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.

Having lupus, Part 4: A practice of patience

How poor are they who have not patience.  What wound did ever heal but by degrees.
-William Shakespeare


When I was five years old my dad bought me a guitar.  Music is in my genes and I still remember the excitement I felt when he put it in my hands.  I idolized him and this was one more step in my quest to be just like him.  He showed me where to put my fingers.  How to strum.  I tried it, but it didn't sound the same as when he did it.  I couldn't even make it sound like a song.

Less than an hour after I picked up the guitar, I set it back down.  For good.

My mom always said that if I didn't learn something in five minutes I never would.  I didn't have the patience.  It was a trait that followed me into adulthood.

Until the lupus diagnosis.

I couldn't set lupus down like I had the guitar.  I was sick and I stayed sick and I had to learn to deal with it.  Getting frustrated didn't help.  Ignoring symptoms and stopping treatments only made things worse.  I learned the first year the symptoms piled on that I would have to stick with doctors and stick with treatments for weeks and months to see any result at all.  And even the slightest bobble (or no bobble at all) in routine, could send things downward again.

When I got sick, I had no choice but to wait it out.  Before I even knew I had it, lupus was teaching me to wait.

I had to wait just for the diagnosis.  And it still felt like too soon to hear that news.

I had to wait for relief from symptoms.  I was sick for months, and for some of those months I just kept getting sicker.  No explanation, no answers.  I began to wonder if things would ever get any better, if I would ever get any help.  Then I did.  Sweet relief came finally.

But it didn't stay.  And I had to wait again.

I have heard lupus described in different ways, like by spoons.  For me, it feels like falling in a hole.  Some days, I'm on solid ground.  These are the days when I feel great. I feel normal.  I feel like I did pre-lupus.  Some days, the ground might be a little shaky, a little muddy, a little slippery.  I can still function like normal (or pretty close to it), but it takes more effort.  I feel like I have to step lightly, proceed cautiously... lest I fall into the hole.  Because when I get really sick, that's what it feels like.  Like I've fallen in a big, deep pit.

Before I knew the hole was called lupus, before I knew there was nothing I did to get into the hole and nothing I could do to get out of it, I would fight and scratch and try to claw my way back up.  I would wear myself out down in the hole and have nothing to show for it but bloody knuckles and muddy jeans.  And when I finally did get lifted out, I was too tired to even enjoy being back on solid ground.

Now I know when I fall in the lupus pit I just have to wait to be lifted out again.  I know I might as well spend as much time sleeping as I can down in the hole so I'll have plenty of energy on that day when I wake up back on the ground again.

Well, I say that like it's a rule.  Sometimes -- even now -- when I fall in the pit I pretend like I'm not in it at all and just go about living my life like I would on the shaky ground.  (I like to call this digging the hole deeper.  It has much the same results as trying to claw my way out.)

The point is, I realized that as difficult as it is for me to wait, it's the most productive thing I can do down in that pit.  And I hate --H-A-T-E HATE -- being down there, so I'll do anything I can to get out as fast as possible.  Even if it's something as grueling and horrific as waiting.

One side effect of waiting down in the lupus pit is achieving a higher tolerance level for non-lupus waiting.  Once you've waited and waited... AND WAITED... to feel like getting out of bed then waiting for a stop light, or a vacation, or dinner, or an answer (from people or from prayer) doesn't seem nearly as taxing.

I've learned that staying calm and waiting on whatever thing isn't happening as quickly as I would like it to is the best thing for my disease.  I have also discovered something else: It turns out to be the best thing for my life, too.

I look back on all those years that I got worked up over this little thing or that little thing and realize now that it wasn't worth it.  Even when people told me then that it wasn't worth it, I didn't believe them.  I believe them now.

This goes against every natural tendency I possess: To wait, to go with the flow, to remain calm when things aren't working out.  It has taken work to achieve a sense of calm, of peacefulness in the midst of chaos and longing.  And sometimes I still fail.  Sometimes I still fail miserably.

I am ashamed to say that pre-lupus I had resigned myself to impatience.  Patience was a virtue I thought I would never have.  It still isn't at the virtue level.  But I am making progress.

It just took something as stubborn and unrelenting as lupus to finally teach me.  I went toe-to-toe with my illness for months.  It won.  Like, major smackdown, who's-your-daddy, won.

So now I am learning to be more respectful of my new limitations.  And for all the things that it feels like lupus has taken away from me, I am thankful for at least this one thing it has given me.

I hope that one day the lupus goes, but I'll be happy to keep this new-found patience as a souvenir.

---

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 5: More on the pit

Part 6: Exhaustion

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.

Worth the wait

Earlier this year my husband instituted a weekly date night and charged himself with all the planning and coordinating.  Time with my handsome, sweet, funny hubby and no work involved for me?  Yes please!

Don't worry, this isn't a post about that kind of waiting. 

Felt like I needed to say that.  I didn't want you all to get the wrong impression when I lead a waiting post with a story about my husband. 

Anyway...

On our most recent date my husband took me to a local diner.

The place is quaint, antique signs hanging on the wall.  We situated ourselves in a corner booth.  My view was a tree-covered mountain outside the window.  Resting my eyes on a Kentucky mountain fills my soul like good food fills my stomach.  And with my eyes fixed on the scenery, I listened to the sounds behind me. 

The waitress's voice matched the mountain.  I grew up here and Kentucky twang was normal vanilla until I visited and lived other places.  Now it is pure, sweet music to my ears.

She called an elderly gentleman by name, joked about flies at a funeral and confirmed the order she already knew he wanted. 

When she made it over to our table we asked how big the hamburgers were, trying to decide between a single or double patty.

"Well, are ya hungry?"  We laughed.  One patty would be plenty.

I listened as the man visited with a lady seated near him.  They both grew up here.  They talked of their brothers and sisters.  Their parents.  Their spouses, now deceased.  I heard a sweet courting story and fought back tears to hear how it ended. 

Eyes on the mountain, it felt like home and happiness.  This culture, these sounds, these conversations, these views.  This is why I love Kentucky.  This and so much more.

When we made it to the cash register to pay, we were just behind the man we had heard throughout our meal.  He himself was hard of hearing.  With a smile on her face, the waitress repeated his total a few times.  He counted out dollar bills -- with her help -- and came up one short.  He took the money back, pulled out a five and asked her to take three ones from the stack he held in his hand to settle his bill.  She gave him change.

Putting his wallet back in his pocket, he realized he was missing a rubber band, and the young girl -- both waitress and cashier -- came from behind the counter to help him look.  Not for lack of diligence, they didn't find it. 

Only when the man started to walk away did she turn her attention to us, just as friendly. 

I couldn't help but check Mr. Regular's table on the way out. He left her no tip.  I'm sure she knew how it would be but offered him wonderful service the same.

I could tell story after story after story like this one.  And also story after story after story not like this one.

I enjoyed the waiting that night, but haven't always appreciated slow service.  Even when it has been the price for building relationships and honoring others.

I complain a lot about how much longer it takes to do just about anything here. But I've never complained about friendliness or about hospitality.  About neighbors willing to help.  I wait more, but I do it surrounded by people who smile and chat and don't get worked up.  Plans change on a dime if someone is in need -- and that someone can be anyone.

It's a great lesson for me.  I plan and rush and juggle and fight to keep up.  My schedule is my holy grail.  Not honoring it a grave offense. 

And like much of our American culture, I'm getting it wrong.  Progress should never come before people.  Advances and experiences mean nothing without people to share them with, and they definitely aren't worth devaluing others for. 

I have to remind myself that the fast-food workers hear my loud sigh when I wait for my order.  They can see me roll my eyes.  Shouldn't I use that time to engage those around me in meaningful conversation?  Or at the very least not be so passive aggressive?  And is a seamless ordering experience really worth it if I pick my number, swipe my card and get my food without ever even having to make eye contact?  Is that something that would make that equal human feel valued?

I get it. We wouldn't accomplish as much if we didn't pack as much into our day.  Checking e-mail while standing in line is great multi-tasking.  Fast service is a prerequisite for a busy life.  We can't just all hang out all day, every day. 

But I wonder if we've taken "efficiency" too far?  Or if we've inadvertently swapped relationships with amazing, wonderful people for amazing, wonderful products?  Has achieving modern convenience resulted in modern struggle?

How many problems would be solved if every single one of us was valued and embraced and honored with time by the whole community?  To do that would take sacrifice, but wouldn't it be worth it?

Or the real question: Isn't each person worth it?

...because the world of men and money and power hums along quite nicely on the fuel of fear and contempt and frustration and craving and the worship of self.  Our own present culture has harnessed these forces in ways that have yielded extraordinary wealth and comfort and personal freedom.  The freedom to be lords of our own tiny skull-sized kingdoms, alone at the center of all creation.  This kind of freedom has much to recommend it.  But of course there are all different kinds of freedom, and the kind that is most precious you will not hear much talked about in the great outside world of winning and achieving and displaying.  The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able to truly care about other people and to sacrifice for them, over and over, in myriad petty unsexy ways, every day.  That is real freedom.  The alternative is unconsciousness, the default-setting, the "rat race" -- the constant gnawing sense of having had and lost some infinite thing.

-David Foster Wallace, This is Water: 2005 Commencement speech at Kenyon College