For God’s Sake Don’t Call it a Gift
Sometimes people are offended that I didn’t tell them when I was sickest, that I kept the fatigue and the pain to myself for months and months. I say, “it was a dark time, I didn’t really tell anyone.” This is not exactly true. But it comes close enough, and I still find it hard to explain what it feels like to be inside a body that is closed in by great pain on all sides. Then, as now, the narrative collapses—there is no form, no genre, no model to give hints about what might happen next, and the energy of accepting the pain, trying to soothe it, or worse, resist it, takes all that is left of the self. The disease attacks the cricoarytenoid joint of the larynx and my voice cracks. I am rendered mute from pain. There is no energy, no voice left for storytelling.
In retrospect, whatever kernel of “truth” emerged from the experience sounds hyperbolic: the stuff of melodrama. Freckles upstaged by a whole galaxy of palpable purpura that climbed like angry spiders up my feet and legs. Fingers, toes, wrists, knees—all swollen into unrecognizability. Vials of bright yellow liquid and boxes of syringes. The bargaining and shaky hands of the first few self-injections. Fatigue that hit me like a linebacker and pinned me to the ground. Waking in the middle of the night to the sensation of a knife slicing through my lower abdomen. The daily lattice of hair in the shower drain and the shock of white where my scalp was exposed.
We have stories about cancer, heroic stories of resistance and remission, and sad, or sometimes uplifting, stories about those who do not make it. We do not have stories about those who face great pain with no identifiable foe, pain that will dog them for the rest of their lives, pain that is the result of the body turning against itself, permanently. I will spend whatever years I have left trying to both accept and outrun this pain, with an arsenal of needles and pills as my only weapons. There is no “lesson” here except that life is random and parts of it are miserable. Some people face the misery earlier, and some later. Sometimes the pain comes from within, and sometimes from without. Whatever mindfulness and compassion I have gained are not a result of the pain—they are my last defense against it. Pain is not a teacher, it is a torturer.
"No!"
You might think from the title of this post that I’m channeling my inner toddler. But the truth is that I’m actually quite proud of myself for finally tapping into my ability to say “no.” Three times today I put my foot down and refused to take on unnecessary responsibilities and projects that I had not agreed to.
I’m not really what you would call a “pleaser,” but I do suffer from symptoms of the chronic overachiever. Add to that my fear of being seen as weak or lazy, and you have a terrible recipe for overcommitment. I hate having to say no, even when I feel overwhelmed or don’t really want to take on a task or responsibility, because doing something I dislike seems easier than appearing incapable. (How many times have I burst into tears because I realized I had a flare or an acute illness coming on? Too many times to count. It always feels like I’m letting myself and everyone else down.)
No more. My time and energy are too precious to waste. I have a dissertation to finish and I don’t care how highly regarded I am by my friends and colleagues, but I am not taking on any additional ambivalence-producing* editing, web design, teaching or administrative duties until this damn thing is written.
*But if something comes up that I feel unqualified enthusiasm about, I reserve the right to consider it. 😉
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?
Breaking up with MTX
So, methotrexate and I broke up last week. During the past two-to-three weeks I’ve been having a major flare of skin and joint involvement and my rheumy and I decided we needed a different strategy. Of course, my labs are still somewhat (totally?) incoherent, so the strategy is “dampen the inflammation with low-dose prednisone and NSAIDs and see what develops.” So no more needles (for now), no more weekend-long MTX hangovers, no more collapsing into bed at 7pm, and no more disgusting cherry cough syrup (to fight MTX brain fog). I feel like a human being again. A human being whose feet and hands have returned almost to their normal size. Of course that’s probably just the prednisone talking, but I’m so excited to feel like myself again that I’m willing to take whatever I can get.
I know all about the downsides of long-term use of corticosteroids—osteoporosis, elevated blood sugar and diabetes, glaucoma, etc—so I’m hoping we can find a better [biologic?] solution for my situation. In the meantime, though, I’m beginning to find my way into a quality-of-life balance. Sure, the MTX might be safer in the long run, but what good is it if the side effects are totally disabling and it’s only partially controlling my disease? Is it better to be on MTX and be unable to exercise due to fatigue than to be on prednisone and have the energy for moderate physical activities? Which is better or worse for my heart, my lungs, my brain, my soul?
I’ve always been a planner—I like to joke that I have a back-up plan and a back-up-back-up plan for my Plan B—but sometimes I simply have to ask myself “what do I need to function (and even enjoy myself) right now?” Because right now is the only guarantee. I gave MTX 4 months of my life and I’ll never get them back. It was worth the gamble, since it could have been a miracle drug for me, but it wasn’t. Next!
Resolutions and Irrational Self-expectations
This blog was written as part of the Chronic Babe blog carnival on new years resolutions.
As I think I’ve said before, I’m not really one for new years resolutions. I tend to save my personal resolutions for my birthday, and my professional/academic resolutions for the beginning of the school year. For me, those times feel more natural for goal-setting and making changes. Plus, January and February have always been the most depressing months of the year for me—the holiday decorations are down, it’s dark, cold, and wet, the second semester is dragging along—not exactly the best time to start lecturing myself about all my perceived problems and failings.
About a month ago I read Neil Fiore’s book The Now Habit which is all about breaking the procrastination cycle (ironically—and perhaps unsurprisingly—I was reading a book on procrastination in order to avoid grading papers). Someone had recommended it to me and it seemed like it might have some useful tools for helping get my dissertation written. It’s pop psychology, so don’t expect any elaborate, grand-unified-theory explanations. But I found his observations and solutions for negative self-talk really helpful.
Basically Fiore suggests that instead of approaching the tasks that one dislikes (or that feel challenging and/or threatening) as things that one “should” do— un-enjoyable activities require chiding and self-punishment to complete—one can instead use language like “I will begin X project today [or tomorrow, or on a specific day] and work on it for X amount of time.” By simply resolving to start (or continue) a project, and then following through, one must take responsibility for doing just that. This also helps to overcome the initial inertia that often causes procrastinators to obsess and make themselves miserable over a task or project and then only start it at the very last possible minute (this describes my relationship to grading papers perfectly). Fiore’s argument is that this small change in language (and the behavior it leads to) can release one from a great deal of guilt and misery, freeing up time to do enjoyable things without a black cloud of “shoulds” hanging over one’s head.
What, you might be asking, does this have to do with chronic illness or new years resolutions? I find that I often chide myself for not being more productive on my bad days, making those days even worse. Rather than treating my tired, aching self like a petulant child, I will try to speak to myself more kindly, as I would any ill person I encountered, taking my own pain seriously.
So my only resolution for the new year is to continue finding ways of being kinder to myself, a resolution I originally made when I turned 30. For me, this means learning coping strategies that allow me to enjoy my good days more; treating myself with the same kindness that I treat others, rather than holding myself to an impossible ideal; avoiding toxic and disrespectful people, especially in my personal life; and accepting that some days will be better than others, but having faith that the good days will come, just not always when I expect them. I will determine what I want and need, and try to ignore the disapproving voice that lectures me about what I should or shouldn’t be doing.
Living with chronic illness is no picnic, and I think sometimes the worst thing we can do is think about all the things we’d like to change about ourselves, rather than all the positive qualities we already have. Most of us are incredibly caring and empathetic people, we just sometimes forget to extend that care and acceptance to ourselves. Breathe. Sleep. Love. The rest will work itself out.