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The Reality of Life as a Spoonie - The Family Patch

The Reality of Life as a Spoonie

If you’ve been reading this blog for any length of time, I’m sure you know by now that my health has never been great. And if you’ve followed me on instagram lately, you will likely have noticed a big “healing” theme to my posts. But the truth is, I am more sick that I have ever been in my life right now and it has been really hard for me to accept that life as a spoonie really sucks sometimes.

The Reality of Life as a Spoonie - The Family Patch

I first came across the term “spoonie” in my early twenties, around the time of my Endometriosis diagnosis. And it felt like such a relief to realise there was an explanation for all I was feeling. I had struggled to keep up with people for years, spent most of my University evenings staying in and getting an early night whilst my friends went clubbing, and would sleep for hours during the holidays to “recoup” from late nights and early mornings studying and finishing a multitude of assignments (language degrees tend to be pretty heavily weighted in the coursework department!)

Of course, you don’t get as many weeks’ holiday to rest once you move into the world of work, and adding in a commute meant that my mid-twenties taught me a lot about my limits as a Spoonie and that sometimes you just have to make sacrifices. By the time we started trying for a baby I thought I knew my limits and how to honour them. How wrong I was!

The past 5 years have been filled with events and experiences that have pushed me beyond my limits in a way I could never have imagined. Hyperemesis during pregnancy (with anaemia, Obstetric Cholestasis, and an unstable pelvis to boot) meant that I started my life as a parent physically beaten and emotionally exhausted. Sleep deprivation, which continued for years with our Little Man, who still at almost 5 years of age only sleeps around 9-10 hours a night and wakes regularly in the night too, affected my ability to rest and recover.

Returning to work, to help make ends meet and pay off our debt, meant that I had less time than ever before and suddenly had to split myself between work and home life. This became increasingly difficult when I moved into a homeworking role, one where my passion for the cause blinded me to the dangers of being “on the front line”, meeting people’s needs when those needs were intrinsically linked to my own personal trauma. And on top of all that, my husband was diagnosed with Small Fibre Neuropathy, meaning he lives in immense daily pain and, as he struggles to come to terms with his diagnosis, his emotional and mental health has taken a real beating.

So, as you can imagine, by the time we reached the end of 2014 I was completely and utterly spent. I remember crying as I walked the long route to nursery to collect Little Man, because I didn’t know how I was going to take another step. I remember being so terrified that I was losing my mind when I became obsessed with what was happening at work and I couldn’t eat or sleep as the anxiety made me so ill. And I remember praying for an answer, knowing that I had given it my all (and more) and I just could not go on any longer…

Of course, I was made redundant at the beginning of 2015, and things began to pick up. I felt well again, I had energy, I was sleeping and cooking and eating and enjoying life. Heck, when we finally moved back to my hometown I started two new jobs, working far more hours than I had initially contracted for, and spent almost every weekend busily attending conferences, visiting family, and having a great time. I thought that was it, that I’d survived the burnout of the past few years, and things were finally on the up!

Except, now I know better. That initial sense of relief that came with making positive changes in my life, was short-lived. No Spoonie can run themselves dry, borrowing not only days’ but weeks’, months’, even years’ worth of spoons without repaying it at some point. And yet still I tried to ignore it. The latter part of 2015 was overshadowed by three-day migraines, daily nausea, awful cramps, all of which I assumed were symptoms related to my Endometriosis. I ended the year with surgery and new meds that had helped previously and I thought 2016 would be okay. But it wasn’t.

I began this year experiencing extreme fatigue that seemed to last for days, especially after a week at work when my shifts all fell on consecutive days. I also began to suffer from joint pain again, as my left hip kept trying to “pop out” without warning, day after day. So I saw the doctor, thinking it was my Hypermobility. Except this time the word “autoimmune disorder” was mentioned and I was referred to a Rheumatologist. Since then I have had another GP, a consultant, and a physiotherapist all mention various autoimmune disorders to me, and I am awaiting screening for Lupus as various things in my blood report suggest it as a possibility. And I finally have to accept that after all I’ve been through, all my body has endured, this is perhaps inevitable – if you don’t respect the spoons you have, things are gonna get worse!

And I look back over the past few years and wonder why I was so determined to ignore that. It’s not that I didn’t know it, because I’ve always known it. My mum was diagnosed with ME when I was in my teens, so I have known about autoimmune disorders for most of my life. I also knew that there is often a crossover of these conditions, where someone like me with Endometriosis (for example) could have a higher risk of developing an autoimmune disorder. It’s one of the reasons why I finally decided I could never have another baby – my body did not recover as well as many of the other Hyperemesis mums seemed to, and I’d watched a dear friend go on to be diagnosed with Lupus following her own Hyperemesis pregnancy. I just didn’t want to risk that. No, I knew about the risk, I just chose to ignore it.

Perhaps that is unfair. The reality is that I had very little choice – my baby needed caring for, my husband needed support in coming to terms with his diagnosis, and the debt needed paying off. Whilst in hindsight I may have made different decisions (for instance, we paid off our debt much quicker with me in a part-time role than we did when I was working full-time!) I can’t go back and change it now. All I can do is learn from it and move forwards.

The reality of life as a spoonie is really clear to me right now. I am so sick that I do not have good days, not really. A good day to me is one in which I can get out of bed, eat without feeling too sick, play with my child a little bit, and maybe put a load of laundry in so that we have some clean clothes. On days like that I have to remind myself to limit what I do, that whilst my house is a mess and I’d love to take my son to the park and enjoy the sun, if I do so I will regret it tomorrow. Because my bad days are really bad. On a bad day I can barely move – I just do not have any energy – and I run a fever, feel dizzy and sick, and struggle to even concentrate on the smallest of tasks like reading a book or sending an email. And I want to avoid those bad days as much as I can.

I know there is no quick fix to this. I know that I ran on borrowed energy for far too long, and that I have to repay that debt with exactly the same amount of care and patience as we paid off our financial ones. But it is hard, so hard! There are days when I feel like a terrible mother, because all Little Man hears all day is, “I’m sorry, mummy feels too poorly to do that.” There are days when I feel like a terrible wife, because TJ is also struggling and I simply cannot do anything to help him out any more, I have to look after myself first. And there are days when I feel like the world’s worst friend, because I’ve not been in touch with anyone for weeks (not even on Facebook) and my mum has to call me to tell me a friend has announced her much wanted pregnancy so I don’t miss it entirely. But that’s the reality of life as a Spoonie, especially when you’ve run out of spoons.

I’m hopeful that as and when I embrace this life of a Spoonie, really accept that this is how things must be and that the sacrifices I make are for a better future, that things will get better. I know many people who have been where I am and have then gone on to manage their condition better over time. I know it is possible to come back from this, and that is what is keeping me going right now. But the only way to do that is to listen to my body, honour its desperate need for rest, and do whatever it takes to begin to heal. I mentioned to someone recently that I know if I am ever to heal, I need to make BIG change in my life. And that’s the reality of life as a Spoonie.

Tell me, if you’re a Spoonie, what does life as a Spoonie look like for you?

Until we accept that "women's troubles" are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from.

Endometriosis in the News – Here’s Why It’s Important!

This morning I received a message from my sister-in-law, directing me to an article in the Guardian about Endometriosis. My initial response was caution, as so often this condition that has blighted my life since my early teens is so poorly represented in the media, if mentioned at all. But as I read through the article I was pleased to see that it was well-researched, quoting leaders in the field, and clearly expressed the challenges faced both by women suffering from it and the healthcare professionals fighting to find a cause and a cure.

I was even pleasantly surprised to find out about the 45 centres across the UK that have been accredited by the British Society for Gynaecological Endoscopy, as this is something I have never heard of. Just recently my GP and I have been searching for an Endometriosis Specialist, as we seem to have come to the end of the line in terms of treatment options. Yet neither of us managed to find out about this, nor did the gynaecologist who saw me last year.

This is why it is so important that awareness is raised through every means possible, so that those who are suffering (and those who are treating them) can access the best possible care, including an actual diagnosis for those who have never been properly diagnosed.

I’m no stranger to misdiagnosis – during my pregnancy my Hyperemesis was never officially diagnosed (or treated), and TJ’s Small Fibre Neuropathy was also misdiagnosed for several years as possible Carpal Tunnel. But I had always considered myself “lucky” to have been diagnosed with Endometriosis at 21, around 8 years after I first developed symptoms. A lot of this came from the fact that both my mother and maternal grandmother had suffered from it, and so we knew how important it was to fight for a diagnosis, especially through all the years of being told it was “normal” to be in pain.

But what the Guardian article clearly showed me this morning is that many of my other “diagnoses” since have most likely been a side effect of the Endometriosis all along (something I have long suspected but not had the courage to prove). Take, for instance, my IBS… I never had any trouble with my digestive system prior to my first laparoscopy in 2005, yet since that day I have struggled massively with pain and nausea that have consistently been attributed to IBS. Over the past 18 months I have been submitted to test after test including a CT scan, Barium Swallow, Endoscopy and Colonoscopy, all coming back clear. The latter, however, was somewhat problematic, due to my “very loopy” colon, and I cannot help but wonder whether some of this may be due to the adhesions which have previously “glued” my uterus to my bowel.

It seems I am far from alone in getting these “misdiagnoses”, as GPs and gynaecologists refuse to accept that the symptoms you’re presenting to them could possibly be connected to Endometriosis. Yet as the article itself states, “One woman in 10 of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed.” Did you get that? The specialists that women are sent to are often ill-informed – no wonder getting treatment is so difficult!

"One woman in 10 of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed."

I’ve said this before, but I’ll say it again – I consider myself “lucky” that my current GP has tried to find an Endometriosis Specialist rather than referring me to a general Gynaecologist. We didn’t have any luck in our search, but the fact is my GP is trying his hardest to get me the best possible care he can. To be believed and have that kind of support is incredible, though it should, of course, be standard!

I’ve seen enough Gynaecologists through the years to develop a certain amount of fear around appointments with them. Despite twice having surgery that has clearly shown Stage 3 Endometriosis, with adhesions attaching organs to each other, I have still had Gynaecologists suggest that “nausea is not ‘typical’ of Endometriosis” and “well, you’re not in too much pain, so bear with it”.

Again, I feel “lucky” that, for me, the Mirena coil actually stops my periods and so the agonising pain that accompanied me through my teen years and early twenties is a thing of the past. I no longer suffer from the pain so great that I cannot move, throw up and develop a raging fever to boot. When I say that labour and childbirth was a cinch compared to the pain I used to suffer every single month, hopefully that will give it some kind of context! But just because I don’t have that intense level of pain any more, doesn’t mean I don’t suffer.

I get “tugging” pains around my ovaries and “stabbing” pains in my rectum, so sharp that they take my breath away. I get mild “cramps” and the awful nausea that feels almost like motion sickness and reminds me of the horrific weeks and months I suffered with HG during pregnancy. And all of this happens completely at random, meaning I find myself suffering 2 if not 3 weeks out of every month. Add in the migraines and complete exhaustion from struggling to hold down a job, raise a son, and generally have a life, and the picture is grim.

Now here’s where I’m going to sound like a broken record – I feel “lucky” that I still have a job. I have faced discrimination in the workforce before and had to put my career plans on hold many times because of how ill I am. In fact, I often make myself more sick by trying to ignore the fact I am ill and carry on just like everybody else. But the truth is I do have a job, I do have a son that I am well enough to play with most days, and I do have some life left to enjoy. Not much, but some. Many women are not so “lucky”.

But here’s the thing – this shouldn’t be what it feels like to be “lucky”… Every woman with Endometriosis should be receiving the best possible specialist care to ensure that the condition does not rule or ruin their life. That isn’t luck… it should be standard. But until we break this idea that “women’s troubles” should just be tolerated and actually begin to see it as something that we need to find better treatment for, “luck” is what it comes down to.

If you’ve read my blog for a while, you will know that I have campaigned tirelessly over previous years to raise awareness of and better diagnosis and treatment for Hyperemesis, because every woman’s health and wellbeing is important. But the percentage of women suffering from Hyperemesis is far less than that of women with Endometriosis, where an estimated 1 in 10 women (or 1.6 million women in 2012 in the UK alone) have the condition. To put that into perspective, “The numbers are comparable to diabetes – and yet there is only a fraction of the awareness of the condition and help for those afflicted.”

You may wonder why I am mentioning Hyperemesis in a post about Endometriosis, but to me it is all the same battle – women are being drastically failed by our society and medical profession through lack of awareness and lack of funding for research, development and education. Until we accept that “women’s troubles” are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from. And that is why it is important that Endometriosis is in the news today!

Until we accept that "women's troubles" are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from.

Rose

Ten Years with Endometriosis

Ten years ago, this month, I was diagnosed with Endometriosis. I was relieved to finally have a diagnosis, and was told how “lucky” I was to be diagnosed at such a young age (I was 21). Whilst I appreciated the sentiment, I didn’t feel very lucky.

Ten Years with Endometriosis

I had been suffering from the most severe abdominal cramps ever since my periods first started in my early teens, and had spent several years dealing with a cycle that could be as short as 2-3 weeks at times. When you feel physically sick and are doubled over in pain during your period, having them come so frequently together (not to mention so unpredictably) can really make your life hell.

Getting a diagnosis didn’t really change anything, other than giving me a name for what I was dealing with. I’d like to say that getting the diagnosis meant that I would no longer have to deal with doctors and gynaecologists who didn’t believe how much it was affecting my life, but sadly that wasn’t always the case! But, still, I had a name for what was happening to me – at least I didn’t have to doubt myself any more…

The past ten years have been hard. I’ve tried pretty much every treatment option available to me, and have unfortunately reacted badly to most. My last appointment with a gynaecologist, at the beginning of this year, set out my options pretty clearly:

  1. Continue as I am, with the Mirena coil, and see how long I can cope with the symptoms
  2. Take Nafarelin, again, to try and keep symptoms at bay as long as possible
  3. Have another laparoscopy

Unfortunately, none of these are great. The Mirena, whilst stopping my periods, does not seem to stop the pain. And as I only came off my last 6 months’ of Nafarelin in February, it just feels too soon to try that again. As for surgery, well my last two laparoscopies were pretty extensive and left me feeling worse than before (my first one set off my IBS, and I ended up with an infection after the second). When I look at the length of relief I get from any of these options, it really does feel rather hopeless.

According to my gynaecologist (not that I ever see the same one twice!) the plan is to get me through to my 40s and then consider removing my ovaries. I’ve always known this was a possibility as my mum had a hysterectomy at 36 and my Grandma had one at 40 (yes, Endometriosis, like Hyperemesis, seems to run in my family!) The problem with this is that I am only 31… I can’t imagine getting through another 10 years like this.

This past week I have felt awful. Admittedly, I have had a virus that has totally floored me, but the worst part is that just as I was recovering from that I have been pulled back down by cramps, nausea, intense bloating, indigestion, the lot. I know it is the Endo, because the symptoms are so typical for me… I was super emotional last weekend in the run-up to it, my pelvis and tailbone have been killing me, and I’ve been dreaming about a combination of babies and ovary pain – you can’t get more hormonal than that!

And I realise that this month the symptoms are worse than last month. And last month the symptoms were worse than the month before. And suddenly I realise I am heading for yet another slide into the abyss that is Endo at its cruellest.

I’m lucky, in that I have support. My mum “gets it” and I have so many online friends who have walked this path before me (and with me). But still, it can feel so lonely sometimes. When your body keeps failing, keeps holding you back, keeps you from enjoying time with your family, keeps you from reaching your dreams, keeps you from living… well, that just plain sucks.

It’s no wonder I’ve been miserable this past week. I thought it was because I was sick. But really, it’s the reality of it all sinking in. It’s realising that, yes I had a virus, but nobody else in the family was so incredibly and completely wiped out by it and the only reason I was is because my body is already working overtime to deal with my crazy hormones and the pain that comes with them.

So now I have some thinking to do. What route do I take? Do I do nothing, or do I go down the medical route? Do I try the gynaecologist’s suggestion of taking Nafarelin constantly, to see if that helps, or is that a bit pointless? According to her, I can take it up to 2 years as long as I take HRT and then longer than 2 years if necessary, only I’d have to start having bone scans after that. But if I do that, how is that any different to having my ovaries removed? Surely pumping my body full of more chemicals just to avoid that surgery for a few more years is a bit mad?

But am I really ready to push for something more permanent? I think I may be getting there, as this week it has really hit me that we won’t be having any more babies (hence my love letter to myself about my journey towards motherhood). The only reason I can think of for those emotions hitting me so suddenly is that deep down, I know I have some big decisions to make. And whilst I know we decided long ago that another pregnancy isn’t an option for us, opting to take that away completely just seems so immense!

So, yeah… this month marks 10 years since I was first diagnosed with Endometriosis. Ten years of having a name for this condition that totally runs my life at times. Do I want to give it another ten years, or is it time to say “enough”?

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? 

Blogging for Change!

Between my Nine Months Of challenge, Sport Relief and International Women's Day, my blog posts lately have been rather more focussed on campaigning for one thing or another. And I have to say, it has given me such a boost and reminded me why I haven't given up blogging yet (despite considering it several times).

You see, in between all the random bits and pieces I have blogged about, I have always had an underlying passion to use my words to raise awareness of various things. It took me a year or so of blogging before I felt confident enough to start writing about the things I really cared about rather than just the day-to-day stuff, but it has always been there. 

At first, it was Endometriosis. And this actually led to my first series on iVillage.co.uk where I wrote as a freelance writer for about 2.5 years. Then it was Hyperemesis Gravidarum, which went hand in hand with the book I was writing. And then I lost my nerve.

I stopped writing about these things because it just didn't feel "right" somehow. Once I was a "parent blogger" I felt my blog needed to be more "carefree" somehow and "fit in" with everyone else's. I think this was partly because I was struggling to find the time to write and partly because I wasn't sure all the awareness stuff sat so well with all the family stuff and didn't think people would appreciate it. But by doing this I found myself losing interest in blogging altogether…

However this past month has reminded me just how much I enjoy putting into words the things that I feel passionate about and sharing causes that others feel passionate about too. I have loved pulling together all the information and stats together for the posts I have written to support Team Honk and have found myself being pulled into social media again too in order to keep up and spread the word.

In fact, I joined in the BritMums Twitter Party to celebrate Inspirational Women thanks to all of this and it was at that point that I realised just what inspires me the most – people who put their time, energy and passion into making change! It doesn't matter if that change is big or small, or whether it is completely personal or affects the international community, all that matters is that when someone is passionate about something they automatically create change.

And I come across a lot of people passionate about creating change.  Suffering from conditions such as Endometriosis and Hyperemesis Gravidarum has made me very aware of just how much work is needed to raise awareness of these and create change for women like myself. Talking openly about either of these has led me to some very difficult positions – people just don't want to hear about them. But they need to be spoken about, if for no other reason than to make it very clear that just because these only affect women they should be taken seriously (rather than being a "taboo" subject or something women should just endure because, hey we're women and that's what women do, right?)

So now I find myself wondering what direction to take with my blog – I don't think it should become a simple commentary blog as I still love my crafts and various things we do around the house and home as a family. I also don't have the time or desire to create a second blog. So I think that I need to find a balance between the causes and our general family life. After all, creating a happy and healthy home for your family is just as important as working hard on a major campaign, isn't it! 

I think it's going to take me a while to find my new balance, but I think the timing is simply perfect. Over the coming weeks I can share with you bits and pieces about the charity auction I'm organising and that means mixing a personal hobby with a major cause I care about. Hopefully that will  instill within me the confidence to continue mixing the two together. And if nothing else, simply being able to share the health issues I am currently having (which I have avoided writing about for the most part this past year or so) will be both good for me and raise some awareness in some small way.

In the meantime, I'd love to know what you think about all of this. Do you struggle to balance different areas of your life on your blog? 

The Hardest Decision (HG)

If you haven't been following this blog for long enough to know about our Hyperemesis Gravidarum (HG) journey, then you can catch up here.

I've been wanting to write this post for a few days now but really wasn't sure how to start. So let's go straight in at the crux of the matter: TJ and I made a promise to ourselves last week that we will never put ourselves (and Little Man and our families) through another pregnancy.

We've been going backwards and forwards between "never again" and "but we might want another child". Okay, who am I kidding? I've always imagined having 2 or 3 children and the thought of stopping at one is a very hard one to get my head (and heart) around. But HG made our life such hell that even I began to believe the "never again" option…

And so when that jealousy and anguish started to kick in when Little Man was just a few months old, when I realised I'd never get to experience the newborn stage again, never get to give birth again and cherish those first few hours with my baby, I lost my resolve. I began to believe that if we planned everything meticulously it might be possible. It certainly seemed preferable to that awful feeling in the pit of my stomach every time I heard of another friend having a baby or saw a random pregnant lady walking about town with a smile on her face.

But the more we talked about it and the more I researched it the scarier the whole thing became. We realised that we would have to wait until Little Man was in full-time education (so almost 5 thanks to him being a September baby) and that we'd have to spend a good year prior to trying to conceive preparing ourselves and Little Man physically, mentally and emotionally. 

It would mean potentially getting my health to a certain level only to risk it dropping to one of its lowest points again. And it's not as if my health is great at the best of times! I've had difficulties with my periods since they began in my early teens, but in the past 5-10 years they have really taken a toll on me. And not surprising when I realised that the pain I felt with my Endometriosis was akin to the pain experienced in labour! I had been going to school, university and work for years in the same level of pain as early labour, only thinking to take the day off when it got to the level of transitional labour. And doing that month in and month out, especially when I'd sometimes only go 2 or 3 weeks between periods, has taken it's toll.

So my recovery from pregnancy has been a slow one, what with the reappearance of my periods at 3 months post-partum, complete with nausea. 

And then there are the other factors playing against us. Things like my increased risk of an ectopic pregnancy (thanks to damage from the Endo to one of my fallopian tubes) and the risk of possibly developing Obstetric Cholestasis again. And I was considered at risk of developing Pre-eclampsia throughout my last pregnancy so may well have that as a factor again. And all of this made me begin to think that there were just far too many reasons not to have another pregnancy than to do it all again.

We were lucky that I fell pregnant quickly last time and that Little Man came out healthy and strong. There is no guarantee we'd have the same luck a second time. And the emotional trauma that both TJ and I experienced is ongoing. The guilt I feel at having put us both through it once is bad enough. And that was with going into it having no idea how bad it would be. To do it a second time knowing just how bad it could be, well that would just be too much.

So logically the decision makes perfect sense. 

And yet it is one of the hardest, if not the hardest things I have ever had to do. 

My head and my heart have been at war. And it was tearing me apart. So it felt like a relief to make a final decision, rather than going back and forth between one choice and the other. But it still hurts. 

One of the things I had to do in my CBT sessions recently was write a list of "I deserve…" and it was hard. What I wanted to write was, "I deserve to be healthy. I deserve to have another baby. I deserve to enjoy pregnancy". But I couldn't, because I know that it really isn't likely. Endo continues to affect my health and even if I had another baby of my own it is highly likely it would be a battle rather than a joy. 

According to my therapist, this is the point. These are things that I should be able to write, even if they aren't likely. That I should feel justified in the pain and sadness it brings knowing that these are things I should be able to experience. But it doesn't change the reality…

But even though it is hard, I know it is the right decision for my family. The pain at not having the chance to do all those things connected to carrying and giving birth to your own baby is far less than the pain we could feel by trying to do it all again in spite of all the things against us.

It hurts to know I'll never get to breastfeed another baby, especially as we had such troubles when Little Man was young. It hurts to know we'll never get to go to another scan, to see our baby for the first time, to choose a name and prepare our hearts and lives for a new baby. It hurts in a way that I know some people will know in their own hearts, but so many others will never understand. Not fully.

We feel blessed that Endometriosis didn't rob us of my fertility, but at the same time it is a leading contributor to the decision to never do it again. The time it takes for me to recover from pregnancy and the risk of Ectopic pregnancies that it has caused combined with the risk of complications during pregnancy makes me feel like, in some way, we have more in common with those who physically cannot have a baby than those who can. Because we feel it is an option we just cannot take, however much we'd like to.

But where does that leave us for support? We could try for another baby, so don't really have infertility issues. We're not actively trying and unable to. But choosing not to is not our first choice. 

This is why it is so important for me to dedicate as much of my time and energy to raising awareness of HG and that it is so much more than "severe Nausea and Vomiting in Pregnancy". There needs to be much more understanding of just how bad it can be. There needs to be much more research into potential causes of it and possible medications to help with the severity of the symptoms. There needs to be far more support. All of this is needed to help prevent other women having to face these exact same decisions and to support them if they do.

TJ and I are heading off to the annual conference held by Pregnancy Sickness Support this month, and I am working hard on reading through as much research as I can and bringing together as many "personal experiences" as possible from other HG sufferers and survivors to ensure the book I am writing is as accurate, informative, supportive and representative as possible. It is a big task but it is one close to my heart.

And having this project helps, in a small way, to give meaning to all of this. As a writer, this is an ideal project for me. It gives a purpose to my work. And gives me something positive to focus on rather than only the negative.

TJ and I still have a lot of healing to do. And we still have some big decisions to make. The biggest of all being do we remain as a one child family, or do we look into fostering and/or adoption. And I'm sure I'll be writing about this a lot over the next few years. But for now, we've made the hardest decision of all. Little Man is to be our only biological child. Our journey of creating a family in the natural way is over. And that is taking some getting used to…

NB: I must add here that since writing this I have done much more research and we have discovered just how badly managed my pregnancy was and how we could potentially have a better experience a second time round, is still difficult. So we have opened it up to a "maybe" again, however not for several more years yet!!

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 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. 


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!