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!



pushback Ever swim in a river and feel the current building strength all around you? Find yourself swimming twice as hard to go half the distance? Ever wonder if you should fight harder, or just drift awhile?

That's what I call pushback.

I feel the currents when I test my limits. Pushback is the complex conversation that I have with my chronic illness.

My limits change daily. I don't always know when I'm going too far. I'm getting better at noticing the little signs that mean I need to Pay Attention. Pronto.

I've talked before about a Flare. A flare is a full-blown deluge of symptoms, a flood of challenges that can crush me. The pushback is a lot more subtle. And, if I can pay attention, I can respond and (hopefully avoid) a flare.

Sometimes I've pushed on purpose. Working or playing too much. I know what's coming. Other times, the pushback sneaks up on me. Maybe triggered by a trip to the grocery store, getting sick, fighting allergies. No matter what, I’ve learned a few strategies for responding. First, what are the signs?

Waking up tired. If I wake up more tired than the night before, and I’m dragging before the day begins, whoa… It means that I’ve used more energy than I had in reserves. It’s like healing takes a lot of energy, and sleep isn’t enough. Which is odd, considering the next sign.

Yet I can’t sleep. Which is so frustrating and weird because I crave sleep all day. Then, when I finally get the chance, I’m either wakeful, or I wake up a lot (every couple of hours) or wake up way early and cannot go back to sleep. Then I feel more tired all day.  It’s a messed up cycle. I’ve learned that not being able to sleep means that I need it all the more. Grrr…

Trips, Falls, Extra Clumsy. I wish I could say this was the cute-clumsy like is shown in movies, where the heroine conveniently trips into the hero’s arms or other nonsense. No, this is tripping over nothing. I misjudge corners so I clip the wall with my shoulder. Clunk my knee into a coffee table. Yesterday I kneeled to take a photo of the puppy. When I tried standing, I just wobbled and lost my balance, sitting on the pine needles. No harm done, usually. But the trips and falls can be disaster. I need to pay attention.

Lhasa Apso Puppy carrying a pine cone

Dropping Things. More clumsy moments that are usually more embarrassing than anything else. The biggest annoyance is that they make a mess, which makes me even more tired trying to clean up after my accidents. Yesterday I dropped coffee-beans all over the kitchen counter and floor. Sheesh.

Speak of making more work for myself just when I need to rest the most, I also Lose Things. Where did I put those keys? Or that permission slip for my son’s field trip? Losing things is a sign that I am distracted. My mind becomes unsettled, stirred up by all the work going on in the background trying to heal and recover. It’s not that I lose things on purpose. More that my memory is having trouble focusing.

Forgetting things. Oh, that field trip is tomorrow? I keep lists and a calendar. The forgetting often has to do with little details. Again, as though life has stirred up the details. I forget due dates for my kids’ projects. Usually, not a big deal. But family and friends (and teachers) who can be understanding are so important to me.

My mind gets foggy. I lose my edge. I can have trouble making decisions. I know this is pushback because decisions get trickier as the day goes on (and I get more tired). Though the fog isn't an active tiredness that can be cured with a nap or early bedtime. No, this is that background tiredness that is my body trying to heal while also trying to get everything done. I’ve learned not to go grocery shopping (or any shopping) while the currents are strong. I can be reduced to a paralyzed dismay trying to choose between one sale item and another.

Losing perspective/easily overwhelmed. I am very good at finding the positive in most situations. But I have moments where I cannot see my way forward. I feel out of control. Darkness covers the sky. So I look at the trigger. If the trigger is trying to choose a sale item, I’m in trouble. Or if it’s losing a permission slip, I’m in trouble. I recognize this deep water now (but that doesn’t make it feel easier).

Malaise/lassitude. Fancy words for bad moods :). It’s like tired with a little “doom and gloom” in the spirit of, “this only gets worse” and “don’t plan anything ever again.” The malaise makes fun ideas sound like massive chores. And I just want to crawl into somewhere quiet and dark and endless. Even knowing the mood will pass doesn’t always make it go away faster.

The good news is that recognizing the signs can be enough to turn the river in a better direction. If I ignore the pushback, if I push even harder against these reminders, then I get a flare or worse. The pushback is my first sign of rapids ahead. And, if I can surrender to the current, if I can slow down, lean into the CMT fatigue, then I can make a difference. If I really rest, probably days of rest, the currents often bring me back to shore.

I do have more interventions. For another post. Things I use to help restore balance to the force (heehee). Balance to my life. After weighting the difficulties, I like to find solutions. Perhaps we all have ideas.

I can’t control the currents. I just need to take my deep breaths. Relax. I can get very frustrated. And, actually, my greatest danger comes after I’m recovering physically. It’s like I throw myself into healing, and, once I’m not channeling all the energy towards getting well, it create a vacuum. A vacuum that fills with bleak waters. And that is actually harder for me. Getting through the mental pushback is the bigger challenge.

That’s a post in itself. For now, I need to rest. Like it or not. The only way out is through :)

Reflections of the sky in the river

*I’m sharing my personal experiences with Charcot Marie Tooth disease, a genetic quirk that causes me issues. My stories are not meant to represent everyone’s experience with CMT or chronic illness. My hope is that we can find common ground and build community.

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