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    Old 12-29-2004, 06:18 PM   #1
    Toodle
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    I can feel myself losing it all

    I'm so sick of this disease or whatever it is. I feel so terrible everyday & it's only getting worse. I can sense my husband's annoyance with me. I'm always so tired and in pain and I know he doesn't truly understand even though he says he does. I think he's sick of this - why would he believe anything is wrong with me there are so many symptoms. I don't want to live my life like this anymore and I feel so guilty with regards to my husband & daughter. I can't be all that I want to be to them, I just don't have the energy & I hurt all the time. Where do we turn to get better. I need to get better - I feel like I'm dying a slow death & feel I won't live much longer than a year anyway. I'm finding it hard to keep the faith anymore. My boss has sarcasm toward me. She is always talking about how she hurts, it's like arthritis in her hip or something. Trust me, she has no idea how I feel, not even a clue. It's just one thing with her, for me & many other sufferers it's an endless list. I think her point in talking about how she hurts is to say how you just have to go on. No clue, I tell you. I'm really starting to be bothered by the thought that people really don't believe me.

     
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    Old 12-29-2004, 07:01 PM   #2
    dancergirl587
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    Re: I can feel myself losing it all

    I know what you mean I have heard the phrase "just work through it and keep going" so many times! I know you're scared but you aren't aloan! You can and WILL beat this! Talk to your family, let them know how you feel, and hey find out how they feel. Get them to read some posts here on these boards of what this is like to live like this, they will be a lot more compassionate if they understand it better! *Hugs* God bless you!

     
    Old 12-30-2004, 06:45 AM   #3
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    Re: I can feel myself losing it all

    hi charl. i totally understand but we have to keep going. just think at least you have been diagnosed. i havent yet and could easily break down again but im not gonna. i have not long come off my tabs and im better, not gonna let this take over again. do you symptoms never get better? mine are different day today. big hugs, april xx

     
    Old 12-30-2004, 07:17 AM   #4
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    Re: I can feel myself losing it all

    dear char,
    the only way anyone can "understand" is to have it. would you truly wish that on your family and boss? don't waste your time comparing your pains with someone elses. we all have pain and to each of us it really counts.
    i think it is important to ask yourself what it is exactly that you expect of everyone around you. then ask yourself if your need is one that you can fulfill yourself. most times we can take care of our own emotional needs if we look deep enough.
    i have found that if i give to others the treatment i would have for myself i usually get it back ten fold.
    perhaps today you are just blowing off steam? if you really want to be dead in a year you can do it. is that really where you want to go? go stand in front of your mirror and ask yourself who you want to be. do you really want to be one of the lost ones? you have a choice. you are sole owner of your mind and your mouth. just because your body is a mess does not mean your mind has to be a mess too.
    examine the tone of voice you use. what does your body language say? you and your body are one. find your peace with the body you have today. tomorrow is forever away and out of your reach.
    and girlfriends, this is not something you can "beat". you will have to embrace it and the reality of it before you find the joy that even children with cancer find. i work with death and dying and survivors, trust me, we have it easy. sure, our life will be a long painful journey, however we will see our full life and watch those we love grow.
    it is who we are on the inside that we are remembered for, not what our bodies did.
    i am sending you a bath tub full of my joy that you may bathe in it and find your joy.
    peace,
    bluelakelady

     
    Old 12-30-2004, 07:30 AM   #5
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    Re: I can feel myself losing it all

    Hi Charl, I can feel your hurt both physical and emotionally. I'm just
    hoping and praying that in the near future something will be discovered
    that will put an end to the constant pain. Doctors are as confused as we
    are with new aches and pains and family just gets tired of hearing us
    complain. In my early years of nursing, we were taught the pain was
    psychosomatic , so it was treated that way. Now doctors are beginning to
    listen to us and maybe help is just around the corner. Pep talks are not what
    we need.....hope is what we need.

    Last edited by bilij; 01-06-2005 at 09:13 AM. Reason: wrong word

     
    Old 12-30-2004, 08:07 AM   #6
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    Re: I can feel myself losing it all

    Charl,
    {{{{{{{{HUGS}}}}}}}}}}} First and foremost you need love and compassion - and you can find that here with us. We all understand how you feel and have had these same thoughts and feelings that you shared with us on your post. But, bluelakelady has valid points. You have to control your own life, your own feelings, your own attitude, your own body language. How you feel projects onto others. Nevermind the pain other people are in - how much they hurt, what they hurt from. Your own pain is what you need to focus on - not comparing what we have with what others have. We are all unique in our pain - there is no comparison. You don't really want to be dead in a year - you have a daughter to love and raise. Attitude is everything Charl!!! I know you probably don't want to hear that, but it's the truth. Your atttitude can change everyone around you - for better or worse. I often take a deep breath and think about myself. Have I been an unbearable whiney baby???? If so (and we all have days where we whine!!) then I try to change that. Keep your chin up, Charl... remember that we're here for you....
    God bless, Jen

     
    Old 12-30-2004, 03:35 PM   #7
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    Re: I can feel myself losing it all

    My heart goes out to you! I have been feeling the same way. I just can't take this pain anymore. I have lived with this for sooo many years and it just gets worse. I have tried so many different things to try and help this and maybe they do for awhile but they never have a long standing impact.I am at the end of my rope and although I am single and don't know your pressure and guilt from a family, when you need a shoulder to cry on and no one is there, it is very hard too.
    I truely sympathize and hope things can turn around for you.
    God Bless
    Sufferann

     
    Old 01-03-2005, 08:10 AM   #8
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    Re: I can feel myself losing it all

    dear sufferann,
    you can take the pain. you got thru yesterday and you will get thru tomorrow. at some point in this illness you chose to live.
    does pain run your life or is it a partner who walks beside you? how you look at yourself in the mirror will have a great deal to do with how you live your life. are you a survivor, an embracer of your life? or have you chosen the path of helplessness and fear.
    you can take the pain. you are doing that right now, this very instant. the question we all have to ask ourselves is, are we doing it with style? are we setting an example we would want others to finds strenght in and want to emulate? you have a rare opportunity to teach. we all do. what do you want those around you to learn from watching your journey? you are young. do you see the years stretching out ahead? years of opportunity. to learn, to teach, to evolve.
    you can take the pain. you have more power than you realize at this moment in time.
    peace,
    bluelakelady

     
    Old 01-03-2005, 05:03 PM   #9
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    Re: I can feel myself losing it all

    Thank you bluelake lady for the nice words! I choose not to wear my pain on my sleeve, most would have NO idea how much horrible pain I am in. I do everything for myself, I hate asking for help (the way I have always been).
    All I ever wanted to do most in my life is help others and somehow I hope I have done that in some very small way.
    This last week has been so bad...I sit in bed and stare at the walls thinking..."what did I do in my life so wrong, that this pain has gotten so much worse?!"
    I am going to the doc on Wed. and I am gonna lay it on the line and tell him my pain is NOT getting adequate control. If I leave there with the same script as last time it is no one's fault but my own. NO ONE should have to suffer this much!!
    (Sorry got alittle venting out)
    Anyway...thanks again!
    God Bless
    Sufferann

     
    Old 01-03-2005, 06:42 PM   #10
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    Re: I can feel myself losing it all

    okay girlfriend,
    get out of that bed and paint that wall! you keep staring at it. is it so much fun to look at?! there has got to be something you can do besides stare at a wall. when i hurt really bad i paint pictures. when i know i must take a day(s) in bed i drag out all my favorite movies and turn my world into a theater. or i read if my hands will hold a book. i take short walks to ensure i do not get myself sicker trying to get well. use your imagination. fms has not killed your imagination.
    there is nothing wrong with asking for help sometimes. beats doing it yourself and spending a week in bed just so you could prove you can still do it all. that, i can do it all myself stuff will plunk you in front of that boring wall you say you dislike.
    i still vote for painting it. purple! or blue! you choose! i have turned my personal space into a wonderland of pretty things to look at. i even have pretties hanging from the ceiling so that when i have to lay flat i still have lovely sights to feast my eyes on. crystals, a glass dragonfly, several wind chimes, gourds i grew and painted. stuff that makes me feel good inside. i love the rainbows of light when the sun hits the crystals in the afternoon. the sun warms my bed and i usually pretend i am a cat and take a sunny snooze. the sun eats fms pain. i have no idea why.
    have as much compassion for your body as you would a puppy alone in the rain. and be nice to the doctor. there are no magic pills. don't you think we would all be taking it if there was one? there may never be a magic pill. you are going to have to find another way to do your life. there is a new balance you must find or resign yourself to ugly walls and lonely moments of pure sad boredom.
    sweet dreams.
    peace,
    bluelakelady

     
    Old 01-05-2005, 05:27 AM   #11
    jollyjan
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    Re: I can feel myself losing it all

    Hi Char,

    You will find that most FM sufferers feel like you do at some time. It is a hard illness to live with cause there is a huge list of symptoms you either sound like a moaning minnie or a faker. The way I cope is always to look at my cup half full not half empty, yes I am in a lot of pain and have nearly all the problems posted but I think its not terminal and I have two great kids who I want to enjoy there lives and who I want to see grown up. Look at the positive in your life. You will probably find that your husband and family understand a lot more than you think but they will have problems dealing with it. People try to block out or minimise what causes them worry and anxiety unfotunately this comes across as not caring, being fed up of us or not understanding but in fact they are just dealing with seeing someone they love in pain and distress,it is their way of coping.

     
    Old 01-05-2005, 07:58 AM   #12
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    Re: I can feel myself losing it all

    Quote:
    Originally Posted by bluelakelady
    dear sufferann,
    you can take the pain. you got thru yesterday and you will get thru tomorrow. at some point in this illness you chose to live.
    does pain run your life or is it a partner who walks beside you? how you look at yourself in the mirror will have a great deal to do with how you live your life. are you a survivor, an embracer of your life? or have you chosen the path of helplessness and fear.
    you can take the pain. you are doing that right now, this very instant. the question we all have to ask ourselves is, are we doing it with style? are we setting an example we would want others to finds strenght in and want to emulate? you have a rare opportunity to teach. we all do. what do you want those around you to learn from watching your journey? you are young. do you see the years stretching out ahead? years of opportunity. to learn, to teach, to evolve.
    you can take the pain. you have more power than you realize at this moment in time.
    peace,
    bluelakelady
    Dear bluelakelady; I appreciate your optimism and apparant ease with this whole thing called fibromyalgia but I don't understand how you got there!?!? I have had fibro for years and kept it in a remission of sorts for a while. Then 4 years ago I injured my back ~had surgery and am now told the condition of my back is so bad that no surgery would help. The pain is excruciating and the fibro has returned with a vengeance! I also broke my ankkle in several places a year ago due to weakness in my legs (from the back injury that causes me to fall occasionaly) and am now facing my 3rd surgery along with pain there as well. I wish I could have the peace and optimism you seem to have. But at this point I am ready to give up. If it weren't for my 2 children (young adults) I think sometimes I would do something drastic. I feel trapped inside this broken body and there is no end insight. I try so hard to live a "normal" life and do things with my family~but it's getting harder and harder. I just wish I had one ounce of your peace and optimsim.God Bless you for your state of mind~I wish you could spread it around a bit!

     
    Old 01-05-2005, 08:39 AM   #13
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    Re: I can feel myself losing it all

    i am spreading it around, my friend. that is the whole purpose of my being here. thank you so much for inviting me to do it some more!
    i made a choice one day several years back. i realized i had to decide if i was a victim or a survivor. then a ray of sun hit my mind and i saw i had one other choice. i could choose to be a participant in my life. so, after reflecting on the three choices, i chose participation.
    there are many things i do not do because they waste my precious energy. i do not indulge in hopelessness. huge loss of energy there. when that ugly big hairy monster rears it's head i paint or i crawl if need be outside and remind myself of the beauty i can see. when the monster of self pity tries to slip under the door i go to the cancer site here in healthboards and remind myself how fortunate i am. i will live to be very old.
    do i see and end of this in site? sure i do. the day i die. i am cool with that. a huge portion of my optimism comes from the people with cancer that i help. the ones i have witnessed thru the process of creating those last memories and making the final choice to stop breathing left me changed. within me each has left a portion of their joy, their love of life, their last memories.
    and their most important gift of all. bravery, acceptance, grace, tranquility. you cannot help others without being changed. it is the gift.
    i am not a victim, nor a survivor of my life. i am a participant.
    your body is going to be what it is. your mind is still yours. there are only two things in this universe that i have total control over. my mind and my mouth. so i mind my mouth.
    i have created a sort of ten step program for myself concerning fms. i have specific lectures i give myself for those moments of weakness.
    i have a gift to give this world i have been blessed to be born on. my gift is my joy, my smile, my hugs, my laughter, my love for every creature i meet. we all have a special gift within us. what is yours?
    peace,
    bluelakelady

     
    Old 01-06-2005, 03:02 PM   #14
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    Re: I can feel myself losing it all

    Dear Bluelakelady: I make the choice every day to be happy, accept, enjoy, all that good stuff. And it works in my head but not my body. I choose to be one way and my body shouts loudly that things will be oh so different! Just today~I tried to have a nice day~that was at least my intention. I went out to do a bit of shopping and midway thru the pain increased and I broke out in a horrible sweat from the weakness and the pain. Just lovely in the middle of Target! Had plans to put away the holiday decorations this afternoon but, after the disaster in the store I just rested~I know the stuff will be there tommorow but, it's so %$#@ frustrating!!! I can be as optimistic and hopeful as anything and stuff like this always happens. That's what i mean~how do we come to terms with the junk of it all?!?!?

     
    Old 01-06-2005, 04:40 PM   #15
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    Re: I can feel myself losing it all

    accept that it will happen and be cool with it. so what if people see you sweat. i've sat in the middle of macys perfume dept before. right down on the floor. beats falling down.
    accept that your mind and your body live together. they are seperate entities sharing the same space. they don't always agree on how the day will go. listen to your body find the balance between what you want to do, what your body can reasonably do, and what simply cannot wait.
    i have driven all the way to town, a 25 minute drive, just to turn right back around and go home. i miss appointments or show up at the wrong time. like today. i had my first evaluation appt with physical therapy. i think i have to be there at 11. nope. they call at five past ten and say where are you? we rescheduled for tomorrow and i wrote myself a big note. i wasted about 3 minutes being mad at myself and then i broke out laughing and singing my favorite song, "i'm back in the foggies again." to the tune of back in the saddle again. life is too short to spend time looking back at anything. wheather it is something i forgot to do or who my body used to be.
    so, after i missed my appointment, i took off all my go to town cloths, and watched a movie.
    sometimes you just have to slow your mind down and let your body catch up. make sense?
    the choice is always inside your mind. the body cannot think. it can only be.
    peace,
    bluelakelady
    ps i also forgot to call my grandson on his birthday. it happens. i called the next day and he was happy to have his birthday last two days instead of one. smart child!

     
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