A letter for children to help them understand

Discussion in 'Fibromyalgia Main Forum' started by Lalania1970, May 29, 2006.

  1. Lalania1970

    Lalania1970 New Member

    What your children should know



    You may have noticed that you (mom/dad) hasn’t been the same lately. This may have caused you some confusion, anger, or fear. I have been feeling these things too, and want to talk to you about it, so you understand what is going on. I have (fibromyalgia (FMS) and/or Myofascial Pain Syndrome (MPS). You may not know about these condition(s), or have heard or read things that are not true. Fibromyalgia is a neurotransmitter problem. Neurotransmitters are things that allow the body and mind to talk to each other. My neurotransmitters aren’t working properly. That means the communication between my body and mind doesn’t work smoothly, which causes the pain and other symptoms. The pain and other symptoms are very hard to control and they force me to set limits on what I can do at any given time.
    Remember how you felt when you had a bad case of the flu? You ached all over, and you didn’t want to do much of anything. You were tired all the time. That’s how I feel with fibromyalgia. The feelings change, though. Some days I don’t feel too bad, and other days I feel as though I have been run over by a truck. This can be hard for you to understand, because4 I look healthy. My central nervous system can get so sensitive that I feel noise, odors, and lights and, sometime, even touch painful.
    I don’t get the deep kind of sleep that you get, so when I wake up, I often feel terribly stiff and exhausted, instead of wide awake and refreshed. It can be challenging to get out of bed. I get tired very easily. Sometimes I get very confused, and have a poor memory- it’s called “fibrofog.” During those times, I may need your help to keep things straight in my mind. You may have to remind me of things I have promised to do, and in enough time so that I will be able to do them. If I sometimes seem confused or forgetful, that doesn’t mean I don’t want to do things with you. I just may need some help getting organized.
    Myofascail pain syndrome (MPS) is another condition that can occur along with fibromyalgia. MPS is a condition of Myofascia. The myofascia is the covering around the muscles and groups of cells that make up the muscles. The myofascia gets tougher, and loses some of its ability to stretch. It’s like wearing clothes that are too tight. My muscles can’t stretch the way they should. I can develop lumps called trigger points that tighten my muscles and cause pain or weakness. They can also cause dizziness and many other symptoms.
    It is important that I keep moving, because if I stay in one place too long, I get stiff and achy. That can make it hard for me to go to meetings or sit through a movie. Sometimes my muscles give out, and I may fall, so I have to be careful about how I walk. I have to spend extra time taking care of myself, so I can be as healthy as possible.
    When you have both FMS and MPS, they work together to cause more than double the symptoms. These are chronic conditions. That means they are right now, there are no cure for them. I will not die from these conditions, so you don’t have to be afraid of that. I want you to understand that some days I feel a lot better than others. This will change from day to day. So I’ll try to do what I can to feel as good as possible.
    FMS makes other problems, such as MPS, or even symptoms from a cold, feel much worse to me. Fibromyalgia also can cause me to have problems with my feelings. Sometimes I hurt so much I lose my patience with things that I could handle if I wasn’t in so much pain. I will need your help with this.
    I can be happy one minute and sad the next. I might start crying, or I might get angry very fast, and you won’t know why. I might not understand it myself. I may not even be able to find words to explain what is happening, or how I feel. This doesn’t mean that you have done something wrong. It is due to the illness, and to the chemicals in my body which aren’t working the way they should. Please talk to me about it if it scares you, or if you feel confused about what is happening. Let me know if things are getting out of hand. I will always love you snd be here for you. We will find a way to deal with this togethe
  2. julieisfree05

    julieisfree05 New Member

    I have a 7 yr old son and I've had FM/CFS since before he was born. We've talked openly about my illness since he was old enough to understand the simplest things, but this is a perfect, simple explanation that most kids can understand! You've done a wonderful job!

    One of the best days of my life was last summer, after I'd been on the Xyrem for about six months. I was fixing my son a snack and he asked me, "Do you still have fibro?"

    I started to cry, because for the first time in his life, he had seen me so healthy that he thought I wasn't sick anymore! I've been like that ever since last summer, and he is amazed with the change. We've always been close, but now we can bowl, swim, walk, and I even jog behind him while he rides his scooter!

    For those who can't do this kind of thing, remember that spending time with your children - even if it's watching movies, reading, drawing or just talking - they KNOW that you love them! It's not WHAT you do. It's spending time with them that they will remember.

    God Bless all the parents that are dealing with these illnesses. Being a parent is hard enough without the added challenge of being ill..

    julie (is free!)

    Did God overlook it?
    What ought have been written
    The Eleventh Commandment
    "Honor Thy Children".. - Collin Raye