My Charcot-Marie-Tooth symptoms have been present since toddlerhood. Therefore, I have instinctively developed little “tricks” in my daily life to cope with my limitations. When my CMT Clicks buds and I discussed writing about our little coping mechanisms, it forced me to take a real step back and evaluate my daily routine to figure out what I do differently than the average person. It was a great challenge and a real eye opener about how much of a role CMT plays in my life without me really realizing it.
I can’t blow dry my hair. My arms tire easily and holding a blowdryer with one hand and a brush in the other, simultaneously, is just too exhausting. Life is too short to wear myself out before the day even begins. So I use a bit of straightening product, run a brush through and done. My hair style has always been of the wash n’ wear variety.
No joke – my Dad cut my meat until I left for university. Not wanting to have to ask for help in the university cafeteria, an occupational therapist suggested a rocker knife. Rocker knives are awesome as you have control and can apply downward pressure to make the cut.
Also in the food category, I instinctively do not order certain things when eating in a restaurant. Rice is one. Gathering little pieces of rice onto a fork is tricky and always leaves a mess on my placemat (and sometimes on my lap.) Rather than having the wait staff and fellow diners think that I have the eating habits of a toddler, I just steer clear of anything small that is hard to ply onto a fork.
My job is not a physically stressful one. And my day is pretty structured. But weekends are a different story.
The big task/event for the day is almost always planned for the morning. That is when I have the most energy. And as the day progresses, I always think ahead and plan breaks or less strenuous activities to allow my body to recoup.
My first real boyfriend recoiled when he smelled Rub A535 (a cream for joint pain relief) on me. I should have known right then and there that he was not the guy for me.
J. is *the* guy for me…for a myriad of reasons. But the CMT reasons include, but are not limited to: waking up in the middle of the night and rubbing out a leg cramp, doing all household manual labour, grating the callouses off the bottom of my feet, clipping my toenails, and putting together a foot bath for me.
How did I know J. *was* the guy who was in this CMT-thing for the long haul? About 6 months after we started dating I needed hand surgery. He practically moved me into his dorm room and took care of everything I needed…including shaving my armpits. A guy who will shave your armpits is a keeper.