Discussion in 'Fibromyalgia Main Forum' started by S-Elaine, Oct 27, 2008.

  1. S-Elaine

    S-Elaine Member

    Hi ALL,

    This letter was written by Bek Oberin to help other people understand what Fibromyalgia and or Chronic Fatigue / ME is.

    You could take this letter and modify it a bit to suit you specifically and give it out to family members or friends you would like to understand the conditions we struggle with.

    It is called the “Letter To The Normals”. Meaning those without medical conditions & tries to help educate them on what living with a “chronic condition” is like.

    Hope it is helpful to anyone here.

    There is a 2nd version of this letter. I’ll post it in a few days.

    Take care,
    == Elaine


    Having FMS means many things change and a lot of them are invisible. Unlike having cancer or being hurt in a an accident, most people do not understand even a little about FMS and it’s effect, and of those that think they know, many are actually mis-informed.

    In the spirit of informing those who wish to understand…..these are the things that I would like you to understand about me before you judge me.

    == Please understand that being sick does not mean I am not still a human being. I have to spend most of the day in considerable pain and exhaustion, and if you visit, I probably don’t seem like much fun to be with, but I am still me stuck inside this body. I still worry about work, and my family and friends and I’d still like to hear you talk about yours too.

    == Please understand the difference between “happy” and “healthy”. Whem you have the flu, you probably feel miserable with it, but I have been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So if you are talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot f pain or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, your sounding better!”. I am not sounding better. I am sounding happy. If you want to comment on that, you are welcome to. Please understand that being able to stand for 10 minutes doesn’t necessarily mean that I can stand up for 20 minutes or an hour. And just because I mange to stand up for 30 minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you are either paralyzed, or you can move. With this one it gets more confusing.

    == Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable”, and so on. It applies to everything. That is what FMS does to you.

    == Please understand that FMS is variable. It’s quite possible (for me, it is common) that one day I am able to walk to the park and back. While the next day, I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “but you did it before!”. If you want me to do something, then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please do not take it personally.

    == Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes……may frustrate me to tears and is not correct. If I was capable of doing these things, don’t you know that I would? I am working with my doctor and am already doing the exercise and diet that I am supposed to do. Another statement that hurts is, “you just need to push yourself more, exercise harder.”

    Obviously, FMS deals directly with muscles and because our muscles do not repair themselves the way your muscles do this COULD do far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression. Wouldn’t you get depressed if you were hurting and exhausted for years on end? However, it is not created by depression.

    == Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now. It cannot be put off or forgotten just because I am out for the day (or whatever). FMS does not forgive.

    == If you want to suggest a cure to me, don’t. It is not because I don’t appreciate the thought and it is not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS then we'd know about it. This is not a drug-company conspiracy. There is worldwide networking (both on and off the Internet) between people with FMS. If something worked, we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

    In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too. You're my link to the outside world. If you don't come to visit me, then I might not get to see you. And, as much as it's possible, I need you to understand me.

    Authored by Bek Oberin
  2. hannahfaid

    hannahfaid New Member

    Hi Elaine.. Thanks for posting the letter to Normals... I was just thinking about it.. I have moved to a new town and a lot of new friends have no idea what I am going through... This may help.
    I am looking forward to the 2nd letter

    Thanks again
  3. S-Elaine

    S-Elaine Member

    This is the 2nd version of the “Letter To The Normals”.

    While it is specifically referring to FMS, you could modify the letter to your specific needs and the symptoms you struggle with the most if you have CFS and or ME.

    Hope it helps.

    == Elaine


    2ND VERSION of “Letter To The Normals”

    I want to talk to you about Fibromyalgia (FMS). Many have never heard of this condition and for those who have, many are misinformed. Because of the mis-informed, 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 Fibromyalgia 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. In many ways my pain may be more destructive because people cannot see it and do not understand.

    Please do not 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 cry.

    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. 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 because of my foggy-ness. 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. 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.

    Just because I can do a thing one day, that does not 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 with.

    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.

    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.