Special Message for Michelle 01

Discussion in 'Fibromyalgia Main Forum' started by Jodi_B, Sep 2, 2005.

  1. Jodi_B

    Jodi_B New Member

    Hi, Michelle,

    I can definitely relate to just what you're going through. Even though I've been dealing with Fibromyalgia (FMS) and all its associated problems (IBS, horrible fatigue, mood swings, pain, etc.) for 19 years, reading your message immediately took me back to the time when I was newly diagnosed.

    It's true that we go through denial -- only to pay a penalty for it later. I used to "power walk" and silently YELL at the FMS saying I was going to beat it. Later I'd have extra pain from overdoing the activity.

    Depression is definitely a part of it. It's terribly depressing to suddenly be labelled with a strange disease. And we grieve for the loss of who we used to be...and long to be that person again. But no matter how we try, it doesn't happen. For me, I worked full time, took a vigorous walk after work and then cook a big meal..had a big garden, etc. Now I cannot imagine who that person was.

    So, you're husband is grieving, too, for you're suddenly a different person that he knew before. Everything has changed. And you're both scared -- what does all this mean for us? Will we handle it? How will things change?

    I've been able to accept the fact that FMS, as of now, has no cure. But it is manageable. That's no different than arthritis, diabetes, high blood pressure and a long list of other chronic illnesses that millions of people have to deal with.

    Through experience you'll learn to pace yourself. We only have a certain amount of energy each day, so we learn to spend it wisely. We also learn to priorize and become aware of what has to be done, what we'd like to do...and what can go undone. I'm far from being the housekeeper I used to be. Yes, it still bothers me, but trying to do too much ends up bothering me even more!

    I don't think anyone that doesn't have FMS can truly understand what it is like. Some time ago I found a "letter to normals" online which I've copied and pasted below. I've edited it just a bit.

    Hello Family, Friends, and Anyone Wishing to Know Me,

    Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

    I want to talk to you about Fibromyalgia Syndrome(FMS). Many have never heard of this condition and for those who have, many are misinformed. And because of this, judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FMS has assaulted not only my life but those whom I love as well.

    You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you won't see my scars as you would a person who, say, had suffered a car accident. You won't see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand it....

    Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough, I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

    Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

    I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

    Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

    And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

    On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

    So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….

    Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand….

    Copyright of www.fibrohugs.com Written by Ronald J. Waller

    Some have tried to explain the pain we have by saying "remember the worst case of flu you've ever had? You ached so bad all over and had such bone-deep fatigue that all you wanted to do was lie down? Imagine feeling like that every day. So when I seem fine one minute and the next I suddenly announce 'I have lie down -- right now!', please try to understand.

    Gosh, I know this is long, but I hope it helps. Things will get better, I assure you. For me, Elavil (Amitriptylline) has been a God-send. I take 50 mg about an hour and a half or two hours before bedtime and it has helped give me more restful sleep. I've also learned to pace myself and know when I have to say "no" because it would mean doing too much.

    God bless and good luck. Know that someone is thinking of you -- and praying for you -- and can honestly say "I know what you're going through".

    Love and hugs,


    [This Message was Edited on 09/02/2005]
  2. lvjesus

    lvjesus Member

  3. Jodi_B

    Jodi_B New Member

  4. Jodi_B

    Jodi_B New Member


  5. Michelle01

    Michelle01 New Member

    oh Jodie_B

    I feel so teary and overwhelmed...thankyou so much for your message.I understand completely.
    Also its the ageing thing as well. I had my 50th birthday this year but am a "young " 50 as people say.

    Today I saw a young 20-25 year old who looked just as I did when I was that age.She was pretty ,fit , confident and slim -just as I was.I felt like I had been hit in the stomach.I thought that was how I used to be.!

    Its the loss of youth for me as well.For example: I love to ski and have done so 30 years.Last year, I couldnt even pick up my skiis!This year my rheumatologist said I could go to the snow but I was in no shape to ski. He said maybe next year when some of the plans he has for me work. This is one example of loss that I feel intensly. Sure, there are other things that I can do at the snow which I did, but its not the same.
    Same with the gardening,housework etc. I just cant do it the same way.
    I feel old ,sore and overwhelmed.Maybe its a bad time .I have atm FMS plus an IBS flare up and PMT!What a combination :))

    I think I will cope better if I ease up on myself ,reevaluate what can be achieved in a day depending on how the FMS is.I expect a lot from myself often unreasonably so.
    I have had the symptoms for years-but didnt put it altogether until this year.

    So---Thanks again Jodie_B heaps of hugs and thankyou very much for a much needed shoulder!!

  6. Michelle01

    Michelle01 New Member

  7. Jodi_B

    Jodi_B New Member

    Hi, Michelle,

    A belated "Your Welcome!". I hope what I wrote will be of some help.

    I had been curious about your age -- so, now I can doubly relate to you! (I'm nudging 56). So, we both have our youth grieve over, too. TV ads and programs really make me feel old and matronly! And Elavil has caused some weight gain which I cannot seem to conquer (okay, sometimes I don't try very hard -- especially when fatigued when I give in to an overwhelming urge for chocolate).

    You will have better days...but yes, there will be down days, too. Days when you just don't feel like doing anything. And a word of advice on that: I have learned, the hard way, that if I push to try to keep going I end up feeling even worse. Some call it the "push - crash cycle": You end up crashing something fierce. Bottom line: it's not worth it! So, when you feel a need to stop and rest, do it! The guilt about doing so is something very hard to conquer (not sure if I have after all this time), but my husband is getting used to it and finally knows that when I say I have to lie down, it means I REALLY have to lie down and RIGHT NOW! :eek:)

    I do wish it was okay to swap email addresses on this site as it's very hard to get a specific message to a specific person.

    Warmest regards,


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