Sunday, January 6, 2013

CRPS: Feet Update

It's many hours later. I am enjoying the season premier of Downton Abbey and was thrilled to discover that the DVR has also, apparently of its own volition, recorded a good many of the old Upstairs, Downstairs, and I guess these tidbits of confessional viewing habits tell you quite a bit!

Fred cannot abide looking at my hands.

He offers, freely, and with good intentions, to do anything for me -- I've but to ask. I've asked many times for help with my feet, until now the asking has degenerated into jokes (jokes unreceived, unnoticed but jokes, still -- usually something about a "spa").

They need tender, loving care, as the saying goes. Then reality sets in... you cannot touch the buggers without eliciting a scream or a melodramatic moan that attempts octaves. Even if I manage a good measure of pain control, and keep a hold on my emotions, as well, I cannot bring myself to ask for tender, loving care. It requires definition for Fred, detail, a play-by-play description of what and how and, even, why. It bleeds every bit of the tender, loving care from the process before it begins, so it never, ever... begins.

I want human touch, warmth, sweet-smelling waters, I want to see love of my feet shine in his eyes. Lotions of any sort just incite inflammation, burning, swelling, and the reddest red you've never seen. My feet will spend at least 12 hours emanating unbelievable amounts of heat just from the application of a simple cream. You can feel a force field, a threatening volcano, holding your hand a foot away. Do I exaggerate? No. The words get weird, the words get strange, the attempt to make someone understand ruins language, and makes me an object of ridicule. I've learned to shut up, to make my descriptions brief and ordinary. The weirdness of CRPS interests no one, not even the scientific types who ought to be interested in accuracy. I could tell a researcher that my pain level was an 8 or 9 out of 10, which would caused a brief raised eyebrow of disbelief or I could calmly explain:

What's the pain like? Like a thousand tiny paper cuts, never cleansed, reopening with every step. Like scrubbing the kitchen floor and ammonia spills onto an open wound. Like Fourth of July sparklers spitting through my foot and leg. Like a Kansas City hail storm raging through my foot. Like Dante's words in The Inferno when he wrote [my pain is] "….ever burning, but never consumed."
Not my words, obviously, being so circumspect and free of obscenity. It's a description I ran into while grazing around the RSDSA website, choosing to expose my cynical, nasty self to a section called "Stories of Hope." The quote is from one Kathleen Campbell, M. Div, in a fine piece called "Transformation and Hope—The Means to Recovery." It leaped off the page, buried as it was in cool, pastoral prose, and that levelheadedness one assigns to people who counsel others with all expectation of success. I routinely beg CRPSers not to talk about feeling doused with gasoline and set on fire... but not entirely for the reasons you probably assume! Mostly, it's because few of us have had the experience, though we all share dreams of self-immolation, flirting with a notion of martyrdom just to elevate this trashpile of an experience to something with a more ennobling history.

Thích Quảng Đức in the full photo of his self-immolation,
 in protest of South Vietnam's
Roman Catholic government's persecution of Buddhists, during which
he remained perfectly still.
It was a Pulitzer Prize-winning photograph by Malcolm Browne.

Over the ten years I've "had" CRPS, I've managed to hem in and refine my verbal descriptions of CRPS pain, except, as you, Dear Reader. can attest, for the pages of this blog.

"It's Hell," I say.

I don't suppose any of us really share a clear notion of what Hell is like, but I've noticed that following its mention, the eyes slightly lose focus, and there's often a flicker of fear.

And I've yet to be made fun of for saying it.

But I'd rather the medical types listen to the fine details:  though the right leg is more edematous, and the pain deep and throbbing, extending from inside the right prosthetic hip to the tips of the twinkling toes, and is covered with strange outbreaks, sometimes blisters -- it is the left leg and foot that cause me to issue regular invitations to Do-It-Yourself Amputations and Bar-B-Ques.  The left leg's pain is intolerable and usually the instrument of those God-damned spasms.

See?  It's best not to allow even the specialists to query one's pain.  The truth?  It's not that they cannot "handle the truth..." It's just that no one can sit quietly in the company of, in the contemplation of a personal Hell.

Still there?

If you are, don't blush or get over-emotional, but I love you.  (Fat chance that I'll admit it in the morning...)

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