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.
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!
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.
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 :)
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!