Getting dirty looks, even verbal confrontations when you use a handicap sticker, because you're young, you don't have a cane, a wheelchair, or a cast. People assume you are not disabled and certainly not in pain.
Doctors, nurses, and physical therapist Googling CMT in your presence and telling you, "Wow! I've never heard of that before!" They look at you like they've found the Loch Ness Monster.
You are so embarrassed by your differences you never let anyone see your feet. You tell your teaches not to call you to the white board because your hands shake. You think you're ugly and deformed. Instead of celebrating your uniqueness you end up hiding and seriously damaging your self-esteem. Until one day you realize you are beautiful and special, you always have been, and always will be.
Trying on shoes may be single handedly the most depressing thing you can do to yourself. You cringe at the thought of walking into a shoe store. Not only does it hurt to slip your foot in and out of shoes, but it's super embarrassing when the guy with the foot fetish comes over and tries to assist your foot into a shoe that's way too narrow! You end up buying shoes you can't stand in let alone walk in. You take a picture with them on and then they sit in your closet collecting dust.
One step you are fine, the next you are literally crying out, "Ouch." You don't know where the sudden pain came from, but most of the time, it hits at random and it hits hard. Once you hit the "ouch" step, all your steps are that way for the rest of the day.
Having to swallow your pride to line up for the, "People with children or need extra time line," at the airport, because you're in too much pain to stand. At the same time dealing with your friends who are too embarrassed to line up with you and a mean old lady who says, "You don't have any children!"
When your feet and hands get cold, it doesn't matter how many layers you put on them, they are freezing and in pain until submerged into a scolding hot bath.
Being woken up by such bad calf cramps you have to stand up to relieve them.
Having a hard time writing, using keys in doors, buttoning clothing, chopping food, and squeezing a toothpaste roll, because of lack of sensation, nerve pain, and tremor in both hands.
You know you should be taking a break to rest during the day, but you don't. You keep moving, because you know the minute you stop is when you'll feel all the pain. And at some point for your own sake, you realize, you have to slow down and try to tell your self it's ok to just sit.
The top ten
we are all so different yet so similar - Some of chelsea's experiences with cmt
Yoga for People with Charcot-Marie-Tooth & Muscular Dystrophies