Category Archives: I must empty my head now

Not that I’m sure where I’m going with this

Having a counsellor to talk to is fascinating. Having a good counsellor to talk to is, well, everyone should try it. (Everyone! A good one, mind!) One of my counsellor’s particular rules is I am not allowed to blame myself and beat myself up over, well, anything, really, as I have a terrible tendency to sit there staring up at the light-fixtures to stop tears overflowing my lower eye-lids, saying things like ‘If only I’d realised, if only I’d known, if only I’d tried to do X instead of Y…’

‘If only shmonly,’ says my counsellor, ‘You did the best you could with the information you had.’

In the course of this sequence of not-being-allowed-to-diss-myself, we also discussed why I diss myself. (Family dysfunction hununga rutoot nureek squilookle, tedious predictable). And I had an insight. Or a resight. All my life, the people around me, the ones whose opinion was most formative and important, told me that I was not worthy of love. I don’t think they meant to do that, honestly, but the messages were, variously, ‘you talk too much. Stop showing off, it puts men off. No one likes a smartarse woman. You’d be so pretty if you were thinner. It’s a shame you need glasses. You make too many jokes, men prefer it if they’re the funny ones in a relationship. Why do you have to be so opinionated? Have you lost weight? Why aren’t you a doctor/lawyer/professor yet?’

(Eeep, my family are such sexist bastards. Eeep).

I spent years thinking I’d never marry because no one at all would ever want to marry me. Why on earth would they?

And then H loved me, and my Important People were so! Very! Pleased! Because H, H was great. H was talented and good-tempered and thoughtful and did the washing-up and could cook and had a good job and was so patient with May. So patient. Look at H, putting up with May sounding off again! Amazing. Wow, now he’s being proud of her being funny! Look! Isn’t it special? Isn’t she lucky that he appreciates her jokes?

So, that was the dynamic, at least in my own head, for a very long time. H was The Great Catch, and I was the lucky, lucky, possibly undeserving inferior being who had caught him. God knows with what. Limed twigs? A large net and a trident?

Yes. Well.

We could flip this, couldn’t we? May is bright, articulate, funny, opinionated-in-a-good-way, has great hair, talented, cooks a fabulous lasagne, and actually quite a few people like (really really like) full-breasted curvy girls with neat ankles and a habit of poking their glasses up their noses and looking fiercely at things. How did H luck out and catch her? Watch May putting sweetly up with his ineptitude in all things literary! Awww, she’s explaining the neurobiology of consciousness to him again. Remember when she patiently showed him how to wash the outside of bowls and saucepans before stacking them in the cupboard? Isn’t he so very lucky he’s found a life-partner that makes him laugh like the proverbial drain on a daily basis? I wish my spouse made me laugh like a drain on a daily basis.

*sigh*

(Yeah, no, it was a resight. I just remembered this poem from June 2011.)


Parenting, UR doin’ it rong

We went to see my Dad. It was simultaneously awful and liberating.

Awful, because my Dad is still, fuck-and-alas, a galloping narcissist and if the situation isn’t all about him by heck he will make it all about him. We did have a fight. His heartfelt apology, for which I was at first so very grateful and by which I was at first so deeply moved, rapidly turned into a ‘thing’ about his self-awareness and how therefore we didn’t get to mind when he was a tiresome old arse because he always had been and always would be and because he was aware he was a tiresome old arse, it was an endearing quirk rather than brutally rude and cruel to his children, and the fact we’ve all got Serious Issues from is behaviour over the years is… Not a Thing? I guess? Because reasons?

Liberating, because my heart, which has always lagged miles and years behind my head on this, suddenly realised that there is no magic combination of saying the right thing or doing the right thing, at the right time in the right way, that will unlock Parenting Level ‘Unconditional Love’.

Awful, because there were good bits about having this man as a father – the love of words and books, the stories he used to tell, his wit, his humour, his good days when he was delightful and delighted with us – and as soon as you open yourself up to the good bits, you’ve made yourself vulnerable to the bad bits. And if you shield yourself from the bad bits, you’ve cut yourself off from the good bits. This is not a dance I can do well, or at all gracefully.

Liberating, because this is not my problem. I am not my father. There was enough balance and good example in my life to save me from this ugly inheritance, this inability to see people as people, as equals, this inability to empathise, this raging fear that someone else’s gift (brains, knowledge, money, charm) is a direct threat to him and will somehow annihilate him. And that is not me. And does not have to be me.

And then we came home again, and I went and discussed all the above with my counsellor.

It would seem that a life-time of being shamed for having the wrong sort of body/hair/eyesight/attitude/artistic talent*/height/academic aptitude/pubertal development/sized breasts/menstrual problems can leave a girl feeling profoundly inadequate. Being treated as a flaming nuisance and being repeatedly accused of hypochondria and whining every time I was ill or having a bad time with my periods left rather a tiresome selection of psychological scars. And therefore, when it came time to have a baby of my own, with a body I’d been taught was flawed (and its being flawed an act of perverse rebellion on my part), my inability to make a baby was for me a great source of shame – bitter, bitter shame and guilt. My brain knows this is fucking ridiculous. My brain always knew it was fucking ridiculous. I am quite bright, after all. My poor silly heart, which has the IQ of a golden retriever and a similar desire to love all the grownups even when they kick it, needed more time to realise that I am no more ‘flawed’ than anyone else.

All humans have issues, health problems, non-Barbie-dollness, scars, lumps, wonky bits and hormones, and are nevertheless lovely, loveable, wonderful creatures. I have just had bad luck. Not as bad as some people’s obviously. But definitely worse than other people’s. This was not because I brought it on myself, in any way. Why would I? How could I? It’s not even physiologically possible.

I cannot fathom the guilt, shame, embarrassment, and self-loathing that lead my parents to take a child with obvious health problems and frantically alternate between blaming her and insisting nothing was wrong with her rather than, say, take her to a decent gynaecologist and Get That Seen To, Because Poor Kid, It Sucks. But I know I’m not the only woman who has been shamed for having menstrual problems, fertility issues, and miscarriages. And I don’t know what is wrong with our society that this happened and keeps happening, but it needs to stop. And if you have ever tried to dismiss, down-play, shame, or judge a woman over these issues, I hope you get your pubes caught in your zipper and have to be cut free by a paramedic.

*Writing instead of drawing. Yes, my family went there.


‘Tis the season. Hi.

Gentle Readers, Season’s Greetings. How have you been? How are you all doing? Me? Oh, fine, fine. It’s a long story. Have a cup of tea. Or coffee. Or cocoa. Or wine. I don’t know what you like. I don’t know what I like. Excuse me, I shall just go and stare into a cupboard for a few minutes.

Anyway (I went for tea. I’m British) anyway, (I see you were serious when you asked how I’d been. In that case, I shall tell you. In Items. Because Items are traditional.

Item – Working from the toes up, my left leg, the one that developed the big fat DVT. How is that? Well, I had a final ultrasound scan of it, during which the sonographer kept a poker face to out-poke all poker faces. Then a week later we saw the haematology consultant (a third one. Consistency being a thing that huge NHS hospitals can’t actually do on the budgets they actually get). I had been somewhat bothered by the way my leg is still more likely to cramp, to get tired, to ache, than my right leg. It was weird and I didn’t like it, and I was somewhat concerned that despite all the walking about and trying to get fit again the stupid thing was not cooperating. And, well, of course it isn’t cooperating. Third Haematologist told me that though my popliteal vein was no longer completely blocked (yay?) the clot hadn’t completely dissolved and had now scarred over. So my left leg will get oxygen starvation if I over-do it, and will ache and swell if I stand about for too long, and is at risk of another socking great clot if I push my luck. Fucking A, man.

Item – Compression socks. I hate them. They have a purpose and their purpose is excellent and my ankle is not swollen on a regular basis with thanks thereunto. They still suck. I still hate them.

Item – Cerazette! Still my bestest friend in the universe. Every few weeks, I spot painlessly for a week. Otherwise, my pelvis is filled with peace, calm, sunshine and dancing rainbow unicorns.

Item – Cerazette! Demon! My hair is falling out. I have a metric fuckton of hair to start with, so it will take a great deal of falling-out-ness before I start to look so much as wispy, let alone Leonardo da Vinci, and yet I am not amused. Not at all. Sodding hormones. On the other hand, I’d rather be spear-bald than spend three weeks out of five in so much pain I can’t really function, so fuck it. I have hats.

Item – Wheat. I ate some. Within 24 hours my oesophagus was so swollen I was having trouble swallowing (and had to go retch a few times when I had not chewed obsessively 27 times before swallowing, as ‘stuck’ is a thing). This is an official food allergy thing, apparently. I also got gut ache and wind and mild runs (trots?). I decided I hate delicious yummy wheat with a passion. Not trying that again. Damn it all to hell.

Item – Trying again. We were waiting for the all clear from the Haematologists (many and varied). The consensus is I will have to be on low molecular weight heparin AND aspirin from conception to six weeks after end-of-pregnancy. Also, I will have to wear stockings on both legs, and will probably be a physical wreck throughout. Hurrah! But, I can try again if I like. So we will go see Riverside Clinic in January, and see what can be done about tucking Frosticle back in me. On the other hand, a fresh IVF cycle? Possibly a really bloody silly idea, as ovarian stimulation/hyperstimulation is in itself a damn fine way of triggering blood-clotting. We shall see. My current feeling is, if Frosticle doesn’t ‘work’, I am getting seven cats and a pet owl and a horse called Horse.

Item – To my fury, Third Haematologist went on about there being no genetic ’cause’ for my thrombophilia, therefore I didn’t technically ‘have’ a thrombophilia, and I rolled my eyes, and what I would like to say is, actually, I don’t have a currently recognised genetic cause that you can test for. I ABSOLUTELY FUCKING DO have a thrombophilia. You fucking idiot.

Item (secondary, diversionary) – I much preferred First Haematologist, who was sympathetic and sensible, and Second Haematologist, who was actually The Doctor slumming it while evading the Family of Blood or somesuch. (I am perfectly serious. He referred to ‘eight of your Earth weeks’ at one point and H got the giggles (yes yes yes, so did I)).

Item – Work. I am back at work full time. It’s fine. I’m coping. Leg is not being so much of an arse as it were to interfere with my day-to-day duties.

Item – Family. Oh my God I have had it up to here with my family. I will no doubt get back to you all on this.

Item – Counselling. My NHS-provided counsellor, who I see once a week, is lovely and wonderful and has made me realise I spend an inordinate amount of time beating the everlovin’ shit out of myself for everything and anything from untidy hair to being a vile antisocial Bitter McTwisted of Doom. If anyone spoke to a friend of mine the way I speak to myself I’d disembowel them. I am practicing being sweet to myself. It is weird and hard. Also, she keeps reminding me, my family’s hang-ups are theirs, not mine, and I don’t need to take them on board at all. Build Team May! If people are not on Team May, skip briskly away into the distance singing ‘la la la’!

Item – Marriage. H and I are not happy. H has dealt with the Summer of You Must Be Fucking Kidding Me, well, badly. I have also dealt with it badly, but H has taken the proverbial biscuit, bless him. Communication has gone to hell. I will let H tell you about it. That is my revenge upon him, ho ho ho. Hi, H! Stage is all yours! So!

Item – Couple-counselling. We tried to find a counsellor. We had an initial visit in which the man would NOT. STOP. TALKING. When I bought up the whole ‘children now seriously unlikely’ thing, he had to stop me there to tell me ‘I didn’t know that’. Which, actually, was the first red flag. A good counsellor does not tell you what you should and should not be thinking about this sort of stuff on the first visit and before he knows any of the medical history apart from ten mother-fucking miscarriages in a row, you absolute 24-carat gold clotheared dickwhistle. And then tried to slut-shame me when I said I had a higher libido than H and the lack of sex and more specifically communication about sex in our marriage was making me sad and angry, by explaining to me as if I was very stupid indeed that in normal marriages, it was normal for both spouses to lose interest and get ‘too’ used to each other. Well then, I’m abnormal, as I haven’t lost interest in H at all, as I just explained, and the issue is the lack of communication, not the lack of sex per se, so sod you very much. And then, he never turned up to our second appointment. He made his excuses the next day via the practice manager. His excuse was not per se stupid, but his not getting in touch himself to grovel just a bit? Was a great fat honking flashing neon sign saying ‘this man is Not The Counsellor For You, Also, Has No Fucking Manners Whatsoever’. So. Start again.

Item – I have a disgusting cold. So there’s that.

Item – Christmas. Every card I write, every Christmas decoration I hang (or get H to hang), every present I buy or plan I make, I drag kicking and screaming from a black, angry, pissy abyss of raging misery. Just so you know. The only thing keeping me going is a) H’s various concerts (it’s a good thing, being married to a musician) and b) the prospect of the Doctor Who Christmas Special.


Not enough tea in all the world

And why are you posting so infrequently, May?

Item – Work. I am still not back up to full-time hours, because I am still tired and weedy and prone to limping and getting all breathless and grumpy. It is so frustrating and miserifying I keep failing to notice that I am better, I am stronger, I can stand and walk citius, altius, fortius!

Item – And this week, I woke up on Monday with a splitting headache and sinuses bicycle-pumped full of rubber cement. I spent all yesterday at home feeling anxious and guilty (and headachey and ill). And then I spent today at home, knitting, and trying to talk myself out of feeling anxious and guilty (and headachey and ill). To my vast irritation, paracetamol doesn’t really work on the headache, but I can’t take NSAIDs because of the fragmin. (Oh, come now, May, you giant wuss, it’s not as if it’s a migraine. Yet).

Item – At the weekend, I went on an outing en famille in honour of my niece Minx’s birthday. Minx and her friends were fine. My mother and sister were… a little difficult to make plans with. And though they were very nice about it, they were clearly bewildered by the fact I did not want to walk back and forth and up and down and to and fro all day long. I was very tired (I have been sleeping so badly), and Mum was startled and concerned to see how very pale I was (it was Halloween. I don’t need no crummy make-up to do ghostly), and yet she was still surprised that I wanted quite a few sit-down breaks. Oh, for the love of…

Item – Ah, yes, the Sleeping Badly. I am the Queen of Insomnia at the moment. I. Do. Not. Sleep.

Item – Matters have not been helped by our landlord, who suddenly offering to raise the rent by holy-fucknuts percent. But, amusingly, not to do any of the numerous little repairs and restorations that the flat rather needs. We are very amused. For a few weeks there, we were also entertaining the jolly notion of a sudden desperate house-hunt over Christmas. H has been negotiating with The Law on his side, so things may be less drastic than that, in the end, now that I’ve already had the stress-induced apoplexy. Keeping in mind this all came on the heels of The Father’s Heart-Attack, The IVF, The Miscarriage, The Embolism, and The Threat of Redundancy.

Item – You know what? Fuck 2013. Fuck it exceedingly.

Item – I saw the NHS counsellor once, and she was very nice, and I am interested in seeing what happens next. She couldn’t see me the next week because reasons, but we have a regular Thursday thing scheduled starting this week. My only twitchery twitched because she wanted to refer me to her hospital’s miscarriage specialist (Which is all very well, but the NHS has so far done something between crap-all and fuck-dickery about my recurrent miscarriages beyond the mopping-up afterwards. They ran all the tests the NHS runs, and then fat-shamed me. It took private consultants to reveal the thrombophilia-despite-no-genetic-reason-for-it and the immune issues. I do not think there is anything this new NHS consultant can do even if he wanted to). There’s something about my current medical situation that is making people leap six feet in the air and run in four directions simultaneously trying to FIND THE ANSWER FIND THE ANSWER OH MY GOD THIS IS TOO WEIRD AND MUST BE MADE BETTER. It’s a very odd change from previous years’ ‘shit happens, you fatty McFatfat fatperson fatzilla. Eat lettuce only and keep trying’. I have cognitive dissonance. But I could do with people just calming their tits a minute and letting this be what it is: A shitstorm. All this constant THERE MUST BE AN ANSWER LET ME SOLVE YOU thing is uncomfortably denialist (it’s not a bad thing because we will solve it and solve it and then it won’t be bad so you can’t be sad because we will solve it!) and very uncomfortably victim-blamey (well, you just haven’t tried XYZ, have you? If you tried XYZ this wouldn’t’ve happened, would it? More fool you!) with a side-order of God-complex (I will save you, puny mortal! Here is my solution from on high! There! Now you are saved! I said now you are saved, damn it! Be saved by my Wisdom!).

Item – Two more weeks of fragmin injections. Then another ultrasound scan of my affected leg, and another visit to the haematologist, to discuss how matters stand, and if there’s any permanent damage and so on. And then, apart from the bastard son of a donkey’s rectum compression socks, the Saga Of Clotting will, let us all cross fingers, be over.

Item – I happened to go past the Riverside Clinic the other day. Our other embryo is frozen in there, waiting. I felt like Gerda seeing Kay trapped in the power of the Snow Queen, unable to rush in and thaw it back to rosy life with my tears. I wasn’t expecting to feel like that, but now that I do, how do I say no to a FET after Christmas? And how would I bear it if the Frosticle didn’t take, or worse, miscarried as well?


Hello, hi, well… um. Hi.

There comes a time when chunks of the brain just shut down in the face of Too Much To Process. There’s the part that is ordering you to grieve (‘Go on then, cry. Feel awful. Cry, damn you! You lost a baby, didn’t you?’) and the part that will not go there (‘But it feels awful! I don’t want to! And there are endless CSI reruns to watch instead!’), and the part that is still being struck amidships by the whole ‘and then I nearly died’ thing, and the part that has decided the whole business is ridiculous and we should just get three cats and an Alpha Romeo Spider, and the part that is nevertheless planning a FET in January.

And – how could I forget? – the part that was dealing with H’s looming redundancy, and thereby putting on a cheerful face of unconcern and trust in a)H’s general excellence and b) the benevolence of the future [Based on what, you absolute lunatic? -- Bitter McTwisted]. In the event, H was not made redundant. It was only when he came home at the end of last week announcing he was transferring departments merely, and not being slung out on his ear by Christmas, that I realised just how bloody anxious and, frankly, angry I’d been about the whole thing; and how ready I’d been to march in there and punch H’s various bosses in the collective groin for doing this to him all over again (we had a major redundancy scare a couple of years ago as well, you see).

Which was not helped by the part that has just been told that the rent is going up 20%. Which is all very well, as it hasn’t gone up for several years and the landlord just noticed that every other comparable property in the area costs many many lots. And not at all very well, as H’s pay has been frozen for the past five years and I earn somewhere between diddly and squat. (OK, yes, as a perk I get to be ill for two months solid and not get fired. So there’s that).

We may be moving house next year.

AAAIIIEEEEE.

So, yes, a lot of Being Very Anxious While Quietly Watching Far Too Much Daytime Television was going on.

And that is why I was not writing. I did not want to sit down and look any of it in the eye. For similar reasons, I was staying away from blogs. I did not want to read another word about loss, or pregnancy, or fertility treatments, or adorable children. It was all anxiety-inducing, good news or bad, happy or sad, reminding me of what I had been through and what I had lost alternately, and I decided that actually I was well within my rights to pull the metaphorical duvet over my head and pretend to be a Scotch Egg for as long as I cared to.

By anxiety-inducing, I don’t suppose I need to explain myself to anyone who has ever suffered badly from an anxiety disorder, but to the rest of you I need to say, no. Worse than that. Much worse. It’s like poisoned.

So. I am now bored of being a Scotch Egg. Hello!

And how am I? Let me count the ways:

Item – I went back to work on a part-time basis last week. It is exhausting. I spend a lot of time, by-and-large, being tired, what with the chronic pain issues and occasional bouts of anaemia, but this is something else. I used to be tired, but I could still trot up three flights of stairs or walk two miles across the centre of town without getting out of breath. Now? Nope. Can’t walk for ten minutes without my stupid DVT-affected leg beginning to ache. I go up three flights of stairs slowly, puffing ‘I… think… I… can… I… think… I… can…’. Work is not the problem – I am on ‘limited’ duties and therefore don’t have to do anything particularly strenuous just yet. Commuting is the problem. Commuting is a fetid pile of dingo’s kidneys.

Item – Speaking of chronic pain issues, let me tell you about my new best friend in the entire Universe: Cerazette. This is a progesterone-only pill which prevents ovulation as well as thinning the uterine lining. Some women don’t care for it at all, but, Gentle Readers, I love this pill. Yes, OK, I started spotting after two weeks, and then near the end of the first packet I started bleeding and carried on doing so for two weeks solid. But it was light bleeding. Bleeding containable with regular tampons. And there were, get this, there were no cramps. I was not in pain. Not. In. Pain. I am not in pain. Cute Ute is perfectly comfortable, my bowels are regular and cheerful, and Satsuma is quiet as a wee mousie. [Ticker-tape parade, marching bands, majorettes, and a 24-gun salute].

Item – Meanwhile, after six weeks, my haematologist lowered the dose of Fragmin (these is a kind of low-weight-molecular-Heparin) I am on. I will be spending six weeks on the lower dose, and then we will double-check the clot behind my left knee has gone, and then I can stop injecting myself every evening. My belly is covered in bruises. I thought for a while there I’d found a way to prevent the bruising (as soon as you remove the needle from your flesh, press down hard on the injection site for 30 seconds with your thumb. Do not rub) but it doesn’t always work, alas. And the worst bruises leave hard lumps under the skin which are showing no inclination to go away at all. Heigh ho, fuck and alas.

Item – I do not like my compression socks. They seem a tad loose in the ankle, and they are frankly gigantic in the foot (‘Oh, just tuck it under!’ said the twatwhistle nurse who fitted them for me. This being the same nurse who wanted to know when I was due, and when I, my eyes filling with tears,said I’d actually lost the baby in August, proceeded seamlessly into her ‘Losing Weight Is Good For You!’ perky lecture). The thing is, I have stocky peasant calves and dainty little princess ankles, and I am not a 70-year-old varicose-vein sufferer. Yet. So. Point of socks, to prevent me becoming a 70-year-old varicose-vein sufferer. Onwards.

Item – Mental state: very anxious, insomniac, and sad. I see a therapist on Thursday, courtesy of the NHS. Our local hospital has a counselling service attached to the gynaecology and obstetrics wards, and I ever so qualify for its attentions, according to my GP, who insisted on referring me. Given that my attempts to find a private counsellor ended in a big fat blank because the people I contacted never got back to me, I’m taking it. Not that that stopped the counsellor having to cancel on me once because of ‘bureaucracy’, but she had warned me she might have to, and then called at once to apologise profusely and have a bit of a chat right there and then just to see how I was. (Note to self: stop being polite and cheerful to counsellors. Not helpful).


Frozen over

Hello, Gentle Readers. How are you all? I’m a lot better. Really, much much better. My leg only aches now when I stand or walk for more than five or ten minutes. I even baked a cake today, standing to do all the whisking and mixing, without needing a sit-down in the middle (though I did need a sit-down once the stupid thing was in the oven (it – the cake – looks very untidy indeed. Mary Berry would be ashamed of me)). I am easily tired, but on the plus side, I sleep like I’ve been drugged, for eight to ten hours straight every night. As a life-long insomniac, this is a treat. Ish. When I’m not having complicated and unpleasant anxiety dreams.

As for my emotional state, I am frankly a bit weird at the moment. I am pretty calm, sanguine, cheerful even, if somewhat subdued and untalkative (what do you mean you’d noticed?). I – not consciously – won’t let myself think about miscarriages or trying again or almighty fucking huge pulmonary embolisms. I can feel my thoughts skittering across the surface, like ducks on a frozen pond. I talk about these things, as and when, in a matter-of-fact way with an upper lip stiffer than boiled leather. As evidenced above by the fucking annoying anxiety dreams, there is a whole deep quagmire of grief and fright and rage under there somewhere. No doubt I will thaw and Go Mental at some point. My GP thinks so, and is rather concerned I will try to go back to work too soon and Officially Lose My Shit. I don’t know. Do you know?

Anyway, we spent a few days with my mother, and we visited Hairy Farmers, and then there was the consultation with the Haematologist, and I need to tell you all about the WTF appointment with Dr George at Riverside. I will be back. Meanwhile, I leave you with bullet points:

  • My heart, according to the echocardiogram I had in the last post, is just fine. So yay!
  • I am now on Cerazette, with the approval of Dr George, Doc Tashless the GP, and the Haematologist. Because on blood thinners and not allowed Diclofenac, Menstruating Mays Are Very Very Very Unwelcome.
  • We are benched until Christmas at the earliest. We must make sure I won’t fucking die next time I get pregnant. To which end I gave the hospital another four vials of blood to test for… things. Like Lupus. And shit like that.
  • Holy shitwhistles, the bruising from the Fragmin. My belly looks, as I mentioned on Twitter, like a bowl of stewed prunes and not much custard.
  • My family are bloody mad (and there’s a post in that too!).

Indignity

I should never have remarked on the behaviour of Cute Ute the Despoiler. Last night, at about three in the bloody Goddamned morning, she woke me with ferocious cramps and a gush of blood and clots. Oh, hurrah.

I eventually woke the (exhausted, half-dead-with-stress) H while fumbling helplessly about for the co-codamol (I was in the wrong room altogether). H found the pills, fetched me a glass of water, and made me up a hot-water-bottle to ease the pain in my lower back, and I fell asleep with his hand resting comfortably on my shoulder. H did not fall asleep again, not for a while. I really need to stop doing that to him.

Anyway, I was rather better this morning (though we have ordered a great many more sanitary pads in our next supermarket delivery (we live in a big big city. We are spoilt)). So I wrestled my way into my anti-embolism compression socks and H took me for a little walk around the local park, where all the conveniently-placed benches are. My leg still hurts like a bastard’s bastard son-of-a-camel, so some of the sitdownathons were about me trying to get my leg up and cussing under my breath as my knee spasmed. I was also surprisingly (no. Not surprisingly. You have a pulmonary embolism, you dumb bitch) weak and out of breath. But H took my blood-pressure and pulse when we got home (he has had a machine for years for his own purposes) and my blood-pressure was ‘excellent’ and pulse only 90, which after the sitting-the-fuck-down somersaults of Tuesday and Wednesday we have decided is acceptable.

But, Gentle Readers, compression socks oh my horsey God. I have to wear these for two fucking years. Every day. All day. Compression socks. You know the devil-octopus socks they stick you in if you’re immobilised by surgery? More so. These are not prevention devices, they are medical devices to treat existing DVT. And by ‘eck, but they are devices. The Haematology Nurse warned me I wouldn’t be able to tolerate them right away when she first handed them to me on Wednesday, because of the emming-effing pain I was already in. I managed to get them on for a few hours yesterday, and my poor leg felt like a boa-constrictor was slowly squeezing it to mince. They’re not so bad today, but oh, the pressure. I am under such pressure. Ugh.

I am only grateful this pair are green, and not dead-leg-beige.

To do -

  • GP Monday, to say thank you for taking my whiny leg-cramps seriously, please can I have a spare pair or two of compression socks, and now I need a new improved sick-note for work.
  • Contact work. Explain. Holy crap on a cracker, explain.
  • WTF appointment with Dr George on Tuesday.
  • Make appointment with Riverside’s counsellors. Because sheesh.
  • Echocardiogram Wednesday.
  • Haematology consult on the 12th.
  • Have nervous breakdown.

The times when blogging is too much of an arse

Item – I had noro.

Item – I was angry and unhappy and sulky at the way things were going in the comments in the last two posts, and I didn’t (I still don’t) know how to respond.

Item – H has had a nasty, constant cough for four whole weeks now. We’re both sleep deprived.

Item – My period was late. Not, late as in a longer-than-28-day-cycle (my cycle is ALWAYS longer than 28 days), but proper real ‘your luteal phase is longer than usual’ late. Mine has been 11 days long for four cycles in a row. Before that, it was always 12 or 13 days long unless, and sometimes even if, I was pregnant. This month? It went 16 days. I had a nervous breakdown. Three negative pregnancy tests and brutal arrival of said period later, Occam’s razor dictates, given the near-total lack of marital congress round these parts (see Item 3, above), that, actually, I probably had the day of ovulation wrong, and my calculations were thrown by the fact I had noro and therefore a fever. Anyway, even so, my luteal phase was longer. This is good, I think. I think.

Item – I really did have a bit of a nervous break down. I spent three days begging and pleading with the indifferent universe not to be pregnant, because if I were, I’d absolutely certainly lose the baby, and I couldn’t take it, not again, ‘chemical pregnancy’ be fucked. The cognitive dissonance has torn all my protective scabs and callouses off.


Five stages of knowing an infertile person

You know the Kübler-Ross model of grief, don’t you? How a person who has lost someone or even something Hugely Important, could (or, if your psychologist (for psycholgist, substitute random acquaintance who reads Pop-Psych for fun, as appropriate) is a twatweasel, should) go through five stages on the way back to functioning in a new reality? Even Elizabeth Kübler-Ross agreed you needn’t go through all of them, or all of them in that order, or any of them only once (not that this stops said occasional twatweasel from mistaking a model for a road-map and getting all ‘you haven’t been in denial yet! You’re not allowed to be angry until next month!’ on you), but they tend to go Denial (this can’t be happening to me!), Anger (How dare this happen to me!), Bargaining (How can I make this not have happened to me?), Depression (I can’t bear that this has happened to me) and finally Acceptance (OK, that happened to me. And I’m still here).

I thought, though, it made an equally fine ‘model’ for how your (well, my, OK our (Christ on a cracker, what is it with me and parentheses today?)) friends and relations deal with The Presence of The Barren Among Them. Because we’ve all been startled, annoyed, hurt, and occasionally giggle-rama’d by said friends and relations and how they deal with us. Yes? Interested? Got your cocoa? Let me ramble forth in an expository manner forthwith.

Denial – Some of our friends and family (oh, let’s say FaF. Sooo much less typing) get stuck in Denial forever. ‘First stage’ my bottom. And denial is the one where the nicer ones say ‘it’ll be your turn next!’ and ‘I’m sure everything’s fine!’ and ‘It was just bad luck!’ and the infamous ‘Just relax! The nastier ones say ‘You’d better hurry up with that kid-making, you know. You’re not getting any younger,’ and ‘Worse things happen to people, you know. It’s not the end of the world’ and ‘Well, if you weren’t so bloody neurotic about it…’ and ‘Are you sure you and [spouse] are doing it right? Har har har.’ And everyone thinks you really do want to see eight million pictures of the family babies and hear blow-by-blow accounts of your cousin’s pregnancy and knit booties and are completely baffled when you try to tell them all this relentless baby-talk is, well, upsetting, especially after [insert personal horror here]. Denial, usually, fades after a year or two (or three, or if you’re my mother, six (and she still has outbreaks)), as it becomes totally fucking obvious to all except the most clueless hen-witted whistledick that THERE AIN’T NO BABY. Which leads to:-

Anger – Aaaaaaand we’ve all been victims of this, haven’t we? Anger and its best friend Blame. ‘Why won’t you go to Cousin SillySlut’s baby shower? You’re so selfish!’, and ‘Why won’t you give us grandchildren, you selfish person?’ and ‘Why can’t you just be happy for me? So what if my third child is due on the same day as the one you miscarried? So what if I announce twins at Thanksgiving just when you found out your second IVF also failed?’ And ‘It’s because you were such a slapper at college. It’s your comeuppance,’ and ‘Well, you must have done something to cause the miscarriage,’ and ‘I knew you shouldn’t try to have kids,’ and ‘You’d be a crap parent anyway,’ and ‘Well, we don’t really want you to come to Baby Flymo’s Christening because it’s only for parents…’ Of course, not all your FaFs will be such massive turds – at least, I pray not all your FaFs are such massive turds. But alas even the kindest of souls can suffer a sociopathic episode and say something monumentally crass and hurtful out of sheer flap-burble-nervous-mouth. My own mother once asked me if there was anything I could have done to stop a miscarriage. As if it wasn’t perfectly bloody obvious that had there been, I would have done it. And some FaFs genuinely mean to hurt. The situation, your grief, makes them acutely uncomfortable. Sadly, humans do lash out at whatever or whoever is making them acutely uncomfortable. And humans also hate the thought that Crap Happens To Good People. If they entertain said thought seriously, it means, OMG, that Crap could happen to them. And this is too scary to deal with, so they prefer to blame people for their misfortunes. And also lash out, because you and your misfortunes made them think, damn it, and it was really scary and they are so not doing it again so it must be your fault. Eheu.

Bargaining – Bargaining is the ‘why don’t you just adopt’ phase of FaF involvement. The ‘Why don’t you just do that in-vino-test-tube thing?’ stage. Come on, surely if you Do This Thing, the Bad Sad won’t happen, and then it’ll all be OK? Yes? OK? Please? No more sad? So why don’t you eat pineapple/go on vacation/try this doctor/do what [totally unrelated person with different health issues] did? Why won’t doing this simple thing help? Why won’t throwing money at the problem help? Please make this dreadful sad thing stop happening to you, to us, to the family? Here’s a fertility amulet and a cheque and a photocopied article from a magazine and eighteen amateur cod-diagnoses and a bottle of cough-syrup and a cruise brochure and your Granny’s nightie and a website on fostering and Jane-you-went-to-school-with has adopted Chinese twins and please please make this bad thing stop happening. It’s fucking infuriating for infertile peeps, this phase, mostly because your bargaining FaFs are so almighty fucking clueless and clearly don’t listen to a word you say, but, eh, they can’t listen right now. If they did, they’d have to deal with the fact there is eff-all they can do except listen. And nobody wants to feel that powerless. Certainly not us, and, yes, not them, either. Which leads to :-

Depression – This is considerably worse for the infertile person than for his or her FaFs. This is the stage when they give up. They stop asking you to family things. Friends stop calling, and tend not to answer your emails. They don’t want to talk about it, and pushing them can lead to outbreaks of Anger or Denial or Bargaining or, sometimes, in a magnificent display of missing the fucking point of who here is actually the one who needs thoughtfulness the most, all three in one short email. They don’t want to talk to you full-stop, because you might bring ‘it’ up, and they can’t talk about ‘it’, because they feel guilty and powerless and awkward and can’t deal with the fact Crap Happens To Good People and there’s nothing anyone can do. They’re pregnant again, and have no idea how to tell you, especially as they know you’d give your eye-teeth to be in their shoes and all they can think about is haemorrhoids, mortgages, and bloody buggering teething for the third time in four years, and they feel ashamed. Or they’ve never been pregnant in their lives but are happy as Larry that way and simply do not understand why you aren’t. And there it is, the widening pool of silence, loneliness, failure.

Acceptance – Ideally, a FaF would ‘get’ that it’s not about them. That you can be happy for them while being sad for you, and they too can be sad for you while being happy for them. That you won’t talk about ‘it’ incessantly. That you do need to talk about it sometimes and a good friend will listen, pass the kleenex, and pour more tea/whisky/cocoa/merlot. A good friend will know they’re not supposed to fix it, just to cheerlead. That they should respect your decisions and choices. That they should keep asking you to showers/Bris/birthdays, even if you say no half the time, because their love for you is about more than mere apposite social cohesion. A good FaF not in the trenches themselves would be aware that silence from you is a sign you are lonely and overwhelmed and not coping, and not comfort themselves with the lie that ‘oh, s/he’ll get in touch when they’re ready!’. Because they would realise that reaching out to people is hard, and reaching out to those whose lives are already full of babies and toddlers and school runs and milk-teeth is even harder, not least because you – we – have been socialised to Put Parents First. A FaF in acceptance would be able to say, simply, ‘I’m so sorry this has happened to you. I am listening. Have an eclair.’


Tales of woe

We have… well ‘news’ sounds far too exciting… ‘results’ sounds too hopeful… ‘a shit-storm of wtf, I told you sos and up yours NHS’ probably encapsulates it.

We are both in a bit of shell-shock I think. May doesn’t want to get angry again, so has asked me to step up to the mark and write a post although she has given me some of her draft rantings to draw on. Let me start by describing the context of our lives this stuff has landed… May reports:

“Work is stupid and full of stupid people and I don’t like it. I actually reported a colleague to their line-manager the other day, for being an incompetent fuck-wit whose work I was just about that sick of redoing for them (this is, of course, a situation that has been going on for over a year. Rage). I then spent hours sorting out a hideous mess of misfiling and laziness, and had to file another complaint about protocols being ignored. Then I found out I am The Subject Of Gossip in the tea-room, with camps dividing into those who are convinced I’m pregnant, and those who think I have cancer. Then a superior entity told me off for not doing something, and when I said plaintively that no one had told me about it, she pointed out she’d announced it at the meeting. The meeting I was off sick for, did she mean? Yes! Well, I was off sick, and she hadn’t circulated the minutes yet (two weeks later. Hmph). Nevertheless, I should have known, and I needed to go and do it, and bugger everything else in my in-tray, because I should have scheduled the time to do this thing I had no way of knowing I was supposed to be doing. Worst of all, I defended a colleague’s decision to a student, even though I was a bit uneasy about this at the time as I thought she was being ridiculously draconian. I double-checked today, and I realised she was not merely being a jobsworth but had actively screwed up and then not been honest with me in order to elicit my support. I so very much wish now I’d gone with my first instinct of cheerfully telling her not to be such a whistle-dick and to do as the student asked.”

While May is in a “work-induced state of advanced temper”, I, H the implacable, have also been pissed on from on high at work. The Big Project I have spent months working on, has been summarily shelved, and I have been presented with a whole new Big Project with entirely different software and parameters and skill-sets and told, basically, to lump it. Not only that, but show leadership for my team and be enthusiastic for this new Big Project and take charge (even though it’s being run outside of my control) and make sure it succeeds… It’s been a couple of weeks of mayhem and personal anguish as I started to see the project crumble around the edges as if on a cliff overhang, but powerless to stop it then plunge into the ravine.

Meanwhile, my counsellor has gone on holiday for a few weeks, just as I thought I was getting somewhere. May and I have therefore been needling and sulking and bitching and snapping and getting on each other’s tits in a rather distressing manner.

May puts it better than I ever could:

This is H and May, people! Star couple and all-around loved-up snuggle-bunnies of the decade! And I’m all ‘Take your Goddamn issues to the counsellor, because I am stressed to death here and I have no patience with you or anyone or anything!’ and H is all ‘You’re stressed? What am I, chopped liver? And, you may remember, the counsellor is on sodding holiday,’ and I’m all ‘cry me a river’ and he’s all ‘eat my shorts.’ Our sex-life is parlous. Funny that.

In which mood, I had to slink back to the wankatorium, so they could do DNA fragmentation test, with May in the back-ground wailing:

‘but we haven’t had sex for days! And now we can’t for days! I’m going to ovulate to spite you, so there’. Which helped. Even more so as we weren’t going to worry about conceiving until we’d got all our test results back and spoken to Dr Expensive again, so I am being so exceedingly rational and not in the least bit deranged-harpy-on-hormones.

I was shown to a different room this time and dared to hope that my in-laws wouldn’t be looking over my shoulder this time. Alas, while the picture was different it was definitely of the same area – I had the wherewithal to take a picture on my phone this time to show May – I think she was shocked how like their landscape of abode it was, but still laughed [Because I am a cow - May]. A new set of magazines to peruse – and with May not sitting in the waiting room upstairs I felt slightly more relaxed about having a look. It was going fine until I encountered two pages stuck together, which made me rapidly cast it all aside and go and wash my hands again and start from scratch.

I also managed to get an envelope of results so far from Dr Expensive’s clinic when I picked up my referral form… our blood was actually shipped off to Chicago for the testing (not sure what to put on the entry form for the ‘have you been to any part of the USA previously’ type question… ‘part of me has’ may get an interesting response), to whit (for reminders what these are see May’s details wot she wrote):

Item: No STDs (yay/*yawn*)

Item: TH1:TH2 intracellular cytokine ratios TNF-a 26.6 (good range 13.2 – 30.6) IFN-g 16.8 (good range 5.8 – 20.5) big tick next to the figures, so assume that’s OK. However, it’s at the high end and they have a tendency to increase, so would need to be monitored (expensive).

Item: DQ Alpha Genotype – May: 0201,0301; H: 0102,0201 – so we have a 25% chance of embryo looking like May’s DNA to her antibodies and therefore being confused for a possible unwanted cancer or something and attacked. This is probably quite common and shouldn’t be a problem in its own right, but this could also be a factor in other test results and also, as May said, causing increasing sensitivity issues.

Item: NK Assay (% Killed) Panel
These should be below 15%:
50:1:  14.6% – this is borderline, but it does come down with IVIG and ILs (see NK assay with Intralipid, below).
25:1:  8.8%
12.5:1:  4.5%
IgG conc 12.5 50:1:  8.1%
IgG conc 12.5 25:1:  8.0%
IgG conc 6.25 50:1:  11.3%
IgG conc 6.25 25:1:  8.1%

% CD3:  83.9% (should be between 60% and 85%)
% CD19:  7.1% (should be between 2% and 12%)
% CD56:  8.6% (ditto)
% of CD19+cells, CD5+:  14.1% * – this should be below 10%, so is starting to point to auto-immune issues *eye-rolls all round* May’s family is rife with auto-immune issues, so not surprising.

NK assay w/Intralipid:
50:1 w/Intralipid 1.5 mg/ml:  10.3% – someone drew a large arrow pointing at this number on the print-out. As you can see, intralipid treatment lowers the NK kill rate, which I think is a Good Thing?.
25:1: w/Intralipid 1.5 mg/ml:  5.4%

Item: Leukocyte Antibody Detection
Flowcytometry:  Negative
[T-cells] IgM+:  1.0%
[T-cells] IgG+:  17.2%
[B-cells] IgM+:  53.8%
[B-cells] IgG+:  19.0%

Here is the kicker – these should be above 30%, preferably above 50%. With so many low figures (although the first two are less important the most important is the last) it looks like the Leukocyte Immunization Therapy (LIT) will be order of the day, controversial and expensive we are.

So, in summary it looks like May and H are a little too familiar and friendly, our embryos are so loved and familiar they’re squished out of existence [We shall have to call the next embryo 'George' - May] and May’s system is getting more and more sensitive to the ‘tricksy’ little things. So I said:”Your immune system is just like you, argumentative and hot tempered.” To which May retorted: “Well, even your sperm are fucking passive aggressive!”

Conclusion: a microcosm of our relationship plays out in May’s uterus every month.

And then we laughed like drains, and I made cocktails.

Where does this leave us? Adrift at the moment, not really sure what to make of it all. My instinct, of course, is to run away. We’re still waiting for thyroid and DNA fragmentation before going back to see Dr Expensive. If you see two dazed people looking marooned, crestfallen, slightly bitter then approach carefully, they have been known to snarl.


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