Mind Over Matter Doesn't Work!

Discussion in 'Fibromyalgia Main Forum' started by cressida, Nov 12, 2008.

  1. cressida

    cressida New Member

    I just wonder if anyone else has this problem. You know how SO many people either don't believe or understand our pain. Well, I spent so much time trying not to believe it either. You know - I did things that hurt so much, because it was easier than having to explain how much you KNOW you're going to suffer later (when no one is watching). 'Oh - why don't you just exercise a little?' 'UM - because tomorrow I won't be able to move, maybe, and I'll feel worse than ever'!!!

    I thought that I'd listen to all those 'experts' that seem to know what's good for me, but in the end it has just caused me so much misery. I'd wake up every morning and not even be able to walk, and I'd think I should be able to 'shake this off'. I'd think to myself that if this weren't as bad as I'm making it out to be, then what the heck was happening to me every morning when I was in so much pain I had to stumble to make it to the bathroom. If it were 'all in my head' then certainly I should be able to control how I felt every morning. It's also hard to act as though everything is fine and then have it thrown in your face that you seemed fine, so why all of a sudden you can't do this or that?

    I'm realizing that I have to be truthful to myself AND others about my limitations, regardless of how it may LOOK. If I keep myself on an even keel, I can deal with the pain and discomfort at a level that's bearable. If I step outside those bounds, and push myself harder, I really suffer.

    All of this makes me feel it's easier to be a hermit, than it is to seem so limited to other people, to the point where I would come across as a complainer. I don't complain to anyone unless they expect more of me than I can do. I mostly suffer in silence, since I don't want to be a burden. The reason I'm most glad that I am on disability is because it was too hard to constantly explain that even though I could look fine and force myself to walk fine, regardless of the pain, that I wasn't 'fine' at all ...

    I do miss having more interaction with people, but the price seems too high to pay.
  2. cressida

    cressida New Member

    Towards the end of my working, I was away a lot from work. I tried to explain things to my co-workers (whom I'd worked with for a very short time in a temporary new position). My (female) boss, decided that she wanted to talk to me. I had already gained a lot of weight at that time (due to drugs) and it was difficult for me to run around - the way I was having to do in my job already.

    She said - 'let's have a chat - we'll walk down to the market at lunch'. What could I say to my boss? 'No - I can't walk to the market'??? So I walked to the market with her and she was motoring. It was all I could do to keep up with her, and I felt that she could see me struggling. I felt she was punishing me or trying to prove to me that I just needed the exercise. I thought I was going to collapse, but I forced myself. It was a horrible experience but I could see that his woman didn't have an ounce of compassion, so how could I have explained things to her?

    I just couldn't deal with things like that at work.
  3. Janalynn

    Janalynn New Member

    Oh, if you only knew how many talks I've had with myself about mind over matter! I AM a firm believer in positive attitude, how much power we have mentally - also self-fulfilling prophecy.
    I caught myself saying something yesterday...'oh next Friday is going to be horrible cause I have such a long day at work on Thursday" (working all day then hosting a huge Open house party at work". I thought, I shouldn't say those things to myself.

    Then I thought - it's a reality. I have tried SO hard to talk myself out of pain it's ridiculous.
    I too try not to complain, but I'm also not a good faker. I have a hard time saying "Good!" when someone says 'how are you?", I say "fine", and they all know. I need to stop that - I personally hate being around downers and I don't want to be one. I really am trying to set a goal for myself to not have to let everyone know how I feel - it's not necessary. - my family, close friends etc. - yes, they'll know the truth. I remember working with a woman who had hell going on in her personal life and she walked in the office every day with a huge smile on her face and everyday WAS great because she felt it was a new day and she was alive. WOW - was it ever wonderful to be around her. Years later I worked around another woman who had a scowl on her face everyday and no one wanted to even say "how are you". I do not want to be the latter.

    I'm probably getting a little off topic here. Sorry. I do realize that when I have a smile on my face, I DO feel better. It's all a matter of am I able to put a smile on my face. When you hurt like hell, when you're so tired, overwhelmed, depressed and the host of other things this illness brings, it IS difficult.

    Regarding the 'hermit' comment. Funny, when I went to a pain clinic (once) the dr. had fibro also. One of her first comments to me was "I bet you stick close to home." YEP. I go to work because I have to. I rarely go anywhere else. I have no motivation, no desire. When I have gone out for breakfast to celebrate a bday or something, I realize that being out does feel good. Ahhh- the real world.

    I've got a lot of mental work to do. I still think I could do a lot of healing mentally. (nothing has happened in my past) I mean, that every chance I get, I should not let this dd rob me of any joys in this short short life. Now, if I just had the energy. =)
  4. jasminetee

    jasminetee Member

    I know exactly where you are coming from. I feel the same way with my in-laws. I've had to limit my exposure to them. I also just don't have the energy to deal with people, even ones that are totally there for me and understand. I struggle with this every day but I always come to the same conclusion that I know I'm doing the best I can and God knows it too and if that's not good enough for others that's just too dang bad.

    I do think your boss was trying to make a point to you but I think she means well. We don't look ill and besides when you're at work you're trying to look and act well so she has no idea about what you're really dealing with and how you feel all the time. I'm sure she thinks she's helping you by getting you out and moving etc.... It's actually sweet of her to do that and go with you, too bad it's exactly the opposite of what we need.

    Part of the problem is that most sites that come up when one searches for CFS and FMS say that exercise helps us so people reading that think it does. My MIL has emailed me an article stating that we should exercise and it about sent me through the roof because I had just explained our situation to her and even told her what we are up against with our organizations saying this is what we need to do and how wrong they are. We really need to educate our own organizations and the medical profession about exercise intolerance with our DDs but it's a major uphill battle.

    I think with your boss just let her know when it comes up that you can't walk right then. Tell her whatever aches and pains you have right then or tell her you feel ill that day. These DDs really put us on the spot... it's one of the hardest things to deal with.

  5. robin1667

    robin1667 New Member

    You have put into words how I feel!!!!!!! I thank you for this post!!! I'm going to print this off and give it to my Dr's, my kids, my friends!! Again THANK YOU!!!!