on vertigo and not socialising

I’ve never been blasé about the merits of being able to touch type. Ten years ago on MSN, it facilitated high velocity MSN conversations, and today it allows me to write this blog with my eyes closed on account of the vertigo.

Today in my appointment, which my mum had driven me to, I found myself feeling increasingly unwell. My thoughts began to flit from the conversation, at first missing only a word here or there, and then missing whole chunks. Where am I going to throw up? My mind obsessively probed the room. Aurelia was out of her car seat, and I was bobbing her up and down on my knee to keep her from crying, the motion intensifying my nausea. For some sick reason, my mind saw the bowl-like shape of the car seat and seriously considered it as an option, before spying a bin under the desk. While trying to produce the right amount of ‘Mmm, yes, yep’ sounds, which I can only assume were not being dispensed at appropriate moments in the conversation, I was fixating on that bin. I could grab it easily, it was perfectly nearly empty, the beauty of a morning appointment. It would be faster than trying to get a plastic bag out of the nappy bag, although the plastic bag belonged to me, and the bin did not. I was beginning to perspire, thighs stuck to the chair; it is so hard not to hurl when you need to. At last I managed to interrupt, “I’m sorry, this is a bit off topic, but I’m not feeling very well and was just wondering where I should go if I need to throw up?” And as I had hoped, she immediately offered the bin and placed it closer to me.

It has been eight weeks since I shuffled into Emergency holding onto Ben. The nurse who called me from the waiting room looked at the notes, and then the pint sized baby. She said, “So, she’s 24.....” and she was about to say ‘days’, but knew couldn’t be right based on the size of the baby. Then it clicked that I was the one with the problem, the new mum, and no, it wasn’t a haemorrhage as she suspected. I performed like a drunk when asked to walk and tiptoe, and as my world swooped around, I was grateful for the testing and the validation that yes, I had vertigo. Why, I asked? Is this a common post partum experience? The doctors said that sleep deprivation can have unusual manifestations in those with Chronic Fatigue Syndrome, and they thought it was one of them. Common? No.

But of course!

Some days I feel well, almost vibrant. But if I have a bad night, this combined with the last seventy nights {that is a lot of nights}, brings on the swaying, as does leaving the house. I stagger to the toilet holding onto door ways. I am nauseous, with lack of sensation in my hands. There is no cleaning, driving, crafting, or walking. But there is a trail of guilt. Guilt that family members haven’t seen much of Aurelia, because of me. Guilt that I am always an apology at events, always delaying catch ups, always needing a lift, always spending money to get help, always perceiving an obligation to share my beautiful baby and needing to keep her in my arms at home.

‘Stuff people,’ says my husband, who is the antipathy of a people pleaser and unchanged in fatherhood. It’s the nicest thing to say to a new mum with vertigo.

A new chapter has began. 

The one where I have to re-learn how to live not only as a woman, but as a mother, in a society designed for the busy. Like that mother and baby group I’ve been put in, which meets at 1.30 in the afternoon.  Are you actually telling me that mothers are awake at that time? And the maternal and child health nurse genuinely thinks that my three month old needs the socialisation? Because I kind of think we could all do with toning it down, and sitting in peace in the sunshine, and not doing from time to time. Maybe in some painful way it is good that I still can’t run on the western conveyer belt, so that I can show my daughter what it is to just be, and to be at peace with being not performing*. If she hops on, she might struggle to ever hop off. And who said the conveyer belt is even headed in the right direction? 

* If I can ever grasp the concept for more than a week. 

post natal

Dear Eurphoria,

When are you going away?

I’m still waking up and having these heart exploding moments, and there are no man made chemicals involved. Do I seriously get to look after this tiny human today? The oxytocin gushes; it is such a ridiculous sensation, this full bubble inside, this i’ll-eat-you-up-and-protect-you-from-lions kind of feeling. How on earth is this pleasantness my daily reality? It is fiercely fulfilled.

Fulfilled is not a word I have been applying to my situation for the past five years. I’ve spent well over a thousand days waking up to my creaky house, and not getting ready for work, and not getting ready for uni. I rose and showered, for the purpose of survival, and grit my teeth as I progressed through a mundane rountine my health could handle, day after boring lonely day. I hopped into bed at night; tick, stayed alive, tick, possibly didn’t destroy my autonomic system or adrenal glands any further.

And then came the all consuming decision of whether to reproduce with such imperfect health. In an attempt to improve my situation, it worsened severely.

“Ben, do you honestly think that when this is all over I’ll be happy again?”

“I honestly do.”

“You really think I’ll feel light again?”

I wonder if I would have felt the way I do now, if I hadn’t thrown up for months and spent the rest of the days hearing ghastly news and nearly wetting myself whilst facing fears in the Courage Doesn’t Always Roar kind of way.

When I told my psychiatrist that I wanted to have a baby, I was really asking him whether he could give my mind a stamp of approval. Usually psychiatrists don’t like us asking insecure questions, but this time he answered without making me fumble around for my own answer for half an hour. Of course you should be a mother, he said, but I wouldn’t be surprised if you get post natal depression and you should make a plan for it. It made sense that I could. Ben and I were genuinely expecting that I would be tossed into a sea of messy, teary, self doubt and confusion.

But it didn’t eventuate. It just didn’t.

I got post natal euphoria and no one warned me I could get it. I don’t know how long it typically lasts, or if the risk factors are incredibly-boring-life-before, or sad-bad-pregnancy, or wanted-babies-forever, or placid-baby. I have a suspicion I had all the risk factors for this state.

Naturally there are events which snuff it out at times. Being up in the night has been compounded by a heavier social load than my sick body can handle, and it’s resulted in vertigo. I could write an epic on the evils of vertigo, it’s very life altering. I can’t drive because of it, and I miss my independence.  It’s slightly anxiety provoking telling people that I can’t see them because my body is destructively dizzy, and I need every last drop of my battery power to recover for my teeny tiny dependent. But it’s not about feeling well, or driving, or hosting guests, it’s about my new role as milk, song, and hug to a beautiful child. And those things I can do.

Throughout the years of solitude and sickness, I’ve wondered what exactly was being gained. I can find one thing though, which enhances my new job; the realisation that in the end, the little things are the big things. That vulnerability and flowers are a match for achievement and having-it-all. Mothering is a series of small incredibly precious moments with no pay or accolades. And my heart is exploding with every nappy change, night feed, finger squeeze, contented moan, and morning snuggle. These moments are fleeting, and formative, and I delight in them. And I’m so glad that the bleakness of before has rendered these moments beautiful to me. The city lights were long ago, and the darkness which followed them has been training me to see the stars.

There are so many stars.

The birth story of Aurelia

The birth story I am about to write is nothing like the birth story I was planning to write when I fell pregnant. I knew that having a baby with chronic fatigue syndrome and POTS would not be a simple business, and Ben and I decided to do all in our power to make it a positive experience with as little emotional stress as possible. The stories I want to write rarely resemble the tales I actually live, and this was no exception. The journey to her birth was as brimming with emotional stress as it could be, but also laden with support and chances to grow. 

Knowing my hospital anxiety and drug sensitivities, we decided to stay far away from hospitals and chose a private midwife who would grow to know my health situation and support me in minimising drugs in labour. I had long appointments with Judy, and cups of tea, and it was the perfect care for me. Ben and I did a hypnobirthing course to help with natural pain relief, and I exercised, and did yoga. I devoured natural birth stories and longed to labour in peace and dark, sway with my contractions, and cry with joy when I met my baby. I wanted all things natural and instinctual, bar lotus birth and placenta pills.

But after that twenty week scan, instead of choosing gender appropriate baby clothes and drinking celebratory coffee, we found ourselves in the car looking at each other in stunned fear. Perhaps we would have to go to the local hospital for appointments after all, as there was an abnormality detected in her brain. The next day we learnt that the local hospital would not do, we would be travelling to Melbourne right away to see white coated obstetricians, who seriously questioned the wisdom in our decision not to test her chromosomes. We said that whatever the test came back with, we would keep our baby. We heard the words ‘severely retarded’ and ‘termination’, the latter, too many times. My great fear was being faced; intimidating medics and waiting rooms, and another even greater fear was being faced simultaneously, the possibility that we could have a child with special needs. I literally quivered my way through appointments, and grieved deeply yet came to peace about the possibility of having a different baby to the one we had imagined. But I held fast to my natural birth plan. When the brain measurements improved, it became apparent that her growth was not normal, and then there were two issues. Before long, I found myself in an appointment with my obstetrician Emily who seriously advised us to take her early, by induction or caesarean. She had to find a box of tissues for me. Not caesarean, my heart cried out. I cannot be awake during surgery, I simply cannot do that. I am far too anxious. I will die from the drugs and wound. I woke in night sweats; I cried and shook for hours that night. I cannot face another fear, I have faced too many. Almost every day I was at the hospital to see if she was still safe to stay a little longer in my womb, and when I came home, I was grey, sad, demolished, and searching for the joy of pregnancy I’d lost. I prayed desperately, I read psalms over and over, I lay in the bath and spoke to the legs that kicked from inside.

The night before the appointed day, Ben and I went to dinner at the restaurant we had first gone to nearly seven years ago, and he pulled out a letter for me which lead to more crying-in-public because it was so lovely. He is so good at lovely. We drank coffee, and felt greatly excited, because we had already grieved the changes to our plans. We slept as well as one can expect to the night before becoming parents, and possibly labouring on syntocinon or possibly having surgery. Early the next morning, we were monitoring her heart rate with CTG for the hundredth time, and for the hundredth time she was bright and active. The obstetrician I had grown to love came in and assessed my cervix to see if it looked favourable for induction – this assessment was another long term dread of mine, but with the support of my husband and Judy, it was effortless. I scrutinised her face to gauge whether my dream of being able to labour {despite being frightened of induction} was going to come true, but her expression gave nothing away. Then she gently told me that in just a few more weeks, I would certainly have gone into labour easily, that I was already on my way to getting ready, but I wasn’t dilated enough to be induced. I had a lump in my throat as she looked me straight in the eyes. I knew what that meant, it meant surgery this afternoon. She knew this was my fear, but I just asked what time I had to be back at the hospital and strained to keep my frayed nerves together.

We emerged from the hospital to a day which was drenched in sunshine. It was the perfect day for our daughter to be born on, golden and springy. We took a last pregnant walk down at the waterfront, and tried to buy a premmie hat for her at Myer, but there weren’t any. Still I willed my body to go into labour spontaneously, but my wish was not granted. I averted my gaze as Ben ate lunch, and I began to feel dizzy from fasting. By the time we returned to the hospital, I had nearly passed out, and I slumped down on the floor as I waited to be taken to my bed. There my cheery midwife gave me a drip which helped to revive me, and I climbed into a pale blue gown and waited for the bed to arrive. This was when I started to feel dreadfully anxious, I didn’t want to be the patient driven along on a bed waiting to be transferred onto an operating table. The calm of the morning evaporated, I wanted to run. I do remember in the lift seeing that the midwife had brought along a baby’s crib with flannelette blankets, and I told her that I liked what I saw, though it didn’t seem remotely real that I would have a baby in a matter of an hour. All I felt was dread.

In the anaesthetists room I was reassured to hear that my slim back would make for a more accurate placement of the spinal block, but I was immediately startled by the pain. It was shooting down one side, and I flinched over and over as they continued to put the fluid in me. It frightening me, and only worked painlessly after a second lot of local anaesthetic. Then a droopy warmth flowed down my back and legs, and I lay down with waning control of my limbs. As they wheeled me into the small operating theatre full of medical people and equipment, I began to feel sleepy. Sleepiness gave way to light headedness, and I felt that I would not be fully conscious for long, until they corrected my rapidly dropping blood pressure. I put my ipod in my ear, but it was too loud and I couldn’t adjust the volume. I breathed desperately into my lavender aromatherapy sack, and looked at Ben who was right by my head, and hoped for dear life that things would go well. I had no idea how it was going, but it felt like a long time of just hanging in there. My body was being moved from side to side, it was being rummaged in, with great pressure and a physicality I was not expecting.

I didn’t see them lift her up above the curtain, but Ben did, and the image of her little blue body is imprinted on his mind. The first thing I noticed was a cry! A beautiful clear baby’s cry, just as I had longed to hear! She was out. She was alive. Ben called out 5.15, and I thought it was her weight in pounds and ounces, but instead it was the time that she was born. Before long, the midwife had placed a little velvety bundle on my chest, wearing a white beanie. Her skin was red, and deliciously warm, and though I couldn’t really hold her because I was shaking, and couldn’t see her because she was so close to my neck, I could feel that she was there, and she was breathing. She nuzzled in, curled in a perfect ball, and I basked in her warmth. I’m not sure when I heard that she was only 4lb 10oz, or that she was perfectly formed, but I was happy. Someone asked if we had a name for her, and when Emily heard, she said ‘Did I hear Aurelia? That’s perfect’. We cuddled for maybe 15 or 20 minutes while the midwife deliberately lingered over her job with the placenta, which was apparently small, and a little pale and gritty.

Once she was taken to Special Care Nursery, I had to be brave a little longer, but Ben was by my side and we looked at the photos of her on my phone. I was convulsing violently by this point, it was uncontrollable and intense, though quite normal. The same violent pushing and pulling was happening in my numbed body. I was still anxious, until Emily started chatting with us, and the casual conversation reassured me, especially when she said it would take her months of diet and exercise to get a stomach as flat as mine. She was also calling me Danny by this point which was a familiarity not consistent with haemorrhaging to death, and therefore had a calming influence on me. When they told me it was just the skin layer to go, I felt relief. My joy increased as I was wheeled out of theatre into recovery, with cheerful yellow curtains, and a kind nurse who took my obs repeatedly and checked how the spinal was wearing off and how my uterus was contracting. Ben and I looked at the photos the midwife had taken of us in theatre, marvelling at our daughter.

In Special Care Nursery, Judy was doing kangaroo care with Aurelia, who had been given all 10mL of colostrum we had painstakingly expressed prenatally. I don’t remember this period very clearly, but Aurelia was rooting and came to lie on my chest in bliss. My shaking subsided more and more as she lay on me, this little warm bundle of baby. She was tiny and beautiful and snug in her maple leafed onesie. She was perfect. We signed a waiver to be allowed to use donor milk until mine came in, and a very generous woman named Jess expressed and delivered milk immediately so that Aurelia wouldn’t have even a drop of formula.

Finally I was wheeled up to the ward, leaving Aurelia warming in her isolette. I was hurting by now, and Ben stayed by my bed till quite late. The night was one of regular monitoring, endless waking, significant pain and real difficulty turning over. In hindsight, I could have taken more pain medication, but I had been told to rate my pain on a scale of 1 – 10, where 5 was crying. And I wasn’t crying, so I rated it at 3, which really was rather inaccurate.

The next morning I just wanted to get down to my baby girl, after gazing at photos of her all night. But how?! I could barely turn onto my side, let alone get up and off it. And then Judy walked in, and I was so surprised and delighted. She opened the curtains, and with Ben helped me to lower the bed and get me to the bathroom. It was excruciating to stand, but after several steps the pain lessened. Then we got a wheelchair, and I was wheeled down to Special Care Nursery. There was my beautiful baby, and my heart exploded that this tiny wonderful little human had grown inside me, and was safely out.

She was safe, I was safe, God had brought us safely to shore, and the shore was firm and beautiful. I had sat in the most uncomfortable places, surrendered my deepest desires, done the things I feared the most to come to this moment, all while covered in prayer by friends and family. And now I could pick her up and kiss her a hundred times and tell her that we love her, and would love her, imperfectly and deeply, forever and ever.

The joy Aurelia has brought has been so extremely bright that it has demolished the sadness, in a flash. That's the thing about this story, the end point is happier than I could have written, not in spite of the journey, but because of it. 

Pregnancy Diaries, Vol. VI

Thirty weeks.

I think it’s time we that we all came out and admitted that I am not actually going to have a baby, because, am I? It was very magical, and sickening, and exciting, and la di dah ‘I’m having a baby whooooo so pumped, this feels so right, cannot wait’. And now it’s all very ‘what the hell, how on earth did I get myself in this ridiculous situation?’ It’s just all very well to be five weeks pregnant  and stoked that you made a baby, and twenty weeks pregnant,  partying that you’re half done but glad it’s a cute lifetime away. And then thirty weeks arrives and you’re waddling down the street being kicked in your cervix and holding your uterus up and wishing you’d invested in a pair of pants that actually fits your new fat deposits curves, and it dawns on you that you must have been in a deluded state for months on end to have been so unalarmed by the upcoming event.

It’s a familiar feeling, this ‘I was obviously in a coma, because how in my right mind did I get here?’ That was me the day before I made the best decision of my life, to marry Ben. It was fun being engaged, and not-terrified, and so extraordinarily sure inside, and then the night before, booom. I’M PROMISING TO LIVE WITH HIM FOREVER AND OBVIOUSLY I WAS UNCONCIOUS OUR WHOLE RELATIONSHIP BECAUSE I GOT HERE AND ITS MAD.  

I find myself in a very neurotic state of affairs. I’m madly nesting, attending birth classes, attesting to the fact that I cannot wait to meet our daughter, while simultaneously feeling a sense of being 20 hours into a flight to a foreign country with no return ticket, and no idea why I booked in the first place. I remember feeling that on my way to Paris, just as we left Heathrow airport, and suddenly there was only one hour till I was meant to be speaking my woeful highschool French, and living with a foreign family. At that moment, I was like ‘Wow. I totally got caught up in this, and I’m only just come to my senses now one hour before we arrive, which is a point of no return, which is unfortunate for me, and MERDE!’

I’m now looking forward to not being pregnant because I’m uncomfortable and absolutely exhausted, and every single time I verbalise this thought to Ben {which is a lot of times}, I remember OH, but not being pregnant means that baby has come out and I’m caring for it. OH. OK. Maybe I should just stay pregnant after all. OH. But you can’t stay pregnant; you have to have the baby. RIGHT. I see how it is.

And these thoughts have almost nothing to do with the uncertainty of whether I will be caring for a special needs child or not, they’re just part of ice-cold-feet-syndrome.   

I will always remember my Dad’s words to me the night before I got married. He said, “No, you have thought this through extensively. This feeling isn’t a sign that you’ve been unconsciously swept up for a couple of years Dee, it’s a sign that you understand the gravity of what you’re doing.”

And he was right. I was so acutely aware of the enormity of my decision, that I was momentarily overcome. Momentarily sitting with a concept which was too large to hold, and ready and needing to embark and live in the far-less-frightening daily reality. There is a time for thinking, and there are some thoughts which need to move into action or paralysis will ensue.

That knowledge makes my current thoughts sound more bi-polar, or can we describe them as balanced?

I am overcome by disbelief that I am on the brink of becoming a mother so soon, and simultaneously completely sure that it will be a no-regret situation. I believe in tandem feelings, in hormonal laugh-turn-crying, and never-been-so-happy-or-so-sad days. 

The uncomfortable complexity I feel is deliciously reminiscent of being on the brink of the best journeys I have ever been on.  

high on life and blood

Happy endorphins float through my body on and off all day and night.

This sense of joyful mental well-being has never been as consistent in my life as the last few months.  Even though I projectile vomited my breakfast this morning, even though I can’t sleep through the night, even though I grieve on the couch with Ben when we mentally prepare to go to the Royal Women’s for brain checkups.

It’s a three stranded cord, this joy.

Being on the brink of something new, after the longest, dreariest, waiting season of my life.

The magic of feeling a tiny human move within me all day long.

And something most people usually have: blood flowing.

These years with Postural Orthostatic Tachycardia Syndrome have been faint, weak, powerless. I’ve been living half strength, like a watery apology of a cup of hot chocolate. Full bodied, full creamed, or shall I write normal....I lost the memory of what that felt like. I knew my autonomic system was dysfunctional, I could rattle off my wordy diagnosis, but I couldn’t recall how I was supposed to feel. I wondered sometimes if I was a hypochondriac. How much of my inability to do things was physical, and how much was mental? I wondered if my aversion to hanging out the washing and cleaning the shower was more laziness than chronically low blood pressure. I wondered if my default position of asking Ben to bring something to the couch for me was a deep growing slothfulness.

And then my blood volume increased in the second trimester, because I was growing a baby. Standing up, the most taken for granted of abilities, became easy. There is no blackness, no crouching to the ground as I wait for blood to reach my head. I lift my arms up to the washing line, and I don’t feel like I am ebbing away. I took my first bath in four years, and I didn’t start to pass out, so I started to take them multiple times a week, for the joy of it. I don’t do intense cardio, and yet I can still stand and walk. I go and buy the groceries for the first time in years, because I can stand in a queue, I can stand in fluorescent lights. The blood doesn’t drain from my organs, leaving me a quickly wasting shell.

The lady at the checkout saw the load I was carrying, and presumably my baby bump, and said, “I’m sorry, I didn’t see you standing there with all that stuff. You can just put in on the counter while you wait.” I am grateful for the kindness of strangers to me while I’m pregnant, but the cruelty of invisible illness is acute. The bump I have out the front, which induces the compassion of society, it is no trouble to me. I have been far far sicker while not pregnant; while standing there slim and normal to the eye, no offers of seats or help. Because no one can tell that my blood had settled in my legs and my head is light. No one can see that I feel like lukewarm and woefully weak tea, that I am silently disabled and there is nothing I can do about it.

I want to bottle this blood, to feel like this always. Blood is a life spring, invisible and essential. I don’t know how long it will last after I give birth, or when I will return to my watery, strengthless, invisible reality. I don’t want to go back there, to live grey and drained. I don’t have the words to describe the bleakness of the normality I am on vacation from. All I can think is, if you can stand unsupported and not crumple like a paper bag, life is sweeter than you know.

For now, that is me. The life I’m growing inside me is also giving me life. 

So much icing on the cake. 

Pregnancy Diaries, Vol. V

Hey little girl, I have loved the last few months with you in my womb. My love for you is fierce, so fierce.

Last time I wrote I said that I was proud of you just for wiggling your legs and arms. I’d been delighting in your very being, unconditional of achievement, and when I wrote those words, my foreboding intuitive brain asked me this question: I wonder if I will learn something in our upcoming tests which tells me this is all you will do, and this unconditional love will be heavily necessary?

And then they told me it was possible your days wouldn’t unfold normally and you wouldn’t do all the things with your arms and legs that I’d pictured. My head throbbed when they offered to take you away. In my shock, I soon recalled my last blog words, that I loved you just because you were alive.

The day they told me there was something abnormal on your brain, I felt gutted when you kicked me. You were so innocent and sweet as you exercised and experimented in there, perfectly naive to the words that had assaulted us that day. I wanted your kicks to be the expression of a perfectly forming baby, but every wiggle reminded me that maybe things were tainted. How wrong it seemed that you were wiggling so joyfully, while I was grieving.  

I felt desperately sad that maybe my joy had been kidnapped and tainted. How unfair to have the magic stolen, to think of your life with such heaviness. I just wanted to smile when I felt your aliveness, and treasure my bump, and dream about your life, and love you just as much.

My wish and prayer were answered two days later. Since that day, I feel your kicks not as a tragic reminder from a naive baby that something may be wrong, but as a poignant sign that you are alive, and forming, and beautiful, and mine.

I forget about your diagnosis often. The other day Ben and I were planning to take you to an orchestral concert when you’re about four, so that you could choose an instrument, if you wanted to play one. Only later did I remember that perhaps you wouldn’t have the motor skills. Sometimes I’m talking about you, and then someone brings up the test findings, and I realise that I had completely forgotten and was rambling on about kicking and bump growing with excitement. Those moments are my favourite, because then you are just my baby who is a joy to carry; not in a box, not a cause for grief, not so different from any other.

I'm so glad it's only maybe, but even if it was definitely, it would be fine. You will be exactly the way you’re meant to be, and we will learn from you exactly what we need to learn. As long as you wiggle, we will love.