Living with CMT, Day 13,903

I hope this plane will find clear skies.  I've been in emotional turbulence.  False expectations, I suppose.  Summer is supposed to be my good season.  My break from the constant pain, fatigue, and general malaise that haunts me.  Not this summer.  Could be the baby.  Almost two years old baby.  And when Anika was this age, I had my big fall-apart. Then again, it could be the medication-adjustments.  Summer is the season for trying new things.  And the fatigue medication works okay, but it spins me out, too.  I didn't take any today and felt a lot better than the past week.  And I dropped the pain-meds thinking I wouldn't need them.  Wrong there.  The arthritis in my feet has four years now of aggravation.  The bones are not happy.  And they let me know big time when I quit medication. So I'm taking a low dose of the pain meds and I quit the fatigue meds.

Not to mention that I am on my feet a lot.  Even in summer.  Chores and projects and keeping up with the toddler.  These are not laid-back summer haze-days.

And again, it could just be me.  :)

Degenerative symptoms galore.  I worry about the mad-tumble of troubles, like when Anika was a toddler.  Back then it was the arthritis diagnosis and the weakness/numbness in my hands.  I worry about what may be next.

Then I breathe.  Worry won't change the path around the corner.  I slow down.  Listen to my girl.  Watch her dance.  Read my boy stories.  And try to stay here now instead of worrying about the future.  We could all worry.

I've also been contending with a new frustration.  Anger.  It could be a side effect of the medications, but I've been bee-spitting mad.  The bees whirl around in me with stirring whirring fury.  Why is everything such a struggle?

I'm not angry at anyone.  Not at God.  Not at myself.  Just a decentralized anger.  Why can't I fix this?  I'm clever and creative.  Why don't I have a solution or two?  Why is waking up in the morning like a zombie climbing from the mud?  Why the 13 thousand days of negotiation and compromise and frustration?

I found articles online that had clinical answers about disability and anger.  Management issues.  A stage in greiving.

And maybe that's part of the degenerative piece, the constant losses.  So the anger resurfaces.  But I feel an intense and unfamiliar resentment this time.  I want to be better.  Not better in my health, necessarily.  But a better mom.  A better writer.  A better teacher.  A better house-cleaner :).  I see where I could go, who I could be, if only I had the energy.

Emotional turbulence.  A tidal wave.  And I'll be fine.  I've been here before and I talk myself into a better place.  I figure out new solutions.  I build.  It's part of the journey.  I just wanted to share the experience from a real perspective, not a clinical perspective.  I've said it before and I'll say it again, the emotions of this journey are universal.  Our challenges may be unique.  And that may intensify our emotions.  But our experience is the human experience.  We can all grow and learn from each other.  Thanks for letting me vent :)

Tomorrow I wake up sunshine :)