Does it matter less to you WHY you have FM?CFS?

Discussion in 'Fibromyalgia Main Forum' started by Bambi, Nov 28, 2005.

  1. Bambi

    Bambi New Member

    I don't know WHY but I am getting to where I care less about why I have FM and less about when they will find a cure. Not that I wouldn't LOVE it, but I'm just not all militant about it anymore. All I ask is to be kept reasonably out of the worst of the pain and I want to work ever
    more toward better diet and more movement. I DO get down sometimes and do the "Why me?" thing, but more and more I think "Why not me?" and don't dwell on the why's.

    I've written SO many letters to websites I would get angry at, like Mayo's, I bombarded them with letters for a year when their website on FM was worse than it is now. It's still not perfect but it was BAD. They got so sick of me I guess they finally did change it (not because of me I'm sure) but wrote me and asked me
    to check it out to see if it was better. I thanked them and told them it WAS better but still not perfect. I wrote to
    Oprah, Montel, back when Phil Donahue was on (I wasn't gay though so I guess I didn't fit his agenda at the time, if that's offensive PLEASE remove it, no sweat. I have nothing against gays per sa, so it wasn't meant to be a slam). I wrote to my Senators and Congress and even Mrs. Clinton and Mrs. Bush. I wrote and wrote and wrote, got few responses and finally quit.

    I fought the fatigue and worked through the pain and caused myself more pain in the process. I didn't pace myself, didn't change my habits, didn't worry about what I ate and was just plain MAD all the time
    over the FM and how it was changing my life.

    Suddenly it just doesn't matter as much anymore and guess what..I have less fatigue, less pain and less of the madness. Oh, I have ROTTEN days at times and I cry and fuss and carry on sometimes, but as a rule I think I've just accepted it like you would a sixth
    finger. It's there and it's not going anywhere any time soon so why fight it? I have a great (at least compassionate and
    willing to buck the system) pain management doctor, I pace myself, I nap if I want to, I dance with my Chi's for
    exercise, I sing all day to myself (I even make up! and I play all the parts..whoops, maybe that makes me a nut case? Oh well)!

    I worry more about my 33 year old daughter being in the pain than about myself, since she has to work and try to
    live some semblence of a normal life the rest of the time. I get lonely, that's the WORST part of this whole thing now. My friends all died in 1997 when my mom did (around the time) and I haven't been able to get out and meet new people and don't know if I want to invest the time in separating the wheat from the chaff again. And I think I can't spell cat today!

    My husband has to work and I don't see so much as the mailman during the day. My daughter lives close but feels bad most of the time and when she doesn't has things to do with her husband alot. They do come around about once a month for a
    few. I've met some people online from an
    old FM chat room and unexpected places and keep in touch with them, some I don't
    remember WHERE I met them. But my best friend lives in Colorado and her health keeps her there and mine keeps me here. So lonliness is the number ONE worst thing about all of this for me.

    Does ANYone feel sort of like I do?
  2. Bambi

    Bambi New Member

    Bump! Bump!
  3. Bambi

    Bambi New Member

    Bump! Bump!
  4. Tiels

    Tiels New Member

    I agree~~ there's not much we can do, except stick with the neds that help the most , and just go from there~~ always gonna' be "those rotten days" , but you will feel betternot obcessing, not worrying, not fighting, I'm not!! saying to accept it, but be gentle and peaceful to yourself, and the good days are just that!! good and really good!! :)
    God Bless You!!
  5. pepper

    pepper New Member

    I have watched my now best friend as well as myself deal with these DD's for 13 yrs now. We both fought it terribly at the beginning. On top of that we both had extreme stresses (she divorced and moved to this city to be near family, I went through the severe illnesses of several family members and the deaths of both my parents).

    We were both much worse off because of the stubbornness in fighting these DD's - what did we do? why did we get sick? why me? etc. etc. That is not a great place to be.

    Now we have both learned to accept it and are dealing with it in a much saner way. We are both trying new treatments all the time but have learned to "roll with it". We can celebrate our good days and try to make our bad days tolerable.

    I think when we get to this point we have a better chance at eventually beating it, don't you?


    P.S. I love your description of your "Occupation". I think mine should be "Couch ornament".
  6. unbalanced

    unbalanced New Member

    The very first time I was told I have FM/CFS I fought it. I threw a fit, there was no way I had THAT! My mother also has FM/CFS. I did accept it eventually & decided that it was someting I had to live with & learn how to cope with. I find different ways of coping with the pain, but to be completely honest if it weren't for the pain meds I probably wouldn't be able to cope at all. The meds make the FM bearable, & easier to deal with all the pain. Less focus on why, definately helps!! Excellent Question!!
  7. hopeful4

    hopeful4 New Member

    Bambi, having this illness is no picnic, that's for sure. It sounds to me that you have moved through most of the anger, denial, and grief that we all experience (and which cycles back at times, too), and are more into the acceptance of how things are, and finding ways to manage through it.

    For me, there remains a balance (after all I'm a Libra!) between accepting and managing how I am now, and yet continuing to work at finding out why I have CFIDS/FM. Most recently, I was surprisingly diagnosed with Lyme Disease. Learning this is a huge breakthrough for me and many others with CFIDS/FM.

    So, in my difficult times, and when I'm fighting the world and myself, I fall back on the Serenity Prayer, I hope you don't mind me sharing it again here:

    G-d grant me the serenity
    To accept the things I cannot change
    Change the things I can
    And the wisdom to know the difference.

    About the lonliness, yes, it's very tough. No easy answers on this one either. Friends and social interaction are something we all's even good for our immune systems! Something that's made me happy is when my cat was with me all day (he passed on this summer). Recently my adult son got a puppy, so when he comes to visit with his side-kick that's a very happy day!

    Hugs to you,
  8. hunterwillow

    hunterwillow New Member

    I also don't think much about "why". Everyone has a cross of some sort to bear. If not this than something else. I figure I gotta deal with the cards that were dealt to me. All we can ever do is the best we can with what we've got.
  9. Bambi

    Bambi New Member

    as "goofy" as I did before I think. It gets to where, when you are alone enough of the time, where you start wondering if you are alone in how you feel. Not that I don't wish NONE of us had to feel ANYthing about these dd's!

    I know the joy that can come from our fur pals, I have way too many but that's other people's opinions and not mine. I have lots of love and plenty of time to devote to each one in turn..and they give me SO much in return. Right now I have two Chi's and my tabby cat wrapped around me in various ways, later it will be a different cat or two and another or different dog(s). They take turns coming to my recliner and begging to be lifted up and I can't resist.

    I too love the Serenity prayer. I had a tough time with "fogs" for about a year until I started taking the BComplex, and it was a real test of the prayer, just trying to remember it then was sometimes hard on my serenity. LOL! It is such a simple prayer but says so much.

    Tonight I am having a sudden flare of the Arthritis in my hands, feet, knees and hips..and in the lower part of my spine. My middle finger is so swollen it looks like a large sausage.

    We're having a short cold swing tonight that is supposed to leave tomorrow. Sometimes that will set things off and the next time not. SO, I have those Salampas pads wrapped around my fingers, the Lidocaine patches on my hip and spine and I'm wrapped up in my flannel p.j.s and throws like we are having a blizzard or something. With the added pets, I feel very cozy.

    Thank you again for replying to my question. I appreciated all the comments and agree with them all too.
    Have a good night and tomorrow! Bambi
  10. Bambi

    Bambi New Member

    Bump! Bump!
  11. tigger5

    tigger5 New Member

    I'm a newbie to all this...just finishing the denial stage and starting to realize that pacing myself is what it's going to take to get thru it. (And I do mean "thru it" cause I AM going to get better!) Loneliness has really set in especially since it's the holidays and I just moved a few months ago and haven't had the energy to make new friends. Thank goodness for this board. It's already lifted my spirits a bit.

    Hope you come out of the blues!

  12. sharon5650

    sharon5650 New Member

    the serenity prayer is always great in any situation, I just love it. Yes I agree, I do accept it!! but will never give up working on getting better. As for the pain part I have so far so good got that under control lately. Now working with the Fatigue, infections, and listening to all what is told to me, which I never did before. I always thought for some reason I didn't have to do it your I am going to be seeing a naturopath to start treatments ....the IV theraphy (meyers cocktail) should have listened along time ago....just to dam stubborn.......sharon5650