Hyperemesis: when pregnancy is about enduring

Below is the original version of a piece I wrote for the spinoff Parents...

Two years ago at Easter, I planted a whole lot of tulip bulbs outside my bedroom. I hoped I would be pregnant when they flowered, and I knew that when I had to lie in bed for months on end I would have something nice to look at when the tulips were up. There would be something to remind me that time was passing and that like the tulips, this would end.

There are many things written about hyperemesis gravidarum (more commonly known as hyperemesis). There are many factual descriptions of what it is and the symptoms. They all say that it is defined as pregnancy nausea and vomiting so severe that you can't keep in adequate amounts of food and fluid for yourself or your baby. It requires medical intervention to ensure the safety of both mother and baby. In my case this consisted of IV hydration and anti nausea medication. There are symptoms of dehydration and weight loss and it can be very dangerous if left untreated. It is not morning sickness! It does not respond to any of the natural remedies that can lessen morning sickness. It sounds awful, It is awful! What none of that says though is that to experience it first hand or witness someone you know going through it is very different to a description on a screen. It's long, it's debilitating and it's scary! It runs deeper than feeling incredibly ill. It takes over your whole body. All of your energy, both physical and mental, go into getting through it minute by minute, day by day, week by week, month by month. I have spent eighteen months of my life with hyperemesis in varying degrees of severity. It is as much a mental and emotional experience as a physical one. The experience has changed me. The first time it took me by surprise, scared me intensely, and left me blaming myself and wondering how I could have made it better. I somehow thought I was just bad at pregnancy. I watched other people carrying on with their lives when I had to leave my job at twelve weeks pregnant. I turned up to work maybe half a dozen times in seven weeks only to look green and scare customers. The second time it taught me how brave I can be and how determined and how there was nothing I could have done the first time - it just was what it was. It was hyperemesis and it was hell.

On the surface I looked sick. Really sick. I was pale, almost grey. I was either losing or not gaining weight. There was vomiting of course. There were hours, days and weeks spent unable to talk or move. But above all else there was nausea. Oh the nausea. It doesn't ever go away. It just ebbs and flows. It was like my sidekick for nine months. It was debilitating and left me absolutely unable to live any kind of normal life or even a semi normal life - even with medication. Vomiting didn't even really help it, it just somehow made me unable to stop vomiting so I ended up trying everything I could think of to avoid doing it, with varying levels of success. On the surface things didn't look good but I had plans in place.

After being blindsided by hyperemesis the first time I planned for years how I would manage being pregnant while also caring for an older child. I considered not doing it many times but in the end it was what we wanted and the thought of not doing it just felt wrong. I spent years trying to overcome my anxiety about being pregnant again and facing feeling so scarily sick. In the end taking control and making a plan ended up being the most helpful thing. I allowed myself the time to heal mentally from the first experience. I took four years.

I planned so many things to help make it more doable for me, for my husband and for my son. I had every single detail sorted from the small to the large. I knew that I would be unable to look after my son for some time so we had to do some serious planning. Both sets of grandparents are very supportive, but they all live out of town so we didn't have them as an option for day to day help. We ended up getting a trainee nanny from careers college. She helped around the house and provided affordable care for my eldest child. I set up my bedroom so I had a quiet and comfortable space to spend my days in. I bought an armchair that could live near the bathroom for the times I needed comfort without distance. I put motivating pictures on the wall to remind me why I was doing this. My mother kindly set up a box of exciting distractions and activities for my son so that on the days or hours when it was just us, if it was too hard I could pull out something to buy me time to lie on the sofa. I just missed one thing. It was still going to be hyperemesis and nothing was going to make it anything different.

I found myself feeling a familiar feeling one night in mid August, and as the nausea washed over me only a few days into my pregnancy I felt unexpectedly calm. I just quietly got on with putting my plans into motion.The tulips came through a few weeks later and so did the weeds. They were a sign I wasn't present in my life and a sign that nobody else had the time to be both me and them. I had planned the tulips but I didn't quite plan adequately for the weeds. I hadn't fully anticipated the effects of not being present. I focused relentlessly on the tulips, the things I was doing to make things easier and more under control. The things that made me feel in control. The things that made me feel able to let myself get pregnant knowing what would come. For the most part the tulips helped my physical and mental health. I got IV fluid when I needed to and I started on ondansetron earlier (the anti nausea med they use for chemo patients) and I expected all of it. The weeds still came. They came in the form of my eldest son's nightmares and anxiety, my incredible physical weakness, vulnerability and complete reliance on others, and watching them all struggle while I lay in bed. They were being me and them. I was just lying in bed trying to endure. The mental effort required is just as great as the physical.

The weeds grew bigger, I got sicker, I ate less, I drank less, I lived less and the people in my house worried more. Some days I got so weak that I had to use the wall as a support to walk down the hall. I needed help in the shower because I was too weak to go it alone. I spent time on the bathroom floor. Even on my ‘better’ days, I wasn't able to socialise because I would get too tired and being tired made me sicker for days afterwards and would usually mean I had to go to the doctors for a bag of IV fluid. Sometimes the doctor would send me on to the hospital. At this stage I was eating an apple and a few slices of cheese for dinner. Other meals were just as inadequate and weird. It was all I could manage. These were the dark days, the ones barely anybody saw because I couldn't let them, the ones that nobody understands because I couldn't let them.

I was strangely too sick to be lonely. I struggled to have a relationship with my son as I could barely put a sentence together and all I could do was lie there. He used to try to engage with me but the effort of talking to him was something I could only physically manage for a couple of minutes before weakness and sickness would overtake me. My guilt ate me up during the endless hours alone with my relentless nausea. We tried to keep my son’s life as interesting and distracting as possible. The nanny was amazing and she basically saved us. She came in and did everything and entertained my boy when he wasn't at kindy with all sorts of amazing activities. She enabled me to have the baby and she is still with us one day per week as I can't bring myself to part with her. She also took some of the pressure off my husband. It lessened the need for him to be at work all day and then come home to do absolutely everything around the house and for my son and then turn around and nurse me and emotionally support me during a horrendous time. He did what was needed of course - to him it seemed like the easy end of the deal. We also bought the book “Mama has hyperemesis gravidarum but only for awhile”. It’s about a bunny family going through the realities of hyperemesis. My son felt oddly reassured by it even though it was such a rough read my husband and I used to cry when he asked us to read it to him. The happy ending in the book, just like in real life, made it all feel better.

I remember certain things during this period. One of them was a day my husband and son planted some flax in our garden. We all just wanted to do something that made things look a bit nicer or feel a bit more normal. This was one of those things. I remember I was lying down the whole time they were outside, and they wanted to show me. So I walked out into the garden and stood there for two minutes. I remember that I felt weak and dizzy, and then unwell. My husband helped me back inside and I then spent the next four hours in bed too sick to even stomach water. I ended up getting some IV hydration a couple of days later - because I’d stood in our garden for a few minute. These days lasted from late winter until just before Christmas. They were long. It was half way through my pregnancy when the shift came. By this stage the tulips had long ago died and had blended into the general weedscape that everybody was too busy or sick to even notice. My plans were working as well as they were going to work. We were holding it together, just. The baby was doing well and I had endured. The darkest days were done.

The midway improvement was a relief! I was still on ondansetron every day, but I could control the dehydration now. Water was doable again and simple bland food was staying down in small, frequent portions. I still couldn't see people because I would be so ill for days afterwards. I never understood why. For my sanity I went out for non-medical reasons four times in thirty five weeks. I still had bad days and weeks, but they were fewer. I was existing but not yet living. I started to work on the baby's room and getting baby things sorted. It kept me focused. Family and friends stepped in and helped in the ways they could. I appreciated every single thing. I started to have the energy to look forward to things again. I remember latching onto the moment my eldest son would meet the baby for the first time and imagining what that would feel like. I still had to rest a lot to keep the sickness reduced and I was very weak. I never ever altered my diet because I knew that would take me right back to the dark days. The weeks and months moved on and many times I wondered how I would get there. The heat of February at seven months pregnant was not a good time for nausea.

The weather eventually started to cool down. It was the hottest Wellington summer since the 1920’s and I almost cried with relief on the first day of autumn. I knew the baby was near and I was over my limited diet. I felt a lot better than the early days but I was still ill, still taking ondansetron, still not able to live. I had long ago stopped seeing all the jobs piling up around the house, the details that nobody had time for. A friend sent me a message cheering me on in early April saying something along the lines of “nearly there”. It helped. She sent me another message on April 10 reminding me I was in double digits for the month. I’d been counting down the weeks since January. I knew the end was near because a magical thing happens to me two weeks before the baby comes. One day in mid April I woke up and I didn't feel sick. That whole day I didn't even take an ondansetron. I was thirty seven weeks pregnant and that day I sat outside on the deck and watched my son jumping on his trampoline, I played in the backyard with him and I started slowly to live. The wheels were about to seriously come off in other ways but I had a glorious, quiet few days just feeling eighty percent ok and doing nice little things around home. I smiled, I physically relaxed, I was nearly there. Then I spent some time in hospital with other pregnancy complications on the Monday and a cesarean was booked for Wednesday as my body wasn't coping. The end was in sight! The night before I had the baby I decided to weigh myself. I felt really quite proud, I'd managed to gain seven kilos during my entire pregnancy. I know how that sounds! I know that it must make me sound like the world’s biggest jerk. I realise for most people it would usually be a much more significant number and believe me this is not a thing I normally struggle with in regular life. Still, it was low but respectable considering how much I had struggled and tried to achieve it. I laughed at the irony and started fantasising about all the things I would be able to eat in a couple of days time. My mind went to some amazing places.

The morning after my cesarean I lay in bed feeling exhausted and sore, but normal. No nausea. It was just magically gone. I woke up and I remember I just smiled, I knew what was next. My husband called me from the hospital Wishbone. The man knew the drill. I’d had no pregnancy cravings, and after months of nausea, the six weeks after birth were for me to have a calorie free body restoration party. He just said “Hi, what would you like me to buy you and how many?” I cried a little. I had one of the top five eating moments of my life right then. That lamb and aioli sandwich, chocolate chip biscuit, and flat white for second breakfast at 8am were worthy of happy tears. There is nothing on earth quite like the first bites of food with actual flavour after thirty eight weeks of a bland repetitive diet. I was released from hyperemetic jail and I had a freedom party!

My eldest son came in and met the baby, and I remember that he excitedly asked if I was better now and when I could come home. It was over for everybody, not just me. He beamed at his little brother, it was love at first sight and that moment will always be with me. It was the first of many moments that made it feel that my sacrifice of body, mind and freedom were worth it.

In the weeks after birth my friends came, and I socialised gently in my pyjamas while I recovered from birth, low iron and nine months of my pregnancy. I knew there would be no price to pay for seeing my friends, no days of horror in bed and on the bathroom floor afterwards. There was just life slowly returning and oceans of relief and constant tears of pride in myself and gratitude that I'd managed to do it and that I had a lovely baby. He was such a lovely baby, and there were so many tears. I got to spend time with my husband and eldest son and my presence slowly increased as I recovered.

Then one year on winter ended and the tulips came up again. My first instinct was to run out the door and tear them out of the ground so I never had to be reminded of that time again. Instead, I tore out the weeds and then had a glass of wine just because I could. I stood in my garden and toasted the women currently going through hyperemesis and wished for them an eternal supply of sandwiches at the end, good people to help them through, plus endless strength and the power to endure.