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Article ** Trigger ** Miscarriage isn't taboo - and neither are syndromes.

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Miscarriage isn’t taboo – and neither are syndromes! It’s okay not to be okay…

I have thought long and hard about writing this blog, but then I remembered – writing is my release. Be that in the form of a poem, a blog, or random scribes on tatty pieces of paper. Writing is my therapy.

It just goes hand in hand that it might help others too – and that’s what I want.

Let’s start with the EDS… Ehlers Danlos Syndrome to give it’s technical term. There’s some decent information online about it, especially on http://www.ehlers-danlos.org if you’re interested.

I do my best to document my life as it is, day to day warts and all. I’m not one of these who has a social media life and a real life. If I feel it I will say it. I don’t want sympathy I just want people to understand and raise awareness of a rare condition.

Dislocations, subluxations, gastrointestinal problems, sleep problems, mobility problems, and the pain.

It’s odd, I have had it all my life, but wasn’t diagnosed until I was 28 and it didn’t get worse until February this year. You see, I had started a new job. Knowing my limits it was an office based job.

Only it wasn’t; I was walking 6 miles a day, coming in and being asleep by 6/7pm. I kept going though, until my body gave up and my knee popped out.

I lost count of the times I was in my doctors office crying with the pain. I was signed off sick.

I would like to point out I do not blame my team at work, they were fully aware of my condition but it was HR who said it would be fine as it was an office based role. It wasn’t.

Fast forward to June, and I tried to go back. I say tried, because I ended up having some form of nervous breakdown on the morning I was due back and sat on the bedroom floor crying.

Cue an emergency weeks holiday and to try again in a weeks time after yet another trip to the doctors.

It’s the other adaptions you have to make too. I’m 31 and I have a mobility scooter, wheelchair and crutches. I have a rail to help me in the ‘shabath’ as I call it (a sit down shower). I used to walk for pleasure, I loved getting lost in the great outdoors with my headphones in – 6-10 miles a time. Now I can’t manage stairs. But I have adapted.

I’ve since found out that EDS can exacerbate after a trauma (my knee dislocated in February). It’s been a rough year getting used to the new ‘me’ with some tantrums along the way, but I never gave up.

I have an amazing support network round me, my family, friends, my Paul and his two amazing monkeys. They’ve been the reason I haven’t given up if I’m honest.

That’s all I will go into on EDS atm, I will do a longer post another day about it but if you have any questions please do not hesitate to ask me.

The main subject of this blog is miscarriage. Yes, that word that makes people retreat into their shell and not know what to say to you or those close to you. The word that strikes fear into the heart of people who really want to help but haven’t a clue how anything they say can make it any better.

It can’t. But they are appreciated. Support is appreciated. Listening is. But please don’t pretend you understand unless you have been there. I mean that in the nicest possible way – until you have experienced such loss you honestly cannot imagine it.

What did I do wrong? What could I do differently? Nothing and nothing. According to the NHS 1 in 4 recognised pregnancies ends in a loss. That’s a quarter. Now think of how many people get pregnant and that is a huge number, a quarter. Yet it still seems taboo.
 
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HelpMindsHeal

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I remember the day I found out I was expecting like it was yesterday, after the year from hell with my body, looking at those two little lines on the stick I was overwhelmed.

I went to tell my family, and my mam cried her eyes out. You see, I had an ectopic in 2013 and only have one side so the chances of falling pregnant aren’t great.

We then told Paul’s mum and dad. His mum swore – she hasn’t sworn since 1974!

Then my dad and Sarah. Everyone was over the moon. Everyone knew it was early days but still – what a gift.

And then it began. A couple of days later I was at a rheumatologist appointment and the pain kept getting worse. By the time I got home I couldn’t cope any more and phoned 111, who sent an ambulance.

I ended up having to stay in hospital that evening, with poor Paul propped up in a chair next to me.

They kept checking my hormone levels every two days and although they weren’t doubling they were going up…

Then, on the morning I was due to attend an early bird sure start session the hospital phoned and asked if I could go and see the head gynae consultant.

He, his assistant and a sonographer all told us that the chance of ‘pip, making it was around 1-2% but to come back in three weeks for a scan.

The longest three weeks of anyone’s lives I think, especially given I was on bed rest and to be quite frank going a little loopy.

I asked my mam to come to the scan with me and Paul, when it eventually came round. I felt ill. Sick with nerves, anxiety, everything.

There was a heartbeat. I don’t know if I have ever seen so many tears in one room. It was amazing. We had beat the odds so far. We were having a precious gift.

We still couldn’t get too excited, but we did allow ourselves a little bit – the kids found out and were amazing. Absolutely over the moon god love them.

Then, on the Monday, I said to him that I didn’t feel right and I ended up in a&e – who just said it was my EDS.

I put up with any pain, and I would have put up with a thousand times more just for pip to be oKay. But in my gut, I knew something wasn’t right.

I saw GP’s, midwives, a&e again and told them all the same. The pressure in my pelvis and the pain, including chest pain was unbearable. But again, EDS was deemed to be the culprit.

That is, until one Sunday evening I went to the toilet and spotted blood. Not much, but enough to get my attention. I woke Paul up, who said he would phone my ward in the morning for me. I was booked in for a scan on the Thursday.

We didn’t tell any family, we had just lost our dog, and didn’t want to stress anyone further so we just told a couple of close friends.

The Thursday came, and those all too familiar feelings of anxiety, sick, worry and utter dread struck. We went in. I don’t think we spoke the entire journey there.

“I’m really sorry” she said. “There’s no heartbeat.”

In the exact same room that the happy tears had flown in just a short couple of months ago, I now felt like I could drown in the flood of tears in this tiny room. Paul held me, kept telling me it wasn’t my fault, but I was heartbroken. Those simple words she said ended or put on hold our plans for the future. There was no more pip, we beat the odds to get that far for it to be so cruelly ripped away in 5 minutes.

They decided to leave me to pass pip naturally, but the next day, after no sleep and an horrific dream when I did manage 20 minutes sleep I phoned for their help.

I had to go in and take a tablet. Then four more on the Saturday morning. My god the pain. It was constant contractions and still no passing of pip. The mental and physical pain I can’t even describe. Paul never left my side but his face said everything that he couldn’t. We were simply waiting to pass pip.

I had to take two more tablets Sunday morning, and still the contractions stayed. He would come and sit in the bathroom with me every time, and as we do, we tried to use humour.

I remember the cricket was on, and between me him and dad, we wondered who would be out first – Steve smith or little pip. Sick to some, maybe. But it’s how we coped. (It was, astonishingly, Smith!)

And then it happened. Just as we were leaving for hospital the pain went to a 15/10 and I needed to push. He stayed with me the whole time.

I remember feeling rotten to my very core, numb, empty, everything you would expect. So we went to my Mam’s to see the puppy and have a cup of tea. Because that fixes everything.

Then we came home. We just laid there, I finally slept, we sort of went round in a haze. Like a bubble, this wasn’t real life.

There’s the longer lasting effects too, the natural anger at why us? The natural what happened? But there are no questions we have that anyone will ever have the answers for.

I was told my body would take 3-6 months to heal due to the EDS, and given medication. It made me a zombie so I asked to change it.

I stopped bleeding after about two weeks. I was actually thankful for this as I kept saying to him it just reminds me.

Then I slept. Mainly during the day but I just slept. Was I escaping my mind? Maybe. Paul sleepy, escaping his too.

I knew the dates in my head, when my scans were due, what my due date is. I’ll never forget them.

Some days I don’t want to get out of bed, some days I do, some days I nip to Tesco on my scooter for bread and milk. Some days I go to the football, which I missed from February till October. But some days I can’t do anything. And that’s okay.

We’ve been lucky as I said earlier with the support network we have had, on and offline. We wouldn’t have got through anything without them. And I definitely wouldn’t have got through anything without Paul. He was my absolute hero.

So there’s my story, in all its ‘glory’. The reason for telling it so brutally is because it’s not talked about enough. People hide and shy away from it. It affects not only the mental health of the woman, but the man too, massively. Seeing the woman they love in so much pain physically and mentally.

I am so sorry it’s so long, but there’s almost 5 months worth of thoughts in there.

So pip, you will always be our baby. You will always be Paul’s third child, my first, and our first together. If we are ever blessed in the future with a child, you will be the big brother or sister.

Always.

But for now, we keep talking, it’s healthy. We keep humour when we can, we try to keep smiling and keep putting one foot in front of the other. Because we will be okay. There’s no other option.

If you have made it this far, thank you, seriously thank you. If this can encourage one person to speak more openly about infant loss, still birth, miscarriage then I have achieved my mission.

Please don’t send sympathy, if there is any sending to be done – please send it to someone you think it might help.

Thank you xxxxxxxx

Written by and shared on behalf of Lauri Cox
 
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