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Cryopathic

Support.

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Hey all, Is anyone Interested in making a support group in the uk?

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Or Maybe even a Help Forum?

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Or Maybe even a Help Forum?

Hi,

I think my husband may be interested, we live in Cumbria

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Hi,

I think my husband may be interested, we live in Cumbria

Not to stray off topic....

It has been brilliantly suggested (by Sam) that an online version specifically for my brothers and sisters in the UK be added .

If I do that, I'll want to do it right. Which would mean some time. If I get asked about the forum 2.0...it will have a geo-specific options.

If I get a chance, I'll start a post asking what people think. I liked the idea, i just want some input on how and why it should happen.

-Stu

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What about live chats scheduled by where you live? I know there is another message board which has weekly chats, though I have never participated

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definately interested - of course i live in Sheffield ... lovely lovely sheffield.

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OK GUYS IVE BEEN OFF LINE FOR A WEEK AND THE BRITS HAVE INVADED. :rolleyes: YES IT WOULD BE A GOOD IDEA IN ONE WAY AS WE ARE IN THE DARK AGES.LOOKING FORWARD TO HEARING FROM ANY OF YOU AND HOW THE N.H.S HASNT A CLUE !!!!! NOT IN THE MIDLANDS ANYWAY.I THINK WE SHOULD JUST ALL UP STICKS AND JUST MOVE TO THE STATES........ :)

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Hi U.K. members,

Several posts have indicated that online support is not available for Narcoleptics in the U.K. I discovered this website awhile back when I was looking for more information on this disorder. The information was very helpful and have used it several times to educate others. They do provide contact information that might be helpful in finding the support you are looking for in the U.K. :rolleyes:

http://www.narcolepsy.org.uk/narcolepsy/employment.html

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Hi,

I am living in the Uk and until I saw a tv programme on Narcolepsy I had never heard of it. I have had N for 29 years and only being diagnosed for five of these. I had developed coping mechanisms and with my dad always falling asleep as soon as he sat down (probably due to working long mixed shifts) I didn't think nothing of it. My mum was ill with MS and my nanna, I thought was old also both slept a lot. It was only my daughter getting older and starting living with someone that I realised that sleeping at least 14 hours a day was not the norm. I thought eveyone had vivid nightmares/dreams and automatic behaviour. When I tell people that I have N and had to give my job up and have no social life, the people that have heard of it think you just fall asleep in your meals. I think a support group would be good as even friends and family (apart from the ones that I live with) still think that I am lazy and a woman of liesure. This really gets to me even though I know they are ignorant, but they shouldn't be as I have explained the condition to them in simple terms.

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HI . TOO EXHAUSTED .I ARGREE WITH WHAT YOU ARE SAYING ,BUT IT TAKES TIME.EVERYONE IS DIFFERENT.I HAVE FRIENDS AND CLOSE FAMILY THAT HAVNT GOT A CLUE NO MATTER HOW MANY TIMES I TALK TO THEM.IVE GOT 2 SONS ,ONE WHO WONT TALK ABOUT IT AND HATES IT EVEN IF I BRING THE N WORD UP.BUT THEN IM BLESSED WITH MY YOUNGER SON,WHO KNOWS ME AND MY NARCOLEPSEY INSIDE OUT AND MAKES SURE THAT SO DOES EVERYONE ELSE.I FELL ASLEEP AT HIS RUGBY MATCH LAST MONTH,ONE OF HIS TEAM MATES LAUGHED AND SAID DID I FIND IT THAT BORING !!!!!! AFTER MATCH TEAM TALK WASNT ABOUT THE GAME,IT WAS ABOUT NARCOLEPSY.LOL.ITS GREAT,THEY NOW ASK SO MANY QU,S .ALSO SOME OF THERE PARENTS ARE SLOWLY COMING UP ASWELL. ITS JUST GOING TO TAKE TIME.

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[yeah come on lets get one going for the UK., UKAN ain't doing anything, and if it stays that way then I would be willing to make the site. As for the brits invading well its take over time go UK.

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GO FOR IT MATE. WITHOUT THIS SITE AND STU I DONT THINK THAT I WOULD OF BEEN HERE TODAY.(THANKS STU ;) )FELLOW BRITS MITE NOT BE SO LUCKY TO COME ACROSS THIS SITE. ALTHO I TELL EVERYONE I MEET .DOCTORS ALWAYS GIVE YOU UKAN........KEEP ME POSTED

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wouldn't mean to disrespect stu, maybe we can stop "invading" them. I to am very grateful for the information and replies that everyone has done, Need a Name for site?

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DAMAIN IVE TRIED TO SEND YOU MESSAGES, :( DONT KNOW WHAT IM DOING WRONG BUT IT WONT LET ME. I WILL KEEP TRYING.HOPE TO CHAT SOON .

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wouldn't mean to disrespect stu, maybe we can stop "invading" them. I to am very grateful for the information and replies that everyone has done, Need a Name for site?

None taken! :)

If a UK site is what you guys are lookin' to do, please feel free to use me as a resource...for hosting...or...whatever!

I like to think of this forum as the GLOBAL place...

So please...INVADE AWAY!

I'm still trying to get this place to where I want it, and I like the non-American influence...

;)

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Hi,

I was reading the UKAN board but can't work out how to post there - not sure if the problem's with the new site or my head - If yous were meeting in the north of England, I'd like to come too!

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UKAN.......I THINK AGAIN THAT THEY ARE HAVING PROBLEMS. DONT KNOW AS I DONT USE THEM,BUT IVE JUST HAD A LOOK TO SEE IF I COULD HELP YOU. JUST AN IDEA GUYS . BUT AS YOU KNOW BIG GET TOGETHER IN THE STATES IN OCTOBER .IM SAVING HARD AS THIS TIME IM NOT MISSING OUT..........(LONG STORY) BUT WHY DONT WE TRY AND SORT OUT A GET TOGETHER AROUND THE SAME TIME,INFORMLY LIKE AND SEE WHERE IT TAKES US AND WHAT WE WANT TO DO.(DAMAIN THIS COULD BE YOUR 1ST WEEKEND AWAY) LET ME KNOW WHAT YOU THINK XX

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UKAN.......I THINK AGAIN THAT THEY ARE HAVING PROBLEMS. DONT KNOW AS I DONT USE THEM,BUT IVE JUST HAD A LOOK TO SEE IF I COULD HELP YOU. JUST AN IDEA GUYS . BUT AS YOU KNOW BIG GET TOGETHER IN THE STATES IN OCTOBER .IM SAVING HARD AS THIS TIME IM NOT MISSING OUT..........(LONG STORY) BUT WHY DONT WE TRY AND SORT OUT A GET TOGETHER AROUND THE SAME TIME,INFORMLY LIKE AND SEE WHERE IT TAKES US AND WHAT WE WANT TO DO.(DAMAIN THIS COULD BE YOUR 1ST WEEKEND AWAY) LET ME KNOW WHAT YOU THINK XX

Totally agree I cannot make the meeting in the states. but are willing to be part of an informal get together to see how it works we need to agree on location, date etc......

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THE MIDLANDS IS A GOOD PLACE,AS ITS IN THE MIDDLE .LOL . :) NOTHING TO DO WITH ITS EASY FOR ME. :D ALSO MY EX SAYS WE CAN HAVE IT AT HIS HOUSE .BIG GARDEN SO PEOPLE COULD ALWAYS BRING TENTS IF THEY WANTED TO.ITS NOT MUCH BUT ITS A START AS FOR THE DATE HAVNT A CLUE. :unsure:

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THE MIDLANDS IS A GOOD PLACE,AS ITS IN THE MIDDLE .LOL . :) NOTHING TO DO WITH ITS EASY FOR ME. :D ALSO MY EX SAYS WE CAN HAVE IT AT HIS HOUSE .BIG GARDEN SO PEOPLE COULD ALWAYS BRING TENTS IF THEY WANTED TO.ITS NOT MUCH BUT ITS A START AS FOR THE DATE HAVNT A CLUE. :unsure:

Midlands is fine with me, if your ex would be willing then great, I would bring a tent, good to have something to look ahead to.

As for date well that would depend on your ex and when others would be available.

There is enough people viwing this topic so come on where is the rest of you in uk come on don't be shy...

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Hi Bagpuss and Damian,

Ta, Bagpuss for looking at UKAN site. Your ex's place sounds just right, that's really kind of him.

I was looking around for a place with all the same things - somewhere people could camp, that had rooms as well. And someplace private enough so we can get a rest from frightening people with C, HH nappin - well I don't care so much about scaring people these days, but it'd be just lovely to have a social space that gives a rest from attempting explanations when I'm too out of it to string a sentence together.

I'd been thinking of retreat and workshop places, or farms and communities that do camping and indoor accomodation too, camping barns or hostels we could book to ourselves. But all that could cost a bit.

I could make the midlands on a good week. But can't be sure. If enough people get involved, would we want to be having a few meetings in different areas? Maybe that's got to be something we can do later.

Petra

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Hi Bagpuss and Damian,

Ta, Bagpuss for looking at UKAN site. Your ex's place sounds just right, that's really kind of him.

I was looking around for a place with all the same things - somewhere people could camp, that had rooms as well. And someplace private enough so we can get a rest from frightening people with C, HH nappin - well I don't care so much about scaring people these days, but it'd be just lovely to have a social space that gives a rest from attempting explanations when I'm too out of it to string a sentence together.

I'd been thinking of retreat and workshop places, or farms and communities that do camping and indoor accomodation too, camping barns or hostels we could book to ourselves. But all that could cost a bit.

I could make the midlands on a good week. But can't be sure. If enough people get involved, would we want to be having a few meetings in different areas? Maybe that's got to be something we can do later.

Petra

Hello petra

I have tried to ring UKAN today and yesterday left messages my email etc and haven't heard anything as of yet.The only reason for maybe different meetings in different areas is for other people who aren't fortunate enough to get transport to the midlands and who would not feel comfortable travelling on public transport, All we need like you say is for more of the people around to attend when a date is confirmed between all of us. Lets see if we can all get to this one first and what interest others show..

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THANKS FOR YOUR IN PUT PETRA. :rolleyes: WHERE IS IT THAT YOU WOULD BE COMING FROM ? I AGREE WITH DIFFERENT AREAS AFTER WE HAVE GOT OURSELFS UP AND RUNNING AND KNOW WHAT WE WANT AND HOW WE WANT TO GO ABOUT IT. :) (ANOTHER WEEKEND AWAY DAMIAN) TOLD YOU I WILL MAKE YOU STRONG.LOL :P

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Hi,

I'm out of it today - and my language skills are *BEEP*, sorry if I don't make total sense or just sound odd(er than usual)

I'd be coming from Scotland. I'm not always safe on public transport. And I also do quite a lot of getting on the wrong train and reading timetables wrong, missing stops, stranding myself. Money could be a factor for some of us. And travelling far is knackering - limits brainpower for communicating.

If there's not loads of people wanting other meetings closer to where they are, then I'm very happy setting off and aiming in the direction of the midlands and see what happens - I'm in need of an adventure.

don't you feel sorry for these people who have to row across the atlantic or something to find their limits?

Hope UKAN get back to you soon Damian. They always took a while but answered me in the end. I'm wondering if they have a big volume of correspondence. And if everyone there has N, I can see why it could take a while. If we got a date sorted, do you think UKAN would e/mail members - for people who don't check the boards.

Ta for making things happen

Petra

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