It’s been a while…

So it’s been nearly 2 years since my last post! Since I last wrote we have experienced the delight of seeing our little number 2 grow and laugh and climb and eat. He toddles around with his blonde hair and big grin, and brings joy. Joy to us and to his sister.

His entry to world was not as anyone would have planned.  My exit from hyperemesis was not as I had planned. The goal of just getting to the end of pregnancy was suddenly, brutally moved. The lack of nausea provided little comfort in the lights of theatre, neonatal intensive care and the realisation that sometimes everything does not go ok.  However, our boy chose us, he chose to fight, he was brave and he overcame 🙂

Lately I have been questioning the whole narrative that accompanies pregnancy and birth.  ‘It’ll all be ok’ we say to Mums awaiting birth, with a degree of certainty that is perhaps unwarranted. It usually is OK, and that is AMAZING. But these women are lucky.  It is luck, not skill, that has landed them healthy with healthy babies. A wealth of antenatal classes, books, and apps gives increased knowledge, and you know what they say, knowledge is power.  But is it really? All the knowledge in the world does not give you the power to control your pregnancy, your fertility or your birth. It is a subtle lie to convince women otherwise.

Granted I am probably not the person anyone wants at the baby shower! With tales of hyperemesis and uterine ruptures, and NICU. But perhaps this pressure to keep quiet is not doing anyone any favours. How different my experience may have been had I known of one other woman who went through the same as me that I could have talked to. I am sure she is there somewhere in all the Mums I have met and talked to, but most likely she didn’t say anything for fear of bringing ‘a dampener’.  We must remember that happiness is the most usual outcome, but not the only one. And even a happy ending can be brought about by a very much unplanned path, which is glib to ignore.  There is beauty in the imperfection, and even though nobody wants to hear the nightmare labour story, for that lady that is the only path they walked to get their baby, so it is beautiful. And that deserves as much celebrating and listening to and discussion as the lady who had a two hour labour with only gas and air.

We must remember that pregnancy conditions, miscarriages, infertility and complicated births are not infectious. We should not be afraid to talk about these things, as Mums we should not constantly fight to silence the alternative narrative. Listening to someone’s story does not make it more likely to happen to you. Reading my blog about hyperemesis does not make you more likely to be sick in your own pregnancy! But it may make you feel less alone if you ever are unlucky enough to experience it. Or make you aware of your luck if you have a nausea free pregnancy!

So to the woman battling infertility, or the lady struggling through crippling nights of isolating nausea, or the mother grieving the loss of a miscarriage, or the Mum who can’t breastfeed we must, must be kind. Kinder. It is not a choice, any of it. And I struggle with the narrative swallowed by so many that would suggest it is.

 

Round two!

Somehow writing a blog about hyperemesis at the time of actually having hyperemesis seems a little trickier to know how to pitch it. Writing retrospectively was fine, sheds light on a past situation to help people gain understanding. But, writing at the time of being ill, well somehow seems gratuitous or sympathy-seeking – not my intention! Nevertheless, I have obviously been thinking about the topic a lot of late, and thanks to my royal buddy it has been on the news again, so I thought I’d pick up the pen…

I find myself 19 weeks into pregnancy number 2, grateful for a healthy and lively little baby, and excited for what the future holds for this little one, my daughter, and us as a family of 4! But, sick. The sickness started this time at 5 weeks, before I even knew I was pregnant. So I do feel robbed of those precious days of knowing I was pregnant, but feeling fine before the sickness kicks in. Last time I had 5 such days. This time, not so much.

I have so much I could write about, but with a second diagnosis firmly on my medical notes this time, I will focus on a few differences so far first and second time round.

On a positive note, I have been pleasantly surprised by the difference in attitudes from doctors this time. Last time I was not diagnosed with hyperemesis until about week 25 when the GP finally conceded that this was not ‘normal morning sickness’. This time I was diagnosed at 7 weeks and every doctor I have seen has been helpful and considerate. I would like to think this is due to a general increase in awareness of the disease, perhaps it is, but I rather think that they take it more seriously from the onset due to fact I was sick until week 42 last time. Makes you think, it’s a shame to have to go through that just to get better care this time. Another positive, is knowing from the onset that I am in this together with my husband, having a wing man, ready with sick bowl, willing to go out at all hours for whatever I feel I can eat, and caring for our daughter brilliantly when I can’t, is a grace I appreciate. Last time it hit us out the blue, this time it is team Smith vs hyperemesis!

Thankfully, second time round I have been spared the feelings of ‘can it possibly be worth it’. Having a child already has meant that I do know, for sure, not based on what others say, that it is worth it. She was worth it. This baby will be worth it. And the last 3 years of parenting? Still not a day that has been as tough as 24/7 nausea. Except from the recent months – parenting a toddler AND having 24/7 nausea, now that is stressful.

One benefit of having a little girl to help me through these tough days is that she keeps me organised, when I don’t have the energy! For example the other day, a particularly sick day, somewhere around mid day I managed to have shower and get dressed. It felt like quite an achievement, I was just about to move on with the day when a little voice piped up ‘Mum, you forgot your make up’. So I spent 5 minutes with her doing my make up, something she likes to join in with, and must admit I did feel a bit better (and definitely looked a bit better) afterwards. Other times, I realise she thinks its more normal than it is. Recently my daughter and my niece were playing doctors and she was the patient. She said merrily ‘look at me Mummy – I’m sick on the road, I need a doctor’ – all the while clutching a handbag and a sick bowl. No prizes for guessing where she got that idea from…

But caring for a child whilst feeling sick all the time is so debilitatingly draining, I don’t think it is really possible to imagine what it is like. The cooking, toilet attending, washing, playing become a bit of an endurance test. And the guilt. Guilt that my daughter has watched more TV in the last few weeks than I have let her watch in the previous 2 years, guilt when social media portrays pictures of everyone else doing wholesome autumn themed crafts with their children, when it took all my energy today to play a game of snap for 5 mins, guilt for the decision to medicate this pregnancy and not the last.

So it is not a simple thing, this hyperemesis. First time round, second time round, whenever. I have observed this time round that the Duchess of Cambridge has pretty much disappeared from the public eye, and I think that is reflective of hyperemesis second time round. You just don’t have the expectation that life can go on as normal, because you realised the first time that it can’t. So it is with reduced expectations of myself that I have had to face the last few months, and continue to face the coming ones. At best, hyperemesis creates a mediocre, half-hearted version of its sufferer. At worst, it results in severe depression.

So it if you encounter a hyperemetic woman as you go about life at any point, go easy on her. Understand that although she may look well, she doesn’t feel it, and whatever you do do not offer her any ginger biscuits….

2 year recovery?

I read this quote in an article the other day:

‘A process was identified wherein women experienced severe and unrelenting nausea and related symptoms which became progressively more debilitating, leaving them feeling uncertain about when and if they would recover. This caused the women to isolate themselves from their world in an effort to cope with symptoms.’

And I thought that it summed up hyperemesis pretty well, you really do wonder when and if you will recover. And it is a cruel illness which entails cutting yourself off from the sights, sounds and smells of people and social contact in order to cope with the symptoms. You feel at your best in the dark in silence. Not the best for your quality of life.

I discovered the other day that pregnant women with hyperemesis should be eligible for some prenatal mental health care, but of course that knowledge is pretty useless nearly three years after giving birth.  So it has reminded me of the ever increasing need to continue raising awareness of this condition. In an ideal world I think counselling should be available automatically for all women who have had hyperemesis once, as they embark on future pregnancies.  As the thought of this is as overwhelming as any challenge you may face in life. It is I believe a kind of grieving, there is a sense of loss of the innonence with which sufferes approached their first pregnancy. Full of hope and excitement and awe.

Apparently the average time for recovery is 2 years. 2 YEARS!! That is a long time. So on that basis I have recovered, which is true to an extent. Physically I am well, and able to eat properly again. Although I will never be able to eat porridge again, or spinach but that’s ok! Emotionally I am able to enjoy my daughter and all motherhood offers. Mentally – I think that is a tricky one. Hyperemesis changes the way you think. It is never far from your mind. I found myself at a work event recently where they were giving away samples of flavourless toothpaste (meant for people with learning disabilities) and I was stuffing loads of samples in my bag as I never knew such a thing existed before and I so now I have a stash of it with the hope that in any future pregnancies this may make teeth cleaning more possible. Also at work I am training in Sensory Integration, and I found myself wondering if anyone has looked into treating hyperemesis with Sensory Integretion therapy – answer is no so I’ve added that to my to-do list.  The symptoms are not dissimilar to the hyper sensitivities experienced by people with autism for example, being unable to cope with smells, tastes, textures etc.

And then the other day my husband went to nursery and our daughter had told all the staff Mummy was pregnant and she was getting a brother! At her age this is highly possible, though at present not the case!  And it hit home that the normal progression of family life seems to be at a certain stage, everyone seems ready for a new addition. And then the issues of hyperemesis, which have never really gone away, resurface. And you realise that there is a reason why ‘affects future family planning’ is one of the criteria for diagnosing hyperemesis.  Personally, I am hoping that in any future pregnancies I will fall into the 16% of women who have a hyperemetic pregnancy followed by a normal one. However, there is not one area of my life that I haven’t wondered how I would cope if I had hyperemesis again, and the answer is I don’t know. I have no idea how I could cope again, but all I know is that there are some very brave women out there who have done it and from them I take inspiration 🙂

3108 hours

I’m not usually one for stats, but when I recently read an article about how many hours of nausea on average pregnant women experience, I realised afresh how tiny the percentage of women who feel sick throughout their entire pregnancy is. 

Of all pregnant women, 75% experience some sickness.  Of these, 19% experience less than 16 hours of  nausea, 12% between 66 and 100 hours of nausea, 6% between 200 and 300 hours, and the unlucky few (1% ) more than 700 hours of nausea.  As for me, on the basis that I had 12 hours nausea a day (in reality it was more)  from week 5 till week 42, I clocked up some 3108 hours of nausea.

So that is some 2408 hours more than the 1% in the very severe 700+ hours group!  And so it is not surprising that women from all the other groups find it difficult to understand what it is like to experience such relentless nausea.  259 days of nausea. Waking up, feeling sick or being sick 259 days in a row. To think of it another way,  3108 hours is equivalent to 82 working weeks.  So if you imagine feeling sick all day at work, every day for nearly 2 years – that is what it is like.

When the news of the Duchess of Cambridge broke, and hyperemesis had its brief spell of media attention, I couldn’t help but feel it was at times portrayed as something ‘curable’ that could be fixed by a couple of days in hospital.  But the reality is that for women with hyperemesis this sickness and relentless nausea continues, whether in hospital or at home, whether in public or in private.  There is no cure, no escape. They are dark days, whether they are spent against the backdrop of the toilets at work, as in my case, or in a royal palace, as in Kate’s case.   

So my 3108 hours of nausea changed me.  Suddenly the part of the wedding vows you kind of skip through as a young healthy twentysomething ‘in sickness and in health’ is put to the test. And on a wider scale, even now I can be reduced to tears in an instant by a hurtful comment that gives me a glimpse of how little people (even some who would claim to know me well) understood about what it is like to go through hyperemesis.  The literature refers to us as ‘hyperemesis survivors’.  There is a reason for that.  And somewhere about 1500 hours in you really do question if you can survive it.  But you do, somehow.

Post hyperemesis: breastfeeding?

Since having a baby, I have discovered that the issue of breastfeeding is pretty much a political one.  ‘Breast is best’ is drummed into you from antenatal class to postnatal ward, and afterwards by visiting midwives, health visitors and well-meaning friends.  Now, I am not about to dispute the well-documented evidence that breastfeeding has clear health and nutritional benefits for both baby and mum, and that obviously it can be tailor-made, so to speak, to a baby in a unique way.  However, what concerns me is the use of this ‘breast is best’ social pressure which is brandished about, with little or no regard for the woman’s emotional state or physical well-being.  And, the added pressure applied to women that if they choose not to breastfeed that this will impair their ability to bond with their baby.

I have been looking for statistics regarding breastfeeding rates in women who have had hyperemesis, as I am interested to see if the percentage of women who breastfeed after this illness is any less than in women with healthy pregnancies.  As yet (perhaps I will carry it out myself some day!) there is no research on the subject, but I can assure you the last thing I felt like doing after 9 months of nausea and vomiting was to breastfeed a new baby.  I was so physically, mentally and emotionally exhausted from the pregnancy that I had agreed with my husband that I would try to feed her, but if it was too much then we would bottle feed.

In the end, I breastfed her exclusively for 8 months, but that was her choice not mine! She refused bottles (every make, model and brand…) and so I had to feed her, and it was OK.  Minor hitches at the beginning, but no serious problem with it.  Prior to pregnancy I had no particularly strong views about breastfeeding, I always just thought I’d like to give it a go. After breastfeeding, I still feel that I don’t have any particularly strong views about it.  I  fed her, she grew well and is healthy, but I would not say I loved it, or felt it was what I was made for, or that it helped me to bond with her.  In actual fact, I would say that at 8 months when I started to bottle feed her I really started to enjoy feeding her, and enjoy those special times together even more.  I say this, because I only seem to hear breast-feeding women advocate what they did, and bottle-feeding women advocate what they did, and I would just say I experienced the benefits of both!

Research on hyperemesis says that on average it takes women 1-2 months to recover for every month that they were ill. That means if you were ill for your whole pregnancy, it may take up to 18 months to physically recover fully, regain energy and replenish nutritional reserves.  If someone was recovering from another illness, I doubt there would be as much pressure for them to undertake any other physically demanding activity every few hours, night and day, for the months during their recovery.

Aside from the physical considerations, how you feed your baby needs to take into consideration whole family dynamics and the emotional well being other relationships within the family.  A friend of mine who has suffered severe hyperemesis with both her pregnancies, testifies that one of the hardest parts of the illness was the way in which it impacted negatively on the relationship with her daughter, when she was pregnant with her second.  She had spent so much time in bed sick, there were times she felt as though her daughter no longer recognised her.  In cases such as these, choosing to share the feeding, releasing time and energy to rebuild the relationship with other children, is surely understandable, or even the best thing you could do.  Similarly, hyperemesis can cause real strain on a marriage, and in my opinion getting that relationship back on track as soon as possible will benefit the new baby enormously.  If that necessitates choosing a less physically intrusive way of feeding the baby, then so be it.

So while in an ideal world breast may be best, not all babies come into the world following an ideal pregnancy.  You cannot get a break from a traumatic pregnancy.  It cannot be shared with your husband, your mum can’t come and take your pregnancy for a day – it is your battle to fight.  Feeding, on the other hand, does not need to be.  We are fortunate enough to live in a society with clean water, good formula and sterile bottles.  And so if you have experienced hyperemesis, by all means tell me ‘breast is best’ and cast the first stone… but if not, perhaps some reflection is prudent before piling pressure and  guilt onto fragile, recovering Mums.

A year on…

Last Sunday I started to feel nauseous and then, for no reason, started to be sick.  My first thought was that I must be pregnant again, and within the space of a few seconds I experienced a range of emotions that could only be described as bewildering.  The strongest of which was the feeling of inadequacy – feeling like I simply could not go through it again.  Followed quickly by disappointment that, if I was pregnant, my first reaction had been panic, and not sheer, innocent joy as it was the first time I found out I was pregnant.  And then I went to sleep for a few hours, woke up, felt fine and realised that it was just a sickness bug!  However, it made me stop in my tracks because I realised that the fact that a minor sickness bug could ensue such a response in me, shows the extent to which hyperemesis continues long after the pregnancy.

I recently watched a TV documentary following the stories of various pregnant woman.  One lady had a condition which caused her uncontrollable, unrelenting itching all over her body.  Itching, in itself, much like nausea, could seem like quite a trivial complaint.  However, the itching meant she couldn’t sleep or function.  In the end it drove her to complete desperation and she was unsure if she could continue with the pregnancy.  She did continue, and she had the baby.  However, it was powerfully painful to watch the lady transition from an excited newly-pregnant mum who was so over-the-moon to be pregnant, to a bedraggled, tormented woman itching alone in the darkness of her hospital room.  It brought me to tears, and it struck a chord with a deep part of me which you cannot relate to unless your pregnancy has taken you to the darkest place of your life.

This week my daughter will be one, and we shall be celebrating her in style, as she truly is a delight!  But a year on from my pregnancy I would not say that time heals, as the memories of the debilitating sickness are still as crippling and as fresh as though it were yesterday.  As I see many friends progress through normal, healthy pregnancies, it is hard not to feel jealous as I realise that my journey into motherhood was different.  That will always be the case, as time cannot change the journey you have been on.

My husband and I were reflecting today about our experience of the first days and weeks of parenthood, and his description that everything seemed OK because he ‘had got his wife back’ rang true.  The night feeds, the colic, the c-section recovery, the change of routine, the teething, the reduced sleep, everything which people say turns your life upside down, for us, were the opposite! They heralded life going ‘back to normal’ after hyperemesis.  I would wake up in the night and grin, no matter how tired I was, because I was so excited not to be feeling sick!

But amid the joy of the first year of being a mum, I have been surprised by how far reaching the ramifications of hyperemesis have been.  In the past year I have had to deal with the consequences of relationships being neglected to a certain extent for 9 months, and they take time to rebuild.  I have recently returned to work and had to face the consequences that I didn’t make a particularly good impression being there when I was so sick.  I have realised that I now have a poor sickness record at work, which could impede future job applications.   It really does impact all areas of your life, in a way which is hard to imagine.

And so I am glad to have it in the past…but it is bittersweet.  Being a mum has been more joy than I could have imagined, and more fun and easier and more ‘me’ than I would have thought.  I suit it, and it suits me, and I love it.  And so while time does not heal, in any way,  the experience of hyperemesis, it does prove that it was worth it.  I have discovered a little bit of heaven that was worth going to hell and back for.  But hell is still torturous.  And life after hyperemesis is tainted by the realisation that at some time in the future you may choose to go back there, knowing what it is like, in order to have another baby.  But for now, I will eat birthday cake, enjoy cuddles with my baby and enjoy being back.

What not to say!

http://www.helpher.org/about-her-foundation/top10.php

Help!

Sometimes it can be diffiuclt to know how to help someone when they are experiencing something you can’t relate to.  But, if you know someone with hyperemesis these are some ideas for ways you can help them…

  • cook food for them to put in the freezer – the smell and sight of cooking, especially with raw ingredients, mskes the sickness worse so often cooking is impossible.  There were months when I couldn’t even open the fridge without being sick and when my mother in law came and filled the freezer with meals it was amazingly helpful! Even if the pregnant lady can’t face eating, this will really help people as their husbands and other children still need meals!
  • supermarket shopping – easy to take it for granted but when going in the supermarket makes you actually sick shopping becomes really difficult.  This is really hard going when it lasts for months and months.  Even online shopping may not work – in my case the thought of certain foods made me sick too.  So a brilliant way to help, which my brother thought of, was to order an online shop to get delivered to my door!
  • be patient – nobody with hyperemesis means to neglect friendships/be antisocial but the smallest task, such as buying a card or a gift can be too much when you feel so ill. Try not to take it personally if they do not seem to take much interest in you during this time, in the head of someone with hyperemesis it is a matter of getting through each day, sometimes each hour and there is little space to think of much else.
  • ask how they are – even if the answer is always ‘nauseas’.  It helps break down the isolation attached to it, and it is important they know you care – I had a strong feeling that people were bored of hearing about it after a few weeks, but when there’s not a lot else going on in your head that feels like people are bored of you.  It was really challenging knowing I still had months to get through, but feeling like I couldn’t talk about it much.

Reflections after six months

Now that it is nearly six months since I stopped being pregnant, I have had some space to think and reflect on my experiences.  I still have mixed emotions regarding my pregnancy experience which some of you may be able to relate to.  Perhaps there is an assumption, based on most people’s experience, that having a new baby is a hard time in your life, where lack of sleep and a dramatic change in lifestyle can be quite a shock.  Well, from my experience, and from chatting to a couple of others who have had severe pregnancy sickness, it seems that in comparison to the 9 months of torturous nausea, having a new baby is an absolute delight and A LOT easier!  Yes there are challenges, but for anyone who is suffering from hyperemesis I’d explain it like this. Having a new baby is different, because you can have a break.  Even if your baby is awake a lot and needs a lot of your attention for even 20 hours of the day, there are a few hours when you can have your mind back and regain energy.  At the end of the day, a baby would be hard pushed to stay awake for 9 months requiring constant 24/7 attention! But when you have hyperemesis that is what it is like, you cannot ever get rid of the nausea, it is like a prison in your mind that you can’t escape from.  Meanwhile, there is the expectation (from yourself and others) that you should be able to function more or less normally, as it the case with a lot of pregnancies.  However, when you have the baby you hopefully get some maternity leave, and so only have to focus on your baby. And it is a time in life when traditionally friends and family gather round to offer support.  So one of the things that really kept me going during my pregnancy was the thought that the other side must be easier, and I can honestly say that even with the usual challenges of recovering from a c-section, having mastitis, breastfeeding, and less sleep there has not been one day in my first six months of motherhood that has been as hard as being pregnant – so take heart!

Things that helped (not ginger biscuits!)

Throughout the duration of my pregnancy I was lucky in that I could keep enough down and did not end up in hospital like so many others.  These are just things I discovered that helped me and may help someone else out there!

  • bacon sandwhiches. Everyday… (think it was the salt)
  • putting LOADS of ice cubes in a drink so it was freezing cold meant I could keep it down and helped the nausea for a few seconds
  • my husband’s help and support with the housework
  • eating every hour during the day, and eating in the night whenever I woke up with the nausea (I remember standing in the kitchen at 3.30am on a work night eating lasagna thinking it will surely be better being up in the night feeding a baby than up in the night feeding myself!)
  • the thought that surely  looking after a new baby would be easy compared to nine months of nausea ( I was right about that one)
  • drinking with a straw
  • lemonade
  • chinese food/fried rice (salt?)
  • meeting one friend who had also had nine months of sickness with both her pregnancies