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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Take Control!

Mommy came to the doctor with me today – actually she comes to every doctors’ appointment with me. It’s very helpful having her there: she remembers to tell the doctor things that I forget; she remembers things the doctors say that I forget; and when I’m just too tired, she can tell the doctor everything that needs to be said.

(Mind you, today, I was VERY vocal: I asked Dr B his age & if he was married! He is…but, hey! a girl’s gotta try!)

We often lose our voice, when we are tired and not feeling good – and instead let other people take control. I know how easy it is to let that happen – I let Mommy take control a lot of the time. Sometimes, it’s just easier.

It is difficult to cope with doctors, specialists, alternative health practitioners, boyfriends/girlfriends/spouses, parents, bloggers, employers (if you’re still working), etc. Everyone has an idea of how or what you should be doing. Guess what people, they don’t know everything. No one knows you better than you.

It’s not easy to get back some independence, when we have let others take on what we should be able to do for ourselves. You CAN speak up.

If you are troubled with how you are being treated, you CAN say so. Tired of taking drugs that aren’t helping? You CAN say no to them (and your doctor). Your boyfriend thinks you are being lazy? You CAN tell him he is wrong. Your parents think you are ‘just depressed’ – you CAN say ‘no, please listen to me’ (whether they listen to you is another thing, though).

So, how do you start taking back control? Firstly, start saying no to the things that aren’t working in your life. When the stressors, depressors, and all round toxic forces have been eliminated (or at least reduced)….then you can return to ‘yes.’

So what will you say ‘no’ to today?

Yes! I Have a Father.

As you know, I spend a lot of time with my Mommy – she makes up a major part of my life so, if you are going to have a conversation with me, she will probably be mentioned.

BUT, this post is NOT about my mother. It is about my father – Yes! I have a father! You haven’t heard about him much, have you? I can’t even remember if he has ever been mentioned in my blog at all. I love my dad very much but he’s the kind of father who figures that he got me to the age of 18, so he has done everything that he is supposed to do and can now just leave me be. Nonetheless, and unreasonably, I continue to strive to attain his approval and admiration. Realistically, I’m never going to get it. Yet, for some reason, I still try.

Now, I feel pretty safe about writing about this topic here because my father has never even bothered to look at my blog. According to ClustrMaps, 22,516 people have visited this blog – but not one of them is my father.

I’m not sure that my father actually knows what FM is – he doesn’t read any information that I forward to him in emails, so I printed it all out. He still didn’t bother to read anything – the papers are still sitting on the backseat of his car. He has never watched any of my videos. He hasn’t visited my Facebook page.

When I received 91% for my last (taxation law) exam, he said what happened to the last 9%. When I graduated with honours, he hadn’t even realised that I was graduating with honours and then asked why I wasn’t the dux. I stood outside the training sessions of his (religiously) favourite football team for three weeks in a row, in the middle of winter, so I could get him a football shaped port bottle signed by every member of the football team – the bottle sits in his garage. You get the idea.

Now, Mommy and Dad have been divorced/separated for over 20 years, and Dad has been with his current ‘partner’ for nearly 20 years. We don’t necessarily get along all of the time. She has been upset with me when I introduced her as Dad’s girlfriend, but she has also been upset when I said she was Dad’s partner. So, I just don’t know how I’m supposed to introduce her.

My father called me today for two reasons (and not one was to check how I was going): firstly, he was upset about one of my personal status updates on Facebook. I had written that I had woken up at 3am one morning, giggling, because I had been thinking (in my dream) how the pasties that strippers wear on their boobs could work on a penis. I have no idea about what the rest of the dream was about, but I thought it was funny, so I put it in a status update. Now what is really interesting is that Dad doesn’t look at Facebook (or that’s his excuse for not looking at my page) – his partner does, though.

The second reason he called was to tell me that, if I was trying to phone him around dinner time, call the house line. His partner thinks that I am trying to avoid speaking to her (rather than just making sure that I reach my father), so my father decided he should say something. Oh, and by the way, when you talk to her, be cordial, ask about her mother, her health, her sons…

But there are restrictions, I am not allowed to talk about my Mommy, or her partner, or that side of my family because she doesn’t like it. It upsets her.

So getting together with my father and his partner is a particularly comfortable setting – NOT! I don’t talk about my condition because they are not interested; I can’t talk about other stuff that I have been doing because, mostly, it involves my mother; and I am not permitted to get too excited about anything because then I’m acting like a child.

I don’t want to upset my father (still seeking his approval) so now, more often than not, I just shut up; but today’s phone call has my father asking me to involve her more because she feels left out.

AAAAAAAAARRRRRRGGGGGGGHHHHHH! I just can’t get it right. And this upsets me.

The bloody phone call happened about 4 hours ago and I’m still fuming.

Sorry about the rant (but at least it’s a new one and not about doctors!), and I could go on for pages and pages. At least you’ve now been introduced to my father.