My Story 

I was an odd child. I really was. Latina, little but with big eyes staring up at the world and everyone in it like a woodland creature. I struggled with…well just about everything. I couldn’t crawl, I slithered around like a snake. I stood up quickly and walked about and then would sit for hours. 

And then came the bruises. Now, me and my beautiful collection of bruises have long been the discussion of onlookers. And how do they occur? Honestly, I’ve been bruised by a strong gust of wind before and I’m not even joking. About 15 years ago I had a series of blood tests done at the behest of an endochronoglist and it was all fine. But….what could explain the random bruising??

At my young baby age - when they do welfare checks on mums, they expressed concern about the bruises. My parents were likely to be a tad apprehensive about being judged but the truth is, even hugs bruise me. I know, so unfair right?!? The numbers of times in the past 40+ years I’ve woken up or gone to bed with another purple spot to add to my list was ridiculous. At some points, I’m sure I am more bruise than body. Honestly - it like an inverse Mr Blobby! 

And then the pain. Or rather lack thereof. So turns out for years, I wasn’t feeling as most people feel. Don’t get me wrong, yes I can feel and yes I can know what pain is. But I present differently. I get quiet, I disassociate and I wonder off - actually happened to me as a stage hand once. I had to pass flowers to a dancer just off in the wings - turns out I spaced out that I didn’t even feel them rip the flowers out of my hand! I really was in another universe! And yes, the culprit is pain. I get that it is pain but my self defence mechanism kicks in or something (I’m no expect so if you are explain that to me please!). Then I just get quiet and grumpy. I don’t even get hangry - that is very worrying! 

But what I can do is stretch…sliding splits are my speciality and I have been doing them for years. I can’t now which is a shame as it does bring a cheer or two. And dance - I love to dance, I can dance and I pick up dance super quickly. 

The Cold - I will dedicate time to writing about my and the cold as we are in a deep and meaningful relationship but my goodness - do I feel the cold. I wear thermal leggings even in summer - until 25 degrees and then still get goosebumps if the sun goes in. It really is quite annoying - I have to over think the whole day weather, use layers, extra socks, scarves, no v neck tops - my skin gets too cold.  

 Diagnosis

So fast forward to now and thankfully having a lot of time on my hands during the first lockdown meant I stumbled across a number of videos from people talking about hypermobility and discovered a whole new world. I became my own Sherlock Holmes and began to self investigate. Using my little grey cells (which turn out are super stretchy - eek) I finally deduced enough to take myself to the GP and get referred to rheumatology. And then after seeing them, taking the Beighton Test or score, I was finally diagnosed with HEDS. There are currently x13 different types and many of us Zebras may have one or a few I believe to varying degrees. I shall talk more about my type later on. But for now, join me as a (re)learn what works for me and how I live going forwards now I know what my condition is and what other conditions are also related to my type. 

For now, keep well,

xx