Friday, May 9, 2014

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.