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.

Not Today, Not Again

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…Only Way Out

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 :)

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.

 

You might also like:

Going Where the Wild Things Are

This week I learned how to find the Wild Things. I stumbled across an announcement for Maurice Sendak: 50 Years, 50 Works in Reno, Nevada. We live near Reno. We could visit! I was sure the dates had passed but they hadn’t. And it just so happened that the one Saturday that we could visit was the Wild Rumpus celebration. What luck :)

So we drove over the mountains and through the woods to Where the Wild Things Are.

wpid10824-NevadaArtApril122014-11.jpg

And found a wonderful museum. The Nevada Museum of Art gave awesome art adventures.

wpid10806-NevadaArtApril122014-2.jpgA giant elevator for carrying large artworks to other floors was big enough for a party. We visited the rooftop and found lovely views.

wpid10826-NevadaArtApril122014-12.jpg

And interactive art that amused Ian (mostly).

wpid10828-NevadaArtApril122014-13.jpg wpid10830-NevadaArtApril122014-14.jpg wpid10832-NevadaArtApril122014-15.jpgThe Sendak exhibit shared illustrations, lithographs, sculpture, and Max’s boat.

Anika and Ian made tambourines for their own Wild Rumpus.

We visited a gallery of Italian Baroque paintings (I wasn’t sure if I was allowed to photograph in that area). The tambourines were only a little distracting. We hope :)

From there, we found a contemporary art exhibit, which inspired even more discussion. Can tape and magazine cuttings be called art? Yes indeed :)

What amazed me was that Anika sat in the masking-tape chair and I snapped the photos. It wasn’t until I went to post one on Instagram that I realized the wall behind her had an illusion of a vanishing horizon. In the room, so many elements overwhelmed me that I didn’t even notice. Another reason I love photography :)

From there we made our own Wild Things crowns and saw Curious George. They didn’t want to pose with him. Ian hid behind me, actually :)

King and Queen of the Wild Things!

Ian realized he could turn his crown upside down for a new look :)

wpid10869-RenoAdventureiphoneApril122014-25.jpgWhat a great surprise of a day!

The Sendak exhibit is up until April 27, 2014. If you are anywhere nearby, go go go :)

We will be returning to the museum for sure. We all loved seeing the art in person. Even the graphic Italian Baroque paintings. I told Ian they were the YouTube of their day, sharing stories with everyone. He was amazed.

Off to see what little adventures Sunday holds. The King and Queen of Wild Things want to go to the park :)

Wishing you happy adventures!

 

 

You might also like:

A Few For Project 52 in 2014

How quickly time slips from one day, one week into the next! A big project is taking a lot of my time, so this is my first chance to post in awhile. Luckily, I bring my camera everywhere so I have lots of choices for these images.

I choose you!

13|52

12|52

12|52

Divine Sunshine

11|52

besties

10|52

bear

9|52

During these weeks, we visited the river. We celebrated a cousin’s birthday. We enjoyed a glimpse of spring warmth before winter found us again this week (photos for that soon).

We got to do what I love best. Spend time with people we love. I am grateful :)

Wishing you a lovely week :)

How is it 14 weeks in 2014 already?

Control is an Illusion

wpid10734-LenkalandRiver3142.jpg

March arrived like a lion. Rain and thunder and overcast skies.

Yet I am the lion this week. I drove for my daughter’s field trip. Spent a day photographing the sweetest six month old girl. Researched the tech plan that I’m writing for school.

I expected to feel wiped out this morning. And yet I don’t. Hurrah!

I do celebrate the happy surprises. And it’s not all roses. I irritated the nerves in my foot so they are flaring up, burning. I’ve worn a brace on my right wrist most of the week (I have to keep this short). I had a melt-down or two. It wasn’t easy…

I’ll take it though. And when the skies clear I question everything. What am I doing right? Is it the vitamins? Is it the exercises and stretching? Am I getting more sleep? How do I keep the good-track going on track?

Ha. If only.

I saw a big conversation on FB this week about CMT and medication. Basically, the commenter was ‘worried for everyone taking prescription meds…because a healthy lifestyle should be enough.’

I spoke to my CMT friends. The idea hit home because I have been on the path from not needing meds to occasional to (now) meds to maintain. It took so much struggle for me to admit that I needed help. Because I wanted control.

I wanted to believe that good choices lead to good outcomes.

After talking, I realized that I was happy for the commenter, that he or she hadn’t found that place where the options look bleak. And you’ve tried everything. And nothing gets better…

Not a good place.

I’ve been there. And I learned. Control is an illusion.

ControlisIllusion

Don’t get me wrong. Our choices matter. We must be healthy. We must rest. We must take care of ourselves.

At the same time, we cannot feel responsible for every weakness and break-down. We cannot feel guilty about new challenges or old frustrations. We cannot control this journey.

It’s scary. And real. And true for everyone no matter whether you are healthy, sick, or somewhere in-between.

All we can do is choose our reactions. We do the best we can.

True to form, after I wrote this, a migraine found me. I slept more than ten hours last night. I was reminded, strongly reminded, not to underestimate the challenges that of my daily life. My choices matter.

wpid10736-LenkalandRiver3143.jpg

I try to be this pool of calm water. Not getting pulled into the rushing, crashing noise of the rapids.

Hold my own peace.

Which is a worthy goal regardless of personal stories. Carry our sense of calm and stillness.

Wishing us all smooth waters today :)

wpid10732-LenkalandRiver314.jpg

Or at least beautiful noise :)

Behind the Scenes at the River

wpid10707-BehindtheScenesRiver-1.jpg

Monday was a triumph. No one would know. But I haven’t hiked along the river in years. Years.

Today I remember why…

The river is rocks. And trails. That erode into patches of steep, rocky paths.

It’s beautiful. I love the feel of the air, all fresh and scented with wet rock. I love the tangles of trees. And stretches of mossy bark. And the music of water through rapids. The river changes around each bend, the noise a rush then a soothing whirl of constant movement. I love the river.

The river heals.

wpid10709-BehindtheScenesRiver2-1.jpg

And the river hurts.

It was my own fault. I’m in a rough place again. My hips, my legs, even my hands (I used my arms to brace against rocks, and slipped once landing on my right wrist- not bad, but bad enough.) It just felt nice, to be in nature, to see the kids climbing and playing. It felt good to conquer the doubts. It felt really good. See who wins? Me.

Except I’m paying for it now. Two days later.

I just need to go to the easier trails. Find the accessible spots. Stay closer to one spot instead of exploring down the trail. I just need to ….

Accept my limits.

And it’s so frustrating!

Deep breaths. I’ve been going to the gym to build strength for outings just like this one. And I felt ready. But I don’t know. Maybe I’ll never be ready.

I have an especially difficult time when I see how my limitations affect my family and friends. I want my children to experience the river. To go into nature. To find the rough trails and discover the deep forest. I want that.

I can have it. Just not in the way I hoped. We can go. And they can explore while I bring a book :)

It’s all about balance. Pretending that the limits don’t exist won’t help me (obviously). Pushing through doesn’t help with CMT.

The song playing right now for me is Slow and Steady by Of Monsters and Men. Isn’t that appropriate?

I give myself permission to be frustrated. To long for more strength, an easier path.

I also need to let go. I need to let go of the fears that flood me when CMT roars. All of the “what ifs” and “how will I?”

I will find answers when I need answers.

For now, I have today. And I’m going to take it easy (ha) and exercise gradually and wear a brace so this angry-wrist will heal. Yes, CMT is getting more demanding. Yes, it’s scary. Yes, it’s overwhelming.

But guess what? I’m strong. And creative. I can manage this. One day at a time.

wpid10641-LenkalandRiver22014-7.jpgI will have adventures. My family will have wonderful memories. We can all enjoy this journey together. CMT, change, and all :)

*Disclosure- this post contains an affiliate link to iTunes. Thank you for supporting Lenkaland :)

1 2 3 119