The (not so old) Crocks Cafe -Part 2

juno

I've currently hurt my knee to go along with my bad wrist and back. Today at work I knelt down, realised it hurt, wobbled a bit and overbalanced and then couldn't get back up :rotfl:

needing-help

Thanks for the help. I'm just hoping I haven't done her any damage but I honestly didn't know, I have never heard of EDS till now.
I feel like the worst mother in the world. I told her it was growing pains too:(

Trialia I will pm you tomorrow if thats ok I'm just too emotional at the moment. She tends to sit like a frog when she is on the floor. Starts by sitting on her knees then pushing the lower parts of her legs out (Not a good description but I know what I mean:o) I guess that's not good for her.

SingleSue All I can say is :eek:

Sunnyone Thank you as well I need all the help I can get.

My user name was because of our debt but this is more important and harder to deal with:(

SingleSue

sunnyone wrote: »

My right hip dislocates when anything is even attempted now, even before I broke my pelvis in 5 places my hips/legs were unhappy if I attempted any hanky panky

I had the growing pains speech but I was still diagnosed as an early teen (im 42 now, my diagnosis was 30 years ago or so now :eek:) and my kids were both given the same speech but with my knowledge they wernt dismissed as many people are.

All I got as a youngster was "You're a dancer, what do you expect?", so no diagnosis apart from an extreme inward curved spine.

When eldest started complaining about pain, I didn't know it was indicative of a further problem. As far as I knew, being hypermobile was nothing bad and he wasn't as bendy as I had been at his age. So when they said it was just growing pains or he had overdone things, I believed them.

It was only after he started to show me his extremely stretchy skin, his partially dislocating shoulders and told me about his chest pains, alongside with worry over his inability to put weight on (or even keep weight on whilst eating a normal diet), that I took him back up and insisted on answers...I knew that very stretchy skin was not normal and that chest pains were def a worry.

Eldest did hide a lot of it though, he didn't want to worry me because of the other two and it was only when the problems had become extreme that he finally let me know just how bad it had got.

Trialia

needing-help wrote: »

Trialia I will pm you tomorrow if thats ok I'm just too emotional at the moment. She tends to sit like a frog when she is on the floor. Starts by sitting on her knees then pushing the lower parts of her legs out (Not a good description but I know what I mean:o) I guess that's not good for her.

Not good for her at all - I know exactly the position you mean, and that was one of the ones that used to make my hips lock when I was her age. And that's no problem, hon, anytime is good with me. I hope you feel better. Just give her lots of hugs, and it should help both of you...

bigzippy

Just to pick up on Needing-help - it is most definitely not your fault! (nor yours singlesue). You've done well to pick it up in a 7year old. I've only just been diagnosed at 28! There's loads that you can look out for and help her with to keep it manageable having caught it early, including physio and stopping her doing the squashed frog sit I got to 28 not having been diagnosed, but I would never dream of blaming anyone else for that. In an ideal world things would've been different, but as we all know, this world is not ideal!

Soolin I wouldn't've thought that any specific diseases or illnesses were listed under the Disabilities Act... I thought it was a "significant" somethingorother that was stated? I would throw the book at them, to be honest! You've every right to get angry about it.

*wave* to everyone else Sorry, I can't remember any more things to reply to

soolin

The weather forcast is for more snow especially in the South West. So make sure you all stock up with necessities just in case it hits your area.Also remember silly things like keeping a spare few days of medication so you don't have to worry about running out.

And take care everyone.

Careful_with_that_Axe

soolin You may have already gone, but I am outraged on your behalf. Your request can hardly be an unusual one. I think their attitude is appaling. The way I see it the DDA is to protect people from being disadvantaged by any differences they have from the norm. That is exactly what they are doing to you! If there wern't issues about your privacy regarding this, I would not only name and shame, but take it to the media. Outrageous that they feel it is appropriate to behave this way.

needing-help

Trialia Thank you. I asked her teacher today to make sure she doesn't sit like that anymore.

bigzippy wrote: »

Just to pick up on Needing-help - it is most definitely not your fault! (nor yours singlesue). You've done well to pick it up in a 7year old. I've only just been diagnosed at 28! There's loads that you can look out for and help her with to keep it manageable having caught it early, including physio and stopping her doing the squashed frog sit I got to 28 not having been diagnosed, but I would never dream of blaming anyone else for that. In an ideal world things would've been different, but as we all know, this world is not ideal!

SingleSue My daughter is a dancer too am worried she will have to stop:(

Thank you. The only reason it's been picked up is because I was at the doctors and my arm cracked. When he commented I mentioned my daughter and he said he wanted to see her. I took her and she was in a really bad mood so wouldn't do most of what he asked but he said about the stretchy skin, her arms and legs curve the wrong way and she can touch her wrist with her thumb.
I have since asked her to do the other things he tried and she can do them all:(
We are back on Thursday so hopefully she will be in a better mood.

Soolin You are covered by the disability discrimination act.
The Disability Discrimination Act says a disabled person is someone with ‘a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities’. It applies even if the condition is controlled or not.

Apologies everyone. All my posts seem to be turning into novels at the moment:o

ETA Just remembered my husband has someone woking for him with coeliacs and she has succesfully had her former manager disciplined over his behaviour towards her condition. She was definitely covered under the DDA.

soolin

needing-help wrote: »

Trialia Thank you. I asked her teacher today to make sure she doesn't sit like that anymore.



Thank you. The only reason it's been picked up is because I was at the doctors and my arm cracked. When he commented I mentioned my daughter and he said he wanted to see her. I took her and she was in a really bad mood so wouldn't do most of what he asked but he said about the stretchy skin, her arms and legs curve the wrong way and she can touch her wrist with her thumb.
I have since asked her to do the other things he tried and she can do them all:(
We are back on Thursday so hopefully she will be in a better mood.

Soolin You are covered by the disability discrimination act.
The Disability Discrimination Act says a disabled person is someone with ‘a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities’. It applies even if the condition is controlled or not.

Apologies everyone. All my posts seem to be turning into novels at the moment:o

Thank you for your post, I am still thinking about things here.

bigzippy

My daughter is a dancer too am worried she will have to stop:(

It can actually be found to help to keep supple and build up the muscles around the joints so the lax ligaments aren't relied on as much. Try not to worry too much. It can be pretty manageable, especially in it's less severe forms And particularly where there aren't accompanying conditions - which she's likely at less risk for now she's had it picked up on.