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Progress? I’m not sure

So what’s happening?  Well this all started with writing down my journey to help another couple faced with SI.  Then it became about achieving an ambition to have a book published which then turned into a mission to demonstrate to publishers just how big an audience is out there needing information on this topic.

It is now a crusade.  Having spent 2 years (whilst setting up a new business and running a family home) doing my bit to raise the profile of SI, I’m feel we’ve taken one step forward and two steps back.

So yesterday it was finally confirmed that SI would not feature at the Fertility Show in November because ‘it didn’t fit in’.  I was gutted.  We have recently determined that statistic that 1 in 3 of the 1 in 6 couples struggling with fertility already have a child – that’s 1 in 18 with Secondary Infertility.  It’s great to now know this stat, but it’s frustrating that people still don’t recognise the condition to give it focus.  It’s easy for them to say “Secondary Infertility is important” but still they don’t give it the attention and exposure it deserves and as a consequence the condition remains in the dark, as do sufferers.

My first problem with SI was simply that I didn’t know the name existed.  If we could just shout the name out from the rooftops more sufferers would become engaged.  If we could get them to identify with their own situation they would know where to seek more help.  That would be a huge start.

If we could help treatment providers and support networks to learn how to deal with SI sufferers and their unique situation it would help make SI “fit in” and therefore provide the appropriate information and support in clinics.

My messages are simple

Secondary Infertility is still Infertility

Sufferers are not alone, should not feel guilty and are not greedy

There are unique and specific challenges that need to be addressed for sufferers

More people in the Infertility profession need to recognise the condition

Communication and awareness must be improved

Next month I will be launching a brand new website with information and support specifically for SI sufferers.  A brand new online support and information portal that is UK based.  We may have not made it to the show in 2016 but boy oh boy, 2017 here we come!!…….

 

 

 

 

 

 

 

In their shoes – and I don’t like it!

Each time my treatment failed or my period came, I became hardened to that pain and became deaf to my loved ones soothing words.

Their sympathetic repetitive phrases used to drive me mad and the helpless look on their faces as they struggled to find anything to say to help me was almost as painful as the despair itself.

I did feel sorry for them.  I did long for them not to feel any pain and often, once the realisation that we had been unsuccessful yet again had sunk in, I’d start to dread telling friends and family, knowing that they too would be hurt once more.

Recently, I was supporting someone I have known for years through her fertility treatment. This time, her fourth cycle, she seemed to be passing every hurdle brilliantly and she got further than she had ever got before.  And then she shared her tragic news.  It was not to be.

Whilst I have supported a number of girls through negative tests, miscarriages and failed cycles, this one hit me harder than any before.  I was convinced it was their time.  I had no words.  I literally did not know what to say to her and for the very first time I wanted to get on the phone to my Mum, brother, sister in law, big sister, friends and wider family and say how utterly sorry I was for everything I put them through.  For all the times I growled as they tried to find something to say.  For all the grunts when they said they were sorry for us.  For all the times I left the silence between us as they struggled to make me feel a little bit better.

It was horrid.  I felt useless.  I realised just how hard it had been for those around us.

In the end, after expressing my sorrow of course, I used the words with her that I found to be the only words that helped me. “It’s shit”

I found in saying these words to friends and family, it let them off the hook in trying to find clever words to fix the situation.  There are no words, there is no fix, the situation is just shit.  I knew it, they knew it and actually, bluntly acknowledging the fact always made me and them feel better.

They say swearing demonstrates a poor vocabulary, but when all else fails – who gives a shit?!

Hello my old friend – Fertility Road Magazine

The waiting room at Hull IVF Clinic is a very strange place.  For some reason they have all the chairs in a square, facing each other, which is strange given most clients don’t want to look at anyone else or be seen by anyone else.  They then have what I always thought was the most bizarre collection of fake Irises in the centre, which I guess could perhaps be strategically placed to disguise clients?  And they then have a couple of coffee tables with magazines, which is where I first came across Fertility Road magazine.

Now don’t get me wrong, it’s a lovely waiting room, very calming, with lovely personnel attending to you.  There is a water machine, tea and coffee station and lots of information on the walls to read whilst you are waiting.  There is also a board full of photos of babies obviously successfully born with the assistance of the wonderful team there.

And yet, as I used to sit there, head down avoiding eye contact, I couldn’t help but look at the next person through the door, check out the next couple leaving the consultants’ rooms or the next lady calling at reception to collect her drugs.  It was like a flipping car crash that even though you didn’t want to look you just couldn’t help rubber necking!!

And so, Fertility Road magazine became my life saver.  I’d stare at the pages of the latest edition trying to focus on anything but anyone else around me!  It was also jam packed of information targeted at people like us, unlike any other publication around.  It was so refreshing!

As my mission to raise the profile of Secondary Infertility got new impetus this year, I was so delighted when the Editor agreed to publish a short article I wrote about my ambitions to break taboos and encourage people to talk about all kinds of infertility.

If only I could have told that broken girl in the waiting room the journey she would go on and how one day she might end up in that magazine she was holding.

Then again, she would never have believed me!

That look on his face.

As much as sitting on the loo staring at the dark streak of blood on the paper in my hands gave me a kick in the stomach, that was nothing compared to the pain of having to tell my husband.  It wasn’t bad enough that I should have the earth shattering discovery that I was bleeding and my dream of being a mum for the second time was over for another cycle, I then had to find the courage and strength to impart the tragic news to the person I loved the most, my husband.

Infertility is often all about the woman, for obvious (unfair if you ask me and God IS a man but anyway) reasons.

I could be broken, physically, mentally and emotionally destroyed yet I would have to muster that certain something that would not only enable me to deliver the news, but also be there to comfort and support him when his dream of becoming a father was snatched away, again.

I was talking to another girl recently about ‘that look on his face’.  That little boy lost look that cannot disguise the immense, acute pain coupled with the longing yet confused look as to what to do next.  Should I hug her?  Will she hug me?  Can I change this?  Can I rewind time?  Can it be true?  It is alright to cry?  Do I really have to look at that paper FFS?

There is no disputing that men are often overlooked throughout the treatment and it’s pleasing that mens’ fertility issues are being talked about more and more.  Yet still, no matter how much attention is paid to perhaps Men-related causes of infertility, whatever the cause, there will always be that look between and woman and her partner when she has to deliver the news.  It’s unavoidable, and I guess in some relationships, that look could be on a female partner where the other is trying to get pregnant.

I will never forget that look.  I’ll never forget the fear and fury and having to tell someone that news knowing how devastated they would be.  When I needed support the most I had to find strength to comfort someone else.  Yet it’s the way it was, will be and can only be.

Will it always hurt this much?

I was recently asked by someone who was hurting from a failed attempt ‘Will it always hurt this much?’

My first gut response was to blurt out yes with my next breath, but fortunately I was able to hold onto that thought and think some more about it.

The pain of infertility is a lot like grief I believe.  You grieve for a child you lost of thought/dreamt you had, you grieve for a life you might have had together and you grieve for the ability to create life which seems to be taken away from you.

Grief sucks.  It hurts.  It’s an immense pain.  At the time you feel you will never get over it and it will always hurt that way forever.

Time isn’t a healer but time is brilliant at helping your body, mind and soul adapt to carry that grief.  You learn to live with loss.  You learn to adapt your thoughts, behaviour, habits to cope with the loss of whatever it is you once had but now have to live without.

You learn to live with infertility.  You wake up each morning learning a little more how to deal with everyday life carrying the burden that you are still unable to conceive.

I don’t believe it hurts less.  It might not be as acute as on the day your period starts or the day you miscarry or the day your scan doesn’t show a heartbeat but it will always be there.  You cope better, you get stronger, you get wise to the world around you and adapt to stop it hurting you as it did before.

And so my answer?  The pain of fertility never leaves you, but don’t worry, you get stronger.  This will get easier and being strong will become the norm.

With love to anyone hurting.

New Chapter Release

https://morelovetogivebyhelendavies.com/sample-chapters/chapter-15-staring-at-the-face-of-frightening-statistics/

So those who know me well, probably won’t be surprised to learn that I’ve started writing another book, which is again about Secondary Infertility, but is more of a guide and practical support for those suffering and for those around someone suffering.  It will hopefully be an easy to digest ‘friend’ to anyone wanting to understand more about their situation and on realising it is a ‘condition’, the content will also hopefully make them feel empowered and a little more at peace.

In researching this new book, I have been all over the blogs and websites recently and what has struck me is that whilst my babies are now 2, nothing has changed.  There are new women every day, bravely joining blogs and forums asking the same questions, feeling the same fear and wanting to know more information.  I never really thought the problem had or would go away, but neither had I given it much thought since I had stopped visiting the sites, so this came as somewhat of a surprise.  And it saddened me. 

I am currently a ‘text buddy’ to four girls, all going through fertility difficulties, all with different stories and situations, but all share the same pain.  And all have the same thirst for knowledge, hunger for understanding and desperate need of support.  The feeling of helplessness I often feel does quite bother me and I have an appreciation of my close friends and family who clearly would have had the same feelings in supporting me on my journey.

And so, the only thing I can do is to show understanding and so I thought I’d share another chapter from More Love To Give – An IVF Memoir, and enlighten them, and anyone else in a similar boat, that those feelings they have are normal and it’s OK to feel that way.  This chapter describes the first group meeting we attended before any treatment started and gives an insight into how the emotions make your brain run riot in your head and your heart bang twice as loud as I’m sure it should!

My putting the proverbial pen to paper a second time isn’t that I’ve given up on this first book.  Far from it.  I’m bloody determined to get it published but have been a little sidetracked in recent months.  The second book is a ‘buddy’ for the first, a partner, a support to help it get to it’s final destination.  And sometimes, that’s all any of us can be.  

I hope you enjoy x  

 

 

 

 
Even bubble bath is getting in on the act!

Forgive yourself this week

There’s literally no escaping it.  The news is everywhere.  There are follow up stories, features, in-depth analysis, write ups, opinions, photographs…….we have a Princess!  Princess Charlotte Elizabeth Diana arrived this week and the news was greeted with great joy around the world.  Well almost.

As a royalist all my life, I was excited to find out whether it was a boy or a girl and delighted to see William tenderly kiss the head of the baby Prince George, now newly promoted to the role of big brother.  He’s been hidden from cameras but has clearly grown up, walking now, pointing and becoming a proper little boy yet still Daddy’s baby boy.  No time has seemingly passed for Kate or Will to start to notice how quickly he is growing, how the age gap is widening or wondering what sort of big brother he would be.

This fact won’t have escaped the thousands of families out there who are doing just that with their own children.  Wondering if they will ever be able to give them a sibling, counting the passing months with the arrival of each period as the gap between any would be brother or sister gets bigger and bigger.  Facebook groups for Secondary Infertility were literally littered with women hurting from this news.

It’s not that they wish Kate ill for having a baby so quickly after George (or for looking so amazing just 10 hours after having a baby lol!) and it’s definitely not that they wish Kate had had to struggle in the way they are.  

It’s just wish they were in her shoes (nude Jimmy Choos btw) and were finally celebrating a sibling. 

It’s a gut wrenching anxiety that they cannot control that makes them feel so exasperated that they have no control over the outcome of their situation.  They simply can’t give a sibling to their child at the moment.  When others seem to pop them out all around them, the truth that they are seemingly unable to do what is so natural is torture.

It’s the fact that news of a royal sibling will undoubtedly prompt friends and relatives to start asking when they will be knocking out another.

It’s the way that whichever way they turn they simply cannot escape the news that there is a brother or sister for George.  Nappy ads on TV, bubble bath ads on social media, newspapers, magazines everyone talking about it…even the flippin Royal Navy did their own photo on Facebook to celebrate.  There’s simply no escape. 

It’s the fact that thoughts and feelings are regularly entering their heads and hearts and they hate themselves for it.  Dark thoughts, feelings of jealousy, anger, deep envy and frustration.  They aren’t nasty people, don’t normally have such dark thoughts but such is the pain they can’t stop them and they hate that fact.

It’s the tears that have come, uncontrollably, without warning and with no specific trigger. They just fall, silent warm tears, mourning a child that doesn’t exist yet, prompted by a child someone else has been able to bring into the world.  It’s the release valve that they have, letting out some of the frustration, in big, wet tears that spill out when they least expect. 

And above all, when they are trying their best to get their head down, get on with life, act normal and be positive, this is just another huge reminder of the battle they face.  The fight they feel like they are losing and how they feel they are letting their child down.  The feelings never leave them but sometimes life is bearable and they can get on with it, momentarily forget the pain and move on.  This week, they haven’t been able to. 

So if you are currently feeling lost in a world that is moving on with new babies, whilst you struggle with Secondary Infertility take heart knowing that someone understands how you  feel, cut yourself some slack and forgive yourself for feeling the way you do this week and more than anything, realise that you are not alone.  #bestrong