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?
“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.
Physical pain does not simply resist language, but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.
—Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (4).
In many ways I’ve had a good week—I received great feedback on my research and teaching, spent quality time with friends, prepared for the holidays, reconnected with loved ones who live far away, attended an engagement party for a dear friend, and welcomed a new baby into my extended family. But I’ve also had one of the most painful weeks on record since last May (= the vasculitis debacle). And everything fades into a sort of dull background when my mind and body are so exhausted by managing the pain.
It’s been a week now since I took my first dose of injectable MTX (I took my second dose last night) and unfortunately, for the past week I’ve had an intense flare of joint pain, swelling, and general exhaustion (and possibly kidney involvement? 5+ lbs of water weight gain suggests “yes,” but it’s hard to tell). I don’t know if there’s a causal relationship between the MTX and the flare. I would like there to be, but I doubt it. Likely the flare is the result of the stress of the end of the semester and the beginning of the holidays combined with massive weather fluctuations and the generally unpredictable nature of flares.
I wish I had some easily controllable catalyst I could pin the cause of my flares to—sugar, caffeine, alcohol, lack of leafy greens, too much meat, nightshade vegetables, too little sleep, etc—but sadly, that doesn’t seem to be the way my illness works. (Plus, I’ve cut or severely limited most of the items on the preceding list anyway. I’m the healthiest sick persion I know. The baking I tried to do last week seems a much more plausible cause.) But I’m not feeling particularly hopeful that the injectable MTX is going to be any more helpful than the oral. On the other hand, being on the MTX this fall has made my seasonal allergies almost invisible, so at least it’s having something of an impact on my overvigilant immune system. But I’m so tired of waiting for something to control my arthritis!
I’ve had a lot of friends ask how I’m doing in the past few days, and it’s hard to know what to say. I usually go for my default response when someone is genuinely concerned (and not just offering a polite, social-lubricant “How have you been?”): “It’s been a rough week.” Often, they assume I’m talking about work, not about my health, and I usually let them persist in that assumption. Because once we get past those opening lines, I’m never sure where to go next. I know that we all struggle to describe the pain we experience—I see it come up over and over again on the blogs I read and with my friends and acquaintances on Twitter. We tell people we’re in pain, but they just don’t get it.
I even struggle to explain to my doctors the kind of pain I’m experiencing. I realize, in hindsight, that my explanation of “everything hurts,” while literally true, did nothing to assist in the diagnosis of a connective tissue disease. Doctors hear “everything hurts” and they think fibromyalgia (or CFIDS/ME, and/or depression). And while many of us have coincident fibro to go with our other rheumatic diagnoses, it’s my experience that a primary fibro diagnosis will prevent other doctors, even rheumatologists, from looking for additional causes for joint pain and fatigue. (Not that I’m bitter that it took anyone years to test my ANA and CRP. Nooo, not me.) So I’ve become very conscious of differentiating between “all over” diffuse pain and the distinct, precise pain of specific joint inflammation, even if those joints are seemingly “all over.” (Which they were this week. Even my jaw, which was a new one for me and oh my f—king goodness did it hurt.)
But what, exactly, does the joint pain feel like? When I try to describe it, I lapse into bad analogies and similes, the kind or purple prose I ask my students not to use in their essays:
I wish I could say that these are simply the creative inventions of a poet, which I suppose they are, since I am a writer of poetry, but they are also the closest I can come in language to describe the pain I experience on a regular basis.
And when the pain becomes more than I can bear, it’s like my brain places a sheer curtain or a piece of frosted glass between me and my body— really between me and all my perceptions of the world. The pain becomes more diffuse and manageable, but all sensation and thought becomes cloudy, dampened, and difficult to sustain. Periodically the specific pain of individual joints breaks through, and I become both distracted and distraught. After several days (or weeks) of this, I’m an emotional wreck. So much of my energy is expended trying to manage and ignore the pain that I cannot focus on anything else, and little annoyances become insurmountable obstacles. Painkillers dull but do not silence the pain and bring their own set of annoyances and side effects.
How do you describe the pain of your arthritis or chronic illness? Do you even try?
I’ve been thinking a lot lately about anonymity and privacy on the web, and I have to admit I’m feeling mighty ambivalent. Which is not to say indifferent; I mean ambivalent in the “moving back-and-forth between two poles” sense. I have strong feelings about both positions.
When I started this blog, it was in the months prior to my initial diagnosis, when I was sick and undiagnosed, stressed out by my PhD exams, and grappling with the emotional fallout of a breakup. I was just looking for a place to vent a little, and to write things down so that I might get some sort of pleasure or closure by ordering and narrating the events of my own life.
But then I got diagnosed with lupus, and I realized I couldn’t talk to very many people in my everyday life about what was going on. So I joined several forums, I created a Twitter account, and I started collecting (and connecting) to other blogs about lupus, arthritis, and autoimmune disease. Somewhere in the middle of all of this, I applied—and was accepted— to be an ACR Advocate for Arthritis. Suddenly I had gone from Megan: Autoimmune Girl Blogger to Megan: Autoimmune Arthritis Patient Advocate.
And here is where the great ambivalence set in. I know that I could be a more powerful force as a patient advocate if I revealed my full identity, but I also know there are consequences to the choice to “come out” and tell my story publicly.
I say a lot of revealing things in my guise as “mirroredlens.” I talk about my diagnoses, my meds, my pain, and my interactions with medical practitioners. I write about my experience of being visibly and invisibly ill and disabled, and how this affects my self-identity, my being-in-the-world, and my goals and fears for the future. I do this because it helps me make sense of my life. But I also do it because I’ve relied on the same kind of first-person narrative from other bloggers and writers to guide me and comfort me, and I want to be able to offer the same kind of guidance and empathy in return.
Despite all of my “virtual” honesty, the group of people I interact with face-to-face who know the details of my illness is relatively small. Partly this is because my diagnosis has been provisional for so long and I prefer to do as little explaining as possible. (“Huh? Wait, I thought you had lupus. Now you have RA too?”) But also because a) I am allergic to pity; and b) I am all-too-aware of the implicit and explicit discrimination toward people with disabilities. And it’s that second part that keeps me from removing my not-particularly-opaque veil of anonymity.
Now clearly I haven’t done a whole lot to obscure my identity on here– I have a photo (yes, that’s really me) and I use my first name. But I haven’t made any explicit links to other parts of my life, online or otherwise. Why? Because I am still (meds and disease activity willing) committed to pursuing a career once I finish grad school, and I am concerned that by disclosing my status too publicly I will jeopardize my chances at an academic job. (Google has a very long memory and the academic job market is ridiculously competitive. The reach of the ADA only goes so far.) It shouldn’t be that way, but it is.
So for now, my identity as a blogger remains separate from my identity as an academic, and my advocacy work falls somewhere in the middle, tenuously connecting the two. I know that I could be a stronger advocate by making those links legible, and I would likely also strengthen my academic work on disability theory by disclosing my status as a person with a chronic illness. But I also know that there are long-term consequences to that kind of candor, consequences that I’m not yet ready to negotiate.
“I can with one eye squinted take it all as a blessing.” –Flannery O’Connor
After I posted the photo of Flannery O’Connor yesterday, I went back and read more of her letters and thought about what it must have been like to live through Georgia summers, with lupus, in the 1950s and 60s. More than that, though, I thought about what it must have meant to be diagnosed with systemic lupus erythematosus back then—back when your only options for treatment were corticosteroids and aspirin, back when it took so long to get a diagnosis and the treatments were so limited that it was basically a death sentence.
In the 1960s, scientists discovered that the anti-malarial drug Plaquenil was effective in both rheumatoid arthritis and SLE. It has been one of the only drugs approved for the treatment of lupus. Those of you playing along at home may be laughing, sardonically, since the treatment protocol for lupus has changed little since the ’60s, just swap out the aspirin for ibuprofen or naproxen and add a dash of low-dose antidepressants for the co-incident fibromyalgia.
Given this history, then, it’s no surprise that most of us were thrilled to hear that Benlysta, heralded as the “first new lupus drug in 56 years!” was approved by the FDA this past March. Benlysta (belimumab) is a medication delivered by IV that targets B-cells, a part of the immune response that seems to be out of whack in lupus patients. (The science is significantly more complex than that, involving an intricate dance of activators, antigens, modulators and interactors. If you like that sort of thing, look here for a PubMed citation.)
But the emergence of Benlysta on the scene isn’t exactly a magic cure-all. In fact, the FDA vote was extremely close because of concerns that the drug was only marginally effective. This short piece from the Associated Press somehow manages to capture the breathless excitement and serious concerns about the drug all at once, both of which also come through in a slight muted form in the FDA press release. Among the serious concerns: the drug appears to be ineffective in many patients of African descent (who, by the way, tend to be diagnosed with lupus in much higher numbers along with other non-white populations). What the press release and other news coverage also frequently fail to mention is the exorbitant price tag for Benlysta and similar biologic drugs used for rheumatoid arthritis and other conditions. Like thousands-of-dollars-every-month expensive. Like don’t-expect-your-lousy-hmo-insurance-or-medicaid-to-cover-it expensive.
Luckily, scientists are still hard at work to map the far corners of our immune systems, dysfunctional or not. The most recent issue of The Rheumatologist includes an update on research into the role of T-cells in lupus that could lead to more effective treatments for more people. And I’m excited about that. What I’m also excited about is my chance to participate in the American College of Rheumatology’s “Advocates for Arthritis” Program. When I go to Washington this fall to meet with members of Congress about the pressing need for research funding for arthritis, I will cite these studies, and the studies that led to the development of Benlysta, and their importance in improving the everyday lives as well as the long-term prognosis for people with lupus. Fifty-six years is not ok, people!
O’Connor, diagnosed at age 25 in 1951, outlived the five years that her doctors gave her with an additional nine, making it almost to her 40th birthday. I can only imagine the pain and fatigue that she worked through during those years while she managed to complete two novels and several collections of short stories, even as her body began to fail. Most of us now, diagnosed with Lupus in our 20s and 30s, have a much better chance of having a “normal” lifespan, simply because there are more ways to treat the complications from lupus. We’ve gotten better at catching kidney, lung, and heart involvement earlier and addressing these issues and slowing their progression before they become life threatening. We know about the Faustian bargain of long term use of prednisone and other corticosteroids. And I hope—with active and public communities on Facebook, Twitter, and other social networking sites (hi, chronic babe! hi, but you don’t look sick!)— we are getting better at shedding the stigma of having a chronic illness and speaking out about what we need. The magic of the internet lets us all be activists, even in our pajamas. And that is really something to be excited about.
Edited to add: This entry was featured on chronicbabe.com in Blog Carnival #34: What’s HOT?