I am a walking disaster zone. The theme tune to my life goes something like this:
“Ouch!” – me walking into the door frame on my way to the loo after I’ve woken up.
“Owww-a!” me jabbing the door latch into my arm on my way back to the bedroom.
“Umpf!” – me missing a step on my way downstairs and only avoiding a fall by grabbing the banister, which then pulls the ligaments in my shoulder half off.
“Bugger it!” – me catching the edge of the table with my cup and sloshing tea everywhere.
“Ow, shit, ow, shit, owww!” – me stubbing my toe.
*Sigh* – me dropping the car keys.
“Ouch-a!” me banging my head on the door getting out of the car.
“For fucks sake!” – me slicing my finger open cutting an onion.
“Ow, ow, ow, ow, ow!” – me burning my arm taking something out of the oven.
“Bollocks!” – me missing my mouth and spilling POM juice all down my jumper.
“Umpf!” – me missing a step and falling back up the stairs.
“Ouch-a!” – me ricocheting off the door frame on my way back to bed.
“Hmmmm…..” – me lying in bed realizing half the skin is missing from my elbow and I’ve no idea how it happened.
As a kid, my Mum used to tell me “well slow down and stop doing everything at a hundred miles an hour!”. It turns out that wasn’t the cause of my “clumsiness”, it was poor proprioception which is common in people with Ehlers-Danlos.
Proprioception is one of our senses and is the ability to know where our limbs are in space so that we can judge distance and movement. It is based on receptors densely packed in the muscles and tendons. Proprioceptors measure physical proprieties such as muscle length, tendon tension, joint angle and deep pressure. Signals from this sensory orchestra are then sent by nerves through the spinal cord to the brain, which continuously feeds and updates the sensory-motor maps of the body. However, in EDS this feedback loop appears to be faulty.
It isn’t yet known why some people with EDS have poor proprioception but it may be that, due to tissue laxity, proprioceptors are unable to give the right feedback and the body is continuously receiving the “wrong” motor information about where it should be. Certain exercises are designed to re-train the brain and improve proprioception and a good Physiotherapist should be able to offer guidance on this – sadly they didn’t work for me but are still worth a go.
When you have EDS you just learn to accept that not a day will go by when you don’t have a cut, graze or bruise. It’s not very ladylike to put on a dress with legs that look like they’ve been trampled by a herd of wild elephants, but on the up-side I’m considering taking out shares in Germolene and Elastoplast – I’d make a killing 😉 .