Hard Times

As I was walking over to a building I saw my reflection in one of its many windows. I gave myself a funny look. Who was this withered looking girl hobbling down the sidewalk? Surely this girl couldn’t be me. I tried to shake the image from my head and kept on walking, refusing to look at any more windows.

Finally I made it into the building. I was there to see a Shakespeare play (Julius Caesar) with a bunch of other people from my school. I soon located my group and waited to be led into the theater. Suddenly I was reminded…stairs. Theaters tend to have stairs! I maneuvered my way over to one of the head teachers (all of the school faculty know about my CMT). I told him that I was expecting stairs in the theater and asked him to make sure I survived them. He was very kind and happy to oblige, and explained that you had to go downstairs to get into the theater. This was great news! Going down stairs is so much easier! For some reason at the time my brain didn’t make the connection that this meant I’d have to go back up the stairs when the play was over.

The play finished. I’d enjoyed it. Then the realization of the “stair-situation” struck. Uh-oh. I was only four rows from the bottom too. As a man called out the schools one by one to leave the theater, I scanned my eyes up the stairs; the stairs weren’t too high, but there were a lot of them. Then I heard my school’s name called. I made it up a few stairs and then my legs just quit--I couldn’t do it. Luckily one of my school’s head faculty saw my dilemma and came over to assist me. I don’t know what I would have done without her, maybe I would have had to crawl up the stairs. She let me lean on her and almost pulled me up the stairs one by one--it was still a long trek, and I swear I heard some guys a bit of a way behind us saying “MOOOVE!”. She said I’m a real trooper.

So I made it through, but it was very emotionally and physically frustrating/stressful.

I cried myself to sleep last night. I’m scared. My walking is continually getting worse, and to be honest, I worry about how much longer I’ll be able to walk at all “reliably”. Today I couldn’t walk without pain. I feel like I’m just watching my body disintegrate more and more each day. Today I also got some excruciating chest pains, that lasted well over an hour. They started in several places around my chest/upper stomach, and then settled in the middle of the top of my diaphragm. It felt like someone was stabbing me with a knife over and over, and some trouble breathing came with it. I honestly don’t know what it was from. It could be CMT, as I’ve heard several times that CMT can cause breathing difficulties and chest pain. Either way, they worry me.

I’m starting to look for a really good CMT doctor. If anyone knows of one, please let me know. I’m looking for someone who will really work with me, and knows what they’re talking about. I’ll be doing a lot of research on doctors and I’ll post any interesting results I find.