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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