Hypermobility-What if you were told....?

SingleSue

Nope, eldest is not statemented although the school are aware of his EDS and put a laptop in place for his GCSE's.

To tell you the truth, I never even thought about getting him statemented for it...the other two boys are statemented but only because they have autism.

Trialia

shays_mum wrote: »

So did any of you gals get statemented for yourselves/kids?, from what i have been reading, its going to be an uphill struggle .
Singlesue, this is my worry as well, if i don't get this sorted now, the same will happen to my DD, apparently girls are more prone to the bendies when they reach puberty......., i can def say attest to that!!

Same here. And no, I don't have kids, and wasn't diagnosed until a couple of years ago, so I never got statemented - had to push through it and relocate as necessary. I was a whiz at gym for a few years though - being able to throw yourself down in a somersault on the grass and continue somersaulting right to the other end of the playing field without getting up will do that. *g* It was fun while it lasted, then I started having things other than my ankles coming out, and now I'm all over the place.

SingleSue

My trick was the can can, I could always get my leg so impossibly high and then finish with the flourish of the splits afterwards.

Or stand there and put my foot on the shoulder of a person standing opposite me, touch the backs of my hands to the floor with knees straight and legs together (very very naughty as my knees hyperextend too!).

And then the tricks with my fingers and hands/wrists...weird and impossible shapes made out of them.

shays_mum

Thanks girls, singlesue you naughty girl!!, but then i can put my legs behind my head,sleep at a pure 90 degree angle & sleep with my legs fully crossed when its freezing as its more comfortable on the old knees & hips , but i was told of by my physio for doing any of them!!
On a more serious note, from what i'm gathering from him, is that we are in a 'boom & bust' cycle , as i am currently so imflammed he is reconditioning my joints to make them hypermobile again, till i injury myself by over-using them & end up back again with inflammation - correct me if i am wrong!

SingleSue

Ah yes, I used to do the telephone with my foot to my ear....and then the double telephone with both feet to opposite ears!

I suppose I am quite lucky really, yes things have stiffened up and my back can be a begger but I have got to 40 without needing too much intervention....bought my first walking stick during the week as it was a nightmare getting home from an all day gig on Saturday and had to rely on the boys to help me walk.

Indie_Kid

SingleSue wrote: »

My trick was the can can, I could always get my leg so impossibly high and then finish with the flourish of the splits afterwards.

Or stand there and put my foot on the shoulder of a person standing opposite me, touch the backs of my hands to the floor with knees straight and legs together (very very naughty as my knees hyperextend too!).

And then the tricks with my fingers and hands/wrists...weird and impossible shapes made out of them.

I've just read this post and am shuddering at the thought of some of these things!:o

My brother purposly dislocates and relocates his fingers.

rosysparkle

I have HEDS and fibro and arthritis (and Crohn's, just to make things more fun) and it took me years of my GP telling me my pain was in my head before he referred me to a rheumatologist. Still in pain, but at least the doc takes me seriously now.

shays_mum

Sorry quote thingy not working, this is in response to aputsiaq:

Aputsiaq wrote: »

3 major ops with paracetamol alone? Because you have a reaction to morphine based meds?
Go on a 'trip', makes me go completly out of my mind

What about the 100's that dont rely on morphine derivities?
Well since i'm not a doctor & was never offered an alternative we will never know!

Perception is definitely "in our heads" and the doctor was merely suggesting that you try the pain clinic as they can help you to change how you see pain and how you deal with it.
You are correct there, now if i can get an appointment would be a good thing!

We do come back to the same old argument that someone who is in so much pain cannot drive or cannot work. When someone comes along who says that they do these things it does make you wonder, How?
Since i have never come across this 'old' arguement i would not know....at the end of the day, i have kids & they are totally reliant on me, as are my disabled parents. If i did'nt do anything who else is there?, Of course super-strong painkillers do help!!

Actually since this was posted, my gp has said he does'nt want me to go to work. I have to have intense physio for the forseeable future, not to mention all the other body parts i.e hands that need to be seen by specialists. I have also received my blue badge, where i was judged by a oc who was trying to help me carry on my life & responsibilities as best i can, without judging how i get things done thus far being in pain

shays_mum

rosysparkle wrote: »

I have HEDS and fibro and arthritis (and Crohn's, just to make things more fun) and it took me years of my GP telling me my pain was in my head before he referred me to a rheumatologist. Still in pain, but at least the doc takes me seriously now.

Rosysparkle, did'nt mention the fibro & arthritis & potential POTS am trying to sort out one thing at a time , my cos has crohn's so i know your pain. Atleast your getting some help now, maybe call some of the helplines from the main charities that can support you - found them really helpful.

Jojo_the_Tightfisted

On a more positive note...I can play bass rather better than I should be able to because my left hand practically does the Reed Richards/Fantastic Four stretchy thing between the frets and over the strings. And it is very good exercise for strengthening/straightening the fingers.


The only thing the guys at the guitar shop have to do when I buy my new bass is lower the action slightly so it takes less effort to depress the strings fully, and they are sorting out some strange contraption to support the bass over my trunk rather than slinging it over my neck on a strap.


****

DD's senior school have already been notified that she has HMS and is not going to be wearing anything other than good quality trainers for PE, even if they think plimsolls are adequate. I have also said about her Raynaud's, which means she should be allowed to wear gloves in class during the winter.

If they're going to make me traipse a mile up a footpath uphill on foot (no transport available) due to my not faffing around with a statement, they're going to meet with a Very Grumpy Person.