There is a note in my diary reminding me that I want to write to Oh Comely!, a magazine which inspires hand written, decorative notes not personalityless emails. The note says I want to respond to something I read and tell them about proprioception. But the note is possibly a year old now and I have long passed the issue on to a friend. All my magazines are passed on, turned into collages or left in public spaces for strangers to discover.
proprioceptive: Relating to stimuli that are produced and perceived within an organism, especially those connected with the position and movement of the body.
Origin: Early 20th century: from Latin proprius ‘own’ + receptive.
Oxford English Dictionary
Proprioception is the sense of where your body is. It is how you know where your arms are when the lights are off. How you can walk without having to constantly look at your feet.
If you have a huge growth spurt, your proprioception can be temporarily impaired which is why we see clumsy teenagers who don’t seem to fit in their body. That said, for most people, most of the time proprioception just ticks over in the background.
For people with certain conditions, including EDS, proprioception doesn’t function as well as it should.
I wake in the night, slowly coming back to myself from my dream world. Before I can rouse myself enough to move, I lay still, figuring out my body. I may not have an arm right now for all I know. I’m trying to puzzle out where my left hand is. I know there is a hand on top of a hand because of the feedback from my splints. I’m awake enough now to summon up the energy to move that arm which may no longer exist. How I can move a limb when I don’t know where it is boggles my mind. It doesn’t take too much movement before I figure out where it is and my arm reattaches itself to my body map.
For me, this is not an unusual night. My sense of where my body is is not consistent. Some days I have a better idea than others. To someone not used to it, waking up “missing” an arm might be scary, for me it’s normal and I can quickly reattach it. I can’t always put my two fingers together, end to end, without looking. There are certain muscles that I can’t tense because I can’t find them in my mind to send the messages.
My sense of myself seems to be less when I’m ill, when I’m tired, when I’m hormonal or worried or other states of vulnerability…
Perhaps the hardest to understand and hardest to cope with is when I “lose my edges”. This mostly happens to my legs. It is like I am spilling out into the world. I no longer have skin containing me. I have no boundaries. I am the universe and the universe is me. And I find that terrifying. When I lose my edges, I kick my legs a lot, I fidget, I bang them against my bed. I feel out of control and I feel unsafe and unsecure. It feels like my nervous system is out of control pr non existent. It is trying so hard to find my body that it is in overdrive.
Returning to the idea of a mental body map, I have lost the structure of my legs. I know my legs are there and I have a vague sense of where they are but I don’t have any sense of where they end. My body map, like the rest of me, has gone floppy and nebulous. I merge and meld with the universe and it is terrifying.
One of the reasons this is so tough for me is that it feels a lot like the physical aspect of a panic attack or an asthma attack – the disconnect from your body that you experience when you aren’t getting enough oxygen. The very feeling of this is enough to trigger an anxiety attack and it has taken me years to figure out that losing my edges and panic are not the same things, they just feel incredibly similar.
I don’t want this just to be a post trying to explain the sensation, although there is value in that alone. I want to suggest my own ways of dealing with this in the hope that someone else can benefit.
I don’t have many ways of coping and would love to hear from others, but here we go:
- There are some ideas on my post about grounding, including telling myself out loud that I am safe
- A visualisation where I mentally wrap bandages around all my body, bit by bit
- Blankets wrapped around me
- Rubbing my limbs with hands, lotion or hairbrushes, anything to re-establish the boundaries
- Stretching or, when possible, using weight based exercises to help eg arm curls with tins
More about proprioception: