on ivf and eating disorders

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i write this on the ‘other side’ of our first cycle of ivf. everything went well – far better than i had any right to hope for – but it still ended up with a negative pregnancy test last weekend and, after a slightly delay while all the progesterone worked its way out of my system, the appearance of my period yesterday. the constant and gruelling nature of ivf hasn’t really left much time for anything else recently. we’ll try again in a few months (probably) but it’s bloody hard. it’s bloody hard for anyone. it’s really bloody hard when you’ve got an eating disorder.

i feel that i should start by saying that i don’t think my eating disorder is the cause of our infertility. everything is as good as it can be with me and i responded very well to the various drugs. when we started trying to conceive (a long time ago now), i was probably the healthiest and happiest i’d been for a long time. the eating disorder was definitely in remission and my relationship was food was fairly uncomplicated; it continued that way for a good 18 months (the fact that it got more complicated again is nothing really to do with the infertility). lots of people who have/have had eating disorders conceive naturally. some people who have/have had eating disorders need some help. it’s the luck of the draw really. (i should also add that i’ve also only ever had relatively short periods of amenorrhea in the past too).

for someone with such a litany of mental health diagnoses to their name, i’m actually pretty laid back about the big things in life and so i didn’t feel like the ivf process, in itself, phased me much at the time. with the benefit of hindsight though, i can see that there were some elements that i really struggled with and which were directly related to the eating disorder.

for a start, ivf treatment is predicated on you (and by you, i mean the woman) being at a normal bmi. when you’re trying to get away from measuring your self worth by your bmi (and when a lot of eating disorder treatment is based on you falling to a certain bmi), this can be hard. some people may have happily been in recovery for years and suddenly find themselves needing to drop weight, often pretty quickly. for others, like me, it means putting on weight. i basically binged myself into a healthy bmi. it did not help my mental state at all.

once you cross that first hurdle of actually being eligible for ivf, you have to face the fact that lots of people are going to see you with very few clothes on. of course, they’re all medical professionals and they see hundreds of vaginas a day but that doesn’t change the fact that you have to wander round in a flimsy hospital gown or lie on your back, legs akimbo, with five or six people staring intently at your naked body. in some ways, i found this part the easiest to dealt with (partly because i was always a bit more worried about triggering my ptsd but mainly because quite a lot of the procedures require a (very) full bladder and i normally had to concentrate all my energy on not wetting myself). but the fact remains that i am far from happy with my body and far from happy about having people see it. (side note: i was also self-conscious because of scarring from self-harm but that was generally ignored by everyone much to my relief). added to this is the fact that the hormones and all the follicles that grow inside you often lead to bloating (and weight gain) and you have a recipe for feeling shit about yourself.

clearly, for the ivf to work, you need to be eating three meals a day and eating a relatively healthy diet (there are also some other dietary suggestions they make – like lots of protein and full fat milk – which i tried to follow as much as i could). on the whole, i managed to eat regularly because i was so worried that my failure to eat would be the reason that the cycle didn’t work. it was, it goes without saying, hard particularly as you are advised to limit exercise both before and after transfer.

what i struggled with the most though was that the regime of drugs i was on required that i eat at certain times. there were some drugs that i had to take with food in the morning, some which i had to take on an empty stomach (ie at least two hours after eating) and some which i couldn’t eat for at least an hour afterwards. i had to take those latter two drugs three times a day. there are simply not enough hours in the day. so i was having to desperately force myself to eat or not to eat at certain times and i spent all day consumed with the thoughts about when/what i would next be eating. controlling my food intake is so deeply ingrained as a coping mechanism (particularly in times of stress) that to have it controlled by something else was, frankly, unbearable and it was also somewhat unexpected.

if this had resulted in a positive pregnancy test, i’d probably have a very different view. it will surprise nobody (least of all my psychiatrist) that i’ve stopped eating very much since we found out that the cycle failed. i was only really embracing recovery (to the extent that i did) for the sake of a future pregnancy and although this is certainly not the end for us, it seems that much further away now. my eating disorder is absolutely loving it.

obviously though, i need to be at a healthy weight for another cycle and i can’t cope with the idea of not giving the embryos that we have in the freezer the best possible chance of life. but there’s part of me that’s terrified of doing it all again (possibly with the same outcome) and so losing weight seems to be the best option. and so, yet again, i feel like i’m stuck in the middle of a war zone.

i know that we are incredibly lucky to have access to ivf treatment and, in particular, that we ended up with a fair number of high quality embryos so the odds are in our favour.  i certainly don’t take it for granted at all. when/if we go again though, i can only hope that, in the end, it’s all worth it.

the world breaks every one and afterward many are strong at the broken places

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at one point last summer, i told my old therapist that i felt completely and utterly broken. from memory, he seemed to think that i was being a tad melodramatic which may well have been a fair assessment. i remember that feeling so acutely though; mainly because it’s almost exactly how i feel right now.

this morning i had an appointment at our fertility clinic for a couple of internal scans / procedures in preparation for our ivf cycle which will be kicking off in a couple of weeks. it was supposed to be relatively routine – no worse than a smear test i’d been assured – but due to a complication with my ‘flexible’ cervix (way tmi i’m sure) it was a lot more difficult and painful than anticipated. as nice as everyone was and as gentle as they tried to be, the whole experience was incredibly traumatic. i’m still struggling now and have spent most of the evening in tears.

in some ways, my feelings about infertility/ivf are not dissimilar to my feelings about the rape.  there are, clearly, areas where the two are intertwined (like the months where we haven’t even been able to try naturally because of my fear of flashbacks and intrusive thoughts) but, more than that, there’s a lot of guilt associated with both of them and the feeling that either – or both – are no more than i deserve. and then sometimes i think that the infertility must be my punishment for being raped.

both the rape and the infertility play neatly into the construction that i have built of myself; reinforcing the belief that i am fundamentally broken.

(when i was at university, i did a paper in my final year on tragedy throughout the ages going from the plays of ancient greece to beckett via shakespeare, racine and ibsen (amongst others). i think i might have taken the concept of hamartia slightly too much to heart.)

if you’d asked me a few months ago, i would have said that, with therapy, some time off work and a fair amount of medication, i’d managed to fix myself. but it turns out that the glue that was holding it all together was the anorexia. and without that, i’m broken again.

{title quotation from a farewell to arms by ernest hemingway}

sunday evening…the very time of all others…when the heart must be opened, and every thing told

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somewhere along the line, i’ve grown to hate sundays. sunday afternoons in particular. for reasons that i don’t quite understand, i find this by far and away the hardest time of the week; it’s often when the intrusive thoughts are at their strongest. i often end up hiding, retreating from the world and burrowing myself in the sanctuary of my bed.

today has been no different.

i’ve not been sleeping well recently. partly because i’ve stopped taking diazepam / olanzapine at night. but mainly because there’s just a lot going on at the moment. work is busy and stressful; last week involved some late nights and early starts. the ivf process kicks off this week with a dummy transfer on tuesday morning to check that everything will go smoothly for the real thing. at the end of the week, all being well, i’ll start on the pill for 10 days or so to regulate my cycle. i’ve had a welcome break this week from re-living the rape in therapy but it’s always there. and then there is still absolutely no respite from the constant and exhausting battle against the eating disorder voices. it’s so bloody noisy in my head right now.

despite all of that, i actually had a couple of good days this week. i managed three meals without any restricting or bingeing. and then. as ever, i self-destructed. not spectacularly, particularly in comparison to recent weeks, but it was enough. i was, perhaps, slightly ambitious in inviting some friends for afternoon tea yesterday. the combination of anxiety about eating and being surrounded by food left me drained by the end of the day. and more conscious than ever of how much this eating disorder is still controlling every aspect of my life despite things appearing, on the surface at least, to be much improved.

i woke up early this morning, bruised and fragile. i felt defeated before the day had even begun and certain that i wouldn’t be able to resist the lure of a day of restriction. but a run helped a little, despite the rain and the hills that i forced myself up. an appointment with my lovely nutritionist also helped, at least enough that i was able to manage some lunch when i got home.

one thing that we talked about today was the importance of preparation; anticipating the bad times and having a strategy in place to survive them. and so, it’s been a deliberate strategy this afternoon of curling up on the sofa and distracting myself with a trashy thriller. so far, it seems to be working.

{title quotation from mansfield park by jane austen}

stirring dull roots with spring rain

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on friday, my psychiatrist and i agreed some rules for april. unless i make what he described as significant progress by the start of may, he will suggest that we take a break from treatment and i consider my options. for the last few months, i’ve been stuck in a sort of half-recovery, doing just enough to avoid getting into serious trouble but not really trying as hard as i know that i need to.

the rules are simple. don’t lose any weight. three solid meals a day, totalling at least 1,200 calories. reducing the bingeing that has crept in to twice a week, max. no purging behaviours. basically all the stuff that ‘normal’ people do (except maybe the bingeing).

april needs to be the month that i crack this. partly because being kicked out of treatment (even if it’s done in the nicest possible way) will be (yet another) way in which i’ve failed but primarily because we’re hoping to start ivf this month. my missing period turned up over the weekend so i need to call our clinic tomorrow morning to get the ball rolling; a prospect which is both more terrifying and more exciting than i can put into words.

sadly, yesterday – the 1st april – wasn’t much of a success. it was perhaps slightly ambitious to try and stick to the agreed rules and host easter lunch for my in-laws at the same time. at the moment, any kind of social occasion – even one in my own home which i am firmly in charge of – generates a huge amount of anxiety which generally translates into all the behaviours that i’m not supposed to be engaging in.

it astonishes me that we’re in april already. the year is slipping past, lost in a blur of bingeing and restricting and purging. i don’t want to go on like this. today is going to be a better day. it has to be a better day.

{title quotation from the wasteland by t.s.eliot}

the beginning is always today (part ii)

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a couple of years ago, i decided to cultivate a little garden on our balcony. this turned out to be much more challenging than expected. we didn’t get much more than seven raspberries (which i turned into donuts, obviously). my mother-in-law made some valiant efforts to help but for the last couple of years, it’s been pretty barren out there bar a rosemary plant which i was assured was indestructible but which i’ve been doing a pretty good job of slowly torturing to death.

yesterday seemed like a pretty good day to get back out there and plant some things.

my best friend texted a couple of days ago to ask how my week had been. it’s been hard, i said, but they’re all hard. and they really are at the moment. for every few moments where i feel like i might actually beat this, there are hours of despair, self-loathing and shame.

this week has been even more up and down than usual (as evidenced by the fact that the number on the scales has been ricocheting around). we had an appointment at our fertility clinic and got the go-ahead to start ivf when my period arrives. which is great except my period is currently awol. my doctor thinks that the stress of the last couple of months and the extreme cycles of bingeing/purging/restricting have caused it to disappear. i need to get it back asap. for a little while, focussing on the needing to eat healthily for a potential baby give me some much needed motivation but i soon (ie within a day) slipped back into my old habits. this led to a difficult – but ultimately beneficial – session with my psychiatrist who put some firm ground rules in place as to what i need to do in order to continue with treatment otherwise he’ll discharge me. surprise surprise, i’m a perfectionist who likes structure and rules so i’m actually grateful to him for being ‘mean to me’ (his words, not mine).

there have been many new beginnings. i can’t tell you how many times in the last couple of months there has been a day 1 (after the official day 1) or an email from my therapist that ends with some form of ‘don’t worry, tomorrow is a new day’. but it does sort of feel that something has started to change over the last few days.

i was going to blog yesterday about how it was a fresh start and i was really committed to doing what i need to do (three meals a day, no restricting, no bingeing and definitely no purging) and everything was going to be different this time. but i decided not to because i wanted to see if i could actually do it or if it was yet another false start.

but i did it (just about).

for the first time in a long time, i did have three meals. and although i had a bit more chocolate after dinner than i probably should, i shared it with my husband (rather than bingeing in secret). every minute of the day was hard and i really had to fight for it but i managed it.

and then, i had a really good appointment with a nutritionist today. her enthusiasm and positivity was inspiring. for so long, i’ve been stuck in the past, re-living the night that everything changed. the idea of a future – and a happy one at that – has seemed so far away that it’s not something i’ve ever even been able to contemplate. but it feels a tiny bit closer this afternoon. i know this feeling won’t last forever and my capacity to self-destruct will kick in sooner or later but i need to believe that i can and will feel it again and every time that i do, i get a little bit stronger.

{title quotation attributed to mary shelley}

the shared meal elevates eating…from mere animal biology to an act of culture

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yesterday i ate a meal in public for this first time this year. a little under two months without eating in a restaurant or coffee shop or pub probably isn’t that big a deal in the grand scheme of things – i’m aware that plenty of people eat out far less than that and are perfectly happy with it – but it feels like a lifetime to me.

my psychiatrist asked me last week to make a list of the things that anorexia has given me and the things that it has taken away from me. the latter list is, of course, so much longer and i still have enough insight to appreciate that even the things that i think anorexia has given me (a sense of control, better regulation of my emotions, reduction in ptsd symptoms etc) are all an illusion really.

my eating disorder has taken, and is taking, so much away from me. the first and foremost is obviously starting ivf but, beyond that, it has insidiously seeped into every aspect of my day-to-day life, even if i don’t always realise it. one of the most sobering things that my psychiatrist said to me this week was actually something said in passing – that he’d have to swap rooms for my appointment with him next week because his usual room is right at the top of a tall victorian building just off harley street without a lift and he didn’t want me walking up that many stairs. someone telling me that i’m too ill to climb up four flights of stairs? that hit home like nothing else has. (even if i do think it’s a complete overreaction, not least as i live in a third floor flat and still always take the stairs.)

clearly, anorexia is also having a huge impact on my social life and all of my relationships. i’ve had to come up with an increasingly elaborate series of excuses as to why i can’t go somewhere or, if i do, why i have to leave early and/or not eat or drink. it’s exhausting. so much of what i use to enjoy resolved around eating and drinking with my husband or family or friends and that part of my life just feels so alien to me right now. eating solo is all well and good but very little can beat that magic of sharing a meal with people that i love.

and so, when my mother suggested that we meet up on saturday morning for a spot of shopping and some lunch, my initial reaction was to decline and cite some mythical prior commitment. but i need to start challenging myself and pushing myself and gaining weight otherwise everything else is pointless. so i booked a table at one of my favourite places to eat, studied the menu online for far longer than is normal and decided that i was going to fight for it. and i did.

i got there early and ordered a blood orange tea (i’m not really a tea drinker but i was bloody freezing). when my mum arrived, we ordered our food and i allowed the conversation to distract me enough to eat most of the delicious shakshuka that i ordered. and nothing bad happened. my parents don’t actually know about the anorexia diagnosis although clearly they can see that i’ve lost a lot of weight. my mother twice made reference to anorexia in different contexts (once in relation to a friend of hers, once in relation to bone density…we really know how to have interesting brunch conversations) and part of me wonders if she was trying to give me an opening to admit it to her. if she was, i didn’t take it. i don’t know if i’ll ever be ready to tell her.

what we did discuss openly though was our plans for ivf (i made a couple of excuses as to why we haven’t started yet) and she, very generously, said that she and my dad would like to contribute to the costs once we get there. this was so overwhelmingly kind of them and i don’t think i’ll ever be able to thank them enough for easing the financial burden of treatment. what it does mean though is that i really do need to get better. the only thing standing in the way of our dreams now is my anorexia and i can’t have that any longer.

{title quotation from in defense of food: an eater’s manifesto by michael pollan}

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the solid foundation on which i rebuilt my life

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last night, as we were getting ready for bed, my husband said in passing that we needed to work out our schedule for the year. this was partly prompted by a discussion we’d had earlier that day with my parents about a potential trip to new york in may but he wasn’t really talking about holidays or work or our boring plans to remortgage. he was talking about ivf.

we’ve been trying to conceive for over two years now, starting almost as soon as we got married. we have nothing to show for it; not even a hint of a positive test in that time. we’ve had all the tests and everything looks fine. all they can tell us is that we have ‘unexplained’ infertility.

i know for some people, infertility is incredibly hard. i have an amazing group of friends who are all at various stages of their infertility journeys and the physical, mental and emotional impact cannot be understated. my husband and i are fairly pragmatic about it on the whole. clearly, i’d rather be running around after a toddler right now rather than anticipating having a whole lot of medical equipment shoved in places where i’d prefer it not to go but it is what it is.

we first started talking about ivf this time last year after a year of trying unsuccessfully. we decided not to rush into anything as there was nothing wrong and my results were all very positive (it looks like i’ll be having periods for years and years. great). and then i developed ptsd and couldn’t even contemplate the idea of ivf. a few months ago – on our wedding anniversary actually – we decided that we were now in a position to start the process in january this year. and then, as the ptsd got better, i stopped eating.

now, i don’t meet the bmi criteria for ivf (although my husband doesn’t know this) and it’s a bit hit and miss as to whether i’ll actually have a normal cycle anytime soon. more than that though, i’m not eating enough to sustain myself and it would be idiotic (and a huge waste of money) to try ivf at the moment.

this afternoon i created a spreadsheet (of course) to work out various milestones if we started ivf in march. the estimated due date (if it were to work which is so far from a certainty that i didn’t even want to work this out at first) would be 12 january 2019. so i have to recover because i really want that baby.

but i’m so worried that it’s going to be too hard and i’m not up to the fight.

{title quotation from very good lives: the fringe benefits of failure and the importance of imagination by j.k. rowling}