MY FIRST TIME!: I WAS DIAGNOSED WITH... - Fibromyalgia Acti...

Fibromyalgia Action UK

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MY FIRST TIME!

rolo profile image
rolo
9 Replies

I WAS DIAGNOSED WITH FIBRO TWO YRS AGO AFTER FIVE YRS OF SUFFERING. I LIVE ON WEST COAST OF IRELAND AND WAS FINDING IT HARD TO FIND A FIBRO GROUP. SPOKE TO A LOVELY YOUNG LADY FROM DONEGAL WHO RUNS SUPPORT GROUP THERE. AFTER MANY CHATS OVER PHONE AND EMAIL SHE TALKED ME INTO SETTING UP A GROUP HERE IN SLIGO. AFTER A FEW WEEKS OF ME TALKING ON RADIO AND LOCAL NEWSPAPERS A NEW FIBRO SUPPORT GROUP WAS BORN ON 14TH JUNE. 39 PEOPLE ARRIVED AND I WAS OVERWHELMED. PEOPLE CAME FROM MAYO AND ROSCOMMON. TOMORROW I GO BY TRAIN TO DUBLIN TO THE DAIL LEINSTER(GOVERMNENT BUILDING) TO HAVE A BRIEFING WITH TD'S AND SENATORS, ALL THE FIBRO SUPPORT GROUPS FROM THE COUNTIES WILL BE THERE ALL DRESSED IN PURPLE. THE PURPOSE OF THIS MEETING IS TO HIGHLIGHT FIBRO AND HAVE IT RECOGNISED AS A DISABILITY THEREFORE MAKING IT EASIER TO CLAIM FOR WELFARE SUPPORT. I AM SO NERVOUS, I'LL KEEP YOU POSTED. SOFT HUGS TO EVERYONE.XXX

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rolo profile image
rolo
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9 Replies
lynz profile image
lynz

wow how great ,good on you :) ,would be lovely to hear how you get on ,and pics of you all in purple if they didnt mind you taking some would be great too xxx

beth2 profile image
beth2

hello rolo well done and enjoy tomorrow love beth xx

rosehip profile image
rosehip

Well done and welcome x

shazzad profile image
shazzad

Welcome and good luck in all u do to support us fibro's! Thank u xx

scrumie profile image
scrumie

hello and welcome hope all goes well tomorrow. will be interesting to hear how it goes.soft hugs.xx

soulsusie profile image
soulsusie

HI Rolo and a big welcome to this lovely friendly site, where we share love and laughter, ups and downs, rage and rants!!

I want to say a huge well done to yourself for what you have achieved, It would be a wonderful site to see you all dressed in Purple.

Hope the meeting goes well.

Soft Hugs, Sue x x x

Hello and welcome to our lovely forum Rolo! Great to see you here and well done on your efforts to start your own support group! Brilliant! I hope it goes really well for you, please let us know how you get along. Hope the meeting goes well too! I am sure it will be fine. Fantastic to hear something so positive! :) :)

rolo profile image
rolo in reply to

Hiya fibro mates.The meeting at the Dail on Wed was amazing!!!!! It was so emotional to finally meet some of the other support groups from around the country. So many td;s and senators from all parties came and heard our depution.We did all great in purple. An information folder was given to all td's etc. Our three representatives from Carlow each gave a talk on "What is Fibromyalgia" and "Living with Fibromyalgia", and they did a fab job. I had been in touch with a td for Sligo,Michael Colreavy who met me there,we had a coffee while i told him of our plight with this"invisable illness", we went into the briefing. Firstly,like so many,he had'nt heard of fibromyalgia,then disgusted to hear it was'nt recognised here in Ireland as a disability. In fact all the td's/senators (23 of them,good turn out) were all disgusted.So i'm hoping the shit hits the fan????? Watch this space!!!!!! Thursday evenings 2nd support group meeting was brill,38 attended 6 new fibro-pals.I'v been absolutly knackered, feel like i'v fallen down the stairs 20 times, but i would'nt have missed it for the world. So fibro mates i'll love ya and leave ya, hubby makin spag bol, i got my jammies on and i gonna veg out and watch shite on telly. Soft Hugs Everyone.xxxxxx

rolo profile image
rolo

well hello there fibro mates. the meeting at the dail on wed was amazing!!!! It was so emotional to finally meet some of the other support groups from around th country. So many td's and senators from all parties came and heard our depution.We all did look amazing in purple. An info folder was given to all td's,our fibro reps from Carlow did their presentation on fibro,and did a fab job. My td for Sligo, Michael Colreavy,met me,bought me coffee while i explained all about this invisable illness,before we went in to the briefing. Firstly, like so many,he had'nt heard of it, then was disgusted to hear it was'nt recognised as a disabiliy. In fact all td's/senators ( 23 of them,good turn out) were all disgusted. So i'm hoping the shit's going to hit the fan???? Watch this space!!!!!! The 2nd fibro support group on Thurs was a brill night,35 attended 5 of them new. We met at 7pm and chatted till gone 11. yesterday and today i've been knackered and feel like i'v fallen down the stairs 20 times, but i would'nt have missed it for the world. So fibro mates i'll love ya and leave ya. Hubby's makin spag bol,garlic bread, i'v got jammies on and i gonna veg out and watch shite on telly. Soft Hugs Everyone.xxxxxxxxxxx

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