Friday, 20 May 2016

Proprioception and dance discoveries.

People with connective tissue disorders like Ehlers Danlos Syndrome often have poor proprioception - the body's intrinsic awareness of itself; knowing where your hand is even if you aren't looking at it.

Poor proprioception results in failing the doorframe slalom and much general 'clumsiness'.

Despite my EDS, I always knew my proprioception to be unremarkable. Doctors said my body awareness was fine, and I'd be able to tell if it wasn't...wouldn't I?

During a conversation in my 20s I commented "You know that thing where you lie down and forget where your legs are until you move them?.." 

It turned out they didn't. No-one else in the group 'lost' their limbs when relaxed and not looking at them. No-one else had a childhood game of "guess where you left your legs without looking at them and then move them to see if you were right".

It also seems that when a Dr tells you to close your eyes, then moves your leg and asks what angle your knee is bent at, most people just answer by 'knowing' and don't use the logic of "this part of the leg feels like it's this angle because of this sensation from clothes/skin folds/muscle tension, that part of the leg feels like it's at that angle, so the reality is probably half way between the two". 

So I had to accept that my proprioception, though present, is pretty rubbish.

Not that it changed much. Other than I now know why I find physical pressure so... grounding?.. comforting?... home? (it's hard to find the right word for the certainty of position that it provides - and the resulting mental and physical relaxation). My normal was still my normal, and it didn't really matter if other people were a bit weird compared to me.

But sometimes something happens that really brings my proprioception issues into focus. Like an exercise in dance last week:

In partners, Person A shuts their eyes and dances while leading person B. Person B, with eyes open is led but also keeps person A safe - preventing collisions etc. 

This is apparently aimed at exploring your body's proprioception - 'listening' to a sense that we don't often consciously take notice of.

Everyone else loved it - found it initially strange, but once they'd learned to trust that person B would keep them safe, it was really freeing.

But I couldn't hack it. It was horrendous. I stopped after a few seconds. Even the memory of it makes me want to curl up in a ball. Yurk.

I'm not sure there are words to describe it, but I shall try:

I sat in my chair and my partner had a hand on my shoulder. 

Being in a wheelchair you cannot gauge distance. A small push on a smooth floor can travel centimeters or meters. and you have nothing to give you any concept of distance traveled.

The hand on my shoulder moved with me - it wasn't a reference point, it gave me no usable information. I had no idea where I was. I don't just mean I didn't know where in the room I was - I couldn't even tell I was in a room. Other people spoke of having a sensation of where they were - even if they weren't right. The picture in my head was blackness. Total nothingness and a desperation to 'find' something that wasn't nothing. I wanted a solid reference point. I gripped my wheels, and made a few tentative pushes. Each time I let go of the wheels the sensation of being lost was overwhelming (or possibly the lack of the sensation of being 'here'). I wanted to cling to my chair so I could feel...real. My brain going into overdrive in it's attempts to get a handle on where my body was. It is probably the closest I've ever been to having a panic attack. The only time I felt 'connected' was when I was holding my wheels still. Gripping them so tightly it hurt and leaning forward so I could feel my torso against my legs.

I opened my eyes.

I wasn't using and appreciating a sense we often don't notice, I was discovering I didn't have enough of that sense to be able to function. And I hadn't expected it. Yes I knew in an academic kind of way that my proprioception was off - but that's not the same as finding yourself totally incapacitated by a lack of it.

So instead of continuing the exercise we sat and discussed the experience. 

I thought if I tried something similar sat on the floor instead of the chair, I'd be OK - maybe it was because the wheelchair meant I had no connection to the security of the floor - so the next 'eye's shut' exercise I tried lying down (it was fine) and then moved to sitting up, decided it was a bad idea (ARGH WHERE AM I?) and returned to maximum floor contact again.

In hindsight I should probably have done something to counteract the sensory deprivation that had come close to totally overwhelming me. Given myself some really strong, solid, proprioceptive feedback. Perhaps got a bear-hug from someone. or squashed myself into a corner for a bit, or hugged something heavy. Like the corner of the wall. Rocking can help if my lack of propriocetion is just being a bit annoying, but not when it's reached "HELP!! I CAN:T FIND ME!!" stage. (...OK, so my sense of proprioception probably doesn't change, but my ability to use the layers of coping strategies that I rely on certainly does!)

Either way, I shall not be dancing with my eyes closed for the forseeable future. Not unless I will be getting a lot of feedback from external pressure to compensate for my dodgy proprioception!

[Note: Poor proprioception is not limited to EDS. I believe it is also common in autism and sensory processing disorder. I wonder if my experience of poor proprioception and sensory seeking to counteract it is similar to that of some people on the spectrum.]

Saturday, 14 May 2016

Anxiety, depression, cards and teamwork

Over the past month I've had the privilege of working with a group of college students who live with anxiety and/or depression, to create keyring cards that would help them (and probably many other people too). Not based on what experts have written, but based on their experiences of everyday life.

There's been much drafting and re-drafting, and help from a few other consultees too - including an epic facebook chat with Imi, creator of 'The Upside Down Chronicles'.

Clearly every card will not be suitable for every individual with mental health challenges, but that is the beauty of the keyring cards: you choose to use the ones that work for you.

And now the cards are here.

Some specific to mental health, but many are applicable to many situations and conditions.

Explaining the basics so friends and family can understand a bit better.

Making asking for support a little easier

 Asking for a hug.

And anyone who knows Imi will not be surprised that she is behind this one...

A huge thank you to everyone who made this possible, but especially to Imi for all her help with editing and insights into mental health conditions, and to my team of college students, without whom none of this would have been possible. I hope you are proud of yourselves, because I think there will be many people now and in the future, who will be helped by your work.

Wednesday, 11 May 2016

Can fatigue affect speech?

In my experience: Yes.

I have fatigue related to Ehlers-Danlos syndrome (hypermobility type) and Postural Orthostatic Tachycardia Syndrome (EDS and POTS)

When fatigued, my speech can be affected in the following ways:
1. Reduced ability to form coherent sentences
2, Reduced ability to use the correct word
3. Reduced ability to form/pronounce words

They are such common occurrences that I have various keyring cards to explain them - which is a great help in reducing the awkwardness!

But for those who haven't lived with these, here's a bit more detail:

1, Reduced ability to find the correct word.
"Could you fetch my red bag from the hallway"
"could you fetch my bath...bed....thing...[attempt to mime 'bag']..BAG...from[point in right direction] there."

Incorrect words usually have the same starting letter as, or rhyme with the word I want, are something from an earlier conversation or have a linked meaning.

If the wrong word is stuck in my head, it is often quicker to reel off incorrect ones until I find the right one because if I stop myself, then all I can think is, for example ", not, it's still not bed!"

Moments of this are a daily normal, but frequency increases with fatigue. My undiagnosed, probably-bendy Dad was the same when tired. "Do you want a banana, because I'm putting the kettle on." was considered perfectly normal tired-Dad-speak. (banana = tea, in case you were wondering.)

2. Reduced ability to form sentences:
Instead I fire off key words in no particular order, in the hope that my meaning will become clear.

"Could you fetch my red bag from the hallway"
"Bag. Red. Hall. Bring?"

Attempts to turn it into a sentence results in silence - as if the concentration required to think of the proper phrase steals the concentration required to actually say the words.

At this point I will usually stop talking and use gestures, cards or written words. Interestingly I can sometimes still write sentences even though I can't speak them.

3. Reduced ability to form/pronounce words

At this point I am what friends, family and work colleagues term 'Drunk'. (Due to fatigue, not alcohol or illegal drugs!). The finely tuned coordination that speech uses simply doesn't happen - my words can become indistinct, or certain letter combinations too tricky to manage.
When it is mild I might be able to concentrate hard, put more effort in and mask the difficulty - making me sound temporarily posh and slightly stilted - and when I stop concentrating it reverts to..well...drunk!

All of these worsen with fatigue - and are some of my warning signals that I need to pace: change activity or rest, depending on the situation.

I can't give you in-depth medical reasons for all of these, although I suspect that the laxity EDS causes, and the temporarily reduced blood flow to the brain due to POTS both play a part in the fatigue-related symptoms I experience.

If you experience the same, you are not alone!

And if you don't...please accept that sometimes speech isn't a practical option for me, so conversations may need to be delayed, or my part carried out via written words.

(Note: keyring cards available from )