EDS Hypermobility 3

[elliejjtiny]

Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title .

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

Hehe trouble is ho is not short for hi it's something else .
Have you know can text speak with the best of them . Saves me trying up find some random teen to translate my teens messages

Bizzey

Interesting as ds3 does not tan others do and house ds1 and even more ds2 have a per meant tan due to the Italian side

Yup swimming is very popular here and ds3 loves it but it has to be warm water he does not do cold even in paddling pools

Good luck at Gentics

We all tan really easily in this house. My DH was known as DH the greek (he's from Yorkshire! ) when I first met him. I blame the amount of time he's either out of the country on business or on the golf course. Me and by default the DSs also have Cornish/Traveller genes - which probably means we are naturally weather beaten.
THC - I'm with your DS3 - I cannot abide swimming in cold water, or even paddling in it! Give me warm/hot every time.

Yay all checked in and ahead of time to ) need to register at 4 but omg the hotel room rather posh but am impressed with the fact their disabled room is big and more so is the bathroom and proper one has a good size wet room

Once know where conference is will let you know sparkle

My DS's all tan easily, especially DS2 who came back from holiday with a tan despite factor 30 and only going to the other side of somerset!

I'll do a proper summary of my boys various needs later but welcome and for now.

DS2 is absolutely shattered but he has been enjoying school this week. He's got his step sorted now for the classroom door and the caretaker is going to install the grab rails at the weekend. The step is metal and makes a noise when you stamp on it so on the day it was put in I watched the class TA trying to persuade the children to come in for the story rather than jump up and down on the step .

DS1 had his sports day and came in 7th out of 8 in the year 2 running race and 6th out of 8 in the balancing a beanbag on a bat race. He has mild hypermobility so he did really well and I was very proud. The children who are wheelchair users took part in the foam javelin throwing but me and one of the other mums are going to suggest a wheelchair race next year with either year 6 children or TA's pushing. There will be 4 wheelchair users next year so enough for a race.

THC and sparkle hope you have a lovely time at the conference.

hope the conference goes well and hope even more you 2 have a good meet up (when you've worked out where )

I wonder if they are going to be wearing a red carnation in their button hole !!!

I think it should be much more clandestine than that! Like all those spy spoofs where they have to say something like ' the skies sparkle at night' and replied with ' you can reach the skies if you're a human catapult '

auntevil......cant wait to hear how they meet up ....but I think they might spoil it for us and pm each other with mobile number !!!

bizzey I just live in hope that some people lead a much more exciting life than me. It's what keeps me going!

My ds 1 has just done his 1st week(4 days) at secondary school...my exciting moment is....making sure ALL the alarm clocks are switched off ready for natural waking .......which might be sunday morning for ds !!!

Hehe would we do

that and yup I know where it is . Been quite a giggle this evening and there be a few tired people tomorrow .

Sparkle come in at main reception and long walk up corridor were right near the bar lucky that

THC...glad it has been good ....handy you met at the BAR!!

Forgot to mention last night I met someone with same rare type as ds3 she was really pleased ( she is 19) as was her mum as they never ever met anyone else
No kids and I'm still awake at 5am

Sobering thing though is seeing how many other adults badly affected by edd and realising that could be my dc in the future and there is more women here than men . Could be that men not fancy it but I would say 90% are female suffers

Aunt there's a few power chair users but I'm the only one with Red hair

Does the expression 'dirty little stop out' ring any bells? I am soooooo - wish it was me!
Very jaded view on men and gathering information. I personally think that women are more genetically wired for communication and being able to see the bigger/wider picture. This going back to the hunter gatherer stage. The women didn't know when or if the hunter would return with/without food and had to be prepared with berries and nuts and all to last for not just them but all at home.
I would imagine that this conference for a lot of women is not only about them, but how it will/might affect their families and what they might be able to do - information gathering.

I think auntevil is right. I like the idea of coming to the conference one day but DH would rather stick pins in his eyes.

at ellie's dh and his ideas of fun instead of the conference....I am not there yet, not going until tomorrow...but will be hunting for flaming red hair, power chair, bar and one very determined woman!

THC is the main entrance you mentioned in burleigh court then? I assume if I look out for that I will find it ok...am driving.

I am still in very bad pain with my neck, been 10 days now since I subluxed it, dh is talking about driving me to drop me off at the conference if I can't drive myself, So I will be the lost one, mousey used to be blonde, who can't turn her head properly! Damn...no red carnation.

Hehe goes of to nick borrow some flowers

Yes it's bit awkward to find but once in very straightforward I would ideally get here big early if you can as is very busy will save you a pew

And ladies tonight is a posh dinner , talkers and disco so sparkle I'll be the tired redhead Don't think I'll be in bed early grin

But have to say really good talks today and from what I gather some of the stuff will be available on website for members so when released will copy on here

Also info should be in next links magazine

Biggest thing I'm taking from the conference is the belief in myself . That we are not a bunch of hypercobdrics regarding our dc and that we are right to fight and question things

And more so there are Drs out there that believe us oh and far more is linked to eds than even us ladies realised

really looking forward to your feedback when you get back. Hope last night wasn't too hard work for you .

Can't wait to see the list that THC produces of the other links with eds.
I bet we'll all look at it and go - 'i've/DS has got that - I never knew!"
Pleased that you're working hard for us as well THC and sparkle - just remember the saying about all work and no play

Am on way home and yup we met lol was nOt sure so text sparkle wand waited to hear the bleep

Lots of info and most the talks will be on the members website once in there will share but will also post what we learnt

Hope you both had safe journey home !x

Obviously THC description of herself was more accurate than mine, as when I turned round I knew who she was instantly! Hope you got home safely THC.

Will post more later, in mad school run "heaven" at the moment.

Yeah late home and am about to head back to school

Just to point out sparkle looks far to young to have 3dc

But ladies the next one is likely to be in two years . I would reccomend is very interesting

But I know Airane is London based but not sure if anyone else's bear enough but is talk of EDS Xmas party for members dc