OUR HUMAN RIGHTS!!!???

[dottiedog]

Do you think that all this discrimination agains Fibro sufferers is against our Human Rights?

If known terroirsts & criminals can pull this out the bag every time they are challenged then should we?

[Hidden]

Personally, yes I do . However without legal aid I can't see how anyone could afford to challenge them.

Criminals get legal aid, disabled people don't ! ( says a lot doesn't it ? )

[dottiedog in reply to Hidden]

we need to get someone to get their thinking caps on ! foggy attack can't get fingers too work- grr can get this to come out!

[Mdaisy in reply to Hidden]

Hi I got legal aid to help get DLA ....so there are places out there you can get help with benefits certainly..x

[Hidden in reply to Mdaisy]

Yes, I did too Mdaisy , but not for much longer . Legal aid for appeals through law centres and the like is being withdrawn . Charity funded help will still be available but the strain on those resources are going to mean very long waits for those in need of help and advice.

[cxs957 in reply to Mdaisy]

most places no longer get funding especially to represent people

[Hidden]

yes I do, we are left to sit in our own pee and sh*t because we cant get help, what next the gas chamber for us all, because we arent perfect. I for one aint going away

[dottiedog in reply to Hidden]

good call lally! but who & how do we takle this?

[dottiedog]

Please look at my blog re petitions. Do you think we could use this to start awareness about our Human Rights?

foggy as ?

soft hugs xxx Jill

[Hidden]

get some one to listen,anyone on twitter who can tweet to a celeb [as they seem to have all the power lately] some who has a high profile, Ive never heard fibro dscussed on This morning etc

[Hidden]

Ive alreaay signed them, Ive emailed my mp and darling Mr Moron, social services have helped me greatly but with their cuts also there only so much they can do, Thank god Ive got family , god help those who havent

[Hidden]

I've signed every petition going on Fibro, welfare reforms etc. I've written to Cameron, Miliband ( just in case lol ) and also my own MP . Not sure how twitter works , but I do have an account so I'll check it out.

What we need is a celebrity with Fibro . I've heard Sinead O' Conner may have it, anyone know if that's right ?

[Butterfly54 in reply to Hidden]

Hi Helen,I`ve just googled Sinead O`conner and yes she doe`s have it,but says how well she manages with her family ect ect.

With her money I exspect she can get all the help she needs,and has no need of benefits.

I by no means begrudge her and she has worked hard for what she has,and I wouldn`t wish this on anyone ......except Cameron,Milliband and their cronies.........I won`t go to heaven will I LOL.

If you google it there were some other interesting bits there about them not knowing how high the suicide rate was with people with fibro.

But I reckon is must be pretty high.

So glad we have each other on here to bounce off.

Love and hugs Jayne xxxxx

[Mdaisy in reply to Hidden]

yes apparently Sinead O connor M.E and Paula Abdul (fms) and more recently glamour model Jo Guest. I think she did an interview on this morning couple years back talking about symptoms and how debilitated she was but the drs couldnt diagnose......Thousands of FMS sufferers phoned in and said 'IT'S FIBROMYALGIA '

oooh and not recent at all in fact its years and years ago but Florence Nightingale rumoured to have and thats why we have the 12th May as awareness day is her birthday ...also nurses day too

M x

[dottiedog in reply to Mdaisy]

Mdaisy never knew that about Sinead, Paula, Jo or Florence. Pity when I first read this i thought you were going to say Florence & the Machine ! Oh how dozy am I ?

xxx dottiedog

[Hidden]

I guess one of the drawbacks ( for us ) of celebrities of having Fibro is that they don't necessarily have the same financial struggles we do .

It would be good to find one prepared to stand up and talk on our behalf, but if they can get private treatment etc , then their experiences won't be the same

xx

[Hidden]

I seem to remember (through the fog, so I could be wrong!) that Esther Ranzten's daughter has ME, and she (Esther) has talked a lot about it, how horrible it is to suffer, the impact on the whole family etc. Don't know how much help that is.

I don't think the financial situation is the only issue here. Of course, if you can't work, and can't get benefits, then the financial situation is dire. But the reason it is so hard to get benefits is the attitude of certain elements of the medical profession towards the illness, and therefore towards the sufferers. And other people, who aren't medically trained, pick up on this attitude, and then they just see us through this filter that makes us appear like hyponchondriacs, or malingerers, or scroungers, or attention-seekers or whatever other negative label they want to put on us.

What we need is a way to get non-sufferers to understand that this is an ILLNESS, not a life-style choice. And in these days of austerity, we are easy targets because we don't have the energy to fight back effectively. And we aren't as eloquent as we used to be, thanks to the fog. And politicians and their like using words like malingerers scores them publicity points, and it makes it look like they're making real savings to public expenditure. If they spent less on PR it would be better for all of us!

Hugs to all.

xx

[dottiedog in reply to Hidden]

hi KazF

I agree that it is not just a financial issue here but a moral one as well.

The Government is always looking for brownie points about saving money, getting people back in the work place , familiy standards blah blah blah!!! They don't show the whole picture- how could they if they are not prepared to educate themselves & others.

soft hugs xxx dottiedog

[Hidden]

I'm thinking though Kaz , not just about finances from a not needing to claim benefit point of view, but also the fact that having money gives them access to private treatment , private care etc . In which case they may not suffer the same effects the rest of us do . I could be wrong .

Money may not buy happiness but it makes misery more comfortable. I'm just wondering, if that is the case , whether they play Fibro down ? Hopefully not .

It's still worth a shot to find a " name " willing to speak out about Fibro though .

What we need I guess is some kind of patron ?

[dottiedog in reply to Hidden]

a Patron would be a great idea -who would be willing to be the face of Fibromyalgia. How high should we aim for ?

xxx dottiedog

[Hidden in reply to dottiedog]

As high as possible I should think , the more well known the better . Lally's idea of approaching Stephen Fry is a good one, but actually getting to speak anyone is quite a task.

xx

[Hidden]

if your ill your ill I could win the euro tomorrow, but have I got the strength to spend it, no I havent, Ester Ranzen daughter had CFS when it was known as yuppie flu, she was very ill. I know he hasnt got fibro but what about StephenFry, he has a large following on Twitter, he s erudite, etc

[dottiedog in reply to Hidden]

never done Twitter- must ask my son about this . He is 15 so he's far more techincal minded that me! xxx dottiedog

[Hidden in reply to dottiedog]

I can't work Twitter out dottie lol . I can't work out who's really who they are supposed to be ! If you put a celebrity name in it brings up 100's with the same name !

xx

[Hidden]

just a thought he s suffered badly with depression, which this illness leads us to

[Hidden]

Be interesting to find out if any lawyers would take on a case like this on a no win no fee basis .

[Hidden]

I've just contacted 3 firms to see what their take on it is . I've quoted human rights and the law of this country that states people are innocent until proven guilty .

We shall see what, if any , reply I get .

[dottiedog in reply to Hidden]

HelenUk1963 that's amazing- will be intresting to see what they say if they get back to you . wow soft hugs xxx dottiedog

[Hidden]

good on you Helen

[soulsusie]

We gotta fight for our rights as the song goes xxx

[dottiedog in reply to soulsusie]

and Partyyy! lol xxx dottidog

[bumblebee57]

Hi. Perhaps we should write a song. Never know, it could get in the charts like the military wives. something like "Ive got Fibromyalgia, Ive got it day after day. ive got Fibromyalgia, I wish, i wish it would just go away" (to the tune of the Wurzles Cider drinker) Anyone want to add to it??!! As to the idea of a patron, what about Ester herself. She got Childline up and running. just a thought...

[pottyness in reply to bumblebee57]

sorry bumblebee, shes busy setting up silver line. yes i know that sounds mad. but its real. its because the older generation are lonely and helpless and sometimes trapped or being bullied by carers or family members etc so its like child line only for older people.

the problem with celebs having FM is they are looking fine and they are working. so they arent lying on the sofa in agony. if i had a job that offered to pick me up at my door take me to work, have someone else do my hair, and my make up and chose some nice clothes for me and even help me into them then i can just sit looking glam [i wish] and smiling [up to my ears on pain meds but no one will notice] then i might be able to do that job. they will also pour me back into the limo and drop me off at my sofa when finished... now that celeb doesnt look ill. and nor would i for that amount of time but come back a couple of hours after and see the state i would be in..... so celebs with FM are not going to do us any favors as i dont see them on a zimmer or a walking stick or crutches or curled up on the sofa or fainting or slurring their word [actually thats probably normal]. but you understand what i mean. they only go out at their best on their best days having prepared themselves with days of rest first.... then we dont see the state of them afterwards.

[netta62]

I think we are discriminated, but you got me thinking, which is pretty good considering I got a flare and fibro brain.....Do you think if we got together and got a petition, that a solicitor would fight our case ?

[cxs957]

I like this blog, I love that we can all get angry and discuss this but at our leisure, I would be worried about any of us truly trying to publisise this as it would be such a strain which is why we are so under represented. people with missing limbs, blind or other visible conditions usually have the energy to fight, we struggle to find the energy to live. that is one of the huge advantages of the internet fibroduck is a good charity trying to raise awareness and they have celebrities who take photos with a fibroduck.

[dottiedog in reply to cxs957]

? did you say fibroduck? have never heard of this more information needed please cxs957? lol I do agreed about the stain ti would put on any indivdual trying to take on the system but give a group of fibro's enought time & we'll figure something out! Erm did ant of that make sense? much bran fog going on here I blame the weather!!! xxx dottiedog

[cxs957 in reply to dottiedog]

just Google fibroduck, its a UK charity aiming to raise awareness for fibro and recently they set up some fundraising for research as well called fibroduck foundation. the way they raise awareness is that you can buy a duck, and then you should take photos and send them to fibroduck, the idea is that us fibromites are like a duck out of water, as well as the duck is covered in tender points, you can buy ducks for family members and maybe try explain it that way...

[pottyness]

fibroduck.com/about/ had to look it up. i too had never heard of it dottiedog. thanks cxs957 for bringing it on here. i love the bit about the duck being chosed because having fibro is like being a duck out of water cos you can till do stuff but not as well or as fat as you could when you were in the water.

[sh3ronb]

Hey, Yes, i think it is against our human rights, and the very person to go see about it is your local Councillor or MSP. They can be sooo helpful (((hugs))).x