Marbles, Spoons & the Whole Megillah

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?

marblesExplaining 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?

MMMelinda: 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

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Spoon Week Challenge

I’m a little late on the uptake here, people, but we’re in the middle of the Spoon Week Challenge.

SpoonChallenge

A reader of Fibrotastic Mom approached her with an idea for a challenge that will spread awareness.

Until Sunday, August 18, 2013, take a spoon with you wherever you go…anywhere …to the store, to work, to the beach, to a fair or festival or any kind of outing ….take a spoon with you!  Then, take a photo of yourself out in public with the spoon in hand, and then post it on Facebook!  You can also post it on Fibrotastic Mom’s FB page, on my FB page, …or on Christine Miserandino’s page: But You Don’t Look Sick.  (Yes! The original author of The Spoon Theory, is on board with us on this).

Once again, the idea is to flood FB with photos of us all holding spoons.  Why? So people will ask us why we’re holding a spoon.  That’s our opening to talk to them about Fibromyalgia and educate them about what a day in our lives is really like.  How we only have so many spoons to use each day, for us to make it through.

If we can get FB flooded with these photos, just think of the awareness and education that we’ll be able to spread!  This could be huge!  – But it’s going to take all of us to make this work.

You are invited to steal the photo above, and turn it into your FB cover for the week.  You could also make the pic of you holding your spoon out in public, your profile pic!

Don’t forget to send the photo (or upload directly if the page allows that option), to Fibrotastic Mom, Christine’s, or my Facebook page.  You can even upload the photo to all three!!

If we don’t educate and advocate, then there will never be enough pressure to force enough research to find our cure.  Let’s all jump on this, and make it the biggest, best Spoon Week that we can make it!

Energy (and Persistence) Conquer All

We have all learned that we only have a certain amount of energy (spoons, pennies, etc.) and we need to make a conscious choice each and every day about how we’re going to expend our energy. But, sometimes, we don’t even realise that we are wasting energy on certain emotions…

Are you wasting your energy on stress, fear, anxiety, bitterness, anger, or jealousy?

These emotions have all been linked to FM (and heart disease, high blood pressure, depression and a host of others.)

There are some wonderful emotions – Love, Hope, Joy – we just don’t seem to lose sleep and energy over them.

It’s the negative emotions that drag us down, leaving us feeling tired and fatigued. Yes, we sometimes need a good cry but, how tired and worn-out do you feel afterwards?

You are NOT alone – we all know (in our heads) that we have each other (and 700 more in the VISIBLE Army); you can see it in the supportive comments here, on Facebook and in the Forum – we all have fears and anxieties….

BUT we all have the ability to create our own realities. Everything we do, everything we feel always begins with a thought.

Thoughts lead to emotions and ultimately, behaviours. Thoughts, especially in humans, are not particularly independent: if someone says to you, “I know that Fibro is caused by…,” subconsciously, you analyse the statement – Do I know this too? Why does he think I care that he knows this? Is there anything else about this that is significant that I am missing? I know that; does he think I’m stupid?

So one simple thought can mean much, much more than that one thought. If the thing the person said was something you didn’t know, it might make you feel stupid, but it isn’t the feeling “I am stupid” that is draining your energy; it is the thought over and over again in your head “I am stupid” that is doing the damage. (This is what cognitive therapy is about.)

Therapeutic pioneers shared one important belief: clients must challenge what they think, feel, and how they behave based on the power of cognitive understanding. The belief behind the theory was that distressing emotions are typically the result of maladaptive thoughts. Change the thought, and the emotion and behaviour will also be different. Change the negative thought and the negative emotion will no longer drain your energy.

So it’s the thoughts that we need to work on:

  • Practice thinking positive thoughts when negative emotions sneak up and you feel yourself sinking.
  • Realize that having negative feelings will just hurt you, not them. So there is no reason for you to have any negative feeling.
  • Practice thinking about what you let in your mind (and life).
  • Realize that you can’t please everyone. In fact, nobody can. Sometimes you need to just let some people go. Realizing this will relieve you from a lot of unnecessary burden so that you can focus on the people who you can positively interact with.
  • Practice thinking positive thoughts all of the time – listen to motivational audio program to feed positive thoughts into your mind; Talk to a positive friend who can encourage you; remember your favourite quotes to give you inspiration and motivation (or have notes with these quotes around you – on the bathroom mirror, on the fridge, on the car dash-board, etc.).

It’s definitely not easy but it will let you conserve your energy for the good things in life……