I have exactly the same problem. Although I rarely use a wheel chair, I frequently use two forearm crutches for the same reason, and have been doing so for almost a year. I went through all the emotional turmoil that you must be going through, but I found that most poeple are more understanding than I thought they would be. I no longer feel self-conscious or guilty or any of the other unproductive emotions. I look on the bright side. I can now walk much farther and go more places than I could before, and get more exercise as well. Who cares what anyone else thinks.

    Hugs

    Jackie
  11. pixipip

    pixipip New Member

    I was soooo stubern and didn't want this DD to beat me but the pain and especially the fatague got so bad a couple of years ago that I couldn't even get out of bed without help,I could just about walk for a minute or so "slower tham a snail,LOL!"
    Then the summer hol's came round and I'd promised to visit friends who I hadn't seen for three years since before I got really sick.
    They absolutley went bonkers with me for not letting them know how bad I'd got and for being my own worst enemy when I could make my life so much easier by using a chair, he ran a mobiliy shop, he went right out and brought me a powerchair, he's such a darling, I'm sooooo lucky I have some truely wonderful freinds! I've never looked back it gave back some quality of life, at first I had to use it all the time but slowly I've learned how to manage my self and when to and not to use it, it's esencial if I need to walk for more than 20-30 minutes or so without any chance of rest, it's my pal!

    Sorry so long!
    Love & Light,
    Jacqui.