All in Research Projects
It's been quite a whirlwind the last couple of weeks with the news that the Duchess of Cambridge is suffering hyperemesis again and the associated media frenzy that came with it. I don't know if we're really making head way or not to be honest. The news that she was unable to go to Malta was reported without even the “acute” or “extreme” bit in front of the “morning sickness” she was reported to have. Sometimes it really feels like I'm banging my head against a brick wall.
The Duchess of Cambridge is pregnant with her second child, and like the vast majority (80%) of women who have a history of hyperemesis gravidarum (pronounced hi-per-em-ee-sis gra-vi-dah-rum) she is suffering the condition again. My entire blog describes the misery of hyperemesis gravidarum and I wrote back in 2012 about how this might be for the Duchess so I won't rehash all that here.
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!
Following on from my last post about fundraising I want to discuss how you can get involved with raising awareness about hyperemesis so that our daughters and granddaughters don't have to suffer the same injustices, ignorant comments and inhumane treatment that so many of our generation have.
Since my post about making your kids proud and using your awful run in with hyperemesis as a force for change and improvement, for our daughters and granddaughters, I've had lots of people ask how they can get involved, raise awareness and make a difference.
For those of us working entirely immersed in the hyperemesis gravidarum world, (namely myself and Karen Lodge in the Pregnancy Sickness Support office working alongside each other, her answering the helpline and my engaging in research activity and education for healthcare professions) there can be periods of time where we really feel the impact of the work we are doing and we go home at the end of the day knowing that so many women in the UK are getting really great care and support for their HG, in part thanks to the work that we’re doing from our little office in Cornwall.
Pretty much anything pregnancy related seems to generate the most unbelievable amount of myths and old wives tales. Some are so ingrained in our culture that they are considered norms and are perpetuated by health care professionals despite having absolutely no evidence or truth behind them.
Last week, after a lengthy email exchange with an editor for a midwifery journal, I became concerned that my view of women's experiences of being in hospital with hyperemesis was becoming skewed. I suspected that because I am “on the front line” as it were, and being exposed to the more extreme cases, that I was becoming cynical and thinking things were more dire than they are in reality. People tend to be less vocal about good experiences and the bad ones can really stick out.
I've been a bit quite this week as I've been working on an article for a midwifery journal which has been pinging back and forth between the editor and myself. She raised some interesting points which I must admit I was thrown by...
Sorry for the silence folks but time off over Christmas is fairly essential with three little ones... what's the point in suffering three times to get them if I'm then too busy to enjoy the little critters eh?
The Hyperemesis Education and ResearchFoundation (HER) are celebrating their 10th Birthday this week. To say I am grateful to them is an understatement of the highest degree.
Back in the 1930's around the time of psycho-dynamic theory development the mad, excuse the pun, idea developed that women with hyperemesis gravidarum were mentally ill and that the excessive, life-threatening vomiting was down to a subconscious rejection of the foetus. This coincided with a drop in the death rate from the condition thanks to the incredibly wonderful development of intravenous fluids. But not dying, combined with ridiculous theories about women's mental states lead to abominable treatment plans where women were literally locked up, prevented from seeing family and left to rot in their own vomit having had sick bowls removed and nurses told not to help them clean up.
During a wonderful twitter chat last week by @WeMidwives, part of the We Nurses community a number of the midwives involved highlighted that the difference between normal “morning sickness” and hyperemesis gravidarum (HG) wasn't clear and they didn't feel confident in identifying the point at which treatment is indicated. Further, they didn't feel confident in knowing how best to treat and support a woman with HG.
The reality is that no one intentionally hurts or upsets a friend who is suffering - they simply don't realise the impact their innocent, well meaning suggestions can have. Often people feel very out of their depth trying to help a friend who is suffering in a way they can't personally imagine. And why should we be able to understand an experience which we haven't been through? Some things we can imagine are universally horrendous for anyone (deaths of love ones and so on) but of ailments, which we have no personal experience... how are we meant to know?
Whilst browsing facebook this morning in bed - moments after waking up as one does – I came across a blog post a friend had shared by Pregnant Chicken, about what NOT to say to a pregnant lady. It was hilarious and cheered me up from my “I have to get up now” blues. And I though I ought to expand on the theme. So in addition to the general pregnancy comment no-no's on Pregnant Chicken's blog here are the things not to say to a women with Hyperemesis Gravidarum (or just bad pregnancy sickness for that matter):
Despite Orla now being over 15 months old and just about walking and talking, my life is still filled with a constant and steady stream of HG. Not because I am suffering - thank goodness - or because I have any long term complications - double thank goodness – but because Pregnancy Sickness Support has grown almost exponentially and managing it consumes vast amounts of my time.
I was naturally thrilled to hear the news that the Duchess of Cambridge safely delivered a baby boy last week. Regardless who they are and who he will be, to me he and his mother are HG survivors and that is worth celebrating.
Those of you who have followed my blog from day one, or those who have looked back through the archive to my first post will see that the first link I made in this blog was to the HER Foundation website, www.helpher.orgThat's because before the relaunch of the PSS website our UK charity had very little web presence and I had suffered through two HG pregnancies without knowledge of any support in the UK at all, despite the fact that both organisations were launched around the same time, 10 years ago!
On 30th April it will be 2 years since I started this blog and first got in touch with Pregnancy Sickness Support (crazy; that's flown by!). In that time the charity and profile of hyperemesis gravidarum has obviously grown exponentially and I now work harder than ever, immersed deeply in the world of HG! My original purpose of the blog was to document my journey with HG for the third time and in particular the pre-emptive treatment I had. This has proved to be of particular interest to so many women and I now spend vast amounts of time talking to women about how they can prepare for the challenges of such a horrendous pregnancy. To that end I have recently produced some documents for the PSS Websiteincluding a care plan based on the one that I devised for my own pregnancy with my wonderful GP Dr Harriet Tullberg. She and I are now collaborating to develop further GP education in the region as well as guidelines for Acute Care at Home teams to be able to treat HG sufferers with IV fluids in their own home... Standard practice in America!
