Monthly Archives: October 2012

What would Cthulhu do?

We’ve achieved a little distance now, from October 15th, and the international candle-lighting in memory of lost pregnancies and babies. Let’s breathe out.

You know, it’s an awareness campaign I thoroughly approve of (there are so freaking many of us, and we may as well live in a biscuit tin at the back of the cupboard), and I, too, light my candles and think Dead Baby thoughts, as close to 7pm as I can make it. But I’m not sure its an awareness campaign that, in the end, is for or about me.

What? I hear you cry. But, May, dear girl, you’ve had seven miscarriages! Maybe more! OK, they were all ridiculously early, but they were miscarriages and this really is about you!

And all I can do is look uncomfortable and say, yes, you are quite right, it does include me, insofar as I have lost pregnancies. But there’s the problem right there. ‘Lost’. As if they’d gone down the back of the sofa or fallen out unnoticed in a taxi. As far as I’m concerned, my embryos died, and then I bled and bled and bled and wept and raged and went a bit weird and survived on Ben&Jerry’s and black humour for weeks.

And another problem – the sugar-pink and pastel-blue colour-schemes of these campaigns. I get why these colours – they are chosen to represent little baby girls, and little baby boys, and remind the world that what was ‘lost’ was just that – a child, with a gender, an identity, personhood.

However (and this is what I find… awkward) pastels, culturally, are used as a short-hand for ‘feminine’ – razors marketed for shaving legs, armpits and bikini-lines rather than chins are usually pastel-coloured; as are pens (*snort*), tampon boxes, bra-and-knicker sets, diet-food cartons, hair-clips, purses, vitamins for pregnant/menstruating/menopausal women, mobile phone cases ‘for the ladies’, and so forth. Note, things especially that relate to the more carnal, earthy, and bodily aspects of femaleness – armpit hair, periods, deodorants, being unacceptably zaftig despite the fact many women are supposed to have arses that shape oh my God – are marketed as pastel, as sweeter and daintier and cleaner and less fleshy than the actual reality. It’s unfeminine to have armpit hair and menstruate. And yet I cannot think of anything more female.

And so to the pastel colour-scheme of baby-loss. It is being presented as a feminine, dainty, bodiless thing. The babies are, euphemistically, ‘lost’, which is tragic, and remembered in soft sweet colours, which are non-threateningly not-ookie. And yet, every single woman who has miscarried or given birth to a dead child or had her baby die in her arms knows, really actually knows, that this was a bloody, bloody, painful, messy, ugly, process. It hurt physically as well as psychologically. There was blood and torn flesh and fluids and clots and snot and tears and vomit and no fucking dignity left whatsoever. It was not dainty. It was not ‘feminine’. It was intensely female, yes, and the female body is just that, a body. Made of meat. And this is terrifying.

Very well, so the non-threatening, babyish and feminine colours are ‘necessary’, to make the whole sorry mess publicly presentable – a ribbon you can wear on your coat without scaring small children, a subject you can raise without making your listeners rush away, fingers in ears. I do see that. But also, alas, it has the unfortunate side-effect of minimising miscarriage and infant death. They’re pastel. How can they possibly be a big deal? And anyway, they’re a lady thing, like periods.

So that’s another point – this pastel, feminine view of it all excludes not only the actual horrible truth of the experience, but it also excludes men.

You know, those human beings whose child it also would have been? Who were there when the woman they loved was bleeding and weeping and screaming? Who saw and held the tiny fragile body of their dead child? Who called the ambulance? Who paced the hospital corridors while the love of their life was having the remains of his DNA scraped out of her, away from him, away from anyone who would hold her with tenderness as it happened? The men who are also grieving? The men who already have no words, no place, no socially acceptable way of grieving? Who end up retreating into silence, anger, frustration, pretending it never happened? Because the only context in which the subject is dealt with is public is one of unrelenting, sanitised, saccharine, pastel femininity.

H and I were discussing my Halloween miscarriage of 2009, what with the anniversary approaching and me acting therefore like a harpy with PMS and a nettle in her knickers. H said he hadn’t really remembered it was that time of the year. And then he said he didn’t really ever think about it. And then he cried, because it had been so horrible, and he had been so scared. And it has taken him three years to say that out loud, even to me.

And a final point. The angels. There is a lot of talk, on miscarriage support sites that I have visited, of angels. The baby is now an angel. People say this even when they don’t seem to have any particular religious beliefs. And I do get it. How horrible to think your longed-for child has just… stopped. Ceased. Finished. Over. Gone. How necessary, how important, to be able to visualise them existing somewhere still, perfect in their innocence and freshness, waiting to be reunited with you.

But I am an atheist. And I don’t believe in an afterlife. So, actually, my longed-for children are passed on. These embryos are no more. They have ceased to be. They’ve expired and [not] gone to meet their maker! These are late embryos! They’re stiffs! Bereft of life, they rest in peace! If I hadn’t flushed them down the bog they would be pushing up the daisies! Their metabolical processes are of interest only to historians! They’ve hopped the twig! They’ve shuffled off this mortal coil! They’ve run down the curtain and joined the choir invisible! These…. are EX-EMBRYOS!

And you know how much comfort all the ‘angels in heaven’ talk gives me? Absolutely bloody none. And not only that, it excludes me. I can’t talk about my totally tragically utterly dead embryos because that would be offensive to people who do believe in baby angels. And I very much do not want to offend and upset people who do believe in an afterlife, and who know their own babies actually really are angels in heaven. But that’s the point. I am never going to see mine again. They are not looking out for me in heaven, in the company of all the bloody-minded grouchy atheistical old bastards who they’re related to and who pre-deceased them.

I have a sadness that is full of rage and loneliness and black, black humour, and the organisations and support groups allegedly there to support women like me, well, simply don’t. And they have nothing to say to my husband either.

I am not feminine. I rarely shave my legs in winter. I don’t wear make-up unless someone’s getting married. I watch the rugby, I wear DMs, I drink Guinness. I wear sugar-pink and pastel-blue about as often as I pole-vault naked into crocodile enclosures. There is nothing demure or discreet about the way I menstruate. The only person I called an angel lately was H, when he cleaned the bath-tub and then ran a bath for me because my back was sore. At this candle-lighting virtual support meeting for pregnancy and infant loss, I am lurking at the back, clutching a glass of gin, lips firmly pressed together in case I start humming the Dead March from Saul. My husband hasn’t even been allowed in the room, and is, I think, sitting on the stairs in the cold, completely alone. And in a hydrangea sea of butterflies and cherubs, I am wearing a blood-red ‘What would Cthulhu do?’ teeshirt in Gothic black lettering, complete with tentacles.


I think my boss likes me

The Occupational Health report! Yes. My place of work received it, and my boss arranged a meeting, and we met, and I was rather nervous because, you know, cuts in pay or working extra hours were both on the table and I didn’t know which was going to come up. I was hoping for cuts in pay, because working extra hours when I already get this bloody tired seemed miserable.

I am well aware we, H and I, are very lucky to be able to take a pay-cut without much in the way of struggle and angst.

However, Boss Lady’s agenda was completely different. Completely:

  1. She wanted a better understanding of adenomyosis and endometriosis, both generally (she’s not familiar with the details beyond knowing they are gynaecological problem and painful), and of how they affect me. And she did this with grace, humour, and compassion.
  2. She was also very understanding and compassionate about the whole ‘can’t remove uterus, burn it, and dance on its ashes because we’re still trying to procreate’ thing.
  3. She was very unkeen on the idea of my taking a pay-cut or working more hours. She felt quite strongly that as I have a legitimate medical condition, I shouldn’t be put in the position of doing more to compensate. There is quite a lot of complicated office politics behind this, including issues around other members of staff with serious health problems, and other members of staff with – ohh, just say it – serious mooching issues. We both assiduously pretended we had absolutely no particular people in mind at all and anyway neither of us had just alluded to that situation at all.
  4. Also, this is Britain, where we have actual laws protecting workers from discrimination and firing and such because of health issues. At least, we have these laws at the moment (fucking Tories), so I should take advantage of them while they’re still in force.
  5. Decision taken – we carry on as is, but I set my computer up so I can work from home on days when I am ill and miserable but not catatonic or bathroom-floored. On the strict understanding that I only attempt to do some work when I really am feeling able to and don’t wear myself out or try to code under tramadol.

So there’s that. Currently reprogramming laptop. Onwards.

Not random at all

Item – You may have noticed H and I have stalled a little on Forward Progress In A Fertile Direction Also Known As Better Reproducing Through Chemistry. We have all our test results, I have a plan and a clear idea of what I will and will not put up with in terms of treatment. But… [awkward pause]… You see, Dr Expensive’s plan is to do LIT, then do several cycles au naturel, while medicated to the freakin’ eyeballs with steroids and anti-coagulants and intralipids and then progesterone too. H is up for it. I am very (very very very irrationally freakoutily) concerned that we’ll get the timing of the sex wrong (this happens, you know, even to H and May the Defiant Sex-Bunnies Of Doom). Or, we’ll get it nearly right, but it would’ve upped our chances to do it one more time which we didn’t. Or something. And the cycle will end in Shark Week and I am – shall we say concerned? Yes, concerned will do – concerned that I will react very poorly to this and put some kind of strain on our marriage. I am inclined to try IVF, frankly. At any rate, I want to put a definite bloody absolute limit on how many cycles we muck about with freestylin’. Say three. H, however, well, apart from my doing the poor man’s head in re: Correct Timing of PiV, he has reservations about IVF. Reservations he is in fact rethinking, admittedly, but he is currently in a Moving Forward In A Non-Committal Way To Preserve Own Sanity Whilst Trying Not To Freak Out The Wife paradigm.

Item – This, I decided, was a propitious moment to do NaNoWriMo.

Item – Basically, for the month of November, May will be closeted in the study/bedroom/kitchen/living-room floor with her lap-top and all the coffee in the Northern Hemisphere. H has nobly agreed to feed May at regular intervals and chuck a duvet over her every midnight. I did NaNoWriMo once before – before this blog, even, and did in fact write over 50’000 words in one month, and I did in fact get a perfectly useful first draft of a possibly quite interesting detective novel out of it, the only drawback with which was that the hero was as interesting as a roofing tile. Since when, eventually, he had gender reassignment surgery and the novel took off – but NaNoWriMo is for first drafts not rewrites, so New Eve is still in a box somewhere awaiting her redraft and I will be doing something quite quite different. However, the first time I NaNoWriMoed I had neither a full-time job nor a bastard set of damaged innards with a thing about chronic pain and fatigue, so I am asking a vast and complicated ask of myself here. This could be messy. Also faily.

Item – But fret not, Gentle Readers! You will not dwell in the suburbs of my good pleasure. H has also nobly agreed to take custody of the blog while Sturm und Drang is in progress. He his very own self even volunteered unprompted to perhaps take this space to explore his ambivalence to IVF and other such related matters (see? All Items Are Linked And Relevant). So feel free to nag him, starting November 1st.

Item – No news of my SiL. My family is remarkably bad at news. People often get married, have babies, get divorced, move house, and even die in total obscurity. Every few years we have meet-ups and the entire room rings to repeated cries of ‘you did what? When? WHY? WITH WHOM oh my God pass the gin.’ I have called my brother and left phone-messages, but I clearly see that ‘updating little sister one sees twice a decade’ is really, really not on the to-do list, and frankly nor should it be. Just… I worry.

Hence migraine

I am at home, again, today. I woke up feeling bizarrely cranky and unfocused, and monosyllabic, which anyone who has met me (or, hey, has read this blog) will tell you is uncharacteristic. Clumsily, I staggered off to the station, thinking ‘bloody hell, the sunlight is bright this morning. Really bright. This can’t be normal for October’.

Yes, well, you’re all sharper than me, so you won’t be surprised to hear that the next thing to happen was a scintillating scotoma eating the woman next to me’s head.

So I went home again, got H to ring work for me (bless the man) and put my head under the pillows for a few hours.

Bugger migraines. Bugger them to hell.

H, being ‘wise after the fact’, pointed out it’s 1) that time of the month for me, 2) I’ve been sleeping badly and 3) I’ve been stressed which = migraine. To which all I could groan was ‘you could’ve said’, to which he hinted I could’ve said, as I was the one behaving like an aphasic cassowary this morning, to which I implied that being an aphasic cassowary, I wasn’t in the best condition to judge my own state of neurological activity, at which point H wisely kissed my eyebrow and crept off to work.

Yesterday was International Pregnancy and Infant Loss Awareness Day. H was, well, I shall say out at his club, because it amuses me to do so, though no doubt he will give me the stink-eye when he reads this (he was at rehearsal. He’s proper talented, you know). So I said I’d be home by 7pm to light a candle, or several, to commemorate our poor little sods of embryos and your losses too, Gentle Readers. And H said he’d text me at 7 to let me know he was thinking appropriate thoughts. So that was the plan.

I admit I was feeling sulky about it. Not because H wouldn’t be there, but because I have been lighting candles for years now and I am very very sick of this twilight, bruised existance as neither mother nor not-mother. I currently am in a Denial Place about it all. I don’t want to think about it very often and I certainly don’t want to dwell on how much it hurts. I don’t want to be Infertile anymore and I don’t want to be bound on this wheel of torment anymore. So, no, I was not being pleased about the idea of lighting candles and focusing on loss and grief. I was going to do it anyway, out of solidarity, and because being in The Denial Place is just one of those places you wander in and out of for the rest of your life when a Bad Sad Thing happens, along with the Acceptance Place, the Raging Place, the Shan’t Get Out of Bed Place, the Reasonably Happy Place, and the Place of Lamentations (I doubt I’ll be here for very long, and I’m spending longer and longer in Acceptance and Reasonably Happy, fash not yerselves), and I didn’t want to face me in a few weeks time when I am visiting Rage or Lamentations, shrieking ‘and you didn’t even light a candle on the 15th and throwing plates. So I noted the location of the matches before I left for work.

Work, however, had a sneaky bastard trick to play. A couple of colleagues didn’t turn up, so I cheerfully (oh, hey, I wasn’t in a hurry) volunteered to hang on for another ten minutes so as not to leave my other colleagues in the total screaming chaos lurch. The manager who was supposed to be finding out what had happened to the next shift, didn’t. The other manager simply sodded off home without waiting to see if their staff had turned up. I ended up staying on an extra 40 minutes, hot and flustered. When H texted me something sweet and moving about Pikaia and our other benighted embryos, I was still on a (very packed, slow-moving) train. I felt angst. Much angst, with added pissed off.

So in the end I lit our candles at about 7:30. Then I ate cheese and rice-cakes. Then I blew the candles back out, went to the cinema on my own, and watched Looper (which wasn’t half bad, or, at least, Jeff Bridges wasn’t half bad, and the plot was fascinating, and Bruce Willis, as ever, was about as interesting to watch as a lump of silly putty, but, like silly putty, can be squashed into the correct shape for purpose and isn’t actually offensive or irritating).

And I had bad dreams.

Please no

Sorry, have gone silent, I know. I was all ready to tell you all about The Thing My Boss Said About The Occupational Health Report, and stuff like that. But tonight I just found out that my Sister-in-Law* has cancer, and I am suddenly very small and unimportant.

*(I have half-a-dozen of these. And half-a-dozen Brothers-in-Law)

The wisest are the most annoyed at the loss of time

So! Cycle 50… something? 53? I think it’s 53. Let’s say it’s cycle 53 of May and H’s Baby Quest of Doom.

[Awww. The Triumph of Hope over Experience. It’s quite inspiring, really – Positive Thinking Fairy]

[Oh my God, woman, this isn’t the Triumph of Hope over Experience, this is the Triumph of Bloody-Minded Yet Completely Mindless Biological-Impulse Driven Arseholery over Every Single Form of Common Sense and Decency – Bitter McTwisted]

H and I are composing an email to Doctor Expensive, to ask him if he a) has the biopsy results, and b) has formulated A Plan for us, and finally c) is this Plan batshit crazy or doable?

I am not interested in taking drugs like Humira or Nupogen, which have severe side-effects up to and including cancer, and have no real research behind them to back up their effectiveness in preventing miscarriage caused by auto-immune issues. Anyhow, if my endometrium is not riddled with killer cells, then this class of drugs would be – hahahaha – overkill.

I am prepared to do LIT, despite the lack of randomised double-blind placebo-controlled studies, as the side-effects are not nearly so scary, and the risks therefore acceptable. Also, H is keen on the idea, as he appreciates the logic of trying to get my immune system to recognise his DNA as very foreign and therefore extending it uterine diplomatic immunity. And I am happy to make H happy.

I am not only prepared but very eager to use Intralipids, steroids and progesterone support. My immune system is clearly pissed off and needs placating, and my luteal phase has always been a tad short.

I am not prepared to take Clomid again, and I may lose it and bite Dr Expensive if he suggests it again (but see Clomid Chronicles in sidebar, there).

I am prepared to do, say, up to three natural (all the fun of the fair in your own bedroom!) cycles, medicated with the above.

If the stress of au naturel becomes, eh, this is awkward, too stressful for timely matrimonial activity during these three putative cycles, I shall, oh, I don’t know. I honestly don’t know. Lose my freakin’ mind, I suppose. Threaten H with a testicular biopsy. Run screaming down the street stark naked. Join a nunnery. All three at once.

And then, IVF. On intralipids and steroids, top-up LIT, perhaps. Progesterone support would be mandatory, of course.

If Dr Expensive has other ideas, he’d better be damn convincing. I am sick of passively obeying doctors and telling my gut instinct it doesn’t have medical training so it should be quiet. Look where doing that has got me.

(P.S. – I’m getting a fair few ‘click overs’ to my blog from Facebook. I am exceedingly curious as to who is mentioning me over there and in what context. Anyone care to enlighten me? Please?)

I must be the world’s biggest pain-wimp

I cannot be the only woman whose periods are this mind-blowingly painful. So how do so many women who describe their periods as being The Worst Ever still manage to go to work/drive/care for kids/do housework?

Yours in bafflement also stoned (yay tramadol!),