Passing the long lonely hours
The thing with hyperemesis gravidarum is that on top of all the spewing and constant nausea there is horrendous isolation and intense loneliness that comes with long long hours alone in your bedroom or on the sofa with no one else around and very little you can do to help yourself out of the ensuring misery and depression that comes with it.
People who haven't been there and done that imagine that it's probably quite nice to have a load of time off work and not have to do any house work or make dinner for a few weeks. They picture you sitting on the sofa watching films and trashy day time TV, nibbling crackers and sipping ginger tea.
Oh how far from the truth do we know that to be. The idea of nibbling or sipping anything is a kin to climbing a mountain. No just the actual sipping but the process of having to sit up and use your arm to lift the cup to your lips can cause yet more rounds of vomiting and retching. Far from watching TV with it's moving images and sound, just the light through the window and the sound of the cars passing outside can move the constant nausea to more vomiting.
The good news is that for a lot of women this does get a little easier as the pregnancy goes on and TV watching is usually possible from mid pregnancy, which significantly helps pass the time, particularly in the days of on demand programming and downloadable film accounts.
But what about those first few weeks when moving out of bed seems impossible? (and by “few weeks” we're actually still talking around 6-12 weeks at least which is a hell of a long time!). I found audio books really helpful for passing the time with the volume on low it's just someone talking quite quietly. Best not to go with something scary or too exciting or something miserable and depressing, but it does need to be engaging and interesting for you to be suitably distracted by it. I listened to the whole of “Wicked” in my first pregnancy which was great and passed a whole 9 days of my then miserable, headache filled, dehydrated life. A little remote for the stereo meant I barely had to move to turn it on/off and my husband loaded a few other books onto the iPod for me after that.
In my first pregnancy I couldn't read books for about 8 weeks at the start but after that I would, except the weight and effort of the physical book would sometimes limit my ability to read. In pregnancy number two I invested in a kindle and boy was that a good move... you can lie still on your side and turn pages with a gentle press of a finger. Plus when you finish a book you can get another one instantly. The classics are all free on Amazon and you can take it to hospital with you too.
I also enjoyed new technology developments in my later pregnancies. Specifically smart phones and their ability to connect you with women around the world. Facebook, forums and twitter are all valuable ways to reduce the loneliness. Just be a little careful and see my past post about safety.
Games on my phone were great, mainly solitaire which takes very little effort (use a finger movement) and isn't flashy or bright but it particularly engaging and distracting. Needless to say I am very good at solitaire now!
You may not be able to use your phone, kindle or TV for the first few, most isolating weeks and it's important that you contact Pregnancy Sickness Support for a volunteer to support you through the worst times when the isolation is most profound.
Our book Hyperemesis Gravidarum – The Definitive Guide will be available on kindle or in paperback in September and has loads more tips and information about surviving hyperemesis gravidarum. You can sign up to be alerted when it's available to buy by clicking here and signing up.
Also check out the products I suggest in my HG Shop to help you survive the long lonely spew-filled days.
Reducing risks while bed bound
An inevitable part of HG is the miserably excessive amount of time spend in bed. People who have never been bed bound often make ignorant comments about how nice it must be to just stay in bed all day but those of us who have ever spend more than about 3 days in bed due to an illness or injury know what utter nonsense that it!
The reality is that after about 48 hours of being in bed that place we think of as a heavenly sanctuary of comfort and rest turns into a hellish cave of pain, isolation and utter misery. Forward about 6 weeks of being in bed, (that's over 1,000 hours) and the bed is actually hell on earth! On top of that, the smell of the bedsheets can be stomach turning, the light flickering through the crack in the curtain can seem like it's torturing you with it's playful flicker which triggers yet more bouts of vomiting. The sound of your house become intimately ingrained in your mind and can start to play tricks on you breaking the long lonely silences all alone in your squishy prison cell. And for some women, six weeks is just the start... nine long months, 36+ weeks, that's over 6,000 hours!
But on top of all that there are actual, genuine dangers of being bed bound for so long.
DVT and PE
Deep Vein Thrombosis (DVT) is a blood clot which can form in your legs or pelvis and if breaks off from the vein and travels to your lungs it can cause a potentially life-threatening condition called Pulmonary Embolism (PE). Pregnant women are already at increased risk of DVT due to various changes in your body during pregnancy, such as increase blood volume, and the dehydration women with HG experience increases this risk even more.
It is important you try to reduce the risk as best you can within the limits of what the condition allows... obviously, if you could get up and walk about for a bit each hour then you wouldn't be bed bound in the first place! If you are admitted to hospital you may be given an injection daily to combat the risk and you may be provided with special knee or thigh high stockings to wear. You can take these home and continue to use them if you want and if you are too ill to do the following risk-reducing steps then it is a good idea to keep them on.
Switch between bed and a chair or sofa on a regular basis if you can
Getting up and walking around your bed or house as often as possible
Do simple leg exercises such as flexing and extending your foot, rotating your foot in circles.
Stretch your thigh muscles (hamstrings) while lying in bed – raise one leg in the air as high as you can (up to a 90 degree angle), pull the leg towards your body gently and hold for 30 seconds. Release gently and repeat with the other.
From a lying position bring one knee to your chest, hold for 15 seconds and release slowly, repeat with the other.
Ultimately for the women with severe hyperemesis all of those above prevention measures may seem impossible and you should discuss your risk with your GP or midwife if that is the case. They may prescribe compression stockings at home for you (then again, they may not... my GP laughed at me in my second pregnancy when I raised my concerns and wanted advice, they're not all like that though).
Knowing the signs and symptoms of DVT and PE is very important for bed-bound pregnant women and should you experience any of the following symptoms then get rapid medical assessment, call your GP or 111:
Pain like a heavy ache, swelling or tenderness in one of your legs (usually your calf). The pain may be worse when standing or walking.
Red or noticeably warm areas on your leg, particularly at the back of your leg below your knee
Swelling in one area or on one leg
For symptoms of DVT see a doctor as quickly as possible.
Sometimes a DVT won't have any symptoms and you could suffer a PE with no prior warning. The symptoms to be aware of for PE are:
Breathlessness, either coming on suddenly or gradually
Chest pain, which may be worse when you inhale (breath in)
For any of the symptoms of a PE you need to call 999 for an ambulance.
Pressure damage to skin and soft tissue happens when you lie or sit in one position for a long time so that the blood supply to the pressure point is reduced or stopped and a wound starts to develop. They start as painful red patches but can rapidly become open wounds. Areas particularly prone to pressure damage include your heals, sacrum, shoulders, head and really just any bony bits.
Dehydration and poor nutrition increase your risk of pressure damage to tissue and reduce healing too. They are unlikely to get significantly bad for HG patients, except in the most extreme cases, and once you are able to get up and about a little the risk will drop significantly, but in the meantime it's important to be vigilant if they start to develop.
To reduce the risk of pressure damage try to change position regularly (every two hours or more frequently) and try to make sure there aren't creases in the sheets where you are lying. If you are very concerned or are developing pressure sores, which start as red patches that don't go white (blanch) when you press on them, then speak to your doctor or practice nurse.
Pregnancy pillows can help you get comfy in a variety of positions and may help in your effort to change positions regularly.
Bed bound for nine long months
Hyperemesis gravidarum doesn't only bring a whole lot of nausea and vomiting to the sufferer. As if that wasn't enough it can bring pytalism (excessive saliva), pounding headaches, torn stomach muscles, torn oesophagus', loss of bladder control and unimaginable misery. And it brings nine long months of being pretty much bed bound.
Someone once said to me, during my first pregnancy, when I was about 20 weeks pregnant and had been bed bound for about 4 months “Oh Caitlin, I hope that when I'm pregnant I can have time off work and lounge around in bed, it sounds lovely”... amazingly this person is still alive and it is a testament to just how much HG robs you of your ability to speak for yourself that barely retorted with a weak “no you don't, that's a silly thing to say”. Indeed, during pregnancy my voice was so small and inaudible that I took that and hundreds of other comments and let them well up inside into a pit of festering misery and loneliness and anger, which is now thankfully spilling out in this blog like an erupting super volcano causing a catastrophic extinction of the ignorance and stigma surrounding HG. Or at least I hope it is, but these things take time. The eruption itself doesn't cause the bulk of extinctions, it's the aftermath that does it (I read a LOT of apocalyptic literature during my bed-bound years).
Anyway, back to the point of the post... Being bed bound is far from enjoyable! Admittedly some women do manage to get up in the second half of pregnancy and some even manage to leave the house on occasion. But realistically us HG sufferers end up spending vast amounts of our pregnant lives wasting away in our lonely beds.
Now you all know me well enough by now to know that I'm likely to start suggesting some pro-active ways to make the experience of laying in bed a little more tolerable. And that's exactly what I'm going to do! I'm all for embracing the misery and tackling it head on.
Over the next two weeks I'll do a number of posts on issues related to being stuck in bed for months on end and how you can reduce your suffering and also reduce the risks of complications due to being bed-bound such as Deep Vein Thrombosis and pressure sores.
To kick off the series I've managed to sort out a super brilliant competition for you to win a brand new DreamGenii Pregnancy Pillow, worth £47.99, to help you get as comfy as possible in bed or on the sofa. You can use it after for breastfeeding or if you're never planning to be pregnant again you can give it to a friend or donate it to a current HG sufferer! I bought one in my first pregnancy and it served me extremely well through the following 27 months of three entirely bed bound pregnancies!
Check out my competition to win a DreamGenii pillow before the 24th August and let your pregnant friends on Facebook know about it!
Preparing Emotionally for Hyperemesis Gravidarum
In the third of my series about preparing for hyperemesis gravidarum I'm going to discuss what emotional preparations you can make in advance of an HG pregnancy and tips for those of you considering, or embarking on, another pregnancy based on what worked for me with my third.
Women who have never had hyperemesis gravidarum before (whether or not they've been pregnant before) and have no family history of HG, have a 1-2% chance of suffering it in pregnancy; that's the base line rate in the population. Admittedly plenty more will suffer severe nausea and vomiting in pregnancy or undiagnosed HG, but the current rate within pregnant women is 1-2%. Unlike “normal morning sickness” which can vary greatly from pregnancy to pregnancy, women who have suffered hyperemesis gravidarum before have an 86% chance of suffering again.
People who have never suffered are likely to try to look on the positive and insist that if you think positively you'll fall in that 14% chance of not suffering. But as “thinking negatively” is known definitely not to be the cause and most women enter their first pregnancy excited and certainly not expecting it, we know that no amount of positive thinking will prevent it. Furthermore, pretending like it's not going to happen and just waiting to see could in fact be harmful and cause more suffering than if you had planned and prepared carefully.
I firmly believe that embracing the fact you are likely to get sick, potentially sicker than before, and planning emotionally in advance can significantly reduce the overall severity and reduce the mental health toll HG inevitably takes on the sufferer. Feeling “out of control” is a commonly reported distressing symptom for sufferers, which, particularly in the first pregnancy is understandable as the vomiting, often sudden and violent seems to be the thing in control of every part of you body. On top of that the condition can seem to send you whole life into free-fall. Time off work, admissions to hospital, inability to look after yourself let alone your household or children and the financial impact all that has. Women find they can't even speak for themselves, they can loss control of their bladder, having to take unwanted medication and every other aspect of their life seem to be lost to HG.
And ironically, pregnancy is a time of life when we want total control over our bodies, we want to be able to avoid smoking, alcohol, GM products, medications, bad moods and anything else deemed potentially harmful to developing foetus's by every man and his dog. We are encouraged by the mass pregnancy media producing over-priced magazines designed to encourage yet more consumerism and stress that our bodies are temples housing precious royal goods and that pregnancy should be natural, happy and oozing with glowy stuff.
Of course for the HG sufferer it's anything but... it's full of spew, medication and misery. It's generally considered the worst time of a sufferers whole life!
So, how can we prepare emotionally? Well, by preparing physically, like I talked about in previous posts for medications and practical considerations, you're making a good start with the process of embracing what's to come. Don't shy away from it. Grab the bull by the horns and tame the that beast. Accept that no matter what medication you use to suppress the symptoms to a “manageable” level, you are still going to have a horrendous nine months. So prepare for that:
Buy yourself a set of sick bowls
Make yourself a 'going out' sick kit, unscented wipes, sick bags, tissues, gum or lemon drops etc.
Load up your iPod with some audio-books, download some easy apps like solitaire
Buy yourself some comfy maternity pyjama's
If your back sufferers from the long hours in bed then can you afford a new mattress? I got a memory foam one before my third pregnancy and it really helped relieve the pressure areas and hip pain.
Perhaps a new pillow or bed sheets?
Accept that you're likely to wee when you spew (it starts earlier each pregnancy!) and get yourself some pads in advance.
There are links for some of the above items on my HG Shop page so check it out.
The other major aspect of preparing mentally and emotionally for hyperemesis gravidarum is to build up your support network in advance. In particular, join the Pregnancy Sickness Support forum and 'meet' lots of other women at the planning and preparation stage like you. Although the charity can't match sufferers with volunteers until they are actually pregnant (due to a lack of resources) you can get make a start yourself through the forum. The HER Foundation also have a forum for the USA although I would warn you all now to be wary of some of the nutty groups on Facebook which advocate all sorts of wacky ways to “prevent” HG. Also, please don't be wasting your money on nonsense treatment plans claiming to cure HG... they are not based on science and have no evidence for safety or efficiency behind them.
Our book Hyperemesis Gravidarum – The Definitive Guide is out in September and is packed full of the info you need to survive and, hopefully, thrive through the long nine months of an HG pregnancy. You can sign up for an email about it's release here.
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In conjunction with Pregnancy Sickness Support and Plymouth University I am looking for women who have been treated for HG in the last 2 years in the UK to take part in a research survey. Please click here to find out more.
I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.
About this blog
Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.
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