Discussion in 'Fibromyalgia Main Forum' started by orachel, Sep 16, 2005.

  1. orachel

    orachel New Member

    Hi there!

    Wanted to touch base with you about a couple things..hope you don't mind the mostly off topic post! First thing, thanks for getting in on the "getting to know you" seem like a very interesting person!

    Secondly...I saw in your response to Rbecca47's post "need to vent" that you mentioned having terrible mixed feelings about almost feeling like you have to "let it all hang out" in terms of your pain, in order to gain any understanding of your condition. I think you mentioned thinking it was a bit "sick"...I just wanted to say, I'm so right there with you on that!

    Its terrible, but I'm constantly feeling like I'm trapped between trying to totally hide my symptoms (have real hard time walking...kinda hobble due to hip/knee pain) to feel like appear somewhat "well" and not make people feel sorry for me, or get really nosy (i'm pretty young, so people are always stopping me and asking me if I hurt my leg!...just not up to the questions sometimes!) and letting people "see" exactly how I'm feeling and how much pain I'm dealing with in order to get a teensy weensy bit of understanding or even some oft needed help! But, then I get treated like a pitiable "cripple" (I am not fond of that word, at all, and people with that attitude make me nuts!). It's really an emotional rollercoaster, and quite frankly, you are the only person who I've seen feel that way other than myself, so thanks!!!

    Also, I just found a GREAT article that addresses some of this, and made me feel a little stronger when tackling this particular issue mentally and physically.
    Its called "Will I Ever Be Normal Again" Karin Amour. I wish I could remember where I found it, but it was somewhere on the net....If you're interested and do a search for "fibromyalgia, karin amour" you might come up with it.

    Anyway, just wanted to let you know you I appreciated your sentiment, and it was nice to see I'm not the only one who feels that way!


    Oh, and Fog made me forget something...You mentioned having trouble holding up a book? Me too, in a big way! I've found a few solutions...hopefully one will help you!
    First, I have a couple flattish squarish throw pillows (like old slipper pillows, from the 30's?). If I'm on the couch or sitting up in bed, I can pile 2 of them on my lap...totally light, cuz they're pillows! If I put the book on top, its right at eye need to look down, or hold book up. Also, office supply stores sell these things designed to hold up documents/proposals. They;re inexpensive, and I found one that's strong enough to hold up most books. It's like a stand, and you "clip" the book to the back cover, and book is upright, right in front of your face. This is great if you're sitting at a desk or table. Both mucho mucho helpful to me. Hope you might be able to use one or both. My worst days are when I don't feel up to reading!
    Hugs.[This Message was Edited on 09/16/2005]
  2. Mareeok

    Mareeok New Member

    Hi Rachel, thanks for the kind words. I was hesitant to write about 'showing the pain' but then figured if anyone could understand it would be the people here. I'm glad it helped you. You showed me it's good not to hold back so thank YOU. It's funny, I hid my pain whenever my husband was around and didn't realize I was later hiding it from everyone else too which ended up back firing on me because I look normal. I know how you feel about not being up to the questions sometimes. Me too. It's exhausting.

    Yes, I also use pillows to help hold up books and magazines. I also have a twin size down quilt that I punch and make a 'nest' with that is very light and very soft and suppotive. I use it for my legs in bed since I can't have one leg resting on the other. The pain is too severe. I can use it on my lap with a pillow on top so I can read some.

    I will look up the article you mentioned. It sounds like a good one. Thanks.

  3. orachel

    orachel New Member

    ...a soul sister here whenever you need/want one! If you can't find that article, lemme know. I can email it, but don't know protocol to giving email addresses...]

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