Sunday, May 18, 2014

Having lupus, Part 7: Saying no

Haha.  No.
-lupus

All of my life I have had trouble saying no.  Partly because I really enjoy trying new things and can find a crazy adventure in almost anything.  Partly because I don't want to miss one thing.  Partly because I hate hearing no.  And partly because I express love and feel loved by spending time with people. 

Our friends in Kansas called Johnie and me the "yes couple."  (Which I take credit for.  I get the feeling he didn't get out much pre-marriage.)  Watching a movie, hanging out, eating out, camping, boating, community projects... If you asked, we'd be there if we could.

And that's how I've lived my life.  I said "yes" to everyone and everything I could.  It's how I worked full-time and went to school full-time and dated and still hung out with my friends.  Every few months (and almost every spring break, unfortunately), I would crash.  I would go to the doctor and be diagnosed with three or four things, and get shots and pills and have to stay in bed for a week. 

When the antibiotics were finished, I'd hit life full-speed again. 

There were times of transition -- like when I got married and when we moved back to Kentucky -- that I tried to live a more balanced life.  But always, inevitably, I'd keep saying yes and my plate would fill up and spill over.  Pushing myself to (past) the limit and then spending time on the couch recuperating was the rhythm I was used to.

When I started getting sick in 2012, I thought it was part of this cycle.  Except for I didn't really recover.  I just kept getting sicker.  And more frustrated.  I didn't bounce back after a week on the couch, and I wasn't willing to spend longer than that letting life pass me by.  Symptoms kept piling on until the spring of 2013 when I reached a new level of low.

I felt emptier than I have ever felt in my life.  Saying completely spent doesn't seem to convey just how completely spent I felt.  I felt broken, maybe even shattered, and wasn't sure if I'd ever feel unbroken again. 

I had to start saying no on a regular basis during those months because I just couldn't say yes. 

It was several more frustrating months until I received the lupus diagnosis (that I still have trouble accepting).  And while I wasn't ready to receive the lupus label, there was one thing I realized very clearly: Whether we called it lupus or an auto-immune issue, whether it would never get better or go away some day, it was obvious that my body was attacking itself.  And it was obvious that the harder I tried to push my body past its limitations, the more it fought back.

My 81-year-old grandfather had just started kidney dialysis treatments at that time.  They were painful for him, and I witnessed firsthand how artificial kidneys can change a person's life and schedule.  One of the most dangerous forms of lupus attacks the kidneys.  It can damage them irreparably.  It can shut them down.  It can require kidney dialysis or transplant.

It was the thing my rheumatologist -- and shortly thereafter, I, too -- was most concerned about. 

Receiving perfectly in-range kidney function test results was such a relief to me.  But, I reasoned, if I didn't make some changes in my lifestyle, the lupus that kept attacking system after system when I didn't slow down would eventually turn on my kidneys.

Maybe I overreacted or was being too dramatic, but that realization was sobering.  On those days when I was tired, or exhausted, or sick but I still wanted to do this or that thing, I asked myself: Is this worth the risk of kidney failure?  I know that pushing myself for a day or for a week won't cause my kidneys to shut down, but I also think there was a good chance that if I didn't slow down my life in general, I could very well be facing very serious health issues in the years ahead.

Turns out I didn't realize how much I loved my kidneys.  I'd rather spend more years with them than a lot of the things I used to spend my time with.  If I'm just not feeling well, then I (usually) stay home.  This one is hard for me.  Turning down movies, dinners out and event tickets goes against all my natural tendencies.  I usually cry when I'm staying home because I'm sick and missing out on something I really want to do.

I walked away from a job I loved because I didn't feel like I could manage my health and my relationships and still do well at work. 

But, on the positive side, having to say no so often when I'm sick makes it easier to say no when I'm not sick.  And, I'm learning, prioritizing things to say yes to even when I'm healthy helps me stay healthier longer. 

Pre-lupus any movie you asked me to see with you, I'd say yes.  Didn't matter if I knew I'd hate it.  You would like it and you wanted me with you, so I'd go.  Any store, any restaurant you asked me to go to, I'd say yes.  Didn't matter how I felt about them.  Now, if the movie doesn't look interesting, or the store isn't appealing, or the restaurant isn't what I'm craving, I'll just say no.  Especially if I finally got the house clean, still feel good, and am just getting ready to curl up with a book.  It's just not worth wasting my (now precious) energy on something I don't really want to do. 

My friends have been so sweet and supportive through this rough and crazy last year.  I had a friend call a few months ago and ask me to go out.  I was in my pajamas and dinner was already made.  Pre-lupus I would have thrown on jeans and put the food in the fridge.  I actually felt good and wanted to see this friend.  But I was craving what I had cooked, not what she was suggesting.  And I was looking forward to a quiet evening at home.  And I already had a busy day planned the next day.  So I said no.

I've said no to her before, and she knows a little pushing is all it takes for me to cave.  This time, I still said no.  And expected her to push a little more.  "Are you not feeling well?  Is it the lupus?" she asked.

I guess I could have said yes.  I almost did.  Technically, it was the lupus.  "No," I said.  "I actually feel really good today.  I just don't want to get out and I'm hoping if I don't push it tonight I'll still feel good tomorrow."

With that piece of information, she continued to push guilt-free, and I continued to say no.  I didn't go out that night, and I haven't done a lot of things I otherwise would have.  And while I hate having to say no as much as I do, I love the freedom I've found to say no to good things so I can say yes to even better things.

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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 6: Exhaustion

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.