Have you tried to explain chronic fatigue syndrome and/or fibromyalgia to some-one who just doesn’t get it? How about to your kids?
Explaining why you can’t do the things other moms and dads do is a challenge but Melinda Malott’s book How Many Marbles Do You Have? Helping Children Understand the Limitations of Those With Chronic Fatigue Syndrome & Fibromyalgia provides a simple, easy to understand way to do that. How fabulous to finally be able to say to your child, “Here’s a book about what’s happening to me.” It’s a great way to explain ME/CFS or FM without overburdening your children with things they don’t need to know and probably won’t understand.
What is your story with ME/CFS?
Melinda: I became symptomatic in March 2006. At the time, my son was 18 months old and my daughter was 3 ½. My symptoms progressively got worse until May of 2009 I was reduced to the confines of my home almost exclusively for 2 years. I have had some improvement. My improvement coupled with a management strategy has really helped me. I am still unable to work or do any physical exercise to speak of, but I lead a full life as a wife and mother of two.
Why did you choose to do a children’s book?
Melinda: I remember the day my children came into my bedroom and both started crying. They thought I was dying. I was too sick to try to explain, and as the clouds dissipated I came up with the marble and jar analogy. I had looked online for resources and there were NO books to be found for children.
How did you approach telling children about ME/CFS?
Melinda: I have a bachelor’s degree in nursing and a Master’s degree in community health education, but my formal education did not prepare me to explain something as complex as CFS and fibromyalgia to young children. I decided rather than try to explain something I couldn’t understand that it was best to try to help my children understand my limitations. Using a jar and some marbles I was able to say yes and no without having to say I was in pain, or I didn’t feel good or I was tired. I could simply say I was out of marbles. Don’t get me wrong, they know I have bad days. I just don’t feel the need to amplify that for them. They see it first-hand. The marbles and the jar lessen the notion of a momma who is suffering.
You can visit Melinda at her website.
This is the book we’ve been waiting for—a story for children of parents with Fibromyalgia or Chronic Fatigue Syndrome. In fact, I plan to buy a copy for all my loved ones, so they’ll better understand what my life is like. It all depends on how many marbles are in my jar each day—the perfect metaphor for explaining the unpredictability and the ups and downs of Fibromyalgia and CFS. At the end of the book, Malott writes “… a heart full of love beats a jar full of marbles any day.” Not only is this book informative and insightful, it’s a heart full of love in itself.
Toni Bernhard, the author of How to Be Sick