DENYING its existence

Discussion in 'Fibromyalgia Main Forum' started by toniad, Sep 28, 2002.

  1. toniad

    toniad New Member

    I'm in a flare up today, I don't like what's going on, and I don't know how to let it just happen, I have to get angry and try to figure it out every single time I go thru this. I think I can "think" my way out of FMS. I think I can figure it out and prevent it from occuring at all, or cure myself from it. I don't want to acept this as part of my life, even after 3 years of this. I keep telling myself I am not sick, I don't have a disabling disease, its not real. After all, "they" can't find it, so it must not be real right?

    How do you all accept it? I get tired of the mental battles with myself. I won't go outside like this, because I walk like a freak. I feel like a freak. I feel less human than the rest of the world. I hate myself on these days, as if I did something horribly bad to get this way? Does anyone else go thru this?

    I'm so angry, can't stop crying now. I want this out of me. I'm so damn (excuse me please) angry.

    I told my boyfriend I do not want to live this way anymore, and he said, well, unfortunately you don't have much choice. Why is that? Am I being overly naiive in thinking I shouldn't have to live this way? That it is entirely unfair that I do live this way? That I am 29 and should be living a FULL life still? And not worried if I walk like I have MS or something else? I also told him I don't know how to have a normal life like this, when I'm unreliable and undependable, from one minute (basically) to the next, he said I have to make this a normal part of my life. WHY!!! I don't want to! I shouldn't have to.

    When I get like this, I walk as if I have MS or something? A lot of people have asked me if I have MS when I do go out in public like this. I asked the doctor why I have days when I walk like this, and she said maybe I have NARCOLEPSY?????? WHAT??????? I am definitely NOT a physician, but Narcolepsy????? I can't imagine why she would say that to me? I knw I am probably not getting the medical care I should, but I'm so tired of finding a new doctor and going thru this, and being treated as if I'm insane and having dillusions that I hurt and being told they have no idea why I walk this way. I don't have the energy or desire to seek another doc now.

    Thanks for listening you guys, I am so glad to have a place I can come and spew likthis.


    tonia d.
  2. toniad

    toniad New Member

    I'm in a flare up today, I don't like what's going on, and I don't know how to let it just happen, I have to get angry and try to figure it out every single time I go thru this. I think I can "think" my way out of FMS. I think I can figure it out and prevent it from occuring at all, or cure myself from it. I don't want to acept this as part of my life, even after 3 years of this. I keep telling myself I am not sick, I don't have a disabling disease, its not real. After all, "they" can't find it, so it must not be real right?

    How do you all accept it? I get tired of the mental battles with myself. I won't go outside like this, because I walk like a freak. I feel like a freak. I feel less human than the rest of the world. I hate myself on these days, as if I did something horribly bad to get this way? Does anyone else go thru this?

    I'm so angry, can't stop crying now. I want this out of me. I'm so damn (excuse me please) angry.

    I told my boyfriend I do not want to live this way anymore, and he said, well, unfortunately you don't have much choice. Why is that? Am I being overly naiive in thinking I shouldn't have to live this way? That it is entirely unfair that I do live this way? That I am 29 and should be living a FULL life still? And not worried if I walk like I have MS or something else? I also told him I don't know how to have a normal life like this, when I'm unreliable and undependable, from one minute (basically) to the next, he said I have to make this a normal part of my life. WHY!!! I don't want to! I shouldn't have to.

    When I get like this, I walk as if I have MS or something? A lot of people have asked me if I have MS when I do go out in public like this. I asked the doctor why I have days when I walk like this, and she said maybe I have NARCOLEPSY?????? WHAT??????? I am definitely NOT a physician, but Narcolepsy????? I can't imagine why she would say that to me? I knw I am probably not getting the medical care I should, but I'm so tired of finding a new doctor and going thru this, and being treated as if I'm insane and having dillusions that I hurt and being told they have no idea why I walk this way. I don't have the energy or desire to seek another doc now.

    Thanks for listening you guys, I am so glad to have a place I can come and spew likthis.


    tonia d.
  3. jeanann

    jeanann New Member

    you are not insane. I do the same things. I hurt so bad today. I have already take two doses of pain meds. Woke up so early pain has been sooo bad. At 29 I was running 10 miles a day, working on my BA degree and working full time. I had lots of energy. If I had been cut down earlier I would really have freaded. So now this has been going on for about 5 years, I am 48 now. I still get mad at this disease. Been diagnosed for one year and I get in to some denial still. I just want to paint my kitchen. Is that such a big deal? when i feel the way i have been yes it is a very big deal. and i cry. I konw that getting as upset as you are can only make things worse. Try to settle down, take a bath, go get a massage. Rest, get a movie. Try not to fight it. I just have to surrender. This flare will pass. I am so sorry you have to go through this, you are not alone. Love jean ann
  4. toniad

    toniad New Member

    I'm greatful to this board for many reasons, especially on days like today. Thank you Jean ann and everyone else who listens to me while I get like this. I have to concede to today's flare up. I have 6 classes now, studying for my Assoc's in German/Education, I will graduate in December, if I can make it til then. I need you guys.

    Love,
    Tonia D.
  5. Ness

    Ness New Member

    Tonia:

    You are not alone in your feelings. I too have been in a flare that has lasted several weeks...I am 41 and I use to be a Personal Trainer strong, lean, boudless energy.

    I know the FIGHT oh too well...I know the BATTLE inside your head....I have trouble walking too. and I can't exercise in the same capacity as I use to and that in itself just is so hard to swallow...I do 30 minutes on the treadmill sometimes and I feel like I may not make it to the car to drive home.....I FEEL YOUR PAIN!!!!..sometimes I look like an old woman shuffling down the hall at work..I know the looks from others, the talking behind your back ( she looks fine...she just wants attention!!!!)

    Yeah, like we all want to live with pain 24/7 that doesn't go away with pain meds that would knock most people, especially women my size ( 5'1'') on their faces out cold. And walk a funny walk just to get attention....NO WAY

    I know your frustration, your embaressment...I run into people all the time that knew me when I worked at the Health Club. some are even some of my old clients ...They look at me like What happened to You ??????


    Tonia, I have found that fighting that this DD exists justs makes the pain worse...WE can FIGHT IT BY NOT GIVING IN!!!!!! BY fine tuning our lives so that we CAN LIVE and ENJOY.......WE NEED TO FOCUS ON : TAKINK CARE OF OURSELVES!!!

    1. What we have in our lives.
    2. What we CAN DO
    3. How far we have come.
    4. That we can Walk
    5. Do YOU FEEL IT NOW!!!!


    Let's all CELEBRATE LIFE TODAY>>>WE ARE ALIVE!!! I know that it is so very hard to ENJOY sometimes but even though we live with pain we LIVE....I Am sending a GENTLE HEALING HUG TO YOU ALL. You are not insane we are all right here beside you facing the Fibro Monster everyday with you !!!!

    I didn't realize that I had so much to say... This was healing for me..Thanks for listening.

    Peace and Rainbows
    Ness
    [This Message was Edited on 09/28/2002]
  6. LindaH

    LindaH New Member

    I can say I truly know how you feel. I was diagnosed a little over three years ago. I still want to believe this is a nightmare and I will soon wake up and be the old me. I really miss me and somedays I wish I had just a few hours to be the old me. I know that is not likely to happen aoutside of a miracle. Most of the time I remember that I have to limit myself because my body won;t let me forget any way. But there are a few times meds will make me feel a little more like doing something and there I go forgetting my limits. Then I pay big time. I think that is a normal response to want to have a normal life. But who is to say what is normal for us now. I wish for you Tonia, all of us in fact better days and loads of joy. I keep praying that someday soon some brilliant person will find the way to help all of us who suffer with these awful afflictions. God's love and much love, Linda
  7. JP

    JP New Member

    Hello Tonia,

    I have not come to terms with this stuff either. I got the news about 3 months ago. I have not been well for a number of years however. I never told my doctor what was going on. I thought I was just burning myself out with my work and school schedule. I kept getting worse and worse with increasing fevers and night sweats, no sleep and major pain. Once I finally talked with my doctor, she started testing and found some positive labs and recommended a specialist. So, here I sit in disbelief. The specialist said that I had FM on the first visit and recommended more tests to explore some of my positive labs. I will start with more tests pretty soon I guess.

    Anyway, hang in there. Life is a gift...just doesn't feel like it all the time.

    Hugs,
    Jan

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