The (not so old) Crocks Cafe -Part 2

formaldehyde_perfume

bigzippy wrote: »

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.

It also depends on what kind of dance too, hip hop is probably advisable to stay away from but ballet or ballroom would be a great advantage as they both need strength and great muscle tone and are essentially about controlled movement. You shouldn't discourage your daughter from exercise, the stronger she is the less likely she is to have complications later on; but beware of things like insurance, I had to stop skiing even when I was able to because insurance wouldnt cover me if I needed treatment whilst abroad.

Trialia

formaldehyde_perfume wrote: »

It also depends on what kind of dance too, hip hop is probably advisable to stay away from but ballet or ballroom would be a great advantage as they both need strength and great muscle tone and are essentially about controlled movement.

Actually, ballet tends to do more damage from hyperextension; bendy people are often better at it, but it kicks your teeth in later. I have a friend with HEDS who used to be a ballerina, who is not much older than I am, and on stronger medication and already using a wheelchair full-time. I'd say ballroom should be a good one to try, though.

SingleSue

Trialia wrote: »

Actually, ballet tends to do more damage from hyperextension; bendy people are often better at it, but it kicks your teeth in later. I have a friend with HEDS who used to be a ballerina, who is not much older than I am, and on stronger medication and already using a wheelchair full-time. I'd say ballroom should be a good one to try, though.

Mine was ballet....and I took it to the extreme. I would train for hours every day, right from the age of 5 until nearly 16 (when the back problems really became a problem - had already slipped discs by then) and pushed my body to its absolute limits. I was extremely fit, very supple and my stamina was amazing...something which has stood me in good stead over the years until very recently.

I still have a dancers chest, even with blooming great boobs coming from it, the rest is completely flat and bony, no build up of fat at all from my boobs (and between them, you could fit a blooming Concorde between the beggers, cleavage? What cleavage, they spring away from each other! ), right the way up.

But would I have changed anything had I known? I don't think I would you know, just the same as eldest does not want to change his life style either...he says he would rather live life fast now than be a boring begger having no life. I had great fun, had lots of laughs, used my hypermobility to its fullest (extending my leg straight up to climb in a high window when I forgot my keys) and I honestly don't regret a moment of it.

Yes, I am paying the price now but I have had some blooming good times over the years and it would have been a tragedy to have missed out on them.

needing-help

Thanks all again.

I'm not really sure how to describe her dancing. She goes to a stage school type thing on a Saturday where she does singing, acting and dancing. They do some ballet moves mixed with jazz, tap type things and a lot of prancing round like my little pony:)

You have all made me feel a lot better, I'm still upset and worried for my baby girl but the things you have said have made me think more rationally.

SingleSue Your post really made me think, I did a lot of things when I was younger that have come back to bite me now but I wouldn't do anything differently. I had a friend at college who had leukemia for the 4th time and it was incurable. She had been fighting it since she was 5 and she said her biggest regret was that she had never had a normal life because her parents wouldn't let her in case she got ill or hurt. She didn't want to do swimming with dolphins or any of that stuff she just wanted to learn to ride a bike and everyday stuff.
I don't want to turn into one of those parents.
Sorry I know I'm rambling again but thanks for that post sue and for reminding me of my brave and wonderful friend.

Indie_Kid

needing-help wrote: »

SingleSue Your post really made me think, I did a lot of things when I was younger that have come back to bite me now but I wouldn't do anything differently. I had a friend at college who had leukemia for the 4th time and it was incurable. She had been fighting it since she was 5 and she said her biggest regret was that she had never had a normal life because her parents wouldn't let her in case she got ill or hurt. She didn't want to do swimming with dolphins or any of that stuff she just wanted to learn to ride a bike and everyday stuff.
I don't want to turn into one of those parents.
Sorry I know I'm rambling again but thanks for that post sue and for reminding me of my brave and wonderful friend.

I think you need to treat your child the same way as any other. Yes, there will be things she can't do (some may be adaptable) - but, please let her make her own decision about she wants to do.

My parents did this. Yes, I've got the bruises and scars from falling off my bike; but I'm glad they didn't decide for me what I should and shouldn't do.

Getting hurt is part of childhood, I think.

Trialia

I have to say, in response to all the posts since my last... I still would not recommend pure ballet, looking at how much damage that one can do in conjunction with EDS. But dancing in general, yes, and it sounds like her type is good mostly. It should keep her fit, which is the main thing. The more muscle strength, the more joint stability she'll keep.

Jojo_the_Tightfisted

SingleSue wrote: »

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.

Chest pains?

DD gets those. The GP said it was nothing.

Mind you, they also said that her fainting regularly is nothing.

I think I need to be having a terse word or five with the GP....

Indie_Kid

Jojo_the_Tightfisted wrote: »

Chest pains?

DD gets those. The GP said it was nothing.

Mind you, they also said that her fainting regularly is nothing.

I think I need to be having a terse word or five with the GP....

I would second having a word with the GP. I saw one on Thursday. Apparently, not being able to breath properly and have a constant burning pain in my stomach is nothing to worry about.

formaldehyde_perfume

Can someone here answer my question?

I've just been reading up but it doesn't seem to fit my situation. I get high rate mobility and mid rate care for DLA, my mum is my carer but doesn't claim carers allowance or the tax equivalent as she works full time above minimum wage (in a local job where she can drop what she's doing and be home in 20 mins if/when I need her) She has savings and owns our home, I have a small amount of savings but fall well in the allowed range. Can I claim income support? If so, would I be right in thinking that I would be financially better off claiming that rather than fighting the DWP as I've been refused ESA.

I shall phone the job centre on Monday but I hate phones and only have a mobile so it will cost a bomb.

Just like housing benefit I don't suppose I will be able to claim as my mums income will be classed as our household income, but I though I'd make sure

Thanks in advance.

Careful_with_that_Axe

I don't know about IS, but I would think it would purely be based on your income rather than household income?
Hopefully someone who knows a little more will be along soon.
http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/On_a_low_income/DG_185670