Welcome! Lenkaland shares my adventures in creative photography, raising two kids, writing, living with chronic illness, raising a daughter with dyslexia, and swimming with mermaids. Hope you have a nice stay!

Talking about medication still feels forbidden to me, like I should hide whatever meds I need.  After all, if I was "tough enough", I wouldn't need medications, would I? Is there strength in saying enough?


Two weeks ago I had enough.  I had enough of the fatigue-fog, the grime coating every moment of the day, the heaviness.  I had enough of getting snippy with my family by afternoon.  I had enough of plotting ways to sneak off for a nap which wouldn't help anyway.  I've got the deep-fatigue.  The too-much, swamp-muck, let-me-sleep-for-100-years fatigue.  The faitgue that feels worse when I wake up in the morning.  Which sounds backwards.  My CMT friends will understand.

Fatigue is a big discussion in the CMT forums.  We all recognize it, except for my insurance company, who won't approve the one medicine that helps me a lot.  CMT isn't listed as a legitimate cause of fatigue.  Still, if they would think a minute . . . my muscles are weak.  They work twice as hard to do half the work.  Many are compensating for other muscles that are weaker, so secondary muscles become the primary muscle. Little things take big energy.  And recovery is slower.  It makes logical sense.  But I guess we need more scientific studies to prove that fatigue is real for many CMTers.

Oh, well.  Until then, I'm on my own.  With this weighted blanket of tired.  And, like I said, I had enough.

So I tried half a tablet of a medicine my neurologist gave me as a sample.  And, oh, the sky opened.  The sun shone down.  This is amazing, wonderful . . . normal. How I miss normal.  I remember feeling like that, about ten years ago, when "What next?" was an opportunity instead of an obstacle.  I buzzed through the day, not feeling wired like on caffiene, but clear, like I had wiped the mist off a fogged window.  I felt here.

A solution, I thought, I found a solution.  Not every day, but a break.  A much needed break.

The day was great.

And then . . . awake.  Awake at 1am, 3am, until 4:30am.  Yikes!

Well, I thought, I'm getting used to it.  Tomorrow will be better.  And I took another half because I needed to get through the day.  And I figured it couldn't be another sleepless night, right?

Wrong.  4:30am.  Again.  So by day three, I was a wreck.  Three hours of sleep.  I took one of my dwindling supply of the good medicine (the one insurance will not approve) to get through the day.  That one was better during the day and I fell asleep fine at night. That day, though, was a weepy, angry mess!  We had to go to an event early in the morning, so I was really surviving on a couple of hours of sleep.  I was all brittle glass.  But I did fall asleep that night.

I would like to say that I woke up feeling better, but it took a few days to get back on track.  And, by back on track, I mean back in the fog.

Back to the struggle.

But at least I understand this story.  I do my best.  Try to rest.  While getting everything done :)

I might just have to pay for the good medicine out-of-pocket.  Except, oh yes, my husband's still looking for work.  So it's back to coffee and Pepsi.  And wading through the day.  Oh, well.  The crazy adventures continue :)

With CMT, It's the Little Things

First Day at the Nevada County Fair