Not Today, Not Again: A CMT Flare Up

Some days are broken. Some days I wake up and everything inside me protests daylight. Let's not move. Let's not get up. Let's not do... anything.

I didn't have words for those days a few years ago. They were days that I got up on the wrong side of the bed. Days when I felt down, weary, spent. I called them the Crash. They hit hard.

Everyone has those days. They are the day after recovering from the flu. Or the day after helping a friend move. Or a day after falling. They are the sore reminder to rest. They hold a mirror up to our limits and remind us that we cannot lift the world on our shoulders. We all have our limits.

I could predict those days. After an active vacation. Or after a full day of work with an evening event. After big adventures. I gave myself a day or two. Three if it was bad.

Then, a few years ago, when my own symptoms became louder (more aggravating), I researched how people handle chronic illness of all kinds. I stumbled across the idea of a Flare Up.

What?

In my mind, CMT was a slow degeneration leading to gradual progression and worsening of symptoms (my own words from years of explaining CMT).

CMT didn't have good days and bad days. CMT was a constant, a downhill coast where everything got worse over time...

Except. Not so much. I know that I have CMT type 1A (genetic testing). And I know CMT is different for everyone. Learning about good days and bad days opened a window for me. Did my choices truly affect my challenges? I knew that big choices had consequences, but how much control did I have over my day-to-day symptoms?

Then I injured my ankle. My physical therapist talked about a flare up. When one challenge triggered other challenges... I thought about it a lot.

And now I believe in the CMT Flare Up.

What is a CMT Flare Up?

The flare is a sudden onset of symptoms that may last a day or a week or longer. It can be triggered by events. I used to be able to predict them (the day after Disneyland, for example). Now it can drop out of a blue sky. A flare up can also be triggered by an injury. Or illness. Or cold. Or heat. Or stress. It can be low grade like a humming that won't stop, to all out battlefield noise demanding immediate attention.

I want to shine a light on flare ups as I know them. So this is the first in a series sharing the physical and emotional consequences of a CMT flare up, as well as my own solutions and triggers. I would love to hear how others get through the roar of CMT at its worst :)

I love a quote by Robert Frost saying, "The only way out is through." I find that thought resurfacing along this journey. Running away will not help :)

However, as I sank into my latest flare up last week, I realized...

I have to surrender. And, not only that, I have to dive into the depths. Turn off phones and email. Go quiet for awhile. Really give time to healing and recovery. No chores, no decisions. A big surrender.

Which is so hard for me!

I look forward to sharing these days with others who may understand my stories. We have strength together. I find that, as I get better at recognizing the signs, I can change my tactics quicker and avoid the big flare ups. Perhaps my trial-and-many-errors can be helpful to others out there going through similar experiences.

I'll be writing about how flare ups affect me physically soon. For now, I have an adventure planned tomorrow. So I have rest and readiness planned today.

Best wishes for easy days :)

[warning]Please note: I write about my personal experiences with CMT. I am not a doctor, researcher, or therapist. My experiences are my own and may or may not be familiar to other people with CMT. We all have our own challenges. Thank you for understanding.[/warning]