Wednesday, 4 September 2013

Living with Poise

I was trying to explain how managing my HMS/EDS affects how I sit and how I move.

Like if I am standing, it is with the kind of body awareness and concentration found in a gymnast on the beam. And sitting; to minimise my symptoms I have to sit with good posture. Not like I have a poker in my spine - in some imagined concrete casting of 'perfect posture', but like alive and ready to move with all my muscles switched on. This is how I have to be to keep my joints aligned and limit blood pooling in my abdomen (otherwise my blood avoids my brain, which is highly inconvenient.)

I concentrate on body position all the time (my proprioception isn't accurate enough to work out body position automatically)- only of course I don't remember to all the time. So I forget for a bit - reverting to the spuds position, then symptoms start to build and I remember and switch back to good posture again.  It's taken years -starting from sitting well for a few seconds -  to build up to where I am now, and will probably take work for the rest of my life. But it's worth it.

Anyway. I was trying to explain all this to a dancer, who said simply "I'd call that 'poise'".

And there you have it.

"to rest in equilibrium; be balanced." 
"suspense or wavering, as between rest and motion or two phases of motion"
(Definitions from


Balanced - but ready for movement.

That is what I do. I am learning to live with poise.


  1. Perfect. Love it!

  2. My daughter has a mild case of ED and I've seen her sit in the spuds position on many occasions. She also periodically get severe migraines and I'm wondering about the blood pooling in her stomach and not traveling to her brain. I wonder if the spuds position could be contributing to the migraines?

    1. Hi Wally, For me, poor posture definitely can cause headaches and good posture can help them. And logically less blood to the brain would make migraines more likely. So it might be worth working on posture/poise for a while to see what effect it has. Hannah.


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