Day 1
I have a new project. Because I am crazy like that. September is CMT Awareness month and we aren't able to do the cool podcast interviews like last year :(. Too many glitches that we're still working through. So I thought I would give an insider's view of my ride, my life. A little bit, every day of September, that all together might shine a light on this CMT journey. I can guarantee some melt-downs and falls, good days and laughter. For me, it will be a discovery too.
I realized today, as I thought about this post, that I disassociate from the symptoms a lot. After all, how many days can I say Ouch before I sound whiny? I get tired of revisiting the same challenges. So I ignore them. And today, as I tuned back into the signals that I was getting from my legs and hands, I realized that I need to pay attention again. For those of you just finding me, I have a lot of history on the About page and in My Quiet Monsters. I have lived with CMT my entire life. Throughout my childhood, it was unknown (though I had symptoms. No one could figure it out). I was diagnosed at 13. In my teens, it was an inconvenience, a by-the-way. In my twenties, maybe an annoyance, but not really a big deal. My thirties was it became serious. Now, it's a daily dance of give-and-take, modify and create, and accept and persevere. I wake up, manage my day, and fall asleep planning around CMT. CMT is not just weakness in my hands and feet. CMT is everything.
Most people have no idea.
Today, I thought this post would be boring. I teach a kindergarten/first grade class two days a week. I cannot possibly teach any more days. Around 2pm, I felt pretty good. Granted, I wake up with my pain med and my coffee. And I rise up to the energy of the kids (and crash at home, but that's why I only work two days). I am determined to take one pain-med a day. Why? I don't know . . . I'll think about that one. So I felt pretty good. Then I did a painting project with the kids that had a lot of clean-up. We had an emotional end to the day- kids melting down in the last minutes of class. That took awhile to smooth out. And then I put away today's stuff and got ready for tomorrow. By then it was 4:30.
Driving home, I felt the symptoms smolder in my feet and legs. The pain stretched up my calves. Numbness and tingling down my legs, wrapping like ribbons under my skin. I needed to go home and put my feet up. But I didn't. I had agreed to help the school by volunteering at the local street fair. We ate quickly and I took the kids to the street fair. More walking. And I sat a little, but stood more, and by the time we got home at 7:30, my feet were snarling-mad at me.
Uh, oh, 10:14pm now and I promised myself no technology after 10pm. I stay up too late :). And I teach again tomorrow. We're having a Tea Party :)
But no gloomy energy here. No, this is my life and I embrace it with joy and appreciation. After all, who can complain about moments like this one two days ago?
Life is good :)
