Monday, June 27, 2005

Object Lesson

I've been having some physiotherapy sessions to improve my 'core stability' (and hopefully see off a little pot belly which I need to curb before it really gets going)... This is the first time in my life I've had a physiotherapist understand my condition. We have read the same books, and are getting on quite well despite a few teething problems. Initially, I found the whole thing very emotional, and every little setback had me being weepy and wanting to give it all up. Now I'm realising that setbacks are the nature of the beast. I am so over the whole crying thing - until next time, of course.

This week, I have been an object lesson for some trainee therapists. They'd read the book and seen the photographs. Having a real live specimen do the moves in front of their very eyes brought forth a range of reactions - and there the physiotherapist and I had to stop them.

With hypermobility and hyperextensible skin, you can contort into some positions which others with a more - shall we say, average constitution - simply cannot manage. Many EDS/HMS people spent their childhoods grossing out their friends, not to mention audiences at the circus. I even saw someone who had to have been an EDS person on 'You've Been Framed' recently. It does my disability pride no harm at all to learn that people with similar genetic conditions to mine were circus performers. I even had a doctor tell me to run away and join the circus once.

But in one of the books we'd recently both read, a 'patient's perspective' chapter talks about being proud of a hyperextensible range of movement instead of finding it repulsive.... I'd never in my life thought of that idea!

When you do the contortionist act, either at school or to anyone who wants to know what hypermobility is, people will often react with disgust. This is not very self-affirming.

Instead, the book suggests we hypermobiles should be complimented for our range of movement - and this is what the trainess had to stop and consider. Patients do not want to be told they are gross, especially as they are probably in your care because of a problem and are feeling vunerable. Some of the postures are not horrible to look at - for example, a full foot arch is what ballerinas strive for - we can pretty much do it from first being able to walk. For any joint, although it may look sinister to someone who can't achive it, it is simply our bodies way of moving.

So, whilst I've been working on my exercises, my physiotherapist has been working on her compliments. We demonstrated for the trainees.
"What a lovely full stretch in that leg" she tells me. "Goodness grac- erm, I mean, what a long way, a fantastic long way back your fingers go," and so on.

It really feels good. I never realised I was missing it. To be the freakshow girl did have a sort of attraction, you sort of revel in it... So how can I put this new experience of being complimented instead of being an object of horror? It's like spending your life being poked with a stick, then someone comes up and tries stroking you instead.

Purrrrrrrr.

16 comments:

kezzykat said...

H AF,

Oh my God, SOOOOOOO totally relate!!!

I as you know am hypermobile etc, and I do pilates to keep my core stablity in cheack as trying to control pain too.

Every session has me (in the positions I can do due not makng me hurt or pop my hip) making everyone GASP and look mouth dropped at me!

you know what? t s kinda great to be good at something for once!

Thing is as our range of movement is outside of normaal, many of the exercises bring no real benefit for my ligaments/tendons etc..hey ho.

I used to ALWAYS freak everyonbe out at school, damn am I paying now though!

Mind you MIL commented about my arms last weekend. I was sat foprward on the sofa with my arm outstretched behind me supporting me (to ease hp pain) and MIL gasped that my arm was "gross" and did I "have to do that right now?" all from a sitting position..not my fault my elbows face the wrong way is it??
LOL

On other news AF, do you use a manual chair? if so any tips? 'shopping" around for a lightweight one after having my assessment last week..SOOOO lost, don't fancy sitting in all chairs in Chrisendom, but have conceeded that my hip will have to put up with trying a few, wondered if you have any gems of advice??

Nice to 'chat' to another bendy person...please feel free to email me etc if you wanna chat some more..I am the only one this bendy I know and feel lost in it all

HUgs

K

gimpy mumpy said...

Hiyah Fang, curious how you and others feel about being a training demonstration? A few years ago I was embarrassed, then for awhile I was kind of happy that anyone was interested in my experiences and what I had to say and demonstrate but now I'm just sick of it. My own personal feeling now is let them find someone else to be their crip dummy of the day.
I'm sick of stripping for spotty young blushing interns (all in the name of science and education of course). I'm tired of having to "start from the beginning" with my entire medical history. I have had it with having inexperienced med techs learn On Me. Anyone else feel this way?

Eliza said...

Wow: having just seen typos (or, more likely, homophone cluelessness) in several articles on what surely was MEANT to be complementary medicine, I was just about to write a parody about, as these articles claimed, the need for more doctors to practice complimentary medicine. But it looks like you've really found one who does!

You're very lucky. I wish my PT were more understanding of bendiness. He is convinced I'm just being a wimp when I refuse to do things that make my hips or shoulders repeatedly subluxate. Duh.

imfunnytoo said...

I've not had the 'training example' experience, but I do know that I was annoyed as hell when I was a cancer patient in a teaching hospital. A horde of clueless interns *each* individually asked my medical history...I was ready to sell a cassete tape at 4.95 a crack and make some money.

but there have been other arenas where I've been able to surmount the 'circus freak' attitude--just not recently.

Agent Fang said...

Mumpy, re. being a crip dummy (lol), maybe it is because of the situation I found myself in with this condition, so it may be different with others. I don't like being pressed for details when I'm out for work or social stuff, but in medical environments I'll do everything I can to raise awareness. Maybe if I'd been shy at that exam those students wouldn't have had the opportunity to think of respecting an extended range of movement instead of just thinking of us as funny contortionists. (Well, they still might, but at least I got a word in...)

So, I am (still) on a crusade to educate medical people about what to look for. This 'late diagnosis' story in people with connective tissue disorders is very common. I want every professional to be aware if a hypermobile person they're treating isn't improving, it is time to question the physical cause and not just the patient. I've told my story to several students (in physio, orthopedics and rhematology) - many have been horrified, to which I think, 'good'. Learn enough not to put any more of us in this situation.

Examinations often aren't dignified - by opening my big gob I feel like I'm interacting, reminding them I'm a person, rather than sitting passively. Let's face it, the cadavers they met at med school didn't say much, so like with puppy training (I'm reading a book on it prior to getting a new dog), "undesirable behaviour allowed at an early stage in their development will persist unless you take control of the situation".

AF

Agent Fang said...

Hi Kezzykat,

For some reason none of my posts to your blog show up...

So, re. getting a manual, I see you are well on the way now - good. Getting it in and out of the car is a big thing - if you're lifting it at the mo, look at places that do hoists or systems where you have a box on the roof of your car that extends an arm down to pick up the chair and lift it up into the box. Beware of culmulative stresses on other joints now you're using the chair (or elbow crutches). Build up your arm muscles well and consider getting a small scooter or a battery to make the chair powered if you get tired.

It's always a good idea to go to a wheelchair dealer independently and try a few chairs and hoists etc even if you like the chair you're getting... if you want another in the future, you can save up, and may well need too. And save up for a powered trike, maybe...

;0)

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