What do I tell my kids?

Discussion in 'Fibromyalgia Main Forum' started by ayhatch, Nov 6, 2006.

  1. ayhatch

    ayhatch New Member

    After years of troubling symptoms...I finally got my diagnosis in June 2006. I had an Adrenal Crisis in January which almost killed me. That's what finally got me to the right doctors for my answers. ANYWAY... my kids saw me really sick and unable to do anything several monthes ago. Now it seems every day I have to make excuses for my inability to endure. (I'm too tired, I can't walk that far...it hurts my legs.) My 10 year old understands to a point. She also has ADD and "forgets" about my limitations. My 5 year old seems constantly disappointed. I try to tell him that he has to let Mama take a nap or Mama gets really sick. I offer insentives for him to stay quiet and not wake me up, etc. But, I really need a good advice book on how to explain my illness to my kids.
    Can anyone help?
  2. julieisfree05

    julieisfree05 New Member

    The most important thing I had to reinforce to my son was that my illness had NOTHING to do with him!

    He heard me tell a friend that my symptoms got bad while I was pregnant, and misunderstood what I said. He thought I meant that the pregnancy (meaning HIM!!) had CAUSED the illness.

    He was only about five, but I explained that I had been ill for 7 years before he was born, and that we wanted a child so badly that I chose to stop taking medication so that we could have a healthy baby.

    I made sure that he understood that the choice I made was because he was so wanted and loved, even before he was born - and that made him even more special to us!

    I also explained to him that I had an illness that caused me to not be able to sleep well. Not sleeping caused me to be tired and to hurt all over. I kept it very simple when he was younger and offered more information as he got older and wanted to know more.

    The main thing is to be sure that your kids know they are not making you ill or making you worse, and that you LOVE THEM, even if you can't always do what you want to with them.

    I don't have a good book to recommend, but I hope my experience can help a little.

    Good luck!

    - julie (is free!)
  3. abcanada

    abcanada New Member

    I've been very sick for the last 2 1/2 years and have 4 young children, oldest will be 7 in Dec. it has been very hard sometimes, more to do with the guilt I put upon myself. I just wish I could so much more with/for them. I'm actually at the point of trying to hire someone to come in & help me a bit with house cleaning, taking & picking kids up from school and a few other things. I used to think it was posible, but I just can't do it all, my husband works very hard and long hours, and helps when he can. More with entertaining the kids, which suits me just fine. He took the older 2 on a couple of camping/fishing/hunting(bird) trips which was great for their bonding and a good break. My kids are quite the chatter boxes. One good thing with 4 is that they do play very well together. The younger 3 are boys 14 months to 5. They are all great kids and they may understand a bit better as I first had blood clots while pregnant so they were very aware that things weren't right(watched me do daily injections, as they were very interested). I try not to say too much, especially since I haven't officially been diagnosed with anything yet. Docs are working on it! Waiting for MRI results. Anyway, I feel very bad, and try not to say much to them about me not being well. Some days I have to though, as I just can't do anything. They do know and always have that from 12:00 to 3:00 is quiet time/nap time. I try to lay on the couch and put a movie on for them, make popcorn and try to think of something simple we could do when I get up. At least I'm somewhat present. Well it's naptime now. 5yr old boy goes to school in the afternoon(kindergarden). Wishing you luck, I know it's hard. I know I wasn't much help. Try to think of independant things they can do, age appropriate. Surprised me what my 5 & 7 yr olds can do when they put thier minds to it. My husband is much better at showing them and teaching them things, much more patients! Laura
  4. Marta608

    Marta608 Member

    As Fight says, I think you have to gear explainations and expectations to age of the child just as anyone with any illness must do. They feel good so why don't you? It's that simple with small children.

    I think anyone who has young children and this illness is a saint. No two ways about it. I'm sure you do the very best job you can do. First of all, you need to know that.

    As for your daughter being disappointed, I'm sure she is but I we know that there are worse things than having a sick mother, like having no mother or an addicted mother. I feel that if you know that you're an amazing, wonder-full, marvel of a mother under the circumstances and beyond you'll project that feeling to your children so that they know it too.

  5. ayhatch

    ayhatch New Member

    Thank you all for your replies and advice. I truly appreciate it. Good things to keep in mind. It's actually a lot easier to enjoy my kids now that I know my limitations. I don't work or volunteer anymore, so what time and energy I do have is spent on them!

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