Looks like I might make this goal happen of writing every day this month. I missed one for traveling, but still. Pretty good! As with all journeys, I am surprised by my discoveries along the way. I assumed I could share my stories and answer questions. And that's fun. But I've also found new friends and new questions. Like yesterday, with this article.
Before, I liked reading "Does not affect life expectancy" on most CMT descriptions, like on the CMTA website (and I totally appreciate the CMTA, I'm not criticizing them) and on the National Institute of Neurological Disorders and Strokes (they use the rare instances clause).
Then I found this letter and it broke my heart.
Basically, the information is changing. There are more and more stories about people with CMT having issues with their phrenic nerve (which controls the diaphragm) deteriorating, and then breathing becomes impaired. Not dramatic, but less functioning (as with hands and feet). So, especially at night, lying down, the body might not be circulating enough oxygen. Clearing out toxins. Sleeping well.
Symptoms of this include fatigue and morning headaches that fade and may feel like a hangover.
Check and check for me. Now, I only get that way when I've been busy, when I work hard through the day. I'll wake up feeling worse than the night before. Anyone who has read my posts for awhile has seen these Crash and Fatigue blog posts.
And I like to think that 'very rare' is definitely not me. I can walk without braces. I get the, "You look great!" comments.
And I'm sure that I'm breathing just fine (almost sure :)) Just the day to day curiosity that gets me thinking. When I was diagnosed, my scoliosis was not considered CMT-related. Then they updated the data and scoliosis became part of the CMT fact-sheets. Some say that scoliosis is rare and others say it's common. So am I 'very rare'? Should I worry about the 'very rare' symptoms?
I suppose where I am going with all my speculating is that it is hard to manage a disease that remains so mysterious. And it's hard to say, "Oh I expect to feel tired" vs. "Maybe I should investigate with specialists."
I did call and make a neurology appointment. But the appointment isn't about breathing. I need a winter management plan. The past few winters have really tested me and I'd like to be better prepared.
Oh, the other shift that I see in information is how CMT patients handle cold temperatures (and heat-stress). My neurologist was really concerned about my cold feet last winter. I use CosySole slippers at home, which help a lot! But I can't wear them everywhere. So now my circulation is affected along with my nerves. Huh? Then I saw this article about strange Cold Stress Responses in People with CMT.
How do I hold all of these stories?
Most of the time, I ignore them. It's only because of this month that I starting paying attention to new articles, research, and developments. I manage what I have on my plate today and figure I'll get around to the rest when needed. But what if I am missing a significant problem, as with the girl in respiratory distress? What if I am causing long-term harm by being strong and tough and brave?
I don't know. I've learned enough from the internet that I don't get alarmist. I don't panic. But I do wonder . . .
curiouser and curiouser :)
there's a theme- I live down the rabbit hole, where the world is topsy turvy and I am too big, or too small, or never quite fitting right :)