Saturday, 12 March 2016

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.


Friday, 21 November 2014

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.

Wednesday, 25 June 2014

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.

Sunday, 23 March 2014

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."

Thursday, 20 March 2014

"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










Wednesday, 13 July 2011

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.)

Monday, 4 April 2011

Progesterone intolerance spotlight: depression




• affects 1 in 5 women
• likely if you get bad PMS
• damaging & avoidable
Effects include depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing
Progestogens are in...
• the contraceptive pill
• the contraceptive injection
• the contraceptive implant
• the Mirena coil
• some HRT
It's a key treatment for endometriosis.

This series of posts highlights the effects of progesterone intolerance, from my personal experience. They are not medical advice.
Medical professionals: it's important to understand the severity of progesterone intolerance and the damage it can do.
If you think you are progesterone intolerant: avoid taking progestogens if possible and find a sympathetic doctor. If your doctor dismisses your symptoms, change doctor.
sorrow   hopelessness   total perspective vortex
Sorrow
When someone close to you dies, or when someone you love deeply breaks your heart, the sorrow comes wherever you turn. You open your eyelids to your loss in the morning. It's waiting in the mirror when you raise your face from the basin. You open your wardrobe and it stops you dead, staring into the folds of clothes, numb with sadness. You lift your tea and tears clog in your throat, stopping you drinking. You rest your fork, you put down your pen, you turn to cross a road, and another wave of grief and loss floods you.

The sorrow of depression is the same.  Waves of sorrow, grief, and loss hiding in all the folds of your day.  But sorrow about what?  Like the anxiety of paranoia, it finds something to attach itself to - and in my experience, with more success than the anxiety. Few human hearts have no secret griefs. And grief is proportional only to itself.

If you already get severe PMT (and that's likely, because it correlates with progesterone intolerance), you're probably experienced at separating out the actual issue and the massive sorrow.  I use PMT as an emotional audit: okay, those things are clearly the issues, so I shall deal with them - after the PMT has gone. Jot it in my diary for three days' time, emotional to-do list. But what if the feeling doesn't go for three weeks? Two months? Years?  And you know that it's not going to get better. Ever.

Hopelessness
Alongside the sorrow, comes a feeling that the lights have been switched off in your life. Your job - an empty pursuit, an endless repetition on the way to retirement and death. Your relationship - loveless, an enactment of norms. Your finances - desperate, because what you have now is not enough and there will never be more. This day - hollow and scraped clean of meaning, only a list of things you need to do, or that you're supposed to "need" to do; you can see from this moment, walking alongside iron railings, to the moment you get home, and the kettle put on, and tea made, and then you will drink the tea, and then you will have finished the tea, and then you will do something else. Make supper, perhaps. So you will make the supper, and then eat the supper, ash in your mouth, and then you will have eaten the supper. Perhaps you will watch something on TV. It will make no difference to your life, but you will watch it, and then you will have watched it, and then you will go to bed. Perhaps you will go out for a drink; the putting on of the make-up, the buying of the drinks, the drinking of the drinks, the drinks are now drunk, and you go all the way back home and take the make-up back off and you are where you started, and nothing has changed.  And nothing will change; nothing will ever get better.  Your heart will never hurt less than it does now.  Your dreams will stay the dead seaweed they are today; no waves will wash in to bring them back to life.  Your every hope for the future, for the home or the love or the job or the book, is cut dead.  The lights won't come back on.  And what's more, this isn't some depressive mood, some momentary gloom: this is the absolute truth about life.

Total perspective vortex
 2 “Meaningless! Meaningless!”
   says the Teacher.
“Utterly meaningless!
   Everything is meaningless.”
  3 What do people gain from all their labors
   at which they toil under the sun?
4 Generations come and generations go,
   but the earth remains forever.
5 The sun rises and the sun sets,
   and hurries back to where it rises.
6 The wind blows to the south
   and turns to the north;
round and round it goes,
   ever returning on its course.
7 All streams flow into the sea,
   yet the sea is never full.
To the place the streams come from,
   there they return again.
8 All things are wearisome,
   more than one can say.
The eye never has enough of seeing,
   nor the ear its fill of hearing.
9 What has been will be again,
   what has been done will be done again;
   there is nothing new under the sun.
10 Is there anything of which one can say,
   “Look! This is something new”?
It was here already, long ago;
   it was here before our time.
Ecclesiastes 1:2-10
"For when you are put into the Vortex you are given just one momentary glimpse of the entire unimaginable infinity of creation, and somewhere in it a tiny little marker, a microscopic dot on a microscopic dot, which says 'You are here.'" - Douglas Adams, The Restaurant at the End of the Universe

Alongside depression comes this unshakeable, absolute conviction that, finally, you are seeing clearly.  The scales have fallen from your eyes.  The fundamental meaningless of everything is revealed; the total perspective vortex shows you the universe and says, "You are here."  The hollow futility of ads blasting fashion and must-haves, the pointlessness of all contemporary pursuits, the emptiness of days which fill themselves with these copied ruts - anyone who denies the truth of this is suffering wild delusions.  You are seeing the true heart of being.

I don't know if there's any way to shake that conviction, besides the experience of having been there before, and come out the other side, and watched life take back on its lifeblood of light, meaning, beauty, and purpose. Again, the seaweed: lying so blackened and dead, a wasteland, but when the tides come back, it will dance in the sparkling water among shining churning grains of sand, the magical underwater world of moving fronds and fish returns.  The dead seaweed isn't the truth of the sea or the coast.  But by God, at the time, it feels like it.

The sorrow made me want to take the knife and hold it to my wrist.  The hopelessness stripped my future of any option beyond that stark choice.  But it was the the total perspective vortex that made me press down, because I believed that what I saw was the truth of the world, that all the happiness and joy I'd ever had was just an illusion.  But actually, of the whole wonder of the sea, all I was seeing, all I was able to see, was the dead seaweed.

'Cheer up!'
Cheer up! Buck up! Pull yourself together. Get a grip! Stop feeling sorry for yourself. Have I ever told you how lucky you are?

Anyone who's suffered depression will recognise how unhelpful these sayings are. It's worth remembering that people are trying to help, mostly - but certainly with chemical depression or hormonally-induced depression, that simply doesn't work. It's like telling a person with a broken leg to go for a jog.  And it needs to be recognised as that: it is the hormones creating this state. Like the paranoia, like the sorrow, it is a hormonal, chemical reaction. It is not circumstantial depression.  Circumstantial depression may react to a change in circumstances.  Hormonal depression is being pumped in by the hormones, and all the good will and positive thinking in the world is no good while the source, the hormones, are still pumping away.   You don't try to stop a flood by imagining things dry; you find the source and stop that.

I have list upon list upon list, from the dark days, of How To Be Happy and Happy Things To Do and Things That Make Me Cheerful.  I painstakingly recorded, through crippling grief, things that I remembered used to bring me pleasure, and tried to do them, to fix myself.  I couldn't fix myself - because I wasn't broken.  My attempts only brought me fresh grief, because the things I most loved brought no happiness, and as I ticked off my lists, I crossed off one by one the things I used to love - until even writing, even reading, my two greatest joys, were as helpless to help me as the rest.  When you are trying that hard to be happy and people tell you to just be happy, how lucky you are, how you just need to pull yourself together, yes, that is difficult.  You can't.  Broken legs can't jog.  One of the posts still to come will talk about how you can help yourself cope with progesterone intolerance, in more detail, but for now, rest on this: it will pass; it is no more the truth about the world than dead seaweed is the truth about the sea; it is not your fault, your weakness, or your lack - you are strong.

Depression is an effect of progesterone intolerance. The effects of progesterone intolerance can damage lives, completely pointlessly. This affects 1 in 5 women, so please help raise awareness by sharing this post - and please feel free to share your own experiences.

Music: Hello by Evanescence

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