Wednesday, October 19

chronic milk making

While I was pregnant, women who had raised babies themselves, and knew how under powered I was at the best of times, they must have felt a serious twinge of fear on my behalf. I remember clearly conversations which went like this,

“And don’t feel bad if you can’t breastfeed, because your health is more important. It’s ok to give formula. And colostrum {milk with extra super powers in the first couple of days} is amazing all by itself, even if you do a couple of days that will be great. ”

And I would say, with my lips, “Yeah, I will let that go if I’m really not well. I won’t beat myself up.”

But my heart was not in sync with my lips. Not remotely. I didn’t want to sound like the na├»ve new mum I was, spurting forth her untried opinions, so I kept my opinion to myself. But my opinion was that I would rather give her the best immune start to life and suffer myself for a year. Breastfeeding cannot prevent a baby from getting a chronic illness, but it’s the first gift of health I could bestow on her, and there has never been a gift I’ve wanted to give more because I’ve never loved a girl more.
I knew that even my well mum had been run down and needed daily sleeps whilst sustaining another life with her milk, so while determined, I was not expecting an easy ride.

A couple of weeks before she was born I started to express colostrum drop by drop, on the advice of my private midwife, because I might be away from her for the first hours, and because it’s a powerfully healthy thing for a newborn. I arrived at the hospital on the day of her birth with ten filled syringes to be put in the fridge, to the surprise of the staff who don’t usually see or encourage women to do this prenatally. I thought my hours of work and patience extracting each milliliter might last a while – so I was partly horrified and partly chuffed when I heard the doctor had given her all ten syringes at once, as soon as she arrived in Special Care. I had been her first medicine, even though I was still lying on the operating table, and that was worth it.

I was extremely blessed to have good supply, but I soon had to call upon my iron determination to feed because after a few weeks of decent times, things got bad and stayed bad for about four months.

In medical speak, I had recurrent white spot (sounds cute, feels like hell), recurrent infections (this should not have surprised me, infections are my specialty), vasospasm on one side, mastitis, and regular blocked ducts.

Four months feels more like four years when you’re breastfeeding, because young babies feed around the clock. So frequently that the scabs would just dry out a bit from the last feed, enough to make the next milk extraction excruciating, but not even close to healing. Then I would feed, the scab would be re-opened, and the cycle repeated. It was like being cut open with a knife regularly without anesthetic, day and night.  I had to majorly psyche myself up before her feeds, really prepare myself. I tried everything to ease the pain; every preparatory step before bringing her to drink - but from the moment of latch, I would frantically pound the floor with my foot and moan. I would try to breathe, but it was more effective to beat and groan, to try and stifle the murderous sensation with other sensations.

Ben wanted to be with me in the pain, he wanted to comfort me. But I was in a fiery hell of sensation, and would have been borderline violent if he tried to put a comforting arm around me. Maybe not even borderline.

I would say through gritted teeth after preparing myself to feed her,

"Ok. I'm about to do it. I'm getting ready. Can you just sit in that chair over there. And pray. And don't talk to me!"

And he would sit there silently, and watch me cry and groan. I needed him there rather than pottering around painlessly in the kitchen. I needed to know that he was sharing in my pain as I fed our girl, even though he couldn't take an ounce of it away. 

Sometimes I would express milk instead because I needed to let more healing occur and I emotionally could not handle another strong suck. But as she grew older I couldn't express enough for her whole feed and had to supplement it with my freezer supply, and it wasn't an effective emptying method so I would soon get blocked ducts and be forced back to letting her latch. 

One day a nurse taking my swab told me that she doubted I would be able to heal while continuing to breastfeed. This woman who was not a feeding expert and ought not to have shared her personal opinion, she preyed upon my greatest fear. 

I went home and talked to my Mum. My own mum had been damaged, and kept feeding, and healed. Then I talked to my friend, who had healed while still breastfeeding. Next my Lactation Consultant, who said that every person she knew who really really persevered had gotten through. And Ben, he was going to sit quietly in that armchair, and not make a sound.

I could not see for the life of me how healing could occur while each feed undid the scabbing. It seemed impossible to me. So I left that hope and belief to people who had been there themselves, and set to work on the only path possible for discomfort. 

Right now, present moment.

I focussed on getting through one feed, however bad. 

Then celebrating. Walking around the house feeling the light delicious emotion of relief. 

One hour later, relief giving way to dread. 'Can't go through that again,' circling in my head. 

Baby crying, obligation reigning, going to that awful place again. 

And that was how it passed. It wasn't a calm, breathing, full of hope affair. There was no bonding with her, no staring into her blue eyes with a smile. I was channeling psycho, moaning, arm flapping, mega-tense mother to her while she drank. I was gritting my teeth and only half believing that deeply ingrained phrase that the only way out was through.

Through I went, as Ben quietly watched and acknowledged and other people voiced the hope I couldn't feel. I couldn't write about it because I was submerged.

Concurrently, vertigo had entered my life at two weeks post partum. Vertigo took from me one of the senses I had most taken for granted, and assaulted my will to live. I didn’t even know that looking out the window and seeing a stable picture was one of my favourite things till it was gone. I didn’t realise that lying in bed with your eyes closed and feeling completely still, that is of the life’s greatest luxuries. Life was simply undesirable when there was no peace; a constant moving haziness which made me feel ungrounded and woebegone. 

At the time we didn’t know if vertigo was due to breastfeeding, or being up in the night. I assumed it was both, a muddy combination of two things that my body detested.

Occassionally I wondered if I weaned, would my nemesis vertigo leave? And would that be a wise decision, to be a more well person, wife and other? If someone could have promised me that weaning would take the vertigo away, I may have weaned. But because I didn’t know, I did not want to wean and receive the rude shock that I still had vertigo, and my milk (and baby whispering powers) had dried up.

After four or five months, feeding became pain free. It happened gradually. At first there would be a day with no infection, no white spot, no blocked ducts, and then after the next bout of trou I’d get a longer pain-free stint. It happened just as I had stoically and tragically realised that I might have to feed in agony for a whole year. I had lost hope that my pains could ever be ephemeral. I knew few women who had experienced problems for so many months, so I assumed I was stuck in this forever. I thought darkly that it was classic me to have a plethora of issues and chronic pain. I also avoided talking widely about my issues because I didn’t enjoy being told that it was ok to give up – I wanted to be encouraged to persevere.

Now the vertigo is like the tide going out at the beach. A lot of the time it is receding, but sometimes a wave lands high on the shore and I wonder whether the tide is actually going out after all.
It is always precipitated by extra use of energy, or sickness, or the baby waking frequently at night.

I still breastfeed regularly during the day, and once or twice at night – similar to the early days, and so I can finally say for sure that breastfeeding was not the single reason for the vertigo. It can’t have been soley night waking either, because I have not slept through the night for twelve months straight, yet the vertigo continues to ebb away.

I imagine it was many ingredients all smooshed into one eruptive mound: being up for long periods at night, producing so much extra milk initially, recovering from major surgery, the immense energy given to adjusting to a completely new life of work, and my body restoring itself after carrying a baby. 

The fight to feed has been rewarded many times over, with this ability which makes mothering easier for me as an unwell person. I continue to be in remission from POTS, a result of pregnancy and breastfeeding; I take hot baths without fainting and stand without blacking out.

I groggily feed her whilst still lying down myself for two minutes in the night, and she falls back asleep. I leave the house with nothing in my bag for her. I calm her tears and she pops off with a happy smile on her face. I read how good this milk is for her, I read that I receive an oxytocin hit every time I feed her. I hear people talk about how it’s odd to feed a baby who can walk or talk, and again I quietly hold my opinion inside. I fought to give her milk and I’m not about to fight to end her enjoyment of it. If she can verbalise how much she loves it, all the better. For now I am perfectly content with the spontaneous claps she gave me last week as she drank. 

Wednesday, September 21


I have a tumultuous relationship with my mind. It's a beautiful and terrible place, one I know a little better for not having had as much external stimulation in recent years. My knowledge of it has alerted me to the fact that it could do with a little cultivating.

I am prone to wandering thoughts, epic social post-mortems, shallow breathing, fear of sitting in physical discomfort, worries about how I can't keep going, and a desire to flit between distracting medias to avoid reality, which makes me less content and more terrified of existing fully in the gift of the current moment.

Several medics have encouraged me to explore the concept of mindfulness, and just after the latest encouragement, a friend alerted me to an online, free, six week course through Monash University. I have begun it, and it's bite sized and very encouraging.

You can still join now, and exercise your mind:

Thursday, September 1

going out when you're homebound

I did it again, a house leaving excursion which didn’t go extremely well. The last couple of months there have been very few excursions and a 100% didn’t-go-very-well rate. But things seem almost possible in pajamas whilst lying on the couch, and I decided to make a trip to pathology collection, lured by sleep. I’m really quite straight forward when it comes to motivations; my mind is trained on my next sleep, and my next eat. I knew Mum could drive me in the afternoon, but if I went by myself in the morning then I could rest aaaall afternoon and potentially not be some kind of aching grey puddle in the awful hour that is waiting for Ben to get home from work. The golden rule of being Marigold’s mother: Do not use up energy late in the day or you might run out before parent no. 2 arrives home.

If you’re feeling dizzy while changing nappies and putting on proper clothes you shouldn’t hop in the car. I know this. But I wanted a peaceful afternoon, so I wobbled on. And it feels so momentous to go out when you’re not used to it, the world feels very big and interesting after a small house.

In the car my right eye was swelling with uncomfortable tears. I am one of those people who gets colds in their eyes, and my eyes weep at their own sweet leisure through the day making me appear excessively emotional. I could vividly imagine them starting to run the second the needle went in, and assuring the nurse that I was not crying from the sting. Smarting eye, dizzy vision, cars and trees swooping by...regret was taking hold as I prayed through my short and dangerous drive.

There was a decent wait before it was my turn. Enough time to really thoroughly crumple. I usually make it my mission to avoid hunching and crossing my legs and conducting myself in a terribly gauche manner. But there I sat on one half of the ample chair, arms folded in on myself, wearing a grey top, eyes smarting, slumped over. Aware, but not correcting myself.

My mind began to race, about how to make it home – can’t get a taxi home with a baby car seat...this was unwise, I’m stranded...could Ben take me home in his lunch break, but that’s not fair because he’s been off work for me all week...but miracles happen all the time, I might be ok.

I eat a banana, get a glass of water. Neither seems to revive me.

It’s my turn, and the nurse and I smile at each other and acknowledge that we have met before. Many times, if we're honest. I prefer being pricked by her to anyone else. I remember that when I was pregnant and throwing up here there and everywhere, she stashed a few vomit bags in my tote because she knew I'd appreciate them. 

The paper work takes a long time, maybe because I’m getting genetic testing, and I try to bolster my baby’s patience with all kinds of handbag treasures. I’d saved the car keys till last, my piece de resistance, but they don’t seem jangly or spiky enough for her today.

“Did you fast for these?” She asks, forebodingly.

“No, I didn’t. The slip said non-fasting,” I reply.

“Ah yes. It does. I’m afraid one of the tests does need to be fasted for...”


I’m so overwhelmingly drained, I’ve given so much to get my bloods done. In another life, I would have covered my dismay and said, oh that’s fine, never mind, I’ll come back another day. But I’m too tired, of being sick and being impeccably charming. I don’t hide it.

“Oh. Really. That’s a real shame. Because I’m not very well, and it’s going to be hard to get back here. And I also don’t know how I’ll go fasting because I need to eat through the night to sleep. I think I’ll have to get someone to drive me in another day.”

“Well, we could take them anyway, when did you last eat?”

“A minute ago. No, let’s not muddy the results.” I say

“You know what; I live just one suburb across from you. I could drive past your house on my way to work tomorrow morning and take them for you?”

I’m stunned by her kindness. I know this is an out of the blue offer, not a service offered by the practice. I know she is just being the kindest nurse in the world. I tell her how much it means, but that I couldn’t let her do that. We agree that we will take most of the tests today, and I’ll take the other one next week, on Ben’s day off. She says if I fast from 2am, it should be ok.

My eyes don’t weep during our appointment. I leave the practice. Her kindness upped my energy in a good way, it gave me just the right amount to get myself safely, if a little precariously home to my couch.

The gift of health is more absent than ever, but in its absence is an ever growing pile of radical kindnesses, spiritual epiphanies, and sweet unfoldings, which seem acutely precious.

Tuesday, August 16

essence of sad

Have you been so sick for so many years, that you lack the will to go on?
They say health is the most important thing, cheerfully they pronounce it, to inspire their gratefulness, 
to wash away their great unhappiness.
But you don't have health. 
You don't have well. 
They say friends too, they are better than career you know. 
Career, it went, but friends you have. 
You have friends you rarely see,
friends you hold on to, but always fob off. 
You love them from your couch, but it isnt enough.
You don't cook for them, ever, and you're always writing to say 
'less than an hour, but I love you ok'. 
I'd love you better if I could. 
My mind loves you. I swear. 
They say happiness inside, that's up there too. 
Peace for the ride.
And you have that one. But with essense of sad.
You want it unconditionally. 
In the sore, crawling, lonely, drought.
But it morphed into sad, behind your back, so now you feel bad. 
That you're sad. 
Sick bad, and then guilt bad. 
And lonely bad, and too-long bad,
And hermit, outcast, worthless, cold,
too-much, and can't-go-on bad. 
Till the sun pops out. 
It kisses you and hugs you and shouts:
It's a beautiful day to be alive.
You have alive! 
And alive is meant to be here,
and meant to be here is purpose,
and purpose is go on. 

Thursday, August 11

hi struggler, have you tried...?

It's been over 300 days now since I gave birth, or kind of gave permission to have my stomach cut open. I said, "I can't read all that stuff about dying or never walking again, so I consent but I'm not looking at what I'm consenting to," and signed a blotchy left handed signature, a Freudian smudge, thinking to myself, I probably will die of panic, or feel the surgery and then die, and I hate this idea and being an adult even though I simultaneously love that my body grew a baby, and I bet she's not even as sick as you think, I bet she's perfect, and I really hope we both live.  

And we both lived. We have lived strugglingly and lovingly ever after. 

I'm accustomed to struggles, as are most humans. There have been a couple of uncanny similarities between chronic illnesses and the more woeful parts of parenting, which sounds like a miserable thing to say, but it has happily made the whole experience almost familiar. 

I went to an opshop after not sleeping through the night for nine long months, and having chronic fatigue and another illness, and the man at the counter said perkily, "You look well rested!" I fumbled for a reply, but I was so absolutely unrested I could not think of one. Awkwardly I murmmed something about resting during the day. To which I'm sure he thought, see, these housewives just sleep all day, no wonder they're well rested. I have a feeling he either isn't parent, had a unicorn baby who slept in a cot and through the night before it walked {please may this happen to us, there's still time, please}, or snored through his offspring's night time howls for comfort. Or maybe he suspected it had been a while since I'd received a 'fresh as a daisy' type of comment, so he took it upon himself to deliver it. 

Whatever the case. Have you seen me lately?! Probably not, because I'm too tired to leave the house. But the dark moons under my eyes, they take pleasure in shocking me when I pass mirrors. If you looked up my Google searches which you must never ever do because you will think I am unfit to be an adult (I never wanted to be one anyway) you would find ,"how to make eye shadows go away?" written all different ways to get the best search results possible. They said: Get more sleep. I closed the tabs. They have no idea, they have not met my child. They said: Wear make up. That's not 'away'. That's hidden under paint, and I don't like that when I take paint off I feel more fugly. They said: Wear cucumber circles. I don't think we even have cucumber because I'm too sick to go to the shops and Ben doesn't buy them because they're not carby enough for me, and I don't lounge round in a bathrobe with slimy disks over my eyes because that's not keeping half an eye on my charge. I didn't find one single thing that would help, not one glimmer of hope. And then I started finding white hairs, aged twenty five almost twenty six.

Google, Google, on my phone: how come my hairs are already snow white?!?! 

Google said, genetics. I said, sleep deprivation too.
Anyway, I am not well rested. I used to feel unwell after sleeping from 9.30 pm till 8.30 am only waking to coldy inform my bedmate that he was snoring, but now I'm lucky to get till 12.30am in one stint. So, I feel tired-dead-tired-dead, as I expected to. Tired isn't a good enough word. Wasted. Or my favourite for this year: Haggard.

Humans have been trying to make other people's lives better since the first suffering. I have a serious case of it, though I'm trying to reform. It's a way of loving, it can also be a way of irritating. Early on, just after my diagnosis, people who had never had this illness used to say 'have you tried this expensive treatment and this almost extinct herb and this quack of a doctor and this unlikely and exorbitant retreat you can't afford because you're on the pension and this mental health book and this YouTube video, because I think it will cure you?' Every second day. I tried so many things I can't remember them; things which seemed affordable or scientific or whatever. Mostly I only tried the advice of actual sickies, because the other people had read something about my illness for one minute, and myself and my friends had been reading  for years. 

And then came along my baby, who doesn't sleep if she isn't touching me or Ben {slash using us as her mattress}, and 'doesn't sleep through' which is code for 'normal non-unicorn baby'. You know when you accidentally let slip that life is hard? Help arrives! So fast you're not even sure if you asked for it! Usually, a vast array of suggestions you've already dismissed. There was a flood of kindliness in the form of, "have you tried warming her bed up, or rocking like this, patting like so, going to a sleep clinic where you won't sleep for five nights and will consequently end up in hospital with vertigo again, or making her cry till she gags and then gives up because she knows you're never coming back?" And "Have you tried solids, solids, solids?" And "Oh, she doesn't like solids? Mine does. But, I love my food!" Ah. Well that solves the solids question. I only eat with gusto seven times a day.
All the comments were relevant to different kinds of mini human beings, but not the kind I have. And amidst all the kindly comments came this one,
"You guys are troopers. These sensitive koala babies are really hard work, and you're doing so good. You'll get through one night at a time. " 
No advice.
Even though she was the best poised to give it because she's mothered one just like mine. There were also people at church who made us dinners, and said, we struggle too, we have no advice, how can we help. 
As it is with the sick ones. They don't hand out advice, because they know that of course you've tried, and you will ask. Or that you have no choice but to endure, and you merely need a kind word.

They're strangely familiar, these fresh struggles. We have met before.
 An issue not easily resolved. Plodding on, sometimes hopefully and peacefully, and sometimes with bitter lead in my veins. There's always the poignant symptom I am well acquainted with: the struggle to feel untainted happiness for the ones who have what I don't.
It bears the hallmarks of my longing to be well, and my friend's longing for a partner, and my other friend's longing for a child.
This year it just hit. Deja vu. It's all the same, when you simmer away the specifics.
We're all the same.
We've all just weary and in need of a kind word. A really kind word.

Wednesday, June 29

if you want to understand me, voila.

Many thanks to fellow CFS sufferer Jessica for making an extremely accurate infographic of my life. 
Our lives. 
 And thanks to my fellow spoonie Lauren for sharing it with me.