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

Life as a Wired Zombie
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If Eskimos have a 100 words for snow, I have 100 words for tired. I have drag-down tired, cement tired (heavy), swamp-tired, underwater exhaustion. Down-a-well, lost-in-the-woods, midnight tired. Are you yawning yet? See, tired doesn't cover my daily experience with fatigue. I can't prevent it by going to bed earlier. I can't fix it with naps. I can't predict when it will fall out of the sky. I can manage it somewhat by moderating my activities and paying attention to weather. Cold triggers the fog-tired. Chores or going somewhere can cause problems. But I can't hibernate all winter (even though that sounds lovely :)). No, I have the carry the challenges. Try to smile. Try to keep myself together.

Because tired doesn't stay tired. Tired becomes snarling-tiger-tired. All irritable and quick to anger. Frustrated. Caged-tired.

And that sweeps right into weeping-tired. Quick to overwhelm, easy to break, fall apart tired. Fragile and broken and unable to rebuild again. And again. And again. Crawl-in-a-hole tired.

Which also leads to the danger-tired. Not driving or out in the world (that's the next tired). No, this danger is the dazed-tired. When the world dulls and things just don't sink past the haze. Appointments are missed. Conversations forgotten. Little moments slip past. And later, they rise up. Oh, I said I would. Oh, I meant to... Oh, that was today? This is the zombie tired. This is the get-through-the-day and figure everything out later. Forget the piles. The phone calls. The emails. They can wait. This zombie needs rest.

Until the tired-beyond-tired kicks in. Beyond exhaustion is a wired-kick. This is a manic-tired. Where the tired is just below the surface, but if I keep moving, if I stay busy and occupied, I can keep the swamp just out of sight. Of course, this strategy is sabotage, because, once I stop, the swamp rises thicker than ever. But for that brief, lovely wave of alertness, the fatigue fades a little. This is me out in public. Even in the evening when I finally lie down and I think I will collapse and rest, my mind burns bright with the all-day drive to stay awake. You want awake? Okay, we are awake! This is busy-tired, moving-tired, hopeful-tired.

I crave the manic waves, because the drag-down fatigue wears me out in so many ways. I just want to be here. To do crafts with my kids without measuring the effort of bringing out supplies and cleaning up messes. To take Ian on a neighborhood walk without weighing the consequences. To be here, now. And not dreaming of sleep.

Why this struggle? I don't know. I've dealt with it for most of my life. I have always loved long lazy afternoons with a book. And I could never take morning classes in college. But this crazy-tired, this started in my early thirties when I had my first big crash. My system went into a tailspin and never recovered. Fatigue is often discussed in CMT forums, but I don't think it is officially part of the CMT symptoms. I see it appearing more and more lately, though, in descriptions of CMT. I've heard it called paying the bills, crash, fallout, recovery-time.

Logically, it makes sense. I heard an explanation that if muscles are working as hard as they possibly can just to get through the day, they will need longer to recover and recharge for the next day. And when muscles are compromised in big ways, a typical day for anyone else may feel like a marathon to the CMT muscles. No small work. So the person with CMT experiences a lot more fall-out and fatigue from everyday activities.

And even though I have plateaus and tumbles (I tend to plateau for years and years between tumbles), I have flare ups. I have days where I wake up knowing it's going to be a rough road. And days where I feel strong and healthy. My CMT gets trickier as I get older. It's harder to predict. And I joke that I know why people move to warmer climates. This is not a freezing climate by any means, but I feel that there is a critical tipping-point where I have to work harder just to keep up (staying warm and healthy) so my system starts to crash. I never get my equilibrium back.

At physical therapy today, we thought of a strategy. Last year I tried antidepressants but the side effects spun me out even more than the winter-gloom-fatigue. This year, we decided, at least I know what's coming. I can't control it, but maybe I can feel less out-of-control. I know it will end.

I don't have answers. And this post was meant to share the tired-world and not my laments. Because I don't think I'm alone in this tired-landscape. Where all is gray and shadows. I feel the cloak over my shoulders. But I also love this time of year. I put up a lot of lights and I got books to read and tomorrow maybe I will light the fire and cuddle next to it with tea. Tired-land isn't easy. I will collect my strategies, not to make it disappear, but to make it tolerable. Because the swing from manic to angry to weeping is not good for me or my family. I want to work on regulating.

Step one, turn off machines earlier :). So good night! I will keep you posted!

Oh, meanwhile, in tired-land, we made a tent for Ian today. And saw a gorgeous sky outside the library. And Ian played air-fiddle while Anika practiced the fiddle. He thought this was hilarious!20121203-224856.jpg20121203-225058.jpg20121203-225109.jpg Wishing you hilarious moments and awake energy today! :) Thank you for sharing my journey with me :)

Calling Winter Light

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