makeitstop, a poem

click to enlarge

makeitstopmakeitstopmakeitstopmakeitstopmakeitstop
"On the outside, I'm very, very calm... But on the INSIDE..."
*punches God in the face until knuckles bleed*
"But you should see the other guy!"
The pain wipes your mind
"It's an Etcha-Sketch!"
Body like an Escher sketch.
makeitstopmakeitstopmakeitstopmakeitstop
makeitstopmakeitstopmakeitstop
"The funny thing is, I'm mostly not in pain."
The nerves continue to send the message but above a certain level of repetition, the brain no longer translates the pain signals.
"Have you tried standing on your head dangling crystals from your toes?"
makeitstop
"Well, if you're not prepared to even try..."
too weak to stand
"Have you tried exercise? I know it seems hard but it really helps."
eyes still, face still, body still, not stabbing anyone
"I can't imagine what it's like"
try
"What's wrong with you?" please just give me the wheelchair i need to sit
"What do you need?" "How can I help?" "I'll pop round"
missing months, unhappened wildflowers.
"Have you taken your painkillers?" "I don't know."
gaps
"So sorry for not replying sooner and I'm so sorry I missed your birthday / wedding / graduation"
the sofa. dreams of green. maybe with cushions I could sit outside.
"I know you're ill, but I've been in my new house five months, you're my best friend, and you haven't even bothered to visit! It's only a two-hour drive!"
lying on the sofa, seeping fever-sweat from showering and dressing, maybe in an hour I can stand
"I hope you feel better soon!"
drugged, I'm teaching my father how to dust
"Thank you so much"
was he here? did i teach my father how to dust?
"Hey, at least I'll be better after menopause!"
punching the fridge until my knuckles bleed and swell
"Hey, at least I'm not a dancer!"
burn and ache, burn and ache, makeitstopmakeitstopmakeitstopmakeitstop
"There may be some side effects"
fish and nausea and you might experience suicidal ideation, it's self-limiting
"So sorry not to have replied sooner"
"Sorry, really meant to reply"
"I'm sorry I couldn't"
"I'm so sorry, baby, I just"
it hurts makeitstop

Cooking around endometriosis

This isn't an endo diet but rather how to cook around endo: how to cook when you can for when the endo is bad and you can't. It's not just for people with endo, of course: the same approach is useful for any illness or disability which gives you up-times and down-times.

The Disruptive Discourse of Chronic Pelvic Pain

An academic article rather than a personal post, originally written in 2004 with a minor update to the Epilogue. This article explores how the structural framework of the doctor-patient relationship breaks down when women have unexplained Chronic Pelvic Pain (CPP), and explores some of the gender prejudices underlying this through a textual analysis of three books on chronic pelvic pain. These books were not specifically chosen for their gender prejudice; they were all I could find in the Bodleian Library on the subject of CPP in 2004.

Abstract

Chronic Pelvic Pain challenges the structural framework of pain, which both patient and doctor attempt to recuperate. Both patient and doctor rely on archetypal roles (the figure of the Doctor, the figure of the Woman), which need to be reconsidered for treatment to progress. The doctor's attempt to recuperate the framework relies on unsubstantiated psychogenic diagnoses and implicit blame, grounded in Freudian views of women; the patient's counterstroke is to withhold psychogenic information, including potentially valuable data on hormonal side-effects.  For treatment to progress and a successful framework to be recovered, both the patient and doctor roles need to be rethought.

Is this a beautiful shape?

Is this a beautiful shape? I could post this on Facebook and get the usual slew of obligatory compliments: "You look fantastic!" "Sooo beautiful!" "What a stunning bump!"  And so on.

Except I'm not pregnant. This isn't the elegant curve of a baby bump, it's the indistinguishable curve of endometriosis. It really is indistinguishable: when my endo's bad, I look so convincingly pregnant that I'm offered seats on buses, told off for drinking by strangers, congratulated by acquaintances. To add to the versimilitude, I often protect my stomach from painful knocks with a hand, exactly the sheltering gesture of a pregnant woman. Except I'm not pregnant.

Your stubbed toe still hurts

With the pain returning, I'm abruptly debilitated - unable to cook, clean, shop, barely able to walk. I'm reeling with the generosity and help of my friends. I idiotically put pine essential oil in a hot bath and ended up not with soothing heat for my swollen stomach, but burning all over, and too sore to shower or to wash the bath and start again. I bewailed my idiocy on Facebook - and a friend nipped over, made me tea, and cleaned my bath. Another friend messaged twice to ask what she could get me from the shops and went shopping for me. Another came to spend the afternoon with me and support my arm so I could have a short walk in the sun. And then, "I feel rougher than a badger's bottom," says a friend who's ill, "But I can't complain when you're suffering so much."

"I'm a bit... sore."

After a charmed two years without treatment and nothing worse than bad period pains and dyschezia, the pain is starting to return. Very slowly, imperceptibly, month by month. Is it  getting worse? And a few months later... It's definitely worse than last month.  And a month later... This is definitely worse. I call it subtle and imperceptible, but I've dropped to the floor in front of my partner when the pain attacked without warning and in privacy screamed out loud. I scrabble to put two coffees down as the pain starts, otherwise I'll drop them. I hate people knowing I'm in pain, but I have to tell my writing students, because I need to sit down while I explain something to them. And I realised, I say to people, "I'm a bit... sore."  But only me and my partner know what that actually means.

“I’m a bit… sore”

In chronic pain, you stop displaying
as you ought.
your nerves report: still the same
excruciating pain, again.

you ought to crumple, double, howl
but instead
your mind goes dead: a trial:
meanwhile, you stiffen, slightly, smile.

the pain will pass, or, it will last, and
all your will
can only still literal screams:
such pain long since exceeds your means

to respond, as you ought,
to what your nerves report

The beautiful calm of intense pain

You'd have to be Sherlock Holmes - or the primary care-giver, parent or partner - to spot the tells.  The unnatural smoothing of the forehead.  The thousand-mile stare.  The gracious, unexpected freeze.  The slight smile, even, because smiling releases serotonin, a natural pain killer.  And this is what indicates that the invisible leopard is eating your stomach, tearing out strips of flesh, gnawing inwards, snuffling deeper for the tasty organs.

"You look well!" or, more disconcertingly, "But you look so well!" or worst of all, "You don't look sick!"  Few illnesses come with handy suppurating sores.  But even so, fair enough: punch someone in the stomach and they'll groan, yelp, scowl, grimace, their face crumples, they double over.  That's what pain looks like.  With chronic pain, though, eventually you just stop displaying pain.  You can't scream and scowl your whole damn life, you know.

I'd forgotten all this, so I'd forgotten to take ibuprofen before I left the house, even though my period had started. The pain only really hit when I reached the coffee shop.  Today's plans: coffee-shop planning of my week; shop for presents; pop over to my friend B's to deliver presents to her kids; clean house; dinner out.  Today's metaphors: two large millstones slowly grinding my stomach between them; an invisible leopard eating my belly; a hot tide rushing up and down my leg marrow.  It's immensely distracting: brain, interrupted.
"Coffee?" says the waitress.
One, two, three. Why's she asking? I'm here every Sunday, and often in between, they all know me, I only ever have coffee.  One, two, three.  "Yes."  One, two, three. "Please."  One, two, three.  Smile.
She gives me a quizzical look, but I can't see how to explain that the invisible leopard eating my stomach is responsible for the odd delays.

I sit, very still, and wait.  I've taken the ibuprofen, now.  It will start working soon.  The beautiful calm of intense pain, I think.  How it interrupts one's thinking, every natural chain of thoughts and flowing intellectual flight cut into snippets, processing power swamped by overwhelming sensory stimulation, attentional blink - my esoteric musings are cut short: fuck!  That bloody hurts!

My coffee arrives.  I can't lean forward to reach it.  Shift my chair? Pain level: 8.  Duration: 3.  Visibility: 1.  Nah.  Shift the table instead.  Pain level: 5.  Duration: 3.  Visibility: 1.  I shift the table, but coffee slops into my saucer.  Shit.  Now I have to cross the restaurant to get a napkin.  Pain level: 7.  Duration: 30.  Visibility: 10.  It's like the bloody shipping forecast in here.  Poor; losing identity later.

I can now reach my coffee.  Each time I lift it, carry it through the air to my lips, and return it, I'm quietly screaming inside.  Stuff it, not worth it.  I'll drink it in half an hour, when the pain killers set in.  I also can't lean over the table to start my planning.  I reach into my mental timetable to start adjusting my already crammed schedule by half an hour... Ah.  Right.  Revised plan for the day: sit still for half an hour, then plan.  Apologise to B re visit, presents, kids, etc.  Aplogise to partner re house.  Dinner out?

So I sit.  A smooth forehead, a dreamy gaze, a Mona Lisa smile.  (Plus invisible leopard.)

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