Living with CMT this May

I am inspired by a group of us women with CMT having conversations on Facebook and on our blogs. It is so nice to connect with others who understand the stories, who share similar experiences and challenges. I love the Internet!

I am feeling much better- much better is still far from all-the-way better. I got stronger anti-inflammatory medicine this week that dulls the hip-pain. So I am not in the red-zone of daily pain. Still yellow-zone, though. Hopefully soon I'll get back to green :).

May is so intense. I have a big writing/crafting project due at the end of the month. So every spare moment is devoured by trying to meet a massive goal that may not be attainable. In the middle of it all is this drama with my hip and end-of-the school year teaching. I take deep breaths but then I panic again :). The Crash is my daily life these days and I have to push through even when I am dragging.

My pretty words about dancing with limitations and not 'overcoming' challenges do not match my path this month. I am push, push, push this month. I have to overcome the challenges of CMT. I am chasing a dream. I have said before that I hope to find Acceptance one day. This is not the day. I 'own' my CMT, for sure, and I often accommodate for myself. But I go between acceptance and defiance. This month I defy. And I know I will pay later. My hands are crazy-tingly. I wear a brace on one or the other hand every day. Last night my hand cramped so my fingers curled and I had to use the other hand to straighten them out again (wearing the brace on that hand now). I've never had that happen before. Yet, I still have big plans for today.

I have a deadline. A couple more weeks. Then I'll slow down and heal. Hopefully the CMT gives me that chance. For now, I am grateful for the skills I have. I am making fairies. And that makes me happy.

Aother CMT myth (in my experience) is that CMT is a slow degeneration of nerves. I assumed, growing up, that meant one day was very like another with skills fading away. Instead, I have good days and bad days and bad-bad days. I was drawing at school on the chalkboard and a student asked if I could draw a fairy. "Sure," I said, "If my hand cooperates." *I share CMT stories with them in the hopes that they learn disability is difference, not less-than.

I find that my skills fluctuate a lot. From day to day or even from hour to hour. Sometimes, when doing fine motor tasks, I can make steady, even lines. Other days I struggle to control the pen for the simplest lines. Part of it is muscle-fatigue, but another part is a mystery to me. The hardest task for me is drawing the fairy-faces on beads. If you have followed me over the years, you see them getting more and more simplistic. I love the simple faces, but even those can be frustrating. I am so grateful when my hands cooperate and they turn out well.

I suppose I feel the race. I am trying to outrun my deteriorating nerves. That's why this dream matters so much to me. I don't know how much longer I will be able to make these. And it breaks my heart. Yet, I also appreciate each and every one. They are a celebration of today.

A good day. I hope :)