Probably the hardest part of having CFS & Fibromyalgia is how it affects our children. So what are parents supposed to do? How are we supposed to live with a debilitating illness, but still have the energy to chase around young children, attend school events, sports events, and play with them? Well, the honest answer is that we can’t always do that.
If you have CFS, Fibromyalgia, or both, you know that the lack of energy we experience is really hard on us when we have active children. Many of us are guilty of trying to hide our illnesses from our families and children but kids are not dumb. They know when something is wrong – my son can always tell.
If seeing you with CFS or Fibromyalgia is all your child has ever known, they don’t know any different. They are used to things being the way they are, as sad as that may seem.
Even if you can’t always be there physically for your children, you can be there emotionally and to me that is the most important thing. Let them know over and over how special they are, how much you love them and that they are the most important person/people to you in the world.
Do not feel guilty for being ill, you didn’t choose this illness and your children won’t be seriously harmed by it unless they pick up on negative attitudes from you. It isn’t pleasant to have a sick parent, but it is far more detrimental to have one who feels guilty all the time.
If you can find people to help with household chores so that you can reserve that energy for your child, then by all means do it. It’s not important who is cleaning your house. What do you want your child to remember: that the house was always clean or that mommy paid attention to him or her?
Assign chores to each child in the family. Make them responsible for certain things around the house so that you don’t have to do it.
Make games out of household chores so that your children want to help and it makes it something fun that can be done together.
Take naps when your children do – if they take naps! My son stopped taking naps around 3 years of age, so I would just have to lie down and I couldn’t really sleep. But he knew that mommy had a “rest time” each day, and I still do, and he has learned how to entertain himself during that time period for the most part. If they do still nap, then by all means take that time to sleep yourself.
If you are having a bad day, just tell your child, “I’m not feeling well today”. Don’t overload your child with a list of all of your ailments, though! For example, don’t go say, “My head hurts, my back hurts, I can’t sleep, I can’t walk very good” and so on.
Play simple games that only take 10 minutes or so at a time to play. If you are having a poor cognitive functioning day, these are the easiest games to play.
Even though they are not the healthiest food choices, always have pre-packaged or frozen meals available if you are too sick to cook dinner. We are not always up to cooking and why make yourself feel worse when you don’t have to?
Be creative and find ways to do things from your couch or bed if you need to. My son was able to read before starting school because we spent so much time on book activities, workbooks and flash cards from all of the times I couldn’t do anything else with him.
Have a TV or DVD player available in your child’s room so that if you can’t do anything else, you can still cuddle up with them and watch a movie. My son loves to cuddle and it is one of our favorite activities!
Have activities available and audio books so that your children can entertain themselves when you can’t.
I’m sure after writing this I will be receiving emails from parents who will want to go off on me because I suggest having pre-packaged meals and a television in the child’s room available. People who have no idea what we live with daily are always the ones who like to email me and point out what I’m doing wrong!
For those of you who I am sure to hear from by email, remember that this is not a perfect world and we do not live out of a parenting book. For those of us who are chronically ill, we have to do what we have to do to get through the day. We only have a certain amount of energy and once that’s gone – we’re done. There is nothing else to give. So if that means I have to occasionally feed my child a frozen dinner or pop a movie in the DVD player, then so be it.
Sandy – I think your suggestions are well thought out and productive on creative ways to spend time with your son. To the “naysayers” – Let them walk a mile (which they wouldn’t be able to accomplish) in your shoes.
I guess one of the few blessings for me is that these horrible illnesses hit me full force to the degree that I live with them now, once my children were in high school/college.
That’s a tremendous difference than parenting a small child. It’s still been a challenge to accept that to attend my son’s baseball games this spring at college are questionable, which is one tiny example of the way these illnesses have infiltrated my body and my family.
I could go on and on; however, I just wanted to give you a “thumbs-up” on your post. Hopefully anyone else who replies will do so with only constructive ideas and additions to what you wrote. We don’t need anyone berating us; we’re hard enough on ourselves as it is.
I added you to my blog roll. I’m so glad I found your site!
Sandy Robinson says
Thanks, Kim! I returned the favor!
Thank you so much for sharing this. I thought I was the only one out there who was trying to parent with CFS! It’s so wonderful to get an outsider perspective from someone who has been there already. Huge gratitude for your sharing â™¥ï¸Ž