On Different Days

On different days I'm different too. You'd be surprised how many ways I change on Different Colored Days. ~Dr. Seuss

When I was young and first hearing about CMT, I was told that my life would follow a (mostly) slow path with progressive challenges. I would "get worse" over time (meaning weaker and clumsier). It would be gradual and I probably wouldn't even notice it happening...

Didn't sound too concerning. We all get older. We all change over time. I just had my own path. No big deal.

One of my biggest moments along this journey was when I realized- this isn't a straight path. I have bad days. And better days. My symptoms flare up. And calm down. I can go for weeks thinking that I have the answers. Life is finally easier. Then, bam! I'm knocked back to the questions.

I don't know if this is true for everyone with CMT. I do wish that someone had told me that CMT could be erratic.

I have difficulty making plans, now. Because I can (mostly) predict the tough days. I know if I go on a fun adventure, if I walk around a lot (by my standards), even if I have a really creative day- I know the next day will be rough. I know that I wake up, even on my best days, with about a quarter tank of gas. And if I burn fumes it may take me days to get back on track. I can't always predict how that's going though, so I might make plans on a day only to wake up with the fog of fatigue... Or I may plan downtime that becomes confining, and I just want to go on an adventure.

I must look flaky, or spacy, or unreliable. And I am. I am at the center of it, though, and I wish I could control my energy better. I wish I could get ahead of the CMT puzzle.

Just this week, I caught a cold. I knew that I would. After all, I had two days of fun in a row (how dare I?). I went sailing with Anika on the San Francisco Bay. I was the lucky historian getting to take photos, which I will share soon, promise. I drove there and back, giving me a 5am-9pm day.

Then Halloween. And I rested for a couple of hours. We also went trick-or-treating (how dare I?)

Anika was a unicorn and Ian was Dash from the Incredibles so he could run faster in real life. Then he saw the Wolverine Claw and added that to the costume. Go for it, superhero!

Then inservice/work day at school. So of course I got sick. I asked for it, didn't I? (haha)

Now I'm on day four of being congested. I wonder how long I wait before I concede to bronchitis and call the doctor. Friends want to make plans for the weekend and I can't commit. I should feel better but I don't know if I will feel better....

Here's the tricky thing, though. I went to Physical Therapy yesterday (yes, I'm going again for a bit to help with the new braces). And I was a completely different person from last week. I kept up with lots of exercises last week. I balanced. I wasn't even wore out afterwards.

Yesterday. Whole different story. I could barely stand on my right foot without wobbling. The simplest exercise was a big challenge. She said, after about ten minutes, "I can see you're tiring." Meaning my muscles.

What? Grrr!!!

And I don't want to crawl in bed for a few hours because I probably won't feel any better, and then I'll have even more work to catch up on. I am not dramatic-sick where I can put life on hold. I sure am affected, though.

Everyone gets up on the wrong side of the bed sometimes. Everyone has 'off' days. My off days just involved dropping everything (even my girl noticed me dropping everything over the weekend) and slogging through the day.

Another thought I had for explaining CMT for people without it is to think of ankle weights. Strap them on in the morning. Walking isn't so hard, right? Now, don't take them off. Instead, keep adding a little more every hour. You can get around, right? By the end of the day, though, I bet your legs are a little fussy :)

Now wake up the next day and add even more. We don't usually get stronger with CMT (at least not weight-lifting strong). We get weaker. And some days it isn't gradual. It's a big crash.

I have so many fun projects. I am writing for National Novel Writing Month this year (NaNoWriMo). I am already behind the goal. I take progress. Any progress. :)

And Fairy Crafts will be at wonderful events next month. So exciting.

And I have about 1000 beautiful images on my computer waiting for editing and posting.

Lots of fun to be had. I don't have time for CMT, honestly. Which is why it forces me to make time.

One day or another :)

Because good days find me too.

Many, many good days :)