Chronic illness and toddler parenting!

I had just found out that I have lupus and fibromyalgia in Oct. 2007. My children are 2,3,8,16,18,and 19!!!! The older two are out of the house and going to college!!! I have a hard time dealing with my children during the day when everyone is gone!!! I can't pick them up like they want or play down on the floor. They are very energitic! It gets so bad that I just want to cry and hide. I can't because I don't want them to see me upset. I get bad headaches and my body hurts all over. I was told that there wasn't much more I could do for my illnesses right now. I take painkillers and other meds. I'm afraid of taking too many b/c I dont want to fall asleep taking care of them. does anyone have any tips? I don't get enough money to hire someone either!

Thank you! Your Friend, Chris

Post edited by: mommyofsix / Friend2U, at: 04/19/2008 22:16

My heart goes out to you! I don't have a chronic illness, but my husband has Parkinson's Disease. Physically, it is very hard for him to participate in the general caregiving of our 17 month old. He does some, but it's very limited.

Your little ones are old enough to get on and off the sofa themselves. Since it's difficult for you to get up and down from the floor, find a comfy sofa or chair and let them come to you. There are lots of easy, time consuming things you can do in a chair or sofa - reading, coloring, leaning letters, shapes and numbers, playing 'I Spy' - the list goes on and on. Hopefully, it will be light enough play that you won't be in too much pain or be too worn out, and it will give your little ones good, wholesome quality time with you, and they can still learn from it. And when the older ones are home, let them help out more with the younger kids and the chores around the house, if need be.

Hang in there, and let me know if I can help in any way!

Thank you so much for the advice. I hope that everyting is going good for you and your family.

Take care. Your friend,Chris

I have fibromyalgia and my kids are 5, 4 and 2, so I sympathize in that regards. I won't tell you I know how you feel because I don't. I have a lot of guilt that I can't do what I see or think other mothers do and what I should be doing and that is where I think our problem is. We feel so much guilt that we don't think about they do have. They have a mother who loves them enough to get help to improve their lives and just having you there is enough. I find that I can put on a movie and clap along with them and have them sit on my lap. My children are extremely active and I find that I just pace myself. If it is nice out, I let them go outside and I just sit in a chair or on the ground and play catch while sitting. If I have a good pain day, I will play more. We try to do trips when we can. Just yesterday we took them to the circus, which they had a blast and I got to sit! LOL. My husband is great with them and that helps a lot. I also have a family that takes them out sledding and things in the winter when I just can't.

I guess my only advise would be to not remind yourself of what you can't give them and remember what you can. You can give them you, for better or worse, and that is what they will remember. Give them lots of hugs and lots of kisses and tell them how much you love them and try...and I say try because I know the guilt never goes away...but try to not let the guilt get to you. We do what we can when we can and sometimes that is all we can do. Reach for help too. If know of another mom or 2 or 3 who have young children, see if they will take your kids to the park for an hour. Are grandma and grandpa around? Luckily, my parents are very active too and they take the kids for weekends and they do all kinds of things.

My kids are very good at playing with each other and so that helps as well. Just try not to let the guilt overwhelm you. Hang in there. You are doing great just by loving them enough to see what more you could be doing and that is so much more than many children have.

((((((((((((((((HUGS))))))))))))))))

Fellow fibro sufferer and mother,