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Hyperemesis Gravidarum: The Definitive Guide

Hyperemesis Gravidarum: The Definitive Guide – Our Book is Out Now!

Hyperemesis Gravidarum: The Definitive Guide

I can barely believe it… 3 years after the end of my own HG pregnancy, and after many, many hours spent pouring over research, talking to other sufferers and survivors, and then writing and editing until my eyes felt like they would pop out of my head, the book is finally here!

Excuse me whist I squeal for just a minute or two… *squeeeeee*

I am anxiously awaiting my own “in print” copy (my co-author has hers already!) and then I shall update this post with a celebratory photo. But for now, let me tell you more about it…

The book is 232 pages long, packed full of information based on the latest research, suggestions and anecdotes from other sufferers and survivors, and a whole pile of resources to help anyone who is currently suffering from hyperemesis gravidarum, those who have previously suffered, and those who are planning another pregnancy.

But it isn’t just for sufferers, oh no, we wanted it to be THE definitive guide and so we have also dedicated chapters to partners and carers as well as healthcare professionals too. What more could you want?

Not much, it seems, because despite the books still being “preorder only” on Amazon we have already hit #4 on the bestseller list for the category “Pregnancy and Childbirth” and we only started sharing the link at around 8:30pm last night… that’s #4 on the bestsellers list in our first 12 hours of selling, 12 hours which were overnight I might add! I’m not sure either Caitlin or myself can quite believe it!

Hyperemesis Gravidarum: The Definitive Guide #4 Besteller on Amazon

The book is aimed specifically at a UK audience, as we have based an awful lot of the treatment chapters on the NHS services available. However, there is still a vast amount of information available for sufferers and survivors elsewhere in the world, and so the book is also available through amazon.com as well as amazon.co.uk

It is currently only available in paperback, at a price of £10 per copy. However an eBook version is coming very soon and we will let you know as soon as it is available!

I’d like to take a moment now to thank everyone who has supported me (and Caitlin) throughout this entire process. I’m pretty sure I probably sounded crazy when I announced to my family that I was going to write a book about HG when my son was only 3 months old. I’m pretty sure I was slightly crazy, to be honest, having seen just how much time and effort it has taken!! But I have been supported from start to finish from family, friends and the online community alike and for that I want to say a  massive thank you. I would not be celebrating today if it weren’t for that support.

Thank you!

All that is left to say is that I do hope you will go and buy a copy of the book and find it useful. If you do, please consider leaving a review for us on amazon, as that will increase our exposure and ranking. I’d also love to hear from you here on the blog if you have bought and read the book – let me know what you think.

If you are a journalist or PR agency and would like to talk to me further regarding my own experience, my work for the charity Pregnancy Sickness Support or my book “Hyperemesis Gravidarum: The Definitive Guide” then please do get in touch using my contact form or call me on 07428 119956 

Finding the Blessings: Reflections on the past three years

Three years ago today I was at the hospital, having been induced early that morning. Despite the fact I didn’t know what to expect and was starting to feel decidedly unwell by this point in the day, I was thankful that whatever happened I was not leaving that hospital again until I had given birth to my baby. Nine long months of suffering with hyperemesis gravidarum was finally going to be over, and I was ready to move on. birth However, I totally underestimated just how difficult life would be over the years ahead. After such a challenging pregnancy I was convinced life could only get better. And it did in many, many ways. I was finally a mother, something I had always dreamed of being, ever since I was a very young girl. I loved every sleep-deprived moment of those early days, but life was far from easy.

Over the past three years so much has happened… both TJ and I have changed jobs, I’ve written a book, and Little Man has grown into the most adorable little boy. But the biggest change has been in TJ’s health. I have watched my husband gradually lose himself to some truly awful neuropathic symptoms and my own health has, in turn, taken a real beating as I try to balance the changing needs of my family along with working full-time and working on the book. I am, quite frankly, beyond exhausted.

Most days I feel like crying. I feel myself breaking into a million pieces, torn between so many responsibilities. And I have lost so much of the optimism and faith that once defined the way I viewed the world. I’ve lost the trust that “one day” life will get easier! But beneath all of that sadness, anger and grief, there is a little light that shines so brightly… SAM_1297 This gorgeous boy of mine, the one I fought through nine terrifyingly long months of sickness to meet, means the world to me. He is, quite simply, the light of our lives and no matter how hard things get, we keep going for him. Because he is worth it.

There was a time when I wasn’t sure I could have children. Despite the fact I would have loved a larger family, there are some incredible blessings to be had in having an only child. Our love for Little Man is unrivalled by any other, and his love is poured on us just as freely. Whilst I know we would have loved other children just as much, knowing that we get to pour all our love onto him alone is a wonderful feeling.

Of course we have our moments, times when I worry about the effect of all this stress on him. The times he sobs and just wants his mummy because he cannot express what is wrong, just that he is sad. And his frustration comes out by hitting, kicking and pinching right now, which is incredibly difficult to cope with. But even at those times we know that his heart is full of love for us and others, because we see it every single day. He adores making friends and finds joy in the simplest of things and reminds us that life is so beautiful, if only you would look. Feeding Daddy Daddy will probably hate me for posting this photo, but I love the beauty in seeing my boy sharing with his daddy and “looking after him”

The nine months of sickness were more than worth it for a lifetime with this beautiful little boy, and knowing this gives me the hope and strength I need to know that the battles we are currently facing are more than worth it for the life we have together. Right now. I no longer look for “one day”… that day may never come.

But right now my life is so totally blessed. I have a husband who is my best friend, who has stood by me through my darkest periods and now trusts me to stand by him through his. And together we are raising the most important person in our lives, receiving just as much from him as he receives from us. No matter what life throws at us, so long as we are together we will get through it.

Ticket to Ride

We climbed on board the train, bought our “ticket to ride” and chose the people we wanted to go on this journey with. I have no idea where we’re going, what the destination is or when we’ll get there, but right now I am choosing to enjoy the journey for what it is. A blessing.

 This post has been added to the Share the Joy linky (hosted by Bod For Tea) on 2nd February 2015

Share the Joy linky at bodfortea.co.uk

Being Interviewed live on Good Morning Britain

Talking About Hyperemesis Gravidarum In The Media

I’m currently sitting on a train, heading back home to my one and only beautiful HG Survivor and reflecting on how my experience during pregnancy has completely changed the direction my life has taken.

Had you told me a few years ago that I would be appearing on national breakfast tv to talk about a medical condition I would have thought you were crazy. But that’s what I did today…

GMB 1

Photo courtesy of Emma Harris

As you may know, I have devoted the past 3 years of my life to raising awareness of the truly awful pregnancy complication Hyperemesis Gravidarum (HG). This has involved working on a book about HG (which I started way back in 2012, finding a co-author in Spewing Mummy in 2013) and working for the charity Pregnancy Sickness Support. I have worked tirelessly to promote the charity’s work, support other sufferers and survivors, and get word out that that this is not morning sickness!

GMB 2

 

Photo courtesy of Emma Harris

Which leads me to this morning, when I found myself sitting on the sofa of Good Morning Britain, talking with Dr. Hilary Jones and the presenters Charlotte and Ben about my own experience of HG. Why? Because with news of the Duchess of Cambridge suffering from HG for a second time, there has been a fair amount of media interest in the subject.

Understandably, the response to this has been varied. Some sufferers are over the moon that HG is being presented to the public in this way, having faced lots of criticism over their own pregnancy sickness in the past. Others are disappointed that it is still being described as “acute morning sickness” and that comments about trying to avoid medications in the first trimester or trying ginger are still being offered up as advice.

But here’s the thing for me… HG is making the news! And whilst we still have a long way to go, we are getting there. 

Whilst there were comments about ginger, it was made clear that this may not apply to HG (it doesn’t) and whilst there is hesitancy over prescribing medications in the first trimester, they are not being disregarded completely. We are not hearing that there is “nothing they can do” or that treatments are harmful, both of which are common messages sufferers often come across.

And whilst my short interview may not have provided the opportunity to discuss these issues in more detail (my co-author and colleague had this opportunity later on with Phil and Holly on This Morning!) it did provide media attention that is so very needed.

This Morning

Caitlin on the This Morning sofa, photo courtesy of Emma Harris

Let me tell you something… whilst I talk about HG on a daily basis, whilst I have written a book on the subject and talk to sufferers every single day, going on live tv is on a whole different level.

And talking about my own experience, well that was pretty crazy too! I tend to try and keep the focus on general experiences of HG sufferers rather than my own personal experience. This is partly because this more detached focus is needed in my work both for the charity and on the book. But it is also, in a larger part, because I have been burned too many times by people labelling me as “milking it” or a “drama queen” and I struggle with that. A lot.

I do what I do to try and help others – after all, I shall never be having another pregnancy myself, so all this work has no personal benefit to me! I do it because I do not want others to suffer the way I did, because I am the perfect example of someone whose HG went undiagnosed and untreated for far too long. Here are a few personal facts for you:

  • I was never officially diagnosed with HG
  • I was given treatment early on which made no difference and then told there was nothing else they could do, despite multiple trips to the GP, until my 5th month
  • I lost over 10% of my pre-pregnancy weight
  • I was surviving on approx. 300ml of liquid per day at my worst point
  • I was refused IV hydration or admission to hospital, despite being told I was “clearly dehydrated” by the nurse assessing me
  • I was told various things from healthcare professionals including “it’s just because you are worried about the pregnancy” and “sometimes you just have to ‘put up and shut up'”

As such, I have doubted my experience for a long, long time. I haven’t felt a true part of the HG Community of women who had multiple admissions, knew all about ketones, or were prescribed a variety of antiemetics. I felt like a fraud for a very long time… yet I clearly had HG and I clearly needed treatment. Based on the facts you cannot dispute that, and yet I still question myself. And that is the legacy that HG leaves, especially undiagnosed and poorly treated HG.

HG stole the joy of pregnancy from me. It stole my dream of having a larger family (we’re sticking at one child). And it stole an awful lot of confidence from me, confidence which I worked extremely hard to develop over many years.

Going on live tv was utterly terrifying in many ways, especially knowing just how many other women were relying on me to give an accurate portrayal of the sheer hell that is HG. I have no previous media experience of this kind (freelance writing or social media, yes, but tv and radio, not at all). And I am certainly not used to talking about it from a personal perspective. But my experience has been so profound that I know I would do anything and everything I can to create change for all those other women out there who are suffering now or have suffered in the past. And if that includes going on live tv, then so be it!

GMB 3

If you are a journalist and would like to talk to me further regarding my own experience, my work for the charity Pregnancy Sickness Support or my book “Hyperemesis Gravidarum: The Definitive Guide” then please do get in touch using my contact form or call me on 07428 119956

For more information regarding the above topics, please see the following:

Hyperemesis Gravidarum: The Definitive Guide
One Child Family
My Pregnancy Journey

You may also be interested in the following posts I wrote during the Duchess of Cambridge’s first pregnancy, regarding the importance of accurate reporting.

Hyperemesis Gravidarum: The Importance of Awareness and Accurate Reporting

 

Finding Joy in the Everyday Moments

These past few weeks have been a total whirlwind for me. It seems like pretty terrible timing that in the month when I had 4 hospital appointments (3 of them for investigations) I also completed my Nine Months Of challenge, had an auction to organise, and finished the final edit of the book I have been writing. My feet have quite literally not left the ground and I feel like I haven't stopped…

And in amongst all of that, all the major achievements that were going on (such as getting the book to the publisher and seeing lots of fundraising and awareness plans all come together) the little bits and pieces started to get lost. I began to lose sight of the everyday moments and in doing so I seemed to allow old emotions to flood back to the surface – once my focus was on everything big, the big emotions came out to play!

I found myself grieving once more over our decision to never have another baby. This has been bubbling away slowly beneath the surface for a long, long time but my ongoing health issues and the exhaustion from trying to do too much just brought home how very real that decision is. And I began to grieve all over again. None of those big achievements seemed to matter anymore because the biggest dream I ever had was never going to completely come true.

And yet, it has. I am a mother. That is all I ever wanted to be. I have a beautiful child who means the world to me and whilst my heart may still yearn for another, the boy I have is more than enough to fill anyone's heart with so much joy. 

And I have a loving husband who supports me in all I do. Together we are building a life that reflects who we are as individuals, as a couple, as parents and as a family of three. Those beautiful moments, perfect in and of themselves, are being lost when my mind is so focussed on "the big things".

That's not to say the big things don't matter. I am so proud of the work I do and the people I support. But I don't want them to be the only things that defines me. Because at the end of the day there is only so much one person can do and if you find yourself constantly striving to do more (as I so often do) then you lose sight of the smaller, more intimate things which make life so beautiful. When the stress of those big things gets you down it's the little things that will hold you afloat.

That's what I have been missing lately and as such I've decided I need to make an effort to consciously and purposefully seek out the joy in the everyday moments. The things that will remain once the book the published, and once my little boy no longer needs his mama quite so much. My life can't only be about these "big things"… as they are so fleeting. It needs to be about the little things too.

I get that now. I don't know why, but it suddenly hit me today. I was in a really deep moment of grief and truly allowing myself to feel it fully for the first time. Perhaps that is why I made this connection. Perhaps, because I didn't try to squash it down as I usually do, I was able to see it for what it was. Who knows… what I do know, however, is that this is something I really want to do.

I've been wondering where my blog is going for a very long time and now I feel like I know that too… it's for documenting all those little things that add up to make my life (and the life of my family) so special. It's for the memories and for realising that the moment we have right now is the most important. Of course there is space for dreams and lots of space for the big things too… I will never stop blogging about those. But instead of only ever documenting the big stuff, I will now share the little stuff too.

I've decided to call it "finding joy in the everyday moments". Won't you join me?

 

 

International Hyperemesis Gravidarum Awareness Day 2014 – What It Means To Me

 


HGAwarenessDay_UKurl_FB_ProfilePic

Morning all.

After the flurry of the past couple of weeks (both with hospital appointments and work) I find myself sitting here on the morning of 15th May, a date I have been working towards all year, realising I have not even thought about what I would write today. And that surprises me, because for all the work I do in the HG World and all the times I think about it, I somehow seem to have been avoiding writing a post like this. What does HG (Hyperemesis Gravidarum) mean to me?

I actually and honestly do not know where to start with this one. There is no simple answer. In many ways HG was the unrelenting thief that stole away my health during pregnancy, took the joy of carrying new life away from us, and even wiped away a lot of the joy of becoming new parents when depression hit. And that thief continues to work today as it steals the dream of having more children away from me. But HG also gave me an awful lot…

It gave me greater compassion for others, realising that pregnancy isn't the easy-going, exciting time you hope it is for a lot people. Whether it's HG or some other complication, pregnancy can be tough and we all need support to get through that. 

It also gave me even deeper determination to create change. I've always felt a strong desire to fight for those who need it, but without the absolute horror that was my HG experience I don't think I would ever have thrown myself quite so passionately and completely into anything. When I look back over the past 2.5 years since having Little Man I cannot believe just how much I have done. I threw myself almost with wild abandon into a world which needed strong voices to stand up for those who, like I myself had been during pregnancy, were unable to fight for themselves. 

I have written a book. This is nothing new, pretty much everyone who has ever known me well has expected I would write a book one day. But this was not the sort of book I expected to write at all. Prior to my pregnancy I started writing a novel… that was the sort of book I thought I would write. Not an extensive guide to a medical condition. I mean, I don't even have a medical background. It's been tough, I've had to learn an awful lot and have spent hours pouring over research and learning what it all means. And I very nearly gave up several times. But I didn't and thanks to the wonderful passion of my co-author we got there. Our book is currently with the publisher and should be out later this year!

I have also organised two handmade auctions to raise money for the charity Pregnancy Sickness Support (PSS). The first came out of the sudden idea that everybody loves to receive a handmade gift, so why not run an auction and raise money for the charity I loved and wished had been around when I was pregnant. That first auction raised just over £300 for PSS, whereas this year's is still live and will be until Sunday 18th May 2014 at 10am, so why not pop over and see what goodies we have. Some of them are items I made as part of my Nine Months Of crochet challenge – another endeavour I'd have never undertaken without knowing just how hard HG is and how worth every minute the effort was.

And finally I am now the Volunteer Coordinator for PSS. I cannot tell you how much of a privilege it is to go to work every day and work with over 100 volunteers around the country who are as passionate as I am about supporting women in their darkest hours and creating change for the women who are yet to face this journey. I speak to women on a daily basis who are in the throes of HG and I am reminded constantly of how harrowing that experience is and I know, without a doubt, that no matter how overwhelming my work is (and it really is a lot of the time!) it is worth it. Because at the end of the day, we are offering the support and information women and their families need to survive a HG pregnancy and meet their babies at the end of nine very long and hard months.

Which leads me to the greatest thing that HG brought me – my beautiful son!

I know that HG isn't really what brought Little Man to me. I would have had just as beautiful and gorgeous a baby boy had I sailed through pregnancy without any kind of sickness at all. But because it was such a hard-won battle I am constantly aware of just how very lucky we were that I didn't give up, that I didn't allow the terrible medical care I received to push me beyond my limits, that I didn't find myself making the awful decision that some women with HG feel that have no choice but to make and end the pregnancy. I'll never forget that.

But for all that, my heart still breaks at what HG has stolen from us. That awful thief which made my pregnancy a living hell and which has left us feeling like there is no way we could ever go through it again, even with the extra support that PSS provides. I think back to my pregnancy and wonder how different it might have been were the support network and website PSS has today available in 2011. Would I have allowed myself to get to my 5th month before getting any kind of helpful medical support? Would I and my husband have felt so utterly alone and terrified? Would we have made the painful decision to never have another child of our own?

I'm not saying the support makes HG easy. It does not. But it can make it easier and that is something I will work tirelessly for until the day when HG is taken seriously and women are treated promptly and effectively without having to battle for it. I'll fight so that no other woman has to make the decision to never go through the happy times of pregnancty – the joy of a positive result, the excitement of the first scan, the wonder of the very first kick, the fun in choosing a name, and the overwhelming emotion that comes with holding your baby in your arms for the very first time.

Writing that makes me cry, because quite frankly I want nothing more than to be able to do that all again. But I can't. Sometimes I am perfectly okay with that and other times it breaks me apart. It is like a grief that sneaks up on you when you're least expecting it. And I know so many other women feel that same grief. And I'll fight for them too.

Every woman's experience of HG is different. Some do it once, some do it multiple times. Some are in and out of hospital, some never get admitted even once. Some receive excellent care, others are treated in an appalling way. But one thing remains true throughout all of this… HG brings us together. Once you have experienced it you know the depths of another sufferer's heart and that brings us together in a wonderful community of support and acceptance. And that is something HG gives instead of taking away. And that's what I want to end this post with.

For the second year running, PSS has created an awareness video, sharing the photos of HG sufferers and survivors. And for the second year running it has moved me to tears. Please consider watching it as it shows so much more than I can possibly do in my words alone. The video below is only viewable on the computer, so if you are reading this on a mobile then please click this link to view the mobile version.

Thank you all for reading. If you want to know more about the work of PSS and how much is being done today to raise funds and awareness, then please do their blog at www.ninemonthsof.com

 

Want to read more?

There are some amazing bloggers out there who are writing about their own experiences of HG (or severe sickness that hasn't quite been diagnosed as HG). If you don't know where to start, here's a list of some of my favourites:

Adventures of Adam – Emma is a trustee for PSS and writes a blog about fun activities she does with her son, Adam. She has a whole host of HG Friendly Activities – things you can do with your kids that are easy to set up, take very little adult input, and are unlikely to set off triggers such as smells or movement. Her blog has been shortlisted for an award in the BiBs – you can vote for it in the Fresh Voice Category here. Emma wrote about her own HG experience here

Diary of a Charity Chick – Susie is another trustee for PSS and writes a blog about her charity work not just for PSS but also in other areas. Susie is a whirlwind of activity and never seems to stop, so it is great to see all that she is achieving! She has written a post today which you can read here.

Me, The Man and The Baby – another Emma, this time an award winning blogger who is once again shortlisted for another award for her posts about pregnancy! I came across Emma's blog on Twitter and have followed her journey since. She has written about HG today as well and you can read that post here

Mummy Whiskers – Katrina is an amazingly committed PSS volunteer and whilst I knew her before I became the Volunteer Coordinator my respect for her has grown so much since I took on the role and discovered just how much passion, energy and enthusiasm she has for the charity and the women we support. Katrina started her blog last year and it has gone from strength to strength ever since and she has written an incredibly thorough round-up post today which you can read here. 

Ruby + Lottie – Kimberley is another PSS volunteer who is also a blogger (seems there are a few of us!) and she shared her HG experience with the media (newspapers, magazines and radio) as well as on her blog. She has written a post about it today which you can read here

Spewing Mummy – Caitlin is, without a doubt, the most enthusiastic advocate for women with HG I have ever come across. She helped redesign the PSS website, started the support network, runs a blog (which has been shortlisted for not one but two blog awards this year! You can still vote for her in the Commentary and Campaigns category in the BiBs here) and helped me write the book about HG. She is, and always has been, my inspiration and I am constantly amazed by how much she has achieved and continues to achieve for women with HG. I am so proud of her and would recommend you follow her blog if you're currently suffering from HG. 

Feeling Guilty – as a mother, a wife, and a friend

I hadn’t planned on writing so much about how I am struggling right now, but it seems as if writing about these things is more important than I realised.

This past week I have written two posts about my health and each one has received over 200 hits – my blog never receives that much interest in one day, let alone twice in one week! And this has given me the confidence to know that it’s okay to use this space to share how I’m feeling. And right now, sharing how I am feeling is so important because I need to let it out somewhere or I might explode.

So let’s start with guilt.

It’s not a pleasant feeling is it? It’s certainly not very helpful at times. But it is very, very invasive and creeps up on you at the worst possible moments, doesn’t it?

This past week I have really struggled with my physical health, and my emotional and mental health has suffered too. I have felt guilty over pretty much everything that has happened.

I’ve felt guilty for snapping at Little Man when he has jumped on me or dragged me off the sofa when I’ve been feeling really poorly.

I’ve felt guilty for not being able to remain strong and clear headed when TJ was changing meds and feeling out of sorts himself

And I’ve felt guilty for having to miss yet another friend’s birthday because right now it feels like all I am ever doing is saying, “no, I’m sorry, I just can’t make it.”

I felt guilty for not taking Little Man to toddler group because I felt so poorly.

I felt guilty for not cooking nutritious meals from scratch and making my family eat easy, convenience food.

And I felt guilty for missing my brother-in-law’s birthday because it completely slipped my mind.

Quite frankly, I feel guilty as a mother, I feel guilty as a wife, and I feel guilty as a friend. In each of these roles I am falling short because I am feeling so ill I just cannot give what I want to each one.

And that’s hard for me to take.

I was talking to a friend this morning about the way forward and whether I should be considering more drastic action to deal with my symptoms and I realised just how much this is taking over my life. A year ago it was bad, now it is unbearable.

I find myself in a familiar place, except last time I was here I wasn’t a mother and I remember very clearly saying to TJ that I didn’t know if I would ever be well enough to have children and maybe we weren’t meant to be parents.

And I feel immensely guilty about that! I have the most beautiful son, who is the light of my life, and I cannot give him what he deserves because I am so ill. And that breaks my heart.

The past two years have been spent coming to terms with the fact that we cannot have another child… and yet suddenly that means nothing. Right now my focus is on what I need to do to be well enough to give the child I have the best of me.

Don’t get me wrong – my son is loved, he is cared for, he is thriving in all areas. I am not failing him in any way other than the fact that I want to do more. I want to be well enough to plan activities and trips away to see family and friends, and actually be able to do them. Right now I just cannot do more than what I have to do. I can feed him, clean him, clothe him, play with him, read to him, teach him and love him… but at the end of all that I am so exhausted I don’t know how to recover.

And there are so many things I want to give him. So many things I want to give my husband. And so many things I want to give myself. I want to complete the HG book. I want to devote as much of my career to changing things for other women, so that they never have to feel these emotions. And I want to have a life where my health doesn’t dictate what I can and can’t do. Where we can invite Little Man’s cousins and friends to stay or we can plan a holiday of our own without thinking “will I be well enough to do this?”

And right now I know roughly what I need to do to get there, but the path is a scary one. It means considering more invasive surgery than I have ever considered and that terrifies me. But I think I’m at the point where I no longer want to live like this – I want to see what life is like without it hanging over me.

I’ve spent more years of my life controlled by my health than I have without these health issues, and that is a fact I want to change sooner rather than later.

And hopefully that will stop the guilt too…

Let’s Talk About Women’s Health: Endometriosis and Me

It feels like I haven't blogged about Endometriosis in a very, very long time. Too long in fact, because right now I seem to be having major issues with it all again.

I think the last time I posted properly about it was way back in 2010, before I fell pregnant. I commented on it once or twice during pregnancy and then again last year, but to be honest I have been not-so-blissfully unaware of its impact on my life for quite some time. And that's not to say it hasn't been having an impact, but rather other things have distracted my attention from it.

But right now I seem to be living in hell and I'm beginning to think it may be connected to the Endo again (rather than, as I have been woefully saying, lingering affects from being so sick during my pregnancy).

Perhaps this sounds like I am being a bit of a drama queen, but bear with me…

I started suffering from nausea for 2 weeks in every month from the time Little Man was 3 months old. I saw a gynaecologist about this and we discussed my symptoms. He told me that as I had no pain and only nausea it couldn't possibly be the Endo, even though nausea is a very typical hormonal symptom for me. That was summer 2012.

By summer 2013 I was starting to get those niggling pains… the ache around the ovary, the cramping around the womb, the stabby pains in places you do not want to mention. They weren't regular but the fact that they came (along with spotting) whenever I did anything strenuous like scrubbing the kitchen floor or having the odd romantic evening with my husband, made me think things were ramping up a level.

What I failed to remember though was that when I had my last laparoscopy in 2009 I wasn't in huge amounts of pain. I had pain, but not unbearably so – it was all the other symptoms that got me. The nausea, the exhaustion, the random pains that had no pattern. I fell into the ridiculous notion that without pain it couldn't be the Endo (as prior to my first laparoscopy in 2005 pain was the major symptom I had), but I have always known pain isn't a direct indicator of the severity of Endometriosis and as I wasn't having periods thanks to the Mirena I wasn't having that same severity I had suffered from before. I knew this in 2009, which was why I pushed for the laparoscopy when they discovered stage 3 Endo which included my uterus being attached to my bowel. No wonder I felt awful!

But for some reason I did not make these same connections last year. I think I was so concerned with raising awareness of Hyperemesis Gravidarum as that was still so fresh in my mind, that I just assumed the dietary issues I was having were left over from that (after all, even my GP said all that dry heaving could have caused a hiatus hernia!) And then, of course, I was so worried about TJ's symptoms that I never really stopped to consider how bad mine were getting, nor how quickly they were progressing…

But here I am, in 2014, in a very familiar place. I'm exhausted, I am in discomfort, I am sick, and I am losing weight. All of these are such telling signs that something is wrong and I cannot believe I have missed them until they got so bad I had no choice but to notice them.

I guess I just always had something else to blame. In September I had to take two courses of antibiotics which severely upset my stomach – so I thought it was that. In October I started a new job so I thought the stress of that was making me sick. In November I went to a conference and I thought the change in routine upset my system. In December I had the most horrific "virus" and yet now I don't think it was a virus at all… I am starting to worry it was connected to adhesions around my bowel.

In January I had yet another virus, and this time TJ had it too so I just thought it was that lingering on a bit too long. But over the course of December and January I lost a stone in weight and I have yet to put it on. The only other times I have been this small in my adult life has been when I was very sick with the Endo or very sick with Hyperemesis!

Since January I have felt sick most days. For the past few weeks I feel sick without fail 30-60 minutes after I eat. Without fail! That makes eating very challenging to say the least. No wonder I can't seem to put the weight back on.

I am taking medication for the sickness, medication for reflux, and medication for IBS and I am still this sick. It is getting to the point now where I don't know how I am continuing to cope.

I don't know how I am doing it, but I do know why I am…

1. I have no choice

2. I don't know any different

3. I will not be beaten!

 

But that doesn't change the fact that I am really struggling and I need to get on top of these symptoms soon. I am lucky that I now work from home so can at least work around feeling poorly (I have made several phonecalls from bed!) That goes a long way towards helping me cope but the symptoms are still extremely troublesome.

So my difficulty now lies in the way forward. I have an appointment to see a gastroenterologist in April but I am unsure whether I need to see a gynaecologist instead (or as well as). I don't know who deals with these things – I think the Endo is to blame because I have some very telling signs, and yet it is severely affecting my digestive system which has not been great ever since my diagnosis of Endo, so perhaps I need to see both. 

All I know is that I can't keep going on like this. It is for this very reason that we know we can never have another child. For us it is not the Hyperemesis that stops us doing it all again but rather my health outside of pregnancy too. We were so lucky to fall pregnant naturally and have Little Man but we can't do it again… it takes all my energy just to give him a good life, I couldn't split myself between two children. And it hurts me to say that but it is true.

I think I'm heading towards surgery at some point in the near future but I don't know what kind and that is scary too. And this is why I need to start blogging about it again… I need a place to share these feelings, both for myself and for all those women (1 in 10!) who experience the hell of Endometriosis. If I can ignore my own symptoms and doubt myself after all I've been through and all I know about it, what chance have I got of getting anyone else to recognise them and fight for better treatment? 

Our Consultation with the Neurologist

You may remember that in November last year I wrote about us finally seeing a GP about TJ's sensory disturbances (And Now We Wait). He's been having pain and some sensory issues since 2008 but in the past 12-18 months they have progressed quite significantly and in October TJ went for nerve conduction tests and then we followed up with blood tests and a lot of waiting…

The GP finally agreed to refer TJ to see a neurologist in January and to speed up the process we decided to go private for the initial consultation. That was today. It feels like a long time coming.

We discussed all the symptoms TJ has been experiencing, all the pain (which keeps him awake at night and stops him from doing a lot of things he'd like to do) and all the sensory stuff (like not being able to tell if the washing is still damp when taking it out of the dryer). And we discussed the various medications he has tried in order to deal with these symptoms, the tests he has already had, our fears over what it might be and the affect all of this is having on TJ as an individual and us as a family. And the consultant took it all on board with complete sympathy and sincerity, which was very welcome.

He carried out a thorough physical exam and then sat us down for a chat – to say we were nervous is an understatement, but we were ready to get some answers. The problem was there are currently no answers and may never be any…

According to the neurologist, it may be that we never find a specific cause for TJ's symptoms. In fact his actual words were, "if I were a betting man I would wager that we'll never know exactly what is causing these symptoms". However, the consultant also put a very big emphasis on the fact that this does not negate the fact that TJ is suffering from some rather extensive symptoms and managing these is a priority.

He explained that TJ's symptoms do not suggest anything major such as MS, cancer, diabetes etc, which we would have expected to have progressed much further and faster than they have, and whilst that doesn't rule out things like MS completely it makes them highly unlikely. He also explained that a lot of the tests look at large fibres in the nerves, whereas a lot of people have issues with the small fibres which are rather more difficult to study and find a diagnosis for, and this may be where TJ's issue lies. Although apparently TJ's symptoms are rather more extensive than the typical small fibre neuropathies.

The consultant was very sympathetic in the fact that not being able to diagnose the problem can be frustrating, but explained it is still a good sign that it isn't anything major which would likely progress further and further as time goes on. This is hopefully as bad as it gets and our aim now is to work on finding the best way to manage the symptoms.

To be honest we had already considered this as a possibility. TJ used to work on a neuromedical ward and so has already self-eliminated a lot of the more typical conditions. He'd also eliminated some of the less common conditions, purely based on the symptoms he knew these would cause had he been suffering from them. But it is a relief to hear that from a specialist in the field. It is also a relief for TJ to hear a specialist qualify what he is going through, as all too often it is far too easy to question what you're experiencing and believe it may be "all in your head" even when you know that is not the case. 

So our next step is to go back to the GP and discuss the suggestions made by the neurologist with her. He mentioned that we could go down the route of CT scans and a lumbar puncture, but as these may not provide any further clues to a diagnosis we may decide we'd rather not go down that route. It is something to discuss with the GP. He also said that we can discuss the treatment options with the GP and start with the one that seems the "least undesirable" to us first (which worries me slightly as to what he is going to suggest, but we'll wait and see).

All in all we are both very pleased with the consultation. The neurologist was extremely sympathetic to what has been going on, how TJ has had to change careers twice because of this and how it is holding us back as a family as well as limiting TJ in what he can do. Hopefully we can find a treatment plan which works far better than the few suggestions offered by the GP so far and can move forward with less pain and more freedom.

But for now we have a little more waiting to do… 

Time To Talk Day

Well, it's snuck up on me and I haven't really planned much for today, but I couldn't let the day go by without writing at least a quick blog post.

You see, today is Time to Talk Day - an opportunity to talk to people about mental health, to debunk the myths, to be open and honest, to end the discrimination. And that is something we should ALL be talking about!

I'm sure you know me by now – I am a chronic over-sharer and have been very honest about my own and my husband's battles with low self-esteem, anxiety and depression. So what I'd like to do is share some of my most honest posts with you today, the ones which really go to the depth of that despair and come back out again.

But first I'd like to put a few short points across, things which I have learned along our journey with depression and anxiety:

  • Mental health issues can affect anyone, at any point in their life. 
  • You can become completely debilitated by a mental health issue, whether in just one area of your life or every area of it. And it can often creep up on you seemingly out of nowhere.
  • It can be incredibly terrifying to admit to someone you are struggling – the stigma can feel too hard to bear. And yet there should be no stigma at all!
  • Some people will always try and beat you when you are down (I know from experience, having trusted someone only to have it backfire and lead me to resign from a job I loved due to sneaky discrimination and underhanded bullying). 
  • But for all those who would beat you, there are far more who would support you if only they knew how to do so – this is why honesty is so important.
  • It can be incredibly hard for people to understand what you are going through and why you act (and react) in certain ways. Some people will never understand, but true friends will try to understand, and those are the friends you will love forever.
  • You will lose some friends… and that is truly awful. But you will gain many more in completely unexpected places. 
  • None of this is your fault. Guilt can eat away at you, and fear will try to make you let it eat away the very last bits of strength you have. But if you're lucky, you'll have people by your side to help you through those darkest hours. 
  • There is always someone to turn to – but finding them can be the hardest thing in the world when you aren't thinking straight. And this is why, even if you've never suffered from any mental health issue, compassion and understanding is crucial to helping those who need you. 
  • Nobody is isolated from mental health issues – even those you think are confident and happy could be falling apart inside (again, I have survived long days smiling and greeting customers, only to spend the night crying in despair before plastering on my smile and doing it all again the next day)
  • Once you have faced mental health issues and you have survived (and by survived I truly mean simply placing one step in front of the other and continuing because that can be the hardest thing of all) you will find an inner strength you never knew you had. 
  • Mental health issues threaten to destroy all your hold dear, all your hopes and dreams… but sometimes, just sometimes, what you actually get is so much better in the end. But in those moments of despair being told this is not very helpful at all – sometimes you just have to ride the wave and start afresh in the morning!
  • Some people will battle mental health issues their entire life, others will have "blips" but each and every one needs support. And that is why it is time to talk.

And now, here are some of my more honest posts from the past. They all have aspects of the mental health issues and battles I have been dealing with, though none of them really focus on them completely. And I think that is really significant, because very rarely do we see these things as completely separate from the areas of our lives they are affecting (or being affected by). You don't have to read any of them, but if you want to they are there (oldest first). 

I Hope You Dance

Pregnancy: Your Thoughts…

Why I Write: And a Tribute to my Cousin

Emotional Fallout

Learning to love who I am

The Hardest Decision

We're Getting There…

Realisations and The Beginnings of Acceptance

And now we wait…

Today we had an appointment with the doctor. It was to discuss the sensory disturbances TJ has been experiencing over the past year or so, sensations which are getting worse (not better) and becoming more and more unbearable. They have come after many, many years of intense chronic pain, which has had a maasive impact on TJ's personal life and our life as a family.

To explain how big this has been for us, I need to backtrack to the beginning. So bear with me.

In 2008 TJ and I moved in together. He had already been suffering from painful arms and hands, which meant he was struggling to keep up with the physical demands of his plumbing work. Just a few weeks after we moved in together he lost his job. It was hard. We were living in Cambridge on my incredibly low income (childcare does not pay well!) and so the hunt was on for us both to find new jobs. I moved to the Tourist office, easing the pressure off us a little bit, and Tim eventually retrained in healthcare and took on a role which was far more supportive than physical. 

Things should have picked up, but I was going through my own health issues and in 2010 I quit my job due to discrimination over my health. We were back to a single income and had to relocate to survive – and the pressure fell solely on TJ to provide for us, all while he was in intense pain himself. It was tough!

Between the two of us, health issues have severely limited our financial stability. Changing careers has meant TJ has repeatedly had to take a pay cut to start at the bottom of the ladder. And I have been unable to work full-time hours since 2010 due to first my severe pregnancy sickness and then balancing work and childcare for Little Man. We've struggled more than we would care to admit, and the financial stress is just the tip of the iceberg when looking at the difficulties we've had to face together.

The worst, for me, has been seeing TJ suffer from depression due to a combination of the trauma from my pregnancy and the fact that being in pain every single day just wears you down. I've been in that place myself and I know it is an awful place to be. And the reality is I would rather be there myself than see someone I love so much fall into that hole. There is nothing I can do to stop the pain and that hurts me more than I can say…

In fact, seeing TJ in pain and struggling with even simple tasks just breaks my heart. I've dealt with pain before and know my own limits and how I cope with that. But seeing someone else in so much pain is a whole new experience for me and one I find incredibly hard to deal with. Am I supporting my husband enough? Am I giving him what he needs to get through this?

I feel like I failed in that last part quite spectacularly these past few months. I was so caught up in dealing with all the other things in our life (issues with childcare, financial worries and needing to find a new/second job etc) that I just didn't stop to wonder why certain things were happening. I'd get cross at TJ for always leaving bits of food on the plates he washed up or for putting clothes that were still damp into the wardrobe. It just seemed like he wasn't trying. But what was really happening was that he was struggling to actually feel what he was doing… and once he told me that it scared the hell out of me!

We were in the car one day and he suddenly blurted it out. "My hands feel numb… I have an intense itching in my arms, and pins and needles in my hands, and I can't quite feel the ends of my fingers". My mind went into overdrive thinking of all the things that could cause this, I can tell you. 

We went to see the doctor not long after that. We discussed the fact that over the past 5 years TJ has tried multiple painkillers, all to no effect, and that he'd had to change careers twice and was now struggling in day-to-day things and his symptoms had begun to progress from pain to sensory disturbances. At that point it was just his hands, and so he was referred to the hospital for nerve conduction tests. That appointment was 19th September (Little Man's birthday) and his nerve conduction test was on 16th October (the day after our 3rd wedding anniversary and my handover day for my new job). Let's just say there was a fair amount of emotional confusion on those days between both happiness and worry, relief and concern. It was pretty intense.

But it didn't stop there. The following week TJ's discomfort continued to increase and he admitted that he had similar sensations in his feet. That was when I really panicked. If it were just in his hands, maybe it could be something simple like Carpal Tunnel… but if it were in his feet as well, well then we could be looking at something far more serious. 

We saw a nurse practitioner that week out of desperation. She confirmed our fears – this could be neurological. She mentioned a wide range of things that could cause this kind of pain, none of them very reassuring. She advised us to make an appointment to see the doctor again. And so that is what we did…

Today we saw the doctor. She said TJ's symptoms do not follow any "textbook" examples, but then not many people's symptoms do to be fair. She's ordered extensive blood tests (tomorrow) – TJ has had blood tests done twice before but this time she will be checking for things which could affect the nerves. His nerve conduction test results have yet to come through, so she is chasing those. He sees her on 14th November for the results from both. At that point we decide whether he is referred to neurology or not.

And until then we wait. We wait very impatiently to find out what is causing so much pain and discomfort that TJ is struggling to do simple tasks like wash the dishes. We wait impatiently as the discomfort keeps him awake at night and gradually breaks down his barriers and his mood plummets. We wait impatiently until the 14th November when we still may not get any answers. And I won't even be there to go with him as I'll be at a conference. 

I'm not sure my heart can wait… my husband is hurting badly and there is nothing I can do.

Today I’m in Tears… International Hyperemesis Awareness Day

HG Awareness
Well, the title says it all I guess… today (May 15th) is International HG Awareness Day, and it has hit me in a way I really didn't expect it to.

It's been a really tough time for me, coming to terms with my pregnancy experience and the choice we have since made to never have any more children. And just when I think I have a handle on things, when I think I have found peace with it all, something crops up to remind me that there are still times when I shall wish with all my heart and soul that things had been different.

The other night I had a dream that I gave birth to two more children. I remember dreaming some very specific things, like making myself cherish the bump because I knew I would never again get that opportunity. And when I woke, I felt empty. It wasn't real and it never would be. And that hurt more than I can tell.

But then, I remembered why we made this decision. I saw the photos of women during their HG hell, and I heard the awful way in which women and their families are still being treated. And it reminded me that I never, ever want to have to face that again. It's not just 9 months of your life, these things stay with you a very long time. 

But still… talking with all the HG sufferers and survivors this week about their experiences and how much the support means to them, made me realise just how strong we all are. We've survived hell and some very brave women have done it more than once. They are far braver than I am!

Which means that instead of writing a long post about why I am so passionate about supporting these women and their families, I am going to turn it over to them to show you. If you do just one thing today, please let it be to watch the video below. It is the greatest testament to the strength of these women and the reason why I will not stop campaigning for the charity Pregnancy Sickness Support until every woman gets the treatment and support she needs, and more importantly, deserves. 

Thank you.

 

Video credit: This video has been created by Emma Edwards, a volunteer for Pregnancy Sickness Support.

Please remember that my eBay auction is still running and is full of a wide range of handmade items. 100% of all the money raised from the auction will go directly to Pregnancy Sickness Support. 


The following posts have all been written to share very personal accounts of what HG is truly like. Please consider reading some of them!

Expectations Before Falling Pregnant Versus Reality

Ginger is Not a Cure: My Hyperemesis Hell!

 

The following is a poem written by someone I know through Pregnancy Sickness Support

 

PLEASE NOTE:

HG Awareness Day is all thanks to the HER Foundation, a US based charity that has been working tirelessly to support women with Hyperemesis Gravidarum through research and education. During my own pregnancy in 2010, it was the HER Foundation I turned to for support as at that time I did not know Pregnancy Sickness Support existed. The two charities are in regular contact and work together to ensure that women either side of the Atlantic receive the best possible support and care. So whilst my own efforts are focussed mainly on supporting women here in the UK, I feel a great need to also support th HER Foundation in any way I can.

Lent: Giving Up Social Network

This morning I read a new blog by someone I know on twitter. It's called Mummy Loves Cake. And today's post gave me some food for thought…

Sacrificing Social Network is a pre-Lent post about the choice to spend the next 40 days without (or with less) time spent on places like Twitter and Facebook. It's a great read and one I think many of us who frequent these sites can relate to. I knew I was spending more time checking updates on my phone than I really should, but it wasn't until my phone was stolen at the beginning of the month that I realised just how much more time I had without it!

I've talked about cutting off social media before and my thoughts on this are still very much the same: although Facebook and Twitter are great connectors, they are also great time-wasters. I have less time than ever with working part time, writing the book and fitting both in around my family life, so I don't want to waste time really. But giving up social media is a scary prospect. After all, I am trying my hardest to campaign for Pregnancy Sickness Support in various ways and am also trying to promote awareness of the book I am writing so that when I finally get my book proposal completed I can include the advantages of taking me on as a writer (i.e. I have a sound online presence). So cutting off an avenue like Twitter is a major thing!

But more and more I have been feeling lately that the time I spend reading updates on Twitter and following links takes up the time I could be spending on here (the blog), documenting our life as a family and making a memory book of sorts for us to look back on. And it certainly takes up time I could spend out and about with my little family. Twitter may only give you 140 characters, but with so many people writing regular updates, it can be hard to keep up.

I have missed important blog posts from bloggers I truly love because of the overflow of other information popping onto my screen. And I want to change that, to return to the more intimate nature of blogging and actually spending time emailing, hand-writing notes, and actually calling people.

So I'm making a concerted effort, for Lent, following the inspiration I found this morning. I know that cutting off Facebook and Twitter entirely could be totally counter-productive. They do have their uses. So I shall check in to Facebook once a day (at most) to check no one has messaged me. But nothing more. No reading timelines or scouring group feeds. This is something I have been working towards for a while anyway, so won't be a big deal. As for Twitter, I shall check my emails for any mentions or direct messages, but other than that I shall try my hardest to stay away. It will give me a good break!

Yesterday I updated my blog reader. I took out blog feeds that I just never check and made sure it was only the people I truly want to follow. I know it sounds harsh, but it was a good feeling to get back to basics. I'm making time to keep up with those few people I care about and getting rid of the ones I just always find myself skimming. 

This, on top of changes to my working hours, changes to TJ's working hours and the fact that we are giving up our cable subscription at the end of this month and not installing the aerial straight away will hopefully mean a better balance for us as a family. It'll be an interesting experiment, if nothing else!

So tell me… do you find yourself sucked into social media far too easily? And are you giving anything up for Lent?

Finding Joy…

This week has been awful.

Well… the beginning of it anyway.

And in saying that, I realise just how long we hold on to the pain and sadness sometimes.

When life beats you down, time and again, it is easy to lose yourself in fear.

I know, I have done it many times.

Finding joy doesn’t mean ignoring the pain, or losing it altogether. But it also doesn’t mean having to wait until everything is hunky dory before looking for that joy. Because life sucks sometimes, doesn’t it?

And this week it felt like it sucked big time. And the pain and sadness seemed immense. But I wanted joy.

And so I went on a search for happiness… for joy… for the simple things in life… for the light in the darkness.

It led me to create a pinterest board called “Happiness is…” You can find it here.

My favourite things about creating this board are the simplest ones…

“Happiness is… staring at the moon”

“Happiness is… being silly once in a while”

“Happiness is… a hug”

I still feel sad about various things, but it has reminded me to appreciate the simple things that light up my life.

Today “Happiness is…” listening to my little boy singing with Grandma and Grandad on the phone. It’s watching him find the greatest pleasure out of being given a pen and allowed to “help” mama fill in her puzzle book. It’s seeing how much everything is a wonder to him.

He feels the greatest joy at the simplest things. He also throws the biggest tantrums when simple things are beyond his experience. Great joy does not negate great sadness, but it does make that sadness ease away.

So tell me, how would you complete the sentence “Happiness is…”

Finding Balance

I don’t know about the rest of you, but I find it increasingly difficult to find the right balance between all the demands on my time. I feel like I never stop somedays and sometimes I think “I just want to drop everything and have a day off”. Well, not everything… but there are more demands on my time than needs be, and it’s finding the balance between keeping things going because there is a need or real desire to do it and doing something because it has just become habit.

So a lot of the time I find myself prioritising. Some things always end up at the bottom of the pile. And often that bugs me. Sometimes they are things that I really care about, but they just cannot be a priority. Other things that always get done, are a must (like laundry) but seem neverending and always take priority over things I wish I had time to do.

But that is as it should be. I know it is. I have a young family and I knew what I was signing up for (well, mostly). Yet that balance still seems to elude me.

My priorities at present are 1) TJ and Little Man (and all that comes with them, such as feeding and clothing them!) and 2) work, because after all that provides a much needed boost to our income. Everything else kind of falls into the “whenever there’s time” category, which isn’t very often.

And I’m okay with that, truly I am. It’s just there seems to be so many things in that category and my frustration comes from the lack of priority within it, or any sense of balance. Those moments of “oooh I have a little bit of time” are filled with the question of “what do I want to do the most?” I have a whole list of things that need doing (such as the book on Hyperemesis), things that I want to get done (such as campaigning for Pregnancy Sickness Support), things I have agreed to do (such as the craft blog on iVillageUK) and then finally things that I want to do, such as relaxing in a long hot bath, reading a book, or finishing that crochet blanket I started months ago!

It seems that, no matter how many things I cut out of my life (and I have cut out a lot of things this past year), I just never gain enough time back. To be fair, priorities 1 and 2 (family and work) take up most of my time and the rest just nags away in the back of my mind most of the time, but nag it does.

We’re making some more changes in our life this month. TJ starts a new job with regular hours. I am switching from 4 afternoons working out of the house to 1 full day and 2 afternoons, to try and make things easier with childcare. This has the added bonus of giving me more time at home with Little Man (because the days I work are taken up with making sure he has slept at the right time in the morning, is fed at the right time, is taken to the childminder on time, and I catch my bus on time! We are quite literally ruled by the clock the days I work). We’re also getting rid of our cable subscription (although it appears we have a working aerial so we won’t be totally unable to watch tv if it gets too much!)

All these changes are made in hope of finding more balance, for each one of us and as a family. But I have no idea if it will work. It is all trial and error, and I do believe that for some years yet this is going to be a losing battle for me!

Tell me, how do you find balance?

Hyperemesis Gravidarum: List of Support Groups, Charities, Blogs and Resources

I thought it would be helpful to create a "go to" list of resources that can offer support, information and personal accounts of what it is like to suffer from Hyperemesis Gravidarum.

These are all groups, blogs and resources I have come across in the past year while researching for the book I am writing. If you know of any others that I have missed, or have a blog of your own, please do send them to me via my contact form or on twitter

 

Charities and Support Groups

UK Based

Pregnancy Sickness Support is a national charity here in the UK that aims to inform and support women, their families, and those involved in their care. They have a wealth of information on their website and run a volunteer support network and a telephone helpline. 

Pregnancy Sickness SOS is another UK based site providing information on HG.

US Based

The Hyperemesis Education and Research Foundation (Her) is a US based site which also has a huge range of information, research and support available for sufferers, their families and healthcare providers.

The Ayden Rae Foundation is an organisation that is fighting hard to aid the discovery of a cause and cure for HG. 

Beyond Morning Sickness is a site dedicated to raising awareness and sharing the stories of HG survivors. There is a book of the same name, which many HG sufferers read and rely on, and which was the inspiration for producing a UK based book (which is what I am currently working on). 

Canadian

The Motherisk Program in Canada carries out lots of research into pregnancy complications and possible treatment options for them, including HG. Some of their research is included below.

European

Steunpunt HG is a Dutch website offering support and information to HG sufferers.

 

Support Groups

UK Based

Pregnancy Sickness Support (Hyperemesis) UK (Facebook Group) 

Partners' Pregnancy Sickness Sickness Support (HG) UK (Facebook Group)

Mumsnet Hyperemesis Support Board

BabyCentre Hyperemesis Group

US Based

HelpHer Forums

 

Resources

NVP and HG "Cheat Sheet" 

I wrote this "cheat sheet" as part of the book and have reproduced it as a PDF download for easy access. 

Diary for NVP and HG symptoms

Pregnancy Sickness Support have put together this fantastic printable weekly diary for monitoring symptoms of nausea and vomiting during pregnancy. 

 

Blogs

Instead of splitting this group according to country, I have decided to make two groups: "current blogs" (those which have been updated recently) and "archived blogs" (those which have not been updated in the past 3 months, but may still be of interest). 

Current Blogs

HG Survivor

Beadzoid

Mother Eartha's Blog

My Story of Hyperemesis

Knocked Up Knocked Over

Hyperemesis Gravidarum: Through The Fog 

The Leaky Boob

Spewing Mummy

 

Archived Blogs

Midwife to Mum

HG Sucks

My Friend Zofran

HGDad

Hyperemesis Gravidarum: A Journey Through Our Second Pregnancy

Hyperemesis Heroine

Baby You're Making Me Sick

 

Twitter Feeds

The following people on twitter are very active in the HG community

@HGSupportUK 

@AydenRaeFDN 

@Jenni_Wynne 

@pwynne82 

@JaynieN 

@Angeline1611 

@pandabear_rocks 

@KnockedUp_Over

@MumtoAandB

 @HGHusband

 @Mum2LilyandPops

@lauren___d

@Comfortably_Mum

@midwifetomum

 

As with anything, this is not an exhaustive list. Please, please do let me know if you have any other links I can add to this post!

Hyperemesis Gravidarum: The Importance of Awareness and Accurate Reporting

I’m pretty sure that most people have heard the news about the Duchess of Cambridge being admitted to hospital for Hyperemesis Gravidarum (HG). I’m also just as sure that many are thinking “oh just get over it!” because that is the reality of HG, hardly anyone knows what it is or understands how truly awful it is. And unfortunately, with the media using terms such as “acute morning sickness” and relying on the limited knowledge of doctors who have no specialist experience in this area (no disrespect to them, it’s just it is a very specific area), this isn’t going to change very fast.

And so, as a HG survivor who has dedicated most of the first year of her child’s life to researching about the condition, writing a book about it, networking with others and raising awareness, I feel it is time to turn over my blog for a while to the subject.

So let’s start by passing on my sincerest best wishes and support to the Duchess. Hyperemesis is a truly awful condition, terrifying in its severity, isolating in the fact no one understands what you’re going through, and a battle from start to finish. If, like most of us, her symptoms peak between around 7 and 10 weeks, it is going to get worse before it gets better, and could be with her throughout the entire pregnancy. And she has to do this all in the public eye. My heart goes out to her, as it does to any woman suffering from HG!

So what is it?

Well, for starters, it is a severe form of Nausea and Vomiting of Pregnancy (NVP). The term itself basically translates as lots of vomiting (hyperemesis) in pregnancy (gravidarum). It is not “morning sickness”, in fact we need to get away from using that term altogether. It is an outdated term, that trivialises the condition, not only for those with HG but also those with mild-moderate symptoms.

NVP affects up to around 80% of all pregnant women in some form or another. Perhaps this is why there is so much judgement and so little support and understanding for those with more severe forms. If your experience of NVP is that you “felt a little queasy” for a few months  you may find it difficult to imagine the severity from which some women suffer. However, around 30% of women require time off work to cope with their symptoms, and 35% have symptoms that are of clinical experience. So whilst only around 1% of women suffer from HG, NVP is still nothing to be laughed at!

For those 1% who do develop HG, their pregnancy can go from joyous to a nightmare in a matter of days. The severity of sickness doesn’t just build up slowly, it can go from next-to-nothing, to manageable, to totally debilitating within a week. So for all those who wonder how the Duchess could have been so very active and well last week and hospitalised this week, that is why.

Thankfully, since the invention of IV hydration, HG is not the life-threatening illness it once was. However there is still a major need for treatment. Women with HG become dehydrated easily, they can suffer from electrolyte imbalances which can lead to further complications, and they can lose weight extremely quickly. HG is often described as being present in women who lose more than 5% of their pre-pregnancy weight, but many women lose double this amount and more.

IV hydration and anti-emetic medication can help to control the symptoms and make eating and drinking more manageable for the HG sufferer, but unfortunately due to so much misinformation and a fear of treating pregnant women, many have to fight for the treatment they need and deserve. This should not be the case! There is plenty of research out there that includes safety data of various anti-emetic medications and the importance of timely treatment. I have included links to some of these at the bottom of this post.

There is a lack of awareness in the medical community. Many GPs and midwives continue to treat women with HG as having “morning sickness”, giving out the usual advice of “eating little and often” and trying “ginger”, neither of which are helpful for a woman who is vomiting multiple times each day and unable to function. There is a real need for better education on the condition, and it seems there is also a very real need to raise awareness of it in the media as well.

I feel both sorry for the Duchess and relieved that it is finally being covered by the media. But we have a long way to go. Even the BBC is using the term “acute morning sickness”, and this needs to change. The charity Pregnancy Sickness Support, who I am closely connected to, are working tirelessly to change this. But we need help. We need you to retweet, to reblog, to share on other social media sites, to work with us to effect change.

Please don’t just read this news and think “poor Kate” and then forget about it. HG affects a woman for life. Antenatal Depression, Postnatal Depression and Post-Traumatic Stress Disorder often accompany a HG pregnancy. Women and their families affected by it are left with the awful decision of whether to face another pregnancy to expand their family or choose not to have any more children. It doesn’t end after 9 months. So please, read about it and spread the word.

For more information check out:

Pregnancy Sickness Support

Hyperemesis Gravidarum: List of Support Groups, Charities, Blogs and Resources

My info page on Hyperemesis Gravidarum

The Hardest Decision (my post on choosing not to have another pregnancy)

please feel free to email me your own links to add!

References:

Asker C, Nordstedt Wikner B, and
Källén B. 2005 Use of antiemetic drugs during pregnancy in Sweden.
European Journal of Clinical Pharmacology 2005; 61: 899-906

Christodoulou-Smith J et al. 2011
Posttraumatic stress symptoms following pregnancy complicated by
hyperemesis gravidarum. The Journal of Maternal-Fetal and Neonatal
Medicine

Ebrahimi et al. 2009 Nausea and
vomiting of pregnancy: using the 24-hour Pregnancy-Unique
Quantification of Emesis (PUQE-24) scale. Journal of Obstetrics and
Gynecology Canada 31 (9): 803-7

Einarson et al. 2004 The safety of
Ondansetron for nausea and vomiting of pregnancy: a prospective
comparative study. BJOG: an International Journal of Obstetrics and
Gynaecology 111: 940-943

Farrell N. 2008 Hyperemesis
gravidarum: how midwives can help. The Practising Midwife, 11: 12-14

Gadsby R and Barnie-Adshead AM. 2011
Nausea and Vomiting of Pregnancy a Literature Review. Pregnancy
Sickness Support Website

Ismail SK and Kenny L. 2007 Review
on hyperemesis gravidarum. Best Practise & Research Clinical
Gastroenterology 21 (5): 755-769

Jarvis S and Nelson-Piercy C. 2011
Management of nausea and vomiting in pregnancy Clinical Review
article. British Medical Journal, 2011-12-23, 342; 1407-1412

Koren G et al. 2005 Validation
studies of the Pregnancy Unique-Quantification of Emesis (PUQE)
scores. Journal of Obstetrics and Gynaecology 2005; 25 (3): 241-244

Koren G. and Maltepe C. 2004
Preemptive Therapy for Severe Nausea and Vomiting of Pregnancy and
Hyperemesis Gravidaum. Journal of Obstetrics and Gynecology 2004; 24;
500-503

Matok I et al. 2009 The Safety of
Metoclopramide Use in the First Trimester of Pregnancy. The New
England Journal of Medicine 2009; 360: 2528-35

Mazzotta P and Magee LA. 2000 A
Risk-Benefit Assessment of Pharmacological and Nonpharmacological
Treatments for Nausea and Vomiting of Pregnancy. Drugs 2000, 59 (4;)
781-800

McCarthy FP et al. 2011 A
Prospective Cohort Study Investigating Associations between
Hyperemesis Gravidarum and Cognitive Behavioural and Emotional
Well-Being in Pregnancy. Plos One, 6: 7.

McParlin C, Graham RH, and Robson
SC. 2008 Caring for women with nausea and vomiting in pregnancy: new
approaches. British Journal of Midwifery 2008; 16 (5)

 

Hyperemesis Gravidarum

I just wanted to let you all know that I have now updated the page on Hyperemesis Gravidaum here on the blog.

I have been struggling a lot with this over the past few days and have plenty I’d like to write about, but also have very limited time to blog right now because I want to spend as much time with Little Man as possible.

In short, I have been struggling with seeing other pregnant women, especially those pregnant with a second or third child, because that makes me face my decision to never go through pregnancy again. And that hurts. Anyone who knows me well will know I always looked forward to being pregnant and having a family and to turn my back on expanding my family in that way is painful.

As it stands we won’t want to even think of expanding our family until Oscar is several years older because I need to get my health sorted, having been ill for several years with Endometriosis and the treatments for it before my Hyperemesis Gravidarum hell last year. We still aren’t sure whether we will have more than one child and whether that addition will be through adoption or not.

This past week I started wondering if I shouldn’t have said “never again” so hastily during my pregnancy and yet I know I would be terrified to try again. So basically I am torn in two by it all and am trying to work through my thoughts and emotions rather than pushing them down and letting them build to unbearable levels.

Of course these decisions don’t need to be made now. And I am more than happy with Oscar being an only child for the time being. I love every minute with him and want to cherish these early years and would be quite happy if we didn’t expand the family until he was 4, 5 even 6 maybe. But I know that one day I will have to make the decision as to whether I can face the possibility of HG again or whether Tim and I need to look at adoption or even remaining a one child family.

So I am trying to deal with these emotions as they come up. I don’t want to feel jealous every time I see a pregnant woman. I don’t want to have to change channel every time an advert for One Born Every Minute comes on the tv, or turn of Twitter because it is trending. I don’t want to become bitter about it, and so that means I need to work through it.

So I decided now was the time to finally get around to writing my page on Hyperemesis and I would be hugely grateful if you would check it out.

This post has been added to the Tuesday Tea and Sympathy Linky. Click on the image below to check out the other posts taking part.

 


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Emotional Fallout

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Hello, I'm 4 weeks old and I'm gorgeous!

I can't believe it has been 4 weeks since we met Little Man and already our life as a family of three feels so right that we cannot imagine it being any other way.

There are so many things I want to write about already, and yet it is the very fact that so much is happening in our lives that I want to write about that keeps me from writing. I am far too busy loving on my boy to get online to write these days. But I will be back soon as the things I want to write need to be written, if nothing more than to give me a record of all the things I'm thinking and feeling right now!

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One of the major things which I think will take several posts to cover, is the emotional fallout of the pregnancy I had. Whilst in it I couldn't wait for it to be over and the nightmare of how ill I was to pass. I never, ever wanted to be pregnant again and although that thought hurt me inside, I was too focussed on the physical to deal with the emotional side of things (not to mention that crying made me throw up!)

But now Little Man is here and I get to fall in love with every part of him more each day I realise just how big that is. I see his tiny toes and his attempts to smile and realise we won't do this again. And that hurts. I see my sister-in-law pregnant with her third child, looking forward to the new arrival with her first two children and realise Little Man will never get to experience the anticipation of a baby brother or sister. And it hurts. But more than that, when I look at him and know he was worth every second of being so ill I feel guilty for not being willing to do it again. But I can't. I don't want to put myself or TJ through that again. Nor do I want to miss out on several months of Little Man's life through being that ill again. And that really hurts.

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Deep down I know how incredibly blessed we were to fall pregnant and have a very healthy baby boy at the end of the pregnancy. Some people never get to live this dream. I will never forget that, but it doesn't stop the hurt.

And even without these aspects of the pregnancy experience I had there are still the remnants of sickness that remain 4 weeks later, the extreme exhaustion from being very ill for 9 months, and the fear surrounding both getting ill or falling pregnant again. There are certain foods I don't think I'll ever want to touch again. There are certain songs, tv programmes, and books that take me right back to the moments I listened to, watched or read them in an attempt to take my mind off how very sick I felt. And I have a feeling that certain times of the year will always remind me of my very worst days.

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Don't get me wrong: I am loving being a mum and I am spending most of my days with a massive grin on my face. But the emotional fallout is still there and it hits me at the strangest of times. I imagine it will take quite some time to work through it all and I am sure I will have a lot to write about in weeks to come. But for now I just wanted to note that although I am in heaven with my baby boy, there are these emotions that need to be recognised, honoured and faced and so it may take me a while to get back to regular blogging and I may even take to blogging several posts at a time if my mind needs to get several things sorted at some point. But whichever way it happens, I will keep writing and posting photos of my dear, sweet boy!

Thank you for reading xx

The End of a Long Year!

My latest article for iVillageUK focuses on preparing for the birth of our son next month. As you all know, pregnancy has been incredibly difficult for me physically, mentally and emotionally and although becoming a parent is going to be a real challenge, I am ready for the end of the pregnancy and our new life as a family of three to begin.

I often feel as if time has changed over the past few months and it’s as if I haven’t really been here, but locked in my own strange little world of pregnancy woes. And yet, looking back at the very first article I wrote for ivillage I realise just how much has changed and how crazy it is to think that it hasn’t even been a year since I started writing these weekly articles.

In fact, I am pretty sure that the beginning of my series on Endometriosis and Trying to Conceive started around the same point in September as my baby is due. Now that is rather mind-blowing when you think about the fact that the series started from the uncertainty of coming off birth control and trying for a baby.

It was truly difficult to keep the news of our pregnancy quiet until the end of my first trimester, especially when I was so sick. I continued writing articles on trying to conceive because I had thought it would take us much longer to fall pregnant and so had many topics I still wanted to cover. But it was very strange writing them when knowing we had been blessed with our little man.

And so when I was invited to continue writing my articles from a pregnancy point of view I was thrilled. What better opportunity can someone who loves writing and sharing experiences possibly be given than to write for such a website? And suddenly I was writing about a whole new range of difficulties and Endometriosis was rarely mentioned.

Don’t get me wrong, I am loving writing about pregnancy and am happy to say that I have been offered the chance to continue writing once the baby is here from a parenting point of view. But it does leave me wondering whether I am neglecting a cause I feel really strongly about: Endometriosis Awareness.

Just because I fell pregnant and haven’t had so many issues directly related to Endometriosis in recent months, it is still very much a part of my life. I wonder how I will be after the birth. Will my periods return quickly and will they be as painful and troublesome as before? What might be different? And how will it affect my ability to be the best mother I can be if I am ill on a regular basis?

And the closer I come to giving birth the more I wonder about this and the more I realise that I seem to have come full circle, so to speak. My emphasis is on my long-term health again rather than the difficulties of pregnancy and I am determined to use my voice to raise awareness of Endometriosis, as well as so many other things I am passionate about. In fact pregnancy has given me more things to campaign for, such as better research and support for those suffering from such debilitating conditions such as hyperemesis and PGP.

I’m all for using my own experiences to help direct my writing and work, and yet it has been hard to know what to write of late as there is so much running through my mind. So it has been wonderful to have guest bloggers share in spreading the word about Endometriosis. If you missed it, please do check out Danielle’s post explaining all the work she has been doing to raise awareness of it. And don’t forget to enter the giveaway for Jen’s Endometriosis Awareness Tote Bag/Hot Water Bottle Cozy and Purse. You only have until Friday to enter (by spreading awareness in one of the four ways described at the end of this post) and it would be a shame to miss this opportunity to get the word out and make a difference in any way you can!

 

Endometriosis Awareness: free crochet pattern and giveaway!

Good Morning!

Today I have a real treat for you. My “crochet guru” Jen has kindly created a very special crochet pattern that I’m sure you’ll love as much as I do.

I’ll let Jen explain the pattern herself, but please don’t just “skip” this post if you’re not a crocheter. The pattern is actually remarkably simple once you understand the basics and I shall be having a go at it myself once I get some yellow yarn. And even if you are absolutely certain you’ll never pick up a crochet hook, you could still get a hold of the end product, courtesy of Jen’s generosity and a little giveaway we have planned. So read on and all will be revealed…

I’ve known Amanda since she was a teenager. It seems pretty incredible now that the only time we actually met in person was a luncheon in Glastonbury in 2006.

Glastonbury

The world of online community brings people together in a way they never could before. Where else could the inquiring mind of a middle aged American woman with a family meet the inquiring mind of an English university student under circumstances in which they become friends? Seriously, I ask you?! It’s an amazing thing, and even more amazing now that she is married (hi Tim!) and expecting a son soon. (I, on the other hand, am still a middle aged American woman!)

But I digress! It’s not only inquiring minds that Amanda and I share, we share a love for crafting. Between us, we’ve shared ideas, recipes, patterns and tips. I’ve used her as an excuse to try my hand at projects like the beaded Dream Tree…

Aventurine tree small

…the crocheted cabled Tree of Life afghan…

…and to create the best mix cd of love songs EVER.

I’ve felt helpless though in sharing her journey through endometriosis. While I could offer moral support, it upset me to see the physical, emotional and mental pain it’s brought to her over the years. We’ve all felt it, wanting to fix something for someone who is suffering… it’s very difficult to feel helpless isn’t it?

Normally when I am feeling helpless, I practice ‘random acts of kindness’ and they help me feel more connected not only to the ‘family of man’, but to my own priorities. I help the old woman at the grocery to reach her favorite jam on the top shelf (I’m tall, it happens). I pick up someone’s tab at a restaurant (very rewarding, you should try it!). I spend a day picking up trash at the lake (you’d be surprised how other people join in). These little extensions of myself fill me up in a way nothing else can.

Then, Amanda had an idea! Her idea is to combine my love of crafting, and crocheting in particular, with the cause of endo awareness. Brilliant! So, here we are… I created this hot water bottle cozy with a yellow awareness ribbon, in hopes it will not only bring awareness but comfort to a woman in pain.

Ribbon Cozy2 small

The exact same pattern can also be used to make a tote bag, and I’ve included a pattern for a small pocket purse for carrying personal items as well (because you know we all do!).

Ribbon pocket small

When Amanda asked me about it, I spent a couple of days simmering with ideas. I decided on this “illusion crochet” ribbon not only because it’s cool, but because it is symbolic of hidden issues, and the work so many are doing to bring them to light. If you look at it one way, it’s simply striped…

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but change your perspective a little and the ribbon appears.

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You can find the free pattern here. I wrote it with beginner crocheters in mind so don’t let the look intimidate you if it is a new technique. If you get stuck you can reach me through my blog with questions.

We’ve also come up with a way for you to win this one from me! (Amanda will fill in the details)

The process of creating these items reminds me that we don’t have to move mountains to make a difference, we just have to make an effort to share our gifts as they are… when we all come together and contribute in our own way, those mountains will begin to move themselves!

So, do you fancy being in with the chance of winning an awareness tote bag/hot water bottle cozy and purse?  Can you picture yourself receiving all of this in the post?

Ribbon set1 small 

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For more information, help or support, please consider visiting the following websites:

Endometriosis UK

SHE Trust UK

Endometriosis and Pregnancy

I'd like to say a quick thank you once again to Danielle for her brilliant guest post the other day. Please do check it out, and don't forget that her radio interview on the Pelvic Messenger is scheduled to start at 6pm GMT tomorrow (Thursday 28th July). 

It felt great to get some new information and thoughts on Endometriosis onto the blog as I have not written about it myself for such a long time. Part of the reason for this is that due to the intensity of my sickness and physical discomfort during my pregnancy I have had other things on my mind. But in talking to Danielle I realised something that I hadn't consciously accepted.

With Endometriosis being a major cause of infertility, being one of the "lucky ones" who managed to fall pregnant not only without medical interviention but also very quickly meant that I felt a certain uneasiness in sharing the news of my pregnancy and drawing attention to Endometriosis. Despite never having written solely about Endometriosis, I knew that posts about the topic could come up in search engines and bring new readers to the blog who were trying to come to terms with their own fertility issues and to then have them see pregnancy related posts seemed like it might be a smack in the face.

Things were made doubly difficult by the fact that pregnancy has been incredibly harsh on my body. I have been very ill from the word go and it has been an immense battle to keep going most days. I tried not to write too much about my struggles, again for the reason of not wanting to hurt someone inadvertently. And so not only did I steer clear of writing about Endometriosis, but I also limited my writing about Hyperemesis Gravidarum which, like Endometriosis, is a under-researched condition that is often poorly managed by the medical profession and scoffed at by those who believe it is merely "morning sickness".

And yet, despite all of this, there have been many times that I could have written about Endometriosis and pregnancy. Without a doubt, being able to have a baby is one of the most beautiful things and I am so glad that my husband and I escaped the heartbreak of infertility. But at the same time, having had such a challenging pregnancy I know I couldn't do it all again. Most people respond to this with the words "you never know how you'll feel once the baby is born" and "that's just because you are feeling so sick now". What they fail to see is that it isn't just the Hyperemesis Gravidarum making the decision for me (although that is a key point in the way I feel). What they do not realise is that life isn't as easy as deciding to have a baby and simply going for it. 

My husband and I had to think really hard about when the best time for us to try and conceive would be. I have suffered with painful periods since my early teens and since 2005 have had two laparoscopies, gone through two chemically induced pseudo-menopauses, and spent an awful lot of time struggling to cope with the demands of everyday life. Completing my degree was difficult when I was so tired all the time. Commuting and working in a busy environment was almost impossible on my worst days. And making the decision to relocate so that I could work fewer hours each week was exhausting in itself.

We did everything we could to ensure that I went into our pregnancy journey as fit and healthy as I could be. But it wasn't enough. I didn't have much in terms of reserves of energy and getting through the nightmare of Hyperemesis Gravidarum was one of the hardest things we have ever had to do. Despite finally being on anti-emetics, I still feel sick a lot and add that to the pain of unstable joints and regular period-like cramping and stabbing pains which we think are caused by possible Endometriosis adhesions being stretched, and you'll see that pregnancy is not as easy is it first seems in our case. We may be able to fall pregnant naturally, but at what cost?

Don't get me wrong: I would never dream of comparing the hell of my pregnancy with the hell of infertility so many women have to face. But what I am saying is that it is so easy for people to misunderstand what I'm saying and even judge me harshly for it. I don't blame any woman who might read this and think "I'd go through as many 'difficult' pregnancies as possible if it meant I got to have my baby" because I know I would think the exact same thing were I unable to fall pregnant myself. But having experienced it I know that I could never do it again.

I have previously touched on my feelings regarding pregnancy, but it was only when talking to Danielle that I realised just how deep the discomfort this issue brings runs. By worrying about inadvertently upsetting someone I guarded my posts from ever truly touching on Endometriosis, which is still a major aspect of my life. It is almost like there are two groups people affected by Endometriosis, those whose fertility is unaffected and those who face infertility due to it. There are so many groups out there for women facing infertility and within that group there is another division: those who never get the chance to be parents and those who do. I've often read the blogs of women who previously found so much support from the infertile community only to wonder where they fit in now that they are expecting a baby or have a family of their own. And if it's hard for them to know what to say and do, having experienced the same feelings as the readers and friends they now worry about upsetting, then it's certainly hard for those of us who never had to face such things.

But does that mean that we should keep quiet about our own experiences and put on a brave face to hide the pain we are suffering ourselves? I feel almost like I have forgotten why I started writing about Endometriosis in the first place. My initial series on iVillageUK was about trying to conceive and mentioned Endometriosis a lot because at that time I had no idea how my fertility might be affected. Since becoming pregnant and starting a series called "a pregnancy journey" I have barely mentioned Endometriosis and it saddens me that I am missing a great opportunity to spread awareness through such a widely read medium. 

I remember talking to someone about how I would broach the subject of pregnancy on here and deciding that I would try and be as honest as I could about it because that it what this blog is all about. I write about life, my life in particular because that is what I know best after all, and that means writing about every aspect of it. Endometriosis may not be at the forefront of my mind during pregnancy, but it is always nagging away somewhere behind the more obvious things I'm dealing with right now. I worry about how soon my periods will return after the pregnancy is over. I wonder how bad the Endometriosis symptoms may be. I think about the fact that despite so many treatments over recent years the Endometriosis continued to grow and cause more and more havoc on my life, so what is my next option: do I try another form of birth control or see what my body does on its own for the first time in years? And how will all of this affect my ability to do all I want to as a mother? 

Yeah, there are many things I could write about regarding Endometriosis even during pregnancy, and even if there weren't I could still be promoting the work of others like Danielle, because at the end of the day Endometriosis is a chronic condition and it's going to be with me for a long time. But finding that balance between writing about it and trying to ensure I don't come across as "rubbing my pregnancy in other people's faces" is a difficult one. Yet it is one I need to find because if I am to live up to Danielle's kind words about me and the work I do for Endometriosis Awareness, then I need to be writing about it much more frequently than I have in recent months. 

So stay tuned for some new projects and ideas I have regarding Endometriosis over the coming months and please do get in touch if you are, or know someone who is, trying to live live with Endometriosis. It would be great to hear from you. 

And as a last thought, why not consider following me on Twitter? I finally built up the courage to overcome my complete lack of knowledge regarding it and joined up last night. You'll have to give me a few days/weeks to get to grips with how it works, but it would be great to see you there too. My username is @amandaspatch 

Pregnancy: Your Thoughts…

Today I am going to ask something that has the potential to be rather controversial, and very painful for some. And I'd like to apologise in advance if this upsets any of you because of your own personal experiences, but it is something that I have been thinking about a lot and that I feel is worth discussing even if it is difficult. 

So before I begin, I'll just leave this quick warning that if, for whatever reason, you find the discussion of pregnancy difficult right now, then you might want to skip this post

I'd also like to say that I really hope that as many people as possible can get involved in answering this question with their own personal take on it, no matter what angle they are coming from. The very reason I am writing this post is because I want to know how people truly feel about this, and to find out the range of thoughts, feelings and opinions there are regarding this. So please do leave a comment, if you feel you can, and perhaps even pass on the link to anyone you think might be interested in having their say too. As always, any comments left will be unmoderated (unless, of course, they are abusive to others or simply spam!) so it's pretty much a case of "whatever you feel, please do write it and know it will be read". I fully expect there to be differences of opinions, and all I ask is that you respect that this is the case and try to remember that there are many people out there for who this subject is extremely painful.

So, on with the question… it is in several parts, so please bear with me!

Would you consider pregnancy to be one of the best experiences of your life, no matter what difficulties you faced either getting pregnant or getting through the pregnancy itself?

OR

Given the opportunity, would you rather skip the "pregnancy experience" if it were possible to have a baby without 9 months of your body being pushed to (and beyond) its limits, and the many months before and after pregnancy that just add to the emotional and physical challenges?

Are you still with me? Confused? Let me explain a bit more about this question and where it came from.

If you've been following my blog for a while you will know that this time last year my husband and I were unsure whether my Endo would cause us fertility trouble. So you'd be forgiven for thinking that now I am pregnant I would consider pregnancy to be one of the best experiences of my life. After all, with so many couples facing infertility, the very fact we conceived the second month of trying should mean we are overjoyed by our luck. 

So let me first say that, yes, we are overjoyed, more than I can say. There was a time a few years ago when I thought my Endo would be so bad I wouldn't even feel able to try to conceive. So for us this pregnancy is a real blessing and has actually run very smoothly in terms of the health of the baby (i.e. we never had any bleeding scares, all our scans have shown normal growth etc). But, in terms of my health, pregnancy has been one of the hardest experiences of my life.

And that is saying something, because with Endometriosis I have struggled through years of pain, heavy bleeding, surgeries, hormonal ups and downs, and many various treatments. I am not new to nausea, pain and emotional turmoil, but pregnancy has taken me to new limits. Hyperemesis Gravidarum meant that for the first 3 months I was unable to even get out of bed without retching and putting almost any food in my mouth made me gag. I won't go over this again, other than to say that I lived in my own personal hell, where the simplest of functions such as even talking to someone could make me sick and so it felt like the world was continuing on its normal route through life and I was somehow apart from that. 

If you've never been that sick then you probably can't understand that during those first few months I actually resented being pregnant. I felt immesely guilty for such, because I knew how lucky we were to be expecting a baby, but I still resented being so ill. My sickness continued at a slightly less intense level but still enough to stop me gaining weight and doing everyday things long past the halfway point of pregnancy and even now that I am anti-sickness medication I still suffer from daily nausea and extreme exhaustion. Added to that is the pain of hypermobile joints and an unstable pelvis (causing PGP), meaning I find moving around very difficult, and the sudden appearance of period-like pains and stabbing pains, we think are caused by adhesions or scarring from the Endo being stretched and you'll begin to see why pregnancy is far from the best experience of my life!

So when a friend of mine commented recently that she considered pregnancy one of the best experiences of her life, I had to stop and think about how I really felt about it all. I have been saying for most of this pregnancy that I would never, ever do it again. And that has been hard because I would have loved to have a second child in a few years time and I feel robbed of that opportunity because there really is no way I could do this again. I know my limits, and although I possibly could go through it again, I actually don't want to. It's not a matter of whether it is physically possible for me, but rather that emotionally and mentally I am not willing to go through such dark times again. 

For most people that is impossible to understand. In fact I feel incredibly guilty for grieving the fact that I can't have an "easier pregnancy" when for some people pregnancy itself is impossible. And in that respect I also understand when people say that I will forget all about this once the baby is born and once my broodiness sets in again I will be willing to go through it again. But at the same time it irritates me that people assume that I don't know my own limits and think that I am just naively reacting to a difficult situation. There is no doubt that I am reacting to a difficult situation, but there are so many reasons why for us another pregnancy is not really an option we are willing to consider. 

Which leads me to the second part of my question: "Given the opportunity, would you rather skip the "pregnancy experience" if it were possible to have a baby without 9 months of your body being pushed to (and beyond) its limits, and the many months before and after pregnancy that just add to the emotional and physical challenges?

Tim was always certain he only wanted one child and I always felt that I wanted more. It was something we were going to face in the future, deciding when the time came. But since going through this pregnancy I actually fear falling pregnant again and having to face it all again with a young child in my care. And although I have started to accept that maybe we will be a one-child family, Tim has started to think maybe we shouldn't rule out expanding our family in the future. Which has led us to look at alternative routes.

Thankfully, we are both very open to the idea of adoption or fostering, if we find ourselves in a place where this is possible. And although we know that taking that route will be very different and may mean that our relationship with an adopted or fostered child will be different to that with our own child, especially if we end up with an older child who comes with challenging past experiences, we feel that we could love and cherish and nurture such a child as much as we will the one I am currently carrying.

But I know that for some people the absolute ideal is to have their own biological children, and adoption is not really something they would choose over pregnancy. And to be fair, had I had an easier pregnancy I would have liked to have tried for another child naturally. But if we do decide to look at adoption in the future, it will be a choice we have made rather than our only option as it is for some people. And in that respect I am much happier to say "yes" to the second part of my question than some people might be.

Yet I still find myself wondering about the relationship you build with a child and how and why for many people (including ourselves) trying to conceive is such an important part of our dreams for our own family. Despite being happy to consider adoption, I do feel sad that never again will we see our baby on an ultrasound and this is the only time I will ever experience a baby wriggling around inside of me, helping to build a bond before it is even born. 

I asked this same question on a pregnancy forum I am part of and several people said that an easy pregnancy doesn't necessarily mean a stronger bond, and a harder pregnancy can still be completely worth it in the end. And with the advances in fertility treatment over the past couple of decades, more and more people are being given that chance to try and achieve that ultimate goal of experiencing pregnancy themselves. And I completely get that, because although we had considered adoption as an option previously, I still wanted to try for a baby of our own. It is a very instinctual thing. 

But, still, I know that if we do decide to expand our family in the future, I would much rather choose the adoption route next time than face another pregnancy like this one. For many people this is completely incomprehensible, and the only thing I can think of that makes is an easier thing for us to consider is that we had previously discussed adoption as an option because we wanted to give a child in need a chance of a family life so it isn't something we have come to because it is our only option. 

Of course, this is all completely invalid for many people. I have read too many infertility blogs to know how expensive and difficult adoption can be for some. And I have read too many heart-breaking posts from those who have faced cycle after cycle of fertility treatment in the hope of having their own child, only to end up childless or with only one child when they wanted a bigger family and are totally wiped out financially because of having to take the route they have.

Which is why I ask these questions in the first place. I want to know how others feel about pregnancy and what level of sacrifice they are willing to go to in order to have the family they always dreamed of. And as I said at the very beginning of this post, I know it is a difficult question and may well bring out some controversy in terms of answering it, because it is an entirely individual and personal choice. But I would still like to know how you feel about this. 

And, again, I apologise if this is a deeply painful topic for you, as I know it is for many. I don't ask to hurt anyone, simply to know more about what we so often think is such an easy and natural thing, but is actually very complicated for so many of us.

Thank you for reading, and if you do feel you can comment, please do. 


Fresh Air

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Have you ever noticed how stepping outside your door or opening a window can make all the difference in the world?

Sometimes all I want to do is sit outside and never come back indoors again. This feeling is at its strongest in two situations: when I am feeling totally at peace and just want to “be” and when I am fraught with emotion.

You see, whenever I find something weighing me down, that feeling of space and the ability to breathe freely really helps to calm me and if it wasn’t for the fact that I would be seriously cold and uncomfortable sleeping in our garden, I would have done so on several occasions over the past few years!

I try and remedy this by opening the window whenever I can, even if that means having to run a hot bath or making a hot water bottle and curling up in bed… I can stay warm while enjoying a bit of fresh air around me. It’s never quite as nice as being outside, but it means I can clearly hear the birds chirping, the wind blowing or the neighbours’ kids having a whale of a time without a care in the world.

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This lack of fresh air has often made me both ill and claustrophobic. In my previous workplace there was no natural light or air in our office and the artificiality of it all led to many of the workers ending each day with a stinking headache. And more recently the immense sickness that left me bedbound for several weeks meant I often felt devastated that I couldn’t just step outside and enjoy sitting in the garden or going for a walk.

I would sit and listen to the kids next door and think I couldn’t wait until the sickness passed and I could finally be out in the world enjoying myself again. I would walk to the doctors and feel the air on my face and wish for the sickness to pass so I could finally enjoy that walk for what it was and really notice the things I was passing and the changing of the seasons once more.

Nothing has boosted my mood more than being able to get back outdoors, even if only for little bits at a time, and I hope to never be stuck indoors for such a long time ever again.

Yet, I cannot help but think about how very long these past months have felt and how short they must be in comparison to others who truly are bed or housebound. There are so many people to who this might apply to, but one group of people in particular would be those who suffer from Multiple Chemical Sensitivity or MCS.

For these people, contact with any number of everyday products we use without thinking could trigger a reaction, and avoiding these products themselves is often not enough. Just think how far that weedkiller or fence paint you’ve been using could travel in the “fresh air”. I became aware of this sometime last year, but since being pregnant and extra careful about the products I come into contact with it has become even clearer how hard it must be to avoid things for sufferers of MCS.

I hate to think there are people out there who are unable to go out and enjoy the fresh air like I do because of harsh chemicals being used by those around them. There is no easy answer as people are always using products without thinking and finding alternatives is not always so simple. But Tim and I have promised ourselves to do our best to limit the harmful products we use and try to find alternatives. This will not only help if anyone around us has sensitivities to certain chemicals, but it must surely be better for the environment and our beautiful planet as well.

I’ll keep you updated on any new ideas we come across for around the house and in the garden as we head through the summer. And until then, I do hope you are able to enjoy the fresh air wherever you are!

Expecting…

Please note: this article contains images and information regarding pregnancy

 

Oh my…

I have been wanting to write this post for the past 2 months, ever since I first took a test and saw the faintest of lines. But, like many, I decided to err on the side of caution and keep the news until after a certain milestone.

Have you guessed yet? 

 

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Yes, that is the first image we have of the most amazing person in our lives… our baby.

I am currently 13 weeks pregnant, and thankfully coming out of the hell that is the first trimester. I'm not going to lie to you: there were times when the going got so tough I actually resented being pregnant. And that was not something I expected to feel in a million years. 

Now, I know how incredibly lucky I was to fall pregnant so quickly… stunned is not a word that covers quite how emotionally surreal the whole thing seemed when we first saw that second pink line and tested again and again over several days to check that it was indeed the real thing.

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Statistics show that approimately 40% of all women with Endometriosis suffer from fertility issues of one kind or another. That's almost half, and we had prepared ourselves for a long wait, and perhaps even facing the dreaded infertility diagnosis further down the line.

So, I spent the two-week wait between ovulation and taking the test looking for symptoms, and the week following the test in absolute ecstasy. At that point I was just overwhelmed by the fact that my body had, for the first time since my periods began, done what it was supposed to do. How could I not be happy?

Then the sickness began. 

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one of many days/weeks spent lying in bed in my pyjamas, hoping for the nausea to pass

I had naively expected morning sickness to be similar to the nausea I felt prior to and during my period… sickly and annoying, but manageable. What I hadn't expected was the hypersensitive gag reflex that meant that anything from trying to swallow certain foods through to simply getting out of bed to walk to the toilet would start me retching. I ended up spending weeks 5 through 10 terrified of doing anything that would set it off, and weeks 11 and 12 wishing the gag reflex would settle down as the nausea had.

At its worst (around weeks 7 through 9) I struggled to get enough liquid down, surviving on a measly 400ml per day. I faced hospitalisation due to dehydration and only managed to stay home because my body somehow managed to survive on that small amount of liquid: had there been ketones in my urine to indicate otherwise I would have been shipped off to hospital straight away.

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Throughout all this I couldn't help but feel guilty that I resented being pregnant when so many women struggle to achieve the same fate. The joy and anticipation I had felt right at the beginning was quickly replaced by desperation and depression: I was stuck in bed, day-after-day, dreading the times I had to move, eat or even talk some days. I dreaded anything happening to the fetus, and yet wished for an end to the misery of my own personal hell (I'm not sure if I've mentioned this before, but I have Emetophobia or a fear of vomiting and though I have learnt to deal with nausea through the years, this constant urge to retch was new and terrifying!)

I am sad that the experience was marred by this, worried that I couldn't provide the best possible nutrition for my body and the new life it carried, and felt like a failure for constantly saying "I can't ever do this again, let's only have one child!" I feel cheated in my own way, that my body has yet again amplified the symptoms that most women feel to a point where my life no longer felt like my own. The Endometriosis may not have stopped me from falling pregnant, but my body did not react well to the high levels of pregnancy hormones, and I feel like circumstances are forcing me to decide to only go through this once in my life.

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But, here we are, at 13 weeks, with a picture of the baby who we will meet in 6 months time. Our lives are changing forever and we couldn't be happier (or more petrified!) And now the nausea and retching is gradually easing up, I feel ready to talk about it and share it with you all.

But before I go further, I wish to make it clear that I never, ever want to alienate any readers who may be struggling with fertility issues, but I know that I will need to share the ups and downs of pregnancy on here, as the Patch is a place I use to write about my life. All my posts are written from personal experience, and so pregnancy will come up from time to time. I just wish it weren't the case that so many women face the struggle that they do to reach this point.

A couple of my fellow "Endo sisters" who blog have just had FETs (Frozen Embryon Transfers) and I wish so hard that they will also be sharing their happy news with us all. But the timing just reminds me how important it is to remember how lucky I am to have fallen pregnant naturally and how mindful I must be of the different journeys some couples have to take and how I will never, ever understand the pain of that and must never take for granted anything in life.

For now, though, I just wish to share this news of ours and relish in the moment for just a little while before returning to more regular posting.

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From tomorrow I will also be writing a weekly article on pregnancy over at iVillageUK. This is to replace the TTC articles that I have previously been writing. I hope that you may decide to pop over once in a while and see what is going on over there too. You will find the articles on the Pregnancy and Baby Channel.

This Time Last Year…

Oops, I am a day late with this, thanks to returning home after almost a week away and not wanting to do more than curl up on the sofa with Tim and watch the colourised version of “It’s a Wonderful Life”. Can I just say that I thought it would be totally wrong to watch it in colour, and I shall definitely be watching it in the original black and white again before Christmas, but it really isn’t that bad!

Anyway, that being said, I am writing yesterday’s post today and shall write today’s post on Tuesday next week! So, without further ado, let’s get on with it.

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With the recent warnings of snow and the upcoming advent season (and the relaunch of my Advent Series), I couldn’t help but remember where we were last year…

This time last year, the above church was the view from our house.

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This time last year we lived in a village with neighbours who enjoyed entertaining so much that it became a regular occurrence for us all to take part in “Safari Suppers”, hosting others for one course and going on to another house for the next one.

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This time last year I spent glorious hours with Pippi, our neighbours cat, who would keep me company on the coldest and darkest of days when Tim was at work and I was home alone.

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And this time last year I had a job, which despite its demands and difficulties, meant I could provide for my own little family of two and enjoy a little bit of extra “splashing out” (read: a couple of presents and Christmas Dinner).

Outwardly it looked like I had the best of life: our home was cosy, and we both had work (a far cry from the year previous when we lived in a damp flat and had been on a single income for several months). But underneath it all I was falling apart.

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This time last year my outlook was bleak…

I was entering my second “pseudo-menopause” in just over a year

I was dealing with a certain amount of discrimination and pressure at work, thanks to my health

I was inconsolable, coming home after a day in the office and crying most of the night. Somehow I pulled myself together enough to get on the bus each morning a 7.30am, turn up to work with a smile on my face and deal with every single one of the difficult customers who entered our office, and then make the hour’s commute back home again before I would fall apart. But fall apart I would, and this time last year I hit my limit.

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Through sheer determination, we have made it to where we are today: married, trying to start a family, and therefore free of medication (on my behalf). Life is still hard, but in different ways. No matter what we face now, it is nothing compared to what we have already faced together, and I only have to look back to this time last year to know how true that is…

Outwardly it may seem like we have moved backwards, but inwardly we have made leaps worthy of the moon landing!