Friday, March 23, 2012

spoons + willpower = ?

I mentioned a few months ago about how I was procrastinating by reading a book about procrastination. In a similar realm of the ironic, I've been avoiding some of my own academic research by reading a book on... wait for it... academic research on willpower.  Despite this so-called procrastination, I am coming to the conclusion that I have a great deal of willpower, and that my problem is not so much the will to begin (or complete) tasks, but rather the basic reserves of energy necessary to power that "will" into action. Will requires spoons. Which tells me that I need to work on being more realistic about how much I can actually accomplish in a given day or week or month, since the spoons come and go. That and I need to continue to hone my prioritizing skills. None of this sounds particularly thrilling, but I have to admit I feel a small sense of accomplishment at how smoothly my little world manages to run, despite my sense that life keeps throwing obstacles in my way. (I sometimes imagine an autoimmune troll gleefully throwing nails onto the road in front of my car.)

The book I've been reading is Willpower: Rediscovering the Greatest Human Strength. My interest was originally piqued when I read this interview between The Happiness Project's Gretchen Rubin and Willpower co-author John Tierney. I'm only about halfway through the book, but I'm fascinated by the contemporary anecdotes, historical figures, and psychological research that fill the chapters. One of the phenomena that Tierney and his co-author Roy F. Baumeister (a leading researcher on self-control) focus on in the early chapters is the concept that willpower is a finite resource that becomes depleted as we use it. Though they divide willpower into four broad categories (control of thoughts, control of emotions, impulse control, and performance control), they note that we "use the same stock of willpower for all manner of tasks." For people with chronic pain, research suggests that our stock of willpower is consistently depleted by all the energy we expend trying to ignore our pain. No wonder we're consistently short on both energy and "will."

My pain levels have increased again in the past week and I'm not sure why. Likely it's a combination of med changes, the weather, the absurdly high pollen count, and some added work and school stress. As my pain goes up, my productivity (and mental sharpness) goes way down. I've had a few insights about willpower and chronic illness while reading Baumeister and Tierney's book, but I think I'll hold off on talking about them until I finish it. In the meantime, let's hope I can get a handle on this latest round of pain.

I hope everyone else is having a good week, despite this unseasonably warm weather all over the US. For my readers from elsewhere (Australia, NZ, England, Europe...): has your weather been strange? Or are we just in the midst of a North American heat wave?

Tuesday, March 13, 2012

Pred vs. Daylight Savings Time; or: Where the heck did all my energy go?

"The wolf, I'm afraid, is inside tearing up the place." —Flannery O'Connor (from a 1964 letter)

So after about five magical weeks of feeling like my functional pre-MTX (but not necessarily pre-lupus) self, the fatigue has descended again. I'm sure the time change is part of it, but I could feel the creep of the fatigue all last week. I wrote it off as lack of sleep and excitement/stress from starting my new job, but now the gnawing has started up in my wrists, and I know it's the inflammation stirring again. (Wren calls the pain of RA her "rheuma-dragon," but I think of my joint pain as the arthritis wolf. I'm sure that's partly the power of suggestion—"lupus" = "wolf"— but it's just such a gnawing pain that I can't imagine it being anything else. And we still don't know for sure whether it's lupus, RA, or both.)

It's hard to give myself permission to be tired, to say to myself: "Rest! Your body is telling you that you need to take care of yourself!" rather than to chide myself for being lazy. Because it's always possible to push a little further, force myself to go a little bit longer, forego more sleep than is comfortable (carry one more load of laundry or recycling up and down the stairs...). But eventually I crash, and then what do I have? Well, I morph from chronically ill to acutely and chronically ill. And that helps no one.

At my last appointment with my rheumy she asked me to try to wean myself off my ibuprofen habit, and we also increased my Plaquenil dose to 600mg (visual field test here I come). I tried—and succeeded!—to reduce the ibuprofen, but in the past couple of days I've been in the kind of pain that just laughs in the face of Tylenol and Tramadol, so I've had to undo all the careful calibrations I made last week. Back on the NSAID train. One step forward, two steps back.

Now where have I put all my spoons? I need one for my writing, one for my Wednesday swim, one for each day in the office, and about fifteen for the friends who are coming to stay with me this weekend...

I'm not lazy, I'm sick. And I'm doing the very best that I can. It feels pretty heroic from my vantage point.

Thursday, March 1, 2012

Dreaming of Dead Doctors and Listening to My "Gut"

A few weeks ago I dreamed that I saw my former rheumatologist, the one who passed away suddenly during the fall. In my dream, he told me to take a vitamin E supplement. I woke up surprised by the clarity of the dream, as well as the normalcy of our interaction. It was as though I had simply returned for a follow-up appointment. I immediately googled "vitamin e lupus" and discovered this study from 2007, which suggests that vitamin E supplementation helps to suppress autoantibody production in lupus patients. (And animal models suggest that vitamin E reduces joint destruction in RA-like diseases.) To say I was surprised by both the dream and the research it inspired is an extraordinary understatement. The whole thing still takes my breath away. Needless to say, I've added vitamin E to my daily regimen!

In my waking life, I have been haunted by the parting exchange between my doctor and me during my last appointment. As I was checking out at the front desk and preparing the leave the office, he called out my name and when I turned around, he was studying me with a look of both sadness and compassion. He said "We'll figure this out." I must have replied with something in the affirmative and continued toward the door. I turned back one more time as I walked through the door to the waiting area, and he was still watching me, the same look on his face. I remember feeling simultaneously troubled and reassured at the time—like he knew something and wasn't telling me, but that he truly cared about me. The fact that it was the last time I saw him only adds to the mystery of the exchange. I requested a copy of my notes from his office, to give to my new rheumy, but apart from the blood order and diagnosis codes, there are no notes from my final visit with him.

In the last few weeks, I have been in the process of interviewing for a temporary administrative position at my university— one with more flexibility and more benefits, but also more hours than my current position. On the one hand, it would be an excellent move, career-wise, and it would also be an improved work environment. One the other hand, while I was excited about the position, I was also concerned about my ability to work a full 40 hour week, even if some of that time was spent working from home.

Well, it seems that the universe was keyed into my ambivalence, because I found out on Tuesday that the position won't be full time after all, and that the length of the commitment would be significantly shorter than expected, at least for now. Though this is disappointing for financial reasons, it has allayed my fears about potentially over-extending myself. I will also have time to work with gifted kids again this summer, teaching creative writing, which I realized in retrospect I had been sad about giving up. So all is right with the world again. Now let's hope I can keep my disease activity stable enough to enjoy it!