Living with CMT, Day 13,888

Today was not a good day.  No, that's not true.  Today was a great day.  Ian was at his baby-party (daycare) and I took Anika to Despicable Me.  We laughed and laughed.  A fun movie.  The weather was calm sunshine.  Chores crowded me, of course.  But really, nothing bad happened today.  Except in my head. Tired.  Vacation is grand fun, but not much room for downtime.  And I don't want to say No to an adventure, so I do too much.  And it's worth it.  But I've got a big debt now.

And since I'm away from school, I'm trying a new medication that my neurologist recommended last December.  His idea was if we could manage the fatigue better, the chronic pain would subside, too.  The exhaustion aggravates the pain.  I have a long story with the fatigue medicines which boils down to: there is a great medication that insurance will not approve.  So this new medication, Nuvigil, is like the other one that works, but we have a better chance of getting it approved.  Last summer when I tried it, I got nauseous.  So this time I'm splitting the pill in half.

Medication is a tricky topic when it comes to chronic illness.  To me, medication feels like a loss.  Using it feels like an admission that I cannot tough it out on my own.  My family values the healing power of our own immune systems, so resorting to medicine is a big deal.  And medication is a big deal.  I'm young.  I don't want a thirty year history of medication.  At the same time, brain chemistry is affected by chronic pain, relationships are strained.  I cannot be myself when I'm struggling to get through the day.

Balance.  And eating well.  And alternative methods of pain management and relaxation and non-chemical relief.  I'm a huge believer in all of it.

At the same time, I do not want to be a warrior every day.  I want freedom.  Not every day.  But some days.

So summer is the time to test these waters.  And maybe it's the meds that spun me out.  Or the exhaustion.  Or Anika saying, Mom, you say we're going to do things, but we don't do them.  You said we would blow up the pool toys and go in the pool.

I explained about emptying dishwashers and folding laundry and cranky toddlers who needed a bath.  That didn't erase her list of many un-done ideas.

And it was a trigger.  I said Yesterday, I said maybe.  We didn't plan on the movie. Would you trade the movie?

No.

Well, then.

And every parent goes through the guilt of changing plans, of lost moments, of feeling like the day is too short and childhood too fast . . .

But my mood sank all the same.  And I was tired of struggling, of keeping up with everyday life.  Tired of chores and the world. Tired of being tired.

An evening crash.  Meds wearing off.  I don't know.  But it felt awful.  Felt deep-dark-cave awful, like I could never crawl out.

And then I realized that I hadn't been to our community in awhile.  I'd been writing the happy story, the easy story where a few quick accommodations make me fine.  And that is the story at times.  Not all of the time.  And I need this space.  For the real stuff, the tough stuff.  Today the CMT was the wolf.  So when Anika and I talked about tomorrow, I said let's play video games.

And the laundry is still piled on the couch.  :)