thanks I value your your time attention.

Discussion in 'Fibromyalgia Main Forum' started by anniec345, May 8, 2006.

  1. anniec345

    anniec345 New Member

    I don't know how to thank people one by one -- so I'm posting this as a big thanks to Juloo, prickles, smiffy 79 and unicornk for your advice on how to get going on my booklet for Normals.

    Juloo, you are RIGHT about all the ignorance and the grieving.

    smiffy, will break up anything i write from now on - GREAT advice.

    everybody - the spoons theory site is a great start -

    Thanks again to everybody; I appreciate your generosity in using your time to help me out ~
  2. rockgor

    rockgor Well-Known Member

    w/ your project. It's a wonderful idea.

    It would be nice if people knew that when we don't show up, don't contribute, aren't good company,...

    we feel worse about it than they do.
  3. rosemarie

    rosemarie Member

    I would buy your book in a heart beat .AS I so would love for my family to understand the why's and where fors' that I am hurting. No matter how I explain it I am constangly told that well I know some one who has fibro and although they are in a wheelchair they still work 2 jobs and don't take narcotic pain pills. NO one sleeps as much as you do duing the day. And there is the issure of addiction on narcotic pain meds.

    I would give anything to have them understand that what I feel and what I have is REAL and is PAINFULL and that NO 2 people with chronic pain problems are the same, not any one of us feel the same way or have the same pain issues daily.

    I am so tird of being told athat I am addicted to my meds and that my pain doctor is a quake because he gives me pain meds and has not done new MRI's. He has my old records and knows what I have and the resutls of the tests that I have had. I just want some one to believe in me and not think because I don't walk the two blocks to my mom's that I am lazy instead of having them understand that I CAN'T walk that far or I will pay for it that night and for a few days after.

    NO one has written about pain meds and why we take them. And the facts of the use of narcotic pain meds and our taking them and addiction is a rare thing. NO one tells families that what we have will go away and that we will be just like we were before all this happened.

    I hope that you get all the info you need to write this book so that the NORMALS will have some thing to read and that they might learn and accept that we still are people who live in pain but that we still do give some thing to our families and communities. I want so much for my family to understand that I am worth some thing as a mother , That I didn't lose my ability to be a good mother and grandmother because I am taking narcoitc pain meds.

    I have one daughter who tells me that she will NEVER EVER LEAVE HER BABY WILL ME AS LONG AS I AM ON NARCOTIC PAIN PILLS.

    She is afaird that I will drop or not pay attention to the baby and that this baby will be neglected if she left it with me. AS of yet she is not married nor does she have kids. My youngest has a 13 month old sone whom I adore and I baby sit him for a short periods of time and I do it well.

    I guess that I just want my family to believe in me and to understand me that I am not faking this pain or the fatique that comes and makes me so tired. But I am still a good mother and grandmother. who loves her family.

  4. anniec345

    anniec345 New Member

    Hi, Thank you for answering my questions about what you think I should put in my handbook for normals who need to learn about CFIDS. Maybe Normals can begin to understand a little about FM when they read about CFIDS symptoms??

    Please forgive me for not naming the specific people who answered my post. Haven't been online in a few days. I'm almost 56 and my job's pace is meant for 24 year olds - low energy after work.

    What Normals need to know is -- a LOT.

    How do "caregivers" who love you show you that they stand by you, love you, help you? I put that in quotes because I know that YOU give care to THEM - maybe more than they give to you? How do you talk about what your lives together have become? That's what was hard for me with my brother.

    Once your loved ones who live with you know all the unhappy and confusing things, then they need to FEEL SOME HOPE -- sometimes they need hope they can keep on having a loving relationship with you.

    I think they must get scared that they'll lose you.

    Or maybe that they've already lost you because the illness makes you so sleepy or in such pain that you're not able to go out or do the things you used to do together.

    I'm not any medical expert so I won't write about treatments (only that new treatments come out all the time - it seems to me). I'll write about what worked (temporarily) for my brother's CFIDS. Nothing he's tried has ever had lasting effects.

    Thing is, I don't want to lead anybody away from a treatment that might work for them.

    But I will be sure to put in the heartbreak that you write to me. I will never ever write down anybody's nickname - but I will mention wonderful Dr. David Bell, who finally gave my brother the diagnosis of CFIDS. Now my brother can get help from the state. He was homeless, jobless, had no doctor, no money, no insurance - thank God he got old enough to get social security each month.

    Normals need to see that nobody can fake this emotional and physical anguish.

    Being ostracized and hated, made fun of, distrusted, feared, robbed of time with your grandchildren, is cruel --especially when it's from someone you love.

    I know I'm saying things you already know. I can only imagine the pain and anger and despair you go through. I learn a lot from my brother - and from you. I appreciate any advice you give me. Thank you.

    This is really long. I didn't know how to make it shorter.

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