Hanging Up My Dancing Shoes

We recently went to a conference for the United Mitochondrial Disease Foundation. I have not mentioned what illness I have up until now because I want this website to be open to anyone suffering with chronic anything...this article though is about my illness, mitochondrial disease. The blog is still of course, open to anyone and chronic anything.

Mito what? Those two words are very powerful. They are powerful, because I hear them a lot. I  also at one point said them myself. But now, me and mito are good buddies. Mitochondrial disease is a rare disease that affects both children and adults in many different ways and in many different levels of  severity. I predominantly have skeletal muscle and GI problems. I have tremendous fatigue and pain on a daily basis. I have what I call my "new good" days which is when I only feel tired and some pain, to other days where I am bed ridden and in a great amount of pain. There is no cure and really no treatment for this disease. There is also a lack of research, physicians, and general knowledge in the public about mitochondrial  diseases. Mito what? I bet you might have said the same thing.

I want to bring awareness to the United Mitochondrial Disease Foundation. These are wonderful people who work to help families, create awareness and promote research. You can find out more about the disease and pass it on at http://www.umdf.org/ Breast cancer has a pink ribbon, we have a kelley green one. Breas cancer has big money, we don't. You can buy a pink toaster and donate money to Susan G. Komen, but to the UMDF? Buy a green toaster and you just have a cool green toaster. We need to have the awareness and finances of the wonderful Susan G. Komen Foundation, but we aren't there, YET.

So why did I title this article hanging up my dancing shoes? Well, I'm wondering if I have to (metaphorically). That is pretty pessimistic, or is it simply realistic? As many know, chronic illness robs a person of certain things in life depending on the illness and severity. I once was nicknamed the "Energizer Bunny" but now you can just call me the "pooped out princess, " or "Galactic Acid Girl" as we joke in my family*. I am learning that I have to conserve energy almost as if saving pennies to buy a gum ball. I save up bits of energy to do what I want...take my sons swimming, to the library, go out with friends, do crafts, have a date with my hubby, attend a wedding, even simply visit with a friend. It is weird to get used to this. I still am not. I think though as a part of healing my spirit, I need to accept that sometimes I need to hang up my dancing shoes. I will never be the same, so how do I cherish what I do have and use my energy best?

The answer: I don't know. I am learning my limits. I am also fighting my limits, which takes energy. I think I need to accept my limits and learn to thrive within them. Goodness, this isn't just hard for me, it is a full on war raging in my mind and spirit.

I get so fatigued, so easily that I can't fully participate in the things I want to. This makes me sad. I feel like I am missing out. It angers me. I feel like I let my children down. I feel ripped off. When I force myself to do things I don't have the energy for...I pay for it and so do those around me, many times for days. When I sit out, I spend energy being angry and upset. Acceptance...isn't that the key to all our problems? The 12 steps say so. What do you think?

So, what does is really mean to hang up my dancing shoes? Let's run with that metaphor a minute. If they are hung up, they aren't in a box, shoved in a corner. I sure can't stand to spend the rest of my life boxed in and parked on the couch. But my dancing shoes are hung up...that implies they get used sometimes. Notice, they are not on my feet, they are on a hook. But they are visible, waiting to be used at the right time and the right place. Sometimes I might have to let them get dusty. They might not look as worn as they used to. But when I get to put them on and "dance".....aaaaaahhhhhhhhh! The beauty of the moment is one to be cherished and remembered. I still have my dancing shoes and I can still enter the dance, but the dance has changed and I must change my heart and mind to go along with it.

Acceptance? Mito what? To dance or not to dance? These are monumental questions in my life. What are yours?

*A side note about Galactic Acid Girl. One night at dinner my youngest son asked "so you have too much galactic acid in your body that makes you tired and sore, right?" Oh, the words of a child! He meant Lactic Acid and he was right. I love the humor of calling myself "Galactic Acid Girl" a new superhero! Laughter is good medicine.