I have more than my fair share of blog posts swirling in my head. I sat down with the intention of (finally) publishing my review of Audioflood (the waterproof iPod shuffle for swimming). But today I have decided to post on something new for me, something that scares me…
I started to notice earlier this year that my arms and hands were getting really sore. Like a constant DOMS (muscle soreness). After swimming? Sore. After bootcamp and lifting weights? Very sore. Gripping my brakes on the bike. You got it – sore sore sore. And tired. And shakier than normal.
Charcot Marie Tooth disease is a progressive degenerative nerve condition, in my case a flaw of the myelin causes poor nerve transmission causing the muscles to atrophy from the periphery to the core. I have often written about the impact of CMT on my feet and ankles. How I am prone to ankle sprains. How it has taken me years to find the right running shoe solution. How the process of getting a good orthotics solution is so important.
With my attempts to improve my running, and my focus on triathlon and my weakest discipline, it has been easy for me to forget that when it comes to the body’s periphery, we don’t just have feet. We have hands. It’s not just calves. It is forearms.
And these too are affected by CMT.
Back in 2007 when I dislocated my elbow I learned just how disabling it feels to lose the use of an arm. My elbow was going out of joint when I reached to open doors. When I made pasta. When I stretched. Thankfully I found a talented surgeon who was able to make it so my arm stayed together.
But with the neuromuscular atrophy that is starting to impact my hands and forearms, there is no surgeon.
There is nothing I can do.
I see the shrinkage. I feel the ache. I massage my forearms and hands.
I drop my water bottles.
I look at my shake – the one that I have always had – and notice it seems stronger.
I put on my buddhist beads, covering my small wrists with an extra layer, hiding the reality.
The reality that my arms are atrophying.
And this terrifies me.