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.

What you're seeing there is mostly inflammation. You know if you slam your finger in the door, it swells? That swelling, that's inflammation. But you don't think your finger's suddenly got fat. You don't think your finger needs to lose weight, pronto. You don't think your finger should do extra finger exercises to make it thin again. Also, you don't have an entire society pinning your personal attractiveness and social value on how flat your finger is. Whereas I look in the mirror and I know it's swelling, but what I see is fat. And I feel shit.

It's also slack muscles, by this stage. Three months of not being able to use my stomach muscles for anything, even kettle-lifting, else the inflammation gets worse, and of course the muscles are now slack. Some of it is weight gain, too: again, three months of enforced inactivity, you're going to gain a bit of weight. But usually, when I gain weight, I don't look pregnant - I just look like I've gained weight. I know this, and still, when I look in the mirror, all I can see is fat.

I believe so strongly in fighting for a positive body-image, against the tide of thinspiration and photoshopping and all the rest. In the sea of beauty = worth, skinny = good, I cling to life rafts. To this extraordinary, healing article by a physiotherapist on what people really look like. To this Dove ad about Photoshopping faces. To this video about photoshopping a model's body. I limit my exposure to the poisons: I don't buy women's magazines, watch commercial TV, or live in a city with intensive billboards - the less advertising I see, the better my body image. I rant about it, unpacking and unpicking the cultural assumptions from the fabric of my mind, to try keep it from taking hold. I joke about it: when I'm confronted with an array of women's magazines at the supermarket checkout, offering your best ever body! and the perfect bikini body! I mentally translate "body" as "corpse". Suddenly there's a thriving, colourful industry of corpse collectors, instead of seven shelves full of triggers to feel shit about myself.

But with endo, it's so much harder - and harder still when I can't even take refuge in rejoicing at what my body can do, my own pleasure in its strength as I walk or paint walls.

It might seem strange, in the face of severe pain and wheelchairs and daily dependence, even needing help with dressing, to talk about body image.  (Another of the double-standard double-whammies: women are valued by their beauty, but God forbid we actually care about it ourselves. Vanity! Women fussing over their appearance! So shallow! Etc etc etc.) But even holding firm to all my knowledge and all my feminism, some days I look in the mirror and I want to cry. I fill with self-loathing, because I'm fat and that's my fault.  So I couldn't exercise - well, why did I still eat?! I try to get dressed, discarding dress after dress that won't fit, fighting back tears, and start the day feeling sick.

We don't talk about this much in endo, at least not publicly, but I've spoken to other women with endo who also weep over that suitcase of clothes. We swap tips on dress-cuts - babydoll's a winner because it doesn't constrict that oh-so-tender swollen stomach... but also because it hides it. Mostly because it hides it.

I don't want to give in to the self-loathing. As I start the slow progress of recoveirng my mobility, strength, and independence, I don't want to castigate myself for looking fat. But yes, I care how I look. From my abruptly limited wardrobe, I have three dresses that fit me and in which I feel comfortable - only one in which I feel comfortable about how I look. That's not the dress in the photo; it doesn't show my stomach and that's the point, but I can't wear the same dress every day.

I bought the dress in the photo nine months ago, for this summer, when I was well and my body looked rather different inside it. I put it on this morning, looked in the mirror, my face fell, and my eyes filled with tears. I look pregnant, I thought miserably.

And then I thought: I look pregnant. Women look beautiful, pregnant. Pregnancy is a beautiful shape. This is the same shape. Is this a beautiful shape?

No moral here and no conclusion. I can't magically strip the mesh of all society's enculturated views from my brain, however hard I try to fight them. Just a talisman to hold onto.

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."

Oh yes, you can. My endometriosis doesn't magically make everyone else pain-free and illness-free. (If it did, I'd take it on the chin and celebrate; at least it would be for something.) Your flu is still awful. Your period cramps still suck. Your stubbed toe still hurts. My pain doesn't cancel yours out nor does it dwarf it.

I recognise the sincerity and generosity behind that thought: the recognition, even: and I appreciate it. The reverse can be horrific. A friend who's recently lost her husband was given some coping tips by a woman who said they'd really helped when she lost her dog. Sorry, what? You're comparing the loss of a pet to the loss of a husband? You don't do that. But it's not the other woman's grief that the friend objected to, just the comparison.

You can't compare pains. Sometimes people do, trying to find a place from which to relate to something they have no experience of. "Housebound? That must be really difficult, I spent a couple of days on the sofa with flu and it was so frustrating not being able to go out." That's well-intentioned and can be tactless (especially if they make a direct comparison). I try, in those cases, to respond to the intention, which is empathic. I can't expect people to know what endometriosis is like or to know what my experience of it is like, so if they're looking for an in to understanding, fair enough. If it's a very poor in, I can try and explain more, if they want.

But most people, in my experience, err in the other direction, so this is just to say - it doesn't matter how much pain I'm in, your pain still hurts too. And thank you.

(Apologies if the writing here is less articulate than I might wish. Sometimes the endo bit really does sabotage the writer bit.)

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
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.

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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Saturday, 26 February 2011

Progesterone intolerance: Loss of enjoyment

• 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.

Loss of enjoyment. It sounds like nothing. An "Oh, dear" at most. For me, this is by far the worst effect of progesterone intolerance – and the most destructive.   Progesterone inhibits reward responses, which give us a sense of pleasure or enjoyment.  Without that, making decisions is extremely difficult (not to mention risky) and life loses its purpose.  Trying to 'fix' that, without knowing what's actually wrong, can destroy one's life.

Progesterone and oestrogen are effectively the two halves of a woman's cycle – oestrogen builds in the first half, up to ovulation, and then progesterone takes over from ovulation to your period. Research into rewards and the menstrual cycle found that progesterone lowers women's reward responses, the "yes!" we get from doing something we like or are addicted to. 'Woohoo!' cried the researchers. 'We can use it to stop women shopping and taking drugs!' But as Emily Anthes's article notes,
If progesterone is blunting the effects of rewards, it could spur women to engage in more pleasurable activities–such as impulse shopping–just to generate the same 'high''.
Amidst the compulsion to see women as compulsive shoppers and beings whose behaviour can and should be controlled, an intensely important issue is entirely overlooked: progesterone lowers women's abilities to experience neurological rewards.  When you are progesterone intolerant, this can become severe and turn into total loss of enjoyment, or "anhedonia".

The reward response is the interior "yes!"   How much one relies on that interior "yes!"  To know you're enjoying an evening.  To know you're full.  To know the caffeine's hitting the spot.  To know the wine is having an effect.  To know you like your friends.  To know an idea's good, to know a plan is worth pursuing and should work.  Meanwhile, the interior "NO", that note of warning, is unreliable: sounding more and more often, more and more loudly, ringing the bells of anxiety, guilt, fear, but could be, probably is, paranoia.

It's astonishing how little can be objectively decided, how reliant we are on that interior "yes" and "no". Perhaps it should not be so astonishing, because whether we like it or not, emotions are how we make decisions:
The limbic system forms an emotional core of the human nervous system ... The limbic brain has retained its function as the decider of valence [during the evolutionary process]. What the cortex does is provide more detailed analysis about what is going on in the world so that the limbic brain can decide what is important and what to do. (Cytowic, 1994: 157, 168)
It's so strange to try function without that interior guidance, without the "yes!" and closing your ears to the constant misfiring "no", like being a computer trying to pass the Turing test, constantly needing to check in with real human beings, who have access to proper feelings, to check you're doing it right.  I need it right now, writing this, to know which personal painful excerpts to include to best illustrate this ("yes") and which are too personal ("no").  And some are exceptionally painful and personal: lacking access to that "yes!" can be disastrous, because that's how we judge things are working.

The food's not working, so you have some more. The wine's not working, so you try another.  The coffee's not working, so you try another.  The relationship's not working, so...  The degree isn't working, so...  The house isn't working, so...  The job isn't working, so...  The natural human response, if something isn't working and is bringing you no enjoyment and no reward, is to change it – but it's working just fine.  It's you that's not "working".  The natural human response, if you are without enjoyment and reward, is to look for it – but it is nowhere to be found, nothing brings it, and you're not yet ready to give up on life, not quite, so you keep trying.  The fruitless pursuit of pleasure can be immensely damaging.

The fact is, the food won't make you satisfied, just full.  The coffee won't make you excited, just jittery.  The wine won't make you happy, just drunk.  The music won't swell your soul, the scenery won't lift your spirits, the hug won't make you feel loved, the evening out won't bring you fun, the joke won't make you laugh, your work won't bring you satisfaction.  That sounds like a desolate list.  It may be horrible to experience, but it is good to know.  Nothing is actually broke, so don't fix it – don't break everything, trying to fix it.

This is easier to do when you know what you're experiencing. If you don't know nothing's broke, if you don't know you're progesterone intolerant, if you don't know your reward responses are being blocked, you think it's all real.  From the age of 19 to the age of 25, that was my reality.  I broke things.  I remember the university coffee shop, sitting in coffee steam and cigarette smoke, trying to piece my reality together out of the fragments of everything I'd broken, trying to make sense of it and stitch my thoughts and myself back together word by word in my notebook.  I was so, so unhappy then.  And it breaks my heart to think it was all so unnecessary, just down to the pill, which I wasn't even taking for contraception, but because my doctor had convinced me it was keeping me stable and that without it I would be even crazier, more manic, more chaotic, instead of magically restored to my sane, calm, happy self within a month.  Instead, I flailed my way through hell, a hell increasingly of my own making, breaking everything in an increasingly desperate attempt to fix it.

You see, when you're anhedonic, you can't feel anything good.  Positive emotions just don't make it through.  But you can feel negative emotions.  And eventually, it's a relief to feel anything at all.

A year ago, I was in the grip of the same loss of enjoyment, anhedonia, but this time with the benefit of knowledge.  I drove to work with the wintery sunlight glistening through mist to gleam on water and catching on twigs, and looked it without response, numb.  The traffic crawled through perfect beauty and stopped; I looked at it and saw a field, a tree, some water.  The car in front would start moving and I would still sit, trying to find the will to put the car back in gear.  I had no reason to.  But I knew, this time, how to live like this: I knew how to stitch myself together with words in my notebook:
So here's the plan.  Hard-won experience tells me that however devoid of purpose life may feel, it does regain meaning at some point, so the thing is to keep the home fires burning – keep things in order & not contribute to any destruction.  So right now I can't imagine being able to write my novel, and plans for a holiday feel remote and blank, and the idea of wanting to earn money for anything in the future is utterly lacklustre because all the pull the future held seems to have vanished, snipped off.
I can't see or feel any purpose.  But I have to believe there is purpose.  And keep working towards my goals so that when meaning comes back, there's a well-kept, well-running, bright life waiting for it, in better condition than before.
There are things I can do by rote.  If this feels a bit like dot-to-dot of How To Live – well, that knowledge was damn hard won, so I'm not going to scorn it.
I wrote myself lists on how to live and followed them.  Lists of work, lists of housework, lists of how to rest, lists of how to socialise.  I put my head down, bereft and purposeless in a life devoid of meaning, and followed the lists.  After a few months, I had the Mirena coil taken out.  I remember the exact moment I first experienced enjoyment again.  I was walking into town to meet a friend, with the same dull list-following sense of duty that had characterised the last five months, and walked past All Soul's College in Radcliffe Square.  The golden gate caught the last of the sunlight, the green lawn of the quad glowing behind it, and my heart gave a tiny flutter, a butterfly twitch, no more.  "That's beauty," I thought, dumbfounded.  "And I responded.  I actually felt it.  I felt enjoyment."

Loss of enjoyment (anhedonia) 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.

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Cytowic, Richard E. 1994. The Man Who Tasted Shapes. London: Abacus.
Thanks to Emily Anthes on Wonderland for reporting progesterone reward research
Music: Into the West, Annie Lennox
Painting: Melancholy of a Beautiful Day, Giorgio de Chirico

Friday, 4 February 2011

Progesterone intolerance spotlight: paranoia

• 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.
Paranoia is my early warning system that the progesterone side-effects are starting to kick in. It starts as a feeling of vague intuition - I shouldn't be using this soap, I should be using the other one. I should turn down that road, not this one.  In the coffee shop, a quiet conversation between the manager and the waiter alarms me: are they talking about me? Don't they like that I sit here scribbling and drinking coffee, have I done something wrong? I don't have my computer. I haven't checked my email. Something might be wrong, something important, with work, am I in trouble, have I done something wrong?

Sourceless anxiety hunts around looking for something to pin itself onto. Each time it does, I try - quite rationally - to refute that specific anxiety. But that doesn't get rid of the anxiety itself, because that's not where the anxiety's coming from - it's coming from a reaction to an artificial hormone, progestogen, which is still there. I remind myself, instead, that it's not to do with anything, not the waiters, not work, it's just paranoia.

Ironically, paranoia's recursive. When I try to face it directly, it feeds on itself: am I whipping myself into a frenzy of paranoia? Am I actually feeling paranoid or am I just being paranoid about being paranoid? Is it my fault?? HAVE I DONE SOMETHING WRONG? Goblin guilt.

It can be anxiety and guilt; it can be worse. Years ago, in a quiet pub, I began to panic that the door would open - and then it did. My panic would rise - oh god, please don't let them approach me - no, no, they're coming straight for me... Of course they were. I was the bloody barmaid. I had to take anti-depressants just to cope with the terror of serving customers. It would've been better to stop the damn pill, but I didn't know that then.

Years later: living in a shared house, a huge old three-storey thing by the canal, shabby and plain and clean. Late evening. All the housemates were out. My room overlooked the street outside, a busy thoroughfare from the station to the centre of town, safe enough, sometimes a bit iffy-feeling. I grew anxious. I closed the curtains. I sat, trembling. Now I could no longer see if someone were poised to smash their way in. The single-pane shutter windows were fragile. I was being ridiculous; no-one would break in. Frightened, I left the room and went into the corridor, but that was worse - stairs leading up, disappearing into the dark and a houseful of darkened rooms; okay, staying calm - F's room then, same floor, at the back of the house, overlooking the garden, besides, he's a good friend, it's a safe-feeling space. I enter his room. I can't shut the door, because then I wouldn't be able to see into the corridor to be sure it's empty. The staircase dwindling into the dark still unnerves me, but I can't walk up into the house switching on all the lights because to do that I'd have to walk into the dark. Here, I'm standing in full electric light. The curtains are open. I can see myself white-faced and dressing-gowned in the glass. And then I realise - I was wrong all along. There's no-one outside my window, there's no-one upstairs in the house, they're in the garden. Standing there, in the dark, looking in at me illuminated, seeing my terror and seeing that I'm alone. I try to tell myself that there's no-one in the garden but I know they're there. And any moment now... Weeping with fear, I rush back to my room, struggle into my jeans, fumble with buttons, I can't move fast enough, I'm taut with terror waiting for the glass to splinter, I'm yanking on a t-shirt - I bolt into the corridor, out the house, onto the pavement. Trembling. Sordid orange lamplight, people - none of whom are safe. I start to run. The wind is whipping and a giant spider scuttles at me - but it's a leaf - and the next leaf is a spider, or a leaf, and they're chasing me - I run up Walton Street, frightened of shadows and frightened of empty deserted pavements and frightened of the sudden looming shapes of people, I run over the gratings of basement flats sick with fear of what hands are reaching up and grasping for my feet, I run all the way to the bar my boyfriend works at and walk in shaking, trying very hard to act normal.
"I had a panic attack," I say, when he approaches, as if I'm not still having one. He gets me a table and brings me a glass of wine. There are pillars wound with roses, and behind the pillars, there are things hiding. I know there's nothing hiding behind the pillars, that this is a restaurant not a monster den, the same way I knew they were leaves not spiders, that nothing was creeping through the gratings, that there was no-one in the garden, but the fear's still raging and all my evolutionary history demands that I identify the source and fight it or flee it. I convince myself instead that he will fight any monsters that appear and sip my wine until the shaking stops.

That was the last time I took the oral pill. But to control my endometriosis, I use the much lower dose of the Mirena coil, and over the course of six to eight months, the side-effects creep up. This is my advice to myself.
If you think you're being paranoid, you are. If you fear you might not really be paranoid, you're just being paranoid about it, that's paranoia. If you're paranoid that it might not be as bad as you think and you're causing it yourself, that's paranoia. Once you've identified it as paranoia, ignore everything it says, including everything it says about the paranoia. Don't listen to the goblins.
Hard as it is to talk about (paranoia will try to stop you saying its name), it's worth having a few people who know the situation: saying what's happening helps neutralise it, and you can check in with them to get a more accurate perception of things. (Having someone like that at work as well is invaluable.) Plus, then you don't need to be paranoid about what they might think of your paranoid behaviour.
Paranoia 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.

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