I’m finding festive fun despite my rare condition
Since I was little, I’d always been extremely flexible
As a child, I found my calling as a gifted and promising gymnast.
Said to be double-jointed, I could put my legs over my head and do the splits with ease.
My instructors were always so impressed.
Unfortunately, the flip side was that I was constantly dislocating my joints, ending up covered in bruises.
My shoulders seemed to pop out of their sockets several times a week, and I was plagued by frequent injuries.
‘You need to be careful, love,’ Mum fretted.
But it wasn’t just during gymnastics, though.
It seemed the tiniest knock or jolt would leave one of my joints dislocated.
And that wasn’t all. I had chronic back problems and tummy pains, and picked up every bug that was going around.
‘A sickly child,’ people called me. They weren’t wrong. Aged 12, I was having so much trouble with my joints dislocating that I had to give up my beloved gymnastics.
Doctors couldn’t diagnose me, though.
I was just seen as unlucky, clumsy maybe – or worse, a drama queen, someone who liked the attention being ill gave me. But I hated it. As I progressed through my teens and started working in a bank, my aches and pains got worse.
Some days, I was in so much pain, I couldn’t walk or even get out of bed.
I battled on as best I could.
Then, in 1998, aged 21, I met Adrian. I warned him about my health problems, but it didn’t put him off. ‘I’m here for you,’ he said. Despite my health still being up and down, two years later we had a daughter, Lillie. The labour was brutal. Lillie had to be delivered by emergency Caesarean, as she couldn’t get through the birth canal.
It was the same two years later when I was carrying our second daughter Maizie.
I hoped, now I was a mum, somehow my health problems would settle down, allow me to concentrate on my kids.
But, if anything, my problems grew worse.
My shoulders and knees constantly dislocated, and I had to have countless operations.
I even needed an operation on my feet as they’d started to splay outwards like a duck.
‘Why does this keep happening to me?’ I wept to Adrian. It was so unfair.
Then, in 2006, I was admitted to hospital after a mass was found in my abdomen. I was in agony, and couldn’t even eat.
Hernias, tumours, cysts – the doctors came up with all kinds of theories. But it was only after an ultrasound scan that the cause was found.
‘Your right kidney has detached and found its way to your abdomen,’ revealed the chief sonographer.
‘What?’ I asked, horrified.
How was that even possible?
I saw a specialist surgeon, and underwent an emergency operation to pin my kidney to just below my ribcage.
After, the surgeon referred me to a geneticist.
‘Your kidney is unusually stretchy,’ he explained.
The geneticist took no time in diagnosing me.
‘You have all the symptoms of Ehlers-danlos syndrome,’ he revealed.
I’d never heard of it, but now I discovered it was a rare genetic disorder that affects connective tissue.
As a result, my body was too loose, too stretchy. ‘That explains it,’ I gasped. It was why people said I was double-jointed – and why my joints dislocated so easily and so often.
Even as I was warned EDS was progressive and would get worse, I felt relieved. At last I had proof I wasn’t ‘clumsy’
I was seen as clumsy, unlucky, a drama queen
or ‘melodramatic’. I had an illness. Sadly, I soon realised, my girls did, too.
They were often unwell and had hypermobility.
Sure enough, tests revealed that, like me, they had EDS.
After I got my diagnosis, I retrained as a teacher, but had to medically retire after a nasty fall at school left me with a dislocated shoulder that never went back in.
Many more have followed.
In the past 20 years, I’ve had 26 operations and counting.
Last October, I needed to have surgery to fuse my left shoulder permanently into its joint, and had to wear a half-body cast for four months.
It means I’ll never be able to move my left arm properly again, but it was the right call.
My mum Jane, 71, became my carer, and Adrian, 47, Lillie, 16, and Maizie, 14, all help where they can.
Determined to stay cheerful, when Christmas came round, I had a special, festive cast made, brilliant-red complete with red ribbons, white trim and a black belt – just like Santa Claus!
‘Why should the kids have all the fun?’ I joked.
I wanted my girls to know that, despite all the problems our EDS causes, there is still joy in life.
My condition doesn’t define me, and it won’t define my girls either.
In the past 20 years, I’ve had 26 ops and counting