Tuesday, September 21, 2010


So we took Sheridan to his first Cub Scout meeting last night. He recited the Pledge of Allegiance, the Boy Scout, and learned how to fold a flag. Keeping his attention focused where it was needed to be was a bit of a chore, but Karla did an admirable job of riding herd on him. We intend to get him a uniform on Wednesday. He will probably love wearing it.

I haven't written anything this week so far. I'm just letting my brain rest and trying to get things to come to me instead of forcing them. I've been forcing things too much lately. The problem is for me that it's not like always like building a structure, but more like going to a well. Throwing that bucket harder down the well doesn't make it fill with water. I've had a couple of snippets of ideas, but they would be more suited for the Shades series as opposed to either of the novels.

Today is Rowan's Learning Lane, so I will be doing my Starbucks thing. Maybe I'll think of something to write while I'm there.

It's still Charcot Marie Tooth Awareness Week, and today my post will be about the lethargy that comes with it.  In some ways it's the most aggravating part of this condition, because it effects other people as well as the sufferer, and it doesn't have any physically visible symptoms to prove it's real. Anytime I overdo, I end up paying for it by being wiped out for at least a day or two. When I went on vacation with my family, I ran out of steam after four days of being careful to try and not take it too hard, and ended up wiped out for nearly five days after that. It's ridiculous, but it's real. And what's even worse, is that it can happen if I get sick, get an allergy, and occasionally it just seems to happen for no reason whatsoever. But it's real...and it sucks.

And when I say wiped out, I mean it's now an effort of strength just to stand. Staying focused is hard, and trying to give the people around me the proper attention is difficult. It ain't easy. But it's something many of us just have to adapt to. And we do.


  1. I have a friend who also has CMT. She can attest to those days/weeks when she is literally a limp rag and can't get anything done. It happened while they were trying to move into their new house. She is semi-functional at the best of times, and not functional at all at other times. You're right, it sucks.

  2. And it's the part that the doctor's are just now starting to acknowledge. That was the frustrating part.

  3. We sparked some discussions on a yahoo group about fatigue and how doctors/medical materials do not include it in the disease profile. It came up in all of my conversations about CMT. Seems like we have to explain ourselves to everyone, which is even more difficult. I'm like you, for me the exhaustion is the hardest part. Drives me crazy and makes me sad for my family. Oh well, we do our best :)
    I'm glad we're out here naming it, though, because hopefully we'll get it legitimized as part of CMT. At least then I wouldn't feel so guilty :)