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.