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.
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?
So after grappling with my injection-related anxiety for 4 days, the MTX injection was a total non-event.
First, I found this handout from the Canadian Rheumatological Association, which demystified several aspects of the process (how far should the needle go in? what happens if there’s air in the syringe? do I need a “real” sharps container? etc): Learning to Self Inject Methotrexate at Home (link to PDF download).
Then, on Friday evening I was talking with a friend and joked that despite 10+ hours of tattoos and several visits to an accupuncturist, I was still afraid of self-injection. He reminded me that his ex-wife was diabetic and shared his secret for pain-free injections. Which I will share here, in the hope that I can relieve a few other people’s injection worries: rather than puncturing the skin forcibly, like the syringe is a dart, “pinch an inch” of skin in such a way that when you release the skin it falls toward the needle. The needle will slide in almost painlessly and then you just push the plunger and you’re done.
Granted, I’m using very small insulin needles to do my injections, so your mileage may vary with larger needles. But it was swift, easy, and less painful that plenty of the accupuncture I’ve had, and WAY less painful than the Imitrex pens I’ve been administered for migraines (always by nurses– never had to do one myself).
Now on to learning to pace myself when it comes to holiday events…
I like my new rheumatologist. So far she seems insightful, focused, and kind. She wants me to give the MTX another month at a higher dose, but she’s going to have me switch to the injectable form. They’ll do the first injection in the office this Friday afternoon, but from there I’m on my own. Gulp. Time to ask my Type 1 diabetic friends for pointers. In the meantime, I discovered that my ANA appears in the speckled and nucleolar staining patterns. I find the details and vocabulary of the immune system really fascinating.
I ended up spending my whole day at the hospital— between the doctor visit, labs, and xrays—with no lunch. I had to cancel a couple of meetings with my students in the late afternoon which made me really frustrated with myself. I realize of course that I couldn’t know that it would take that long, but by the time I was done (hungry, sore, exhausted, freaked out about self-injection) I just burst into tears in my car. Once that little pity party was over, I drove home and took a nap, which I suppose was the upside to having my schedule totally turned inside out. Instead of feeling pressured to go to campus and cram a bunch of meetings in, I just cancelled everything and went to bed for a few hours. I woke up feeling significantly better than I have in a long time, syringes and wine-free holidays be damned.
In a shining example of why it’s so nice to have a network of fellow spoonie bloggers and twitter denziens, Leslie at Getting Closer to Myself just posted on Sunday about MTX and “The Art of Self-Injection” and talked about a tool that helps the needle-averse do injections. I think I need one. When I went to the pharmacy to fill the prescription, the pharmacist asked: “Do you have enough syringes at home?” Umm… no? My injecting experience pretty much stops at basting turkeys and irrigating my gums.
This post was written for the current PFAM blog carnival, hosted this round by Sharon at Bed, Body, and Beyond.
I have been avoiding writing this post. No, scratch that, I have been avoiding writing. Period. I could say this is because it’s the end of the semester, that I’m busy with teaching and editing and advising. I could say that I’ve been busy preparing for the holidays, that I haven’t been home much. But none of that would be entirely true.
I have a Flannery O’Connor quote in my profile that reads “I write to discover what I know.” And right now? I’m avoiding writing because I’m afraid to face what I already know. I never wanted this blog to be only a place for me to whine and complain, and I feel like lately that’s all I’ve been thinking about. I’ve been moping about all the things that illness has taken from me. Because the truth is that despite a few good days, the past month has been immeasurably difficult. And part of the difficulty comes from the fact that I persist in the charade that I am still as able-bodied as I ever was. When I’m not.
As the holidays approach, I can’t help but think about all the things I used to do that I can’t do right now: crochet and knit, hand-make holiday cards, roll out cookies and pie crusts, stand in the kitchen cooking and baking all day, making preserves and candy and sauces to give to friends and family as gifts. I have always shown my love with the work of my hands. I hope that there will be a day in the future when I can do all these things again. But I don’t know that. Because my desire to do those things can only take me as far as my body’s new limitations. And to be truthful I feel physically worse right now than I have in a long time. I’m frustrated, I’m sad, and I’m struggling to be hopeful. I knew all that already, but it still stings when I type it out in the little Blogger “new post” window.
I’m not very good at asking for emotional support when I need it. I don’t like to be seen as needy, or melodramatic, or weak, and so it’s hard for me to reach out. I suppose this blog is my tiny way of reaching out. Extending my life and my empathy in the hope of multiplying the amount of care I am capable of both receiving and giving.
Tomorrow I see a new rheumatologist and continue this convoluted journey of diagnosis and treatment. And I will continue to write about it. Even if my insights about myself and my life sometimes sting. Because ultimately I write for you: young, old, newly diagnosed, undiagnosed, long-diagnosed, wise, innocent, happy, sad, hopeful, disabled, able-bodied, brilliant, contemplative, compassionate you. Thank you for being my reader. You help me to know my self and the world.
No matter what these illnesses take from me, they will not take my ability to think and create in some form. No matter how fast—or slow—I type, it’s still always one letter at a time.