Wednesday, May 14, 2014

Having lupus, Part 6: Exhaustion

It's just a constant battle: Me against my body. My passions and my dreams and what I want to do with my life, against what I'm physically able to do.
-Austin Carlile

Note: This was a free-write I did back in the winter, obviously born of frustration. (I hope you laugh at that word later.)  Sometimes the sound of clacking keys is therapeutic, no matter the result.  I thought it would be appropriate for this series of posts to share now these uncensored feelings I had "in the moment."

It is one of those days.  I am exhausted.  I am white-knuckling the day with the goal of remaining upright until it is close to an acceptable bed time.

This makes no sense to me.  I slept a full eight hours last night.  A full eight hours.  Shouldn't my energy level coincide with my sleeping pattern?  I have been tired, exhausted before.  I always thought it was sleep.  I have felt better on four hours than I feel today.

I guess this is lupus?  Whatever it is, it is so frustratingly frustrating.  Yes, that's how frustrating it is.  Except more.  I could come up with much better words than that, but I am exhausted.  And frustratingly frustrating is what I can muster.  Frustrating isn't strong enough and I want to say frustratingly some other word that I just can't pull from my fog-filled brain.  So frustratingly frustrating it is.  If I fight any harder for another word my computer may end up in more than one piece on the other side of the room.  Or house.  Or yard.  It's hard to know for sure.

I feel confined by invisible chains.  I feel compelled to write but I am consumed by a magnetic pull toward a vegetative state.  And fighting it seems futile.

So this is what I can write.  I tried.  All.  Day.  Long.  To string together coherent thoughts on beauty and makeup and DermaBlend Camo Confessions and Dove Real Beauty sketches.  But there was not enough energy when every word was a fight.  To insert links and look up data and embed videos is too much work when balancing my head on top of my shoulders feels like a chore.  With the sun gone down, I must surrender those thoughts to another day.

Nothing to show for this one.

If I am to write today then this is all I can seem to explain.  And even this not very well.

To feel this way for a day is not so bad.  But when this exhaustion stretches out and deepens, when the body is completely drained, it begins to drain the spirit too.  This is where I learn patience.  As I wait for energy to return.  I wait and I wait and that is all I can do.

It has been with me too long this time, exhaustion.  I'm ready for a break.  Can I sit it down for a while, I ask.  What if I agree to come back and pick it up later?  Just a break if full-fledged relief isn't possible.  What good is this anyway?  Really?  Am I not better when I am better?

And still I just wait.

Relief will come.  It always does.  I'm hoping for tomorrow.  And I hope that tomorrow I'm not hoping for the next day.

Note: Infuriating.  That was the word.


This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 7: Saying no

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.