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!
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?
Some days I look at myself and it’s like “Why are you behaving like a schoolgirl? Get a grip!” But then I wonder if all this talk of growing up and maturing is just a neat trick designed to make us less afraid of taking on responsibility. I have to admit I kind of like feeling like a schoolgirl every once in awhile, in the same way I’m happy to be carded at the liquor store. On the one hand, I often feel very alienated from my body and all its aches, pains, malfunctions, and failings. But on the other hand, my body *is* me, and I identify with and (generally) take a lot of pride (and even pleasure) in how I appear in the world. When my body ceases to exist, I cease to exist. Damn you, Descartes, and your stupid mind-body split.
I think this simultaneous connection to our bodies and alienation from our bodies makes the mental aspects of chronic illness and chronic pain—brainfog, headaches, sleep disturbance, cognitive problems, etc—the hardest to bear. It’s like everything else is ravaged and all we have left is our minds. Until we don’t anymore. And people who have never been chronically ill or disabled don’t—can’t—understand. I’m not a praying kind of girl, but I do hope that I get to keep my intelligence for a significant while longer. I’m not sure what I would do if I had CNS lupus and could witness myself declining, my mental faculties slipping away. I know that must come eventually, for everyone, but I hope it comes for me in old age, like a slowly emptying hourglass, almost imperceptible.