Help fast.

Discussion in 'Fibromyalgia Main Forum' started by gdldavis, May 28, 2010.

  1. gdldavis

    gdldavis New Member

    I have FM/CFIDS and so far I CAN'T get my step father to understand that I am really sick, I have been ill for 10 years and my mother wanted me to move "home" so she could help me. He won't believe anything, he thinks I am lazy and a slob. I am more stressed out than at anytime in my life, and have planned away to leave this earth if things do not get better. Will some of you that are ill like me (seen the doctors, tried the cures, been tested on, etc) write to him, just use Dear Step-Father.........maybe you can get through to him were I only fail. I am 42 years old and have lost my 30's all together, I just want to live the time I have left in peace. Either stressed (leaving this realm) or peace (staying)

    Thanks to everyone that reads this.

  2. 3gs

    3gs New Member

    plz don't let this one person get u down. take him too a doctors appt with you. there are excellent videos on youtube about this dd. also the library here has great stuff.

    Having people not believe u is common with this.

    take care
  3. rocky76

    rocky76 Member

    These are the things that I would like you to understand about me before you judge me...

    Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

    Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

    Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

    Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

    Please understand that chronic illnesses are variable. It's quite possible (for me, it's 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, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

    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 can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

    Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's 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 Fibro 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 Fibro, if something worked we would KNOW.

    If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.

    Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

    I depend on you - people who are not sick - for many things.

    But most importantly, I need you to understand me.
  4. rocky76

    rocky76 Member


    Dear Miserable Human Being,

    Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

    Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

    Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!

    In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

    Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

    Have a nice day!! (ROFL),
  5. karynwolfe

    karynwolfe New Member

    3gs had a good point: There is a lot of information out there if he were willing to go looking for it. Sometimes either someone is going to believe you or not believe you, and you cannot base your life on how someone else decides to live theirs.

    The Letter To Normals:
    "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 persons time is their most valuable asset and yours is appreciated.

    I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions 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 FM/MPS 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, whos 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 wont see my scars as you would a person who, say, had suffered a car accident. You wont 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 cant see it and do not understand....

    Please dont 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 anothers 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. Please try to understand how it feels to lose the laundry, only to find it in the stove instead of the dryer. 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 doesnt 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 dont 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 anothers face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my 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 - Written by Ronald J. Waller)
  6. rockgor

    rockgor Well-Known Member

    Why do you have to convince your stepfather? Does he live with you? Does
    he support you financially?

    Trying to get other people to change their beliefs is pretty much a losing
    battle, don't you think?

    I grew up in a dysfunctional, alcoholic, crazy home. Those people could not
    be persuaded, modified, or saved. I moved far away from them. Best therapy
    in the world.

    Good luck
  7. Misfit101

    Misfit101 New Member

    I cant add anything to what the others have written. Youre sure not alone in your desire to be understood. Just one thing said some things that scare me for you. On the depression board theres a sticky with a toll free number for ppl who might be feeling hopeless. Will you please call that number? Im sure youll find someone who knows how you feel. And...would you let us know how youre doing? There are a TON of caring ppl here. I wish you the best.
  8. msbsgblue

    msbsgblue Member

    Wish you or some other member lived near me. It would be nice to share an apartment and not have to be around negative people that don't believe us. I am in your boat, currently I live at my daughters since last month, they do not understand after all these years.

    I would love to find a roomie that would like to share a 2 BR apt. and expenses and get out of this house.
  9. gdldavis

    gdldavis New Member

    Thank you for the info, but I have seen SO SO many people trying to help me. But because you took the time to write to me, I will check it out. And Misfit101 blessed be. Thank you.

  10. gdldavis

    gdldavis New Member

    I had same childhood, then I left and become highly know for my work in Detroit. I was on my on and living a great life, got married, everything was great. .......THEN my whole life changed. My new husband could not handle my illness. Divorce! I had money saved but I am sure you know how much all this costs, then had to q..u..i..t my favorite job I worked my butt of to learn then get the job, and several awards with it. Then my illness just got worse fast, so my mother asked me to come home, to help me. Well, by then my money was low, so we have a house on the lake and I lived there for awhile but now my mother and step-father wants to buy me a house and I will pay what I can until it's mine. Thing is my step-father has never included me or my sister in his life. To him, I am lying, so I can stay at home and live off their money. LAST THING I WANT!! I am 42 years old, and after losing my 30's, I have to live with him stopping by anytime he wants to make sure the house is clean enough for him. How clean is your house at any given day? I should just live in a box. lol Anyway that is it, the short version.

  11. Misfit101

    Misfit101 New Member

    If yovr stepfather has never included you and your sister in his life...sounds to me like he didnt realize he was marrying a woman that was a package deal. And its easy enough for me to advise to to tell him to go blow. I dont know how much blah blah and blathering youd have to listen to. It would be a good idea to print off info and keep it simple. Maybe some stories from others and the pain they live with. Others who dont have support and what it does to them. Im doubtful it would make a difference in your stepfathers mindset. Im assuming your mothers no help in dealing with him. If you cant get thru to him then youre going to have to toughen your hide against him and tell him to blow.