The CMT Alphabet: G for Goals

Goals CMT Alphabet

Back in the day (a few years ago), my goals were vague and dreamy. I will feel better. I will be stronger. I will succeed.

Then I realized a few things. First, how can I possibly measure those goals? Second, how can I set myself up for success instead of disappointment?

I have two influencers on my life. Me and CMT. I can make awesome plans. Beautiful ideas. And it will all go down in flames if CMT doesn’t agree with me.

So my goal the past few years has become learning about CMT. And learning about myself with CMT. That can be a huge challenge, especially since my CMT has decided that daily swings are great fun (not). But that goal has helped me be realistic. And advocate for myself with physical therapy and doctors.

My thoughts on goals fly from the wildly beautiful (awareness, cure, fixing me) to incredibly short term. Clean my desk. Return emails. Laugh with my kids.

I have brought my goals to more realistic, smaller plans. I let go of things like “I will finish the river trail” or “I will keep up with my family at the street fair.” Instead, I rework them to “I will enjoy the views at the river. And stop when I need to stop. And remember the walk back to the car. Don’t push too far.” Or “I will ask for breaks and enjoy the day.” My lofty goals can invite frustration.

I had to let go of Quantity (walk this far, lift this much) to Quality (how I feel).

Right now my goals are to stay active. Be strong enough for adventures. Exercise gently. And try, try, try, to listen to little signals of too much. This one is tricky for me because I get into the defiance cycle.

Goals can invite defeat for me. I wake up and make plans. Then I’m tired. So very tired. Going to bed is an admission the CMT won. Whew, that’s a dangerous path. I have become conscious of goals. Holding them gently. Realizing that the biggest goal of all has to be TAKING CARE OF ME. Which sounds so much easier that it is in real life.

CMT demands a lot of attention. A lot of patience. Forgiveness. CMT challenges me mentally, emotionally, physically. And my biggest goal is to recognize the brilliance of this journey. Time is precious. I hope to use my time wisely :)

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The CMT Alphabet is inspired by Donna at Beating Limitations. I am blogging as often as possible to help with CMT Awareness month. CMT is a neuropathy that affects strength, coordination, balance, and more. My posts reflect my journey. Everyone with CMT has different experiences. You can visit the CMTA and the Hereditary Neuropathy Foundation for more information. Thank you!

 

Isla’s First Birthday

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How lucky am I to be a part of this sweet girl’s journey?

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Isla

Isla’s nickname is Rainbow Isla. For good reason.

May you always know the magic and joy and wonder of light :)

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Isla, you sure know how to host a lovely party! :) With a little (a lot!) of help from your wonderful mom and dad of course :). Enjoy being one!

Lenka is a photographer in Northern California that loves sharing stories in photographs. To see more images, or learn about booking her for your child’s celebration, please visit http://lenkaland.smugmug.com. Thank you!

 

CMT Alphabet: F for Fatigue

CMT Alphabet: Fatigue

Fatigue is heavy. Sinking-out-of-the-square heavy. Fatigue isn’t touched by a nap or a great night’s sleep (though they help). Fatigue isn’t tired. Tired is Fatigue’s kid sister. Fatigue is big. Fatigue follows everywhere. It makes small things seem mighty. Like getting dinner prepped. Or going to the park. Or grocery shopping.

When I was first diagnosed with CMT, fatigue wasn’t associated with CMT. Over the years, I see it gradually joining the lists of associated symptoms. And it makes sense. If my muscles are working overtime due to muscle atrophy and flickery nerve signals, of course they get exhausted. If the primary muscle responsible for lifting my foot or opening a jar is compromised (weak) and a secondary muscle that isn’t even supposed to do that job is compensating, of course it tires out.  And if a muscle or joint is injured on top of everything (low level inflammation or arthritis), and trying to heal while I’m trying to overacheive (aka open a jar), of course I’m going to burn out.

Of course.

And yet, yet fatigue is a struggle. For years, my neurologist tried to help me with occasional medication for fatigue and insurance denied us (for years!) since Fatigue is not part of their official CMT Profile. Who decides that anyway?

Fatigue and pain are my biggest challenges with CMT. I can take the weakness. I can take shorter walks. I can ask for help opening jars. But the crushing fatigue? That wears me down.

I wasn’t always controlled by fatigue. I used to keep up with activities just fine. I might enjoy an afternoon lazing about, but who doesn’t? Not until my thirties, when all of my symptoms flared up, did fatigue really start to overwhelm me. Now I didn’t need an afternoon to restore my energy. Now I needed a day. Or two. And I started planning downtime after every trip, every adventure. Because I needed recovery.

And now? Now I actually miss fun during adventures, because I worry how I will feel the next day. I obsess about pacing myself. I got wore down during our family vacation and had a full melt-down because I was trying to keep up (with our mellow pace) with plans for ping pong and swimming. I am constantly, consciously aware of how an activity will affect me for days (and possibly weeks) to come.

It’s exhausting in itself.

And I have a dangerous cycle. I try to avoid it, but it’s so hard!

DefianceCycle

I find a space where I have balance (mostly). I get confident. I stretch my limits. And defiance feels awesome. I can do everything. Just watch and learn :)

And then I wake up heavy. Bones made of stone. Thoughts muffled and ideas dull. But I can push. Whoa, I am good at pushing through that fatigue.

Which is when I get flared up. Aggravated symptoms like numbness and tingling and pain. Grr! And if I keep pushing (which I often do) I fall or bump into something. I’ve gotten crazy-sick with allergies (one attack landed me in ER for seven hours), asthma, and chronic bronchitis. My system tells me to back-up. Slow down.

And that leads to grief. Scary sadness for all that I lose. Ideas, work, adventures. A grieving that returns and returns. For the losses affect me and my family. My friends. My writing. Crafting. Everything.

I work though it. Perhaps with anger. Perhaps with depression. Perhaps with binging on a great television series :). But I weave the lose ends into my life. I find new solutions. New creative pursuits, new work-arounds. I get a parking placard or warm boots or a different car (I had to do that when the clutch was too painful). I adapt and find a new acceptance.

I’m okay.

For a little while.

I try to think of fatigue as a early-warning-sign. I don’t want to mask it, necessarily, because it signals me that my poor muscles and nerves are working overtime. And yet I feel like I can’t quite get ahead of it. It’s always here. Always reminding me. Always placing a heavy paw on my shoulders, pressing truth down until I surrender. It’s heavy.

And it would be nice to get away from it.

Fatigue is a gigantic part of my CMT journey.

I would love love love one day to change F to Freedom. Freedom to be :)

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The CMT Alphabet is inspired by Donna at Beating Limitations. I am blogging as often as possible to help with CMT Awareness month. My posts reflect my journey and everyone with CMT has different experiences. You can visit the CMTA and the Hereditary Neuropathy Foundation for more information. Thank you!

 

 

CMT Alphabet Update

Reality check. I so underestimated this September. Or I suppose I could say that I overestimated September. I have ideas. I have good intentions. And I’m overwhelmed.

I started a new job at school. Teaching art and handwork. It’s a dream-job in many ways. It does need organizing, though, and planning. Lots and lots of prep work with cutting felt and threading needles. My hands are angry with me right now- in revolt and very numb (aka scary). I am trying to rest them.

The school year started and my son has first grade. He is melty in the afternoons (wore out) so he needs extra Mama-time. My girl has her first year of middle school. We are navigating those waters together.

A big part of my journey is forgiveness. Mostly for myself. I get so angry when I can’t follow through on plans and ideas. My limits feel like walls.

I do my best. I need to celebrate success. The alphabet will continue. As will caring for myself and my family. All good :)

Sunshine

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CMT Alphabet: C D E

CreativeCMT2014 DreamCMT2014 EnoughCMT2014Days rush so quickly! This week had Back-to-School for my kids, and my first grader wanted him to walk him into the room and help for awhile every morning. And we celebrated his birthday in class on Friday. I had a paid photography shoot (hurrah!) for a dear friend and lovely baby. All good things. All making the clock tick very quick.

We get three letters in the CMT Alphabet today.

First, creativity.

Chronic challenges require creativity. Want to know five ways to finish a (seemingly) simple task? Such as opening a jar?

First, try the normal way. You might get lucky. Without hurting yourself of course. That twinge could actually be a nerve pinching that will make your fingers go numb for weeks.

Not open yet? Tap the lid on the counter. Gently. Without breaking the jar. Or dropping it because that happens a lot. Dropping things.

Jar still not open? Get a butter knife (sharp knives are dangerous) and tap the lid with that. Try to dent it. Without missing and bashing the counter by accident because that eye-hand-coordination thing can be tricky.

Still not open? Find the jar-opening-tool that adds leverage. As long as you can grip it tight enough and twist without dropping the jar. Curse at the jar a few times because that might do the trick.

Still not open? Find someone else in the family, even your ten-year-old, and ask for help. They can probably manage it on the first step :)

We all have our work-arounds. Our compensation strategies that can make the journey look easy from the outside. We are so creative!

And we’re good dreamers.

Dream of good days. Simple dreams that can feel far away sometimes. Days without pain. Or struggle. Or fatigue (more on that later :)). Days that have family and laughter and success. Dreams of days when CMT (or any chronic challenges) feel small. Personal dreams.

Then the bigger dreams. Understanding. Oh, please understand my story. Dreams of awareness. Especially with doctors. Beyond “I read a page about CMT in my residency,” or, “What is CMT, exactly?” Dreams of acceptance. What a lovely dream.

And the biggest dream of all. Cure. Cure this aching, tired, weakness. Cure the genetic chance of passing these challenges onto our children. Cure the fears of degenerative symptoms. A cure is the greatest, loveliest dream of all. Make CMT history.

Because enough is enough.

The idea of Enough is big for me. As a child with an undiagnosed, invisible illness, I felt that I had to work twice as hard to get half as far. Yet I worked and worked. I wanted to believe. Even while I snuck to the back of the kickball line and hoped that our team got three outs before I had to kick. I wanted to believe that I just needed to ‘keep my eye on the ball’ and ‘try harder.’

I tried harder. Did I ever. And now I struggle with overcompensating. If I’m not pushing to my limits, I must not be trying hard enough. So I walk a razor-edge of overwhelm. I want to prove that CMT won’t hold me back. And I have an age-old motivation of “The better I hide these challenges, the more successfully I am managing them.” I want to achieve everything that feels ‘normal’. Except I’m not ‘normal’.

I need to be enough. Feel enough. Even when I’m broken. Even when I’m damaged. I need to believe that I can be whole and broken all at once. Validate my limits. Honor them. Thrive within the world that I create. And not measure it against outside expectations of Enough.

We all struggle with Enough. Needing to do more. Be more. Have more. Enough never feels like Enough.

So today I am going to take my breath. Let the moment be enough.

Which is a good dream :)

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The CMT Alphabet: B

Brave for CMT 2014

The forest may be shadowed and wild. The path may feel impossible. Or lost. Or both.

The light, the clearing, may feel so far away. But we must be brave. And keep going.

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CMT demands bravery. The quiet bravery. The kind of bravery that happens in the still of night. The kind of bravery that often goes unseen.

It’s the bravery to speak your truth. No matter what people think or say. No matter how often you hear, “Oh, you look fine.”

Bravery to ask for help. Even when you possibly, mostly, probably can lift a box or walk a distance or open a jar.

Bravery to say No. No to events. No to volunteering. No to finishing just this one task. No to others and no to yourself (which can be the hardest thing of all).

And bravery to say Yes. Yes to braces. Physical Therapy. Yes to the parking placard that gets you a little closer.

Bravery to stand up for yourself. To friends and family. Doctors. Oh, people with answers. Bravery to say, “I hear you. And, yet, you need to believe me.”

Authenticity is brave. Many times it will feel easier to ‘suck it up’ and meet expectations. The possibility of disappointment takes bravery.

Bravery to educate. To talk about CMT (or any chronic challenge) with honesty. Sharing challenges feels scary. And weak. And flawed.

And yet so necessary.

To raise awareness is brave. Telling the world that this journey, while it has laughter and joy and wonder, is also freaky-hard… That takes bravery. And yet those stories help secure funding and research. Towards a cure.

Bravery to forge your own path. Because each path with CMT is unique. And there is no treatment. No cure.

Every single person with CMT is brave. Because I see such humor, hope, and grace in the CMT community. We are braver together.

And the more that we can be champions today, the better the world will be tomorrow. Future generations with thank us. For being brave.

The CMT Alphabet Challenge: A

Welcome to CMT Awareness Month! What is CMT? A degenerative nerve disorder that does not have a treatment or cure. Every year, I share stories about my experiences with CMT to help raise awareness. CMT is one of the largest diseases that most people have never heard exists. It affects approximately 1 in 2,500 people. CMT causes nerves to lose their conductivity, leading to muscle weakness, joint instability, and about a hundred other challenges.

I love that CMT is getting more attention over the years. The Charcot-Marie-Tooth Association and Hereditary Neuropathy Foundation have much more comprehensive descriptions than I can share on a school-night before the first day of school!

This year, Donna on Beating Limitations shared an idea with me on Twitter. She is writing her way through the alphabet this month. What a fun/overwhelming concept! The CMT Alphabet :)

And of course, once I wondered if I could do it, I had to try. And drafting different ideas for different letters is inspiring me :)

We begin at the beginning.

Accept CMT

A is for Accept.

Accepting means kindness. It does not mean “giving up”. It means understanding that CMT is a mistake in genetic coding. CMT is not caused by wearing “cheap shoes as a child” (as I was once asked).

CMT is a lifelong journey that is different for everyone. Some people manage their symptoms with relatively few adaptations (another A word!) while others need a lot of intervention in the way of surgery and bracing.

Accepting means learning about CMT challenges. So I can treat them with wise and thoughtful decisions.

Honestly, I have not been Accepting these days. I have been in wild defiance. Roaring into the wind.

Which asks for trouble. Accepting knows that Defiance can only last for so long before I get injured. Or find new trouble. Or illness.

Accepting is necessary.

Because everything can fall into place if I accept the path that CMT creates. I can get appropriate help. I can educate myself (and others). I can be authentic and healthy and strong.

I also need to accept that I’m a mom and teacher with a big day tomorrow. I cannot write an essay even though I love writing. Accepting is hard :)

My second challenge is to share a photo-a-day. Because life is an adventure :)

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Accept. Adapt. Adventure.

Sounds awesome :)

B is for Brave

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