Hi, I have been looking for a book that we( a parent to her child or a child can read) that explains that this illness FM isn't terminal. My daughter always asks me if I am going to die and just my answer isn't good enought for her. How can one explain it to her so it makes sense to her or is there a book abould chronic illness that doesn't end with the dealth of a family member? This is very important to me because my daughter panics and crys when I am really sick and it makes me cry and I feel so bad because I can't play with her like she would like. So if anyone has a book or a good answer please let me know. I do not want this illness to affect her anymore than it has and it has been too much now. Thanks Raven

Hi Raven....have you thought about taking her in with you to one of your doctor appointments? Maybe if she heard about it all from a doctor?

It might even help (when your pain is really bad) to incorporate her help? Maybe give her a specific thing to do that will help you in those times? Could she bring you a heating pad? glass of water? extra pillow? the remote control??

My heart goes out to you Raven...you have so much on your plate...wish i could be there to help.

((hugs))
cat

ps. i'll keep my eyes open for a good book and will let you know if i find anything. maybe others are looking already http://www.healthboards.com/ubb/smile.gif

Raven...I just read in the other thread, that you mentioned your daughter lost a cat due to illness. Do you think there's a strong connection there for her, with you??

Raven,

So to hear that your daughter is having an hard time dealing with you being sick. I think Cat has an good point about taking her to your doctor and have him answer her questions. I also did an short search for an book for families and this is the only one I came across:


All about Fibromyalgia: A Guide for Patients and Their Families

By: Daniel J. Wallace and Janice Brock Wallace

I have not read it nor heard of it but you may want to do an check online about this book for more info on what it contains. If I can find anything else, I'll let you know asap.

Chy http://www.healthboards.com/ubb/smile.gif

Thanks again you two. You are always there to lend a ear and a thought. You both are very sweet. Yes Cat, When we lost Evee her cat to FIP my daughter went into a serious depression. She kept asking if I was like Evee. "Will you die soon Mommy?" "What will happen to me when you go?" "Can I come with you because I want to be with you in heaven" When I am in severe pain she comes into the room and if my eyes are closed she freaks and shakes me. "Mommy are you dead"? If I open my eyes, she wants to call 911. I keep telling her that mommy really hurts right now and I need to rest but I am not dead, she thinks I am hiding something. She does help me sometimes but then other times I almost have to twist her arm. She gets so upset when she wants me to play and I can't. She gets angry at me and sometimes says mean things and I am sure she tells her friends. I wish I wasn't so sick. Yet I can't change it I just want to help her understand. I was hoping for a kid type book on chronic illness if not FM, explaining how I am and that I am not on my death bed. I don't usually take her to the Doctor with me because sometimes when I get the blood platlet transfusion I know she would freak plus the injections in my back would scare her. Thanks for the info on that book Chy I'll look into it. Lots of hugs going your way Cat and Chy. Take care and Thanks again Raven.

...have you thought about setting up a "talking only" session with the doc? It really might help her out and doctors are usually pretty good at dealing with children. If anything, maybe the doc could refer you to someone in your area who can help?

Theres a really neat tutorial about fibro too, that Chy posted, have you taken a look? It's definitely simplified, and yet probably too advanced for your daughter....but it does have great pictures and it may help with your explaining. Maybe you could get her to click on the arrow to turn the pages, and you could point to the areas that hurt on you, and what you need to do to feel better? ...just an idea.

take care,
cat

Cat, those are good ideas! It's worth an try Raven and you have nothing to lose by doing these couple of things. It could only help.

Hugs Chy http://www.healthboards.com/ubb/smile.gif