I know this is a longshot...

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I know this is a longshot...

Postby Mumihippo » Sat May 11, 2013 12:18 pm

Ive got a meeting with work next week. I was wondering if anyone knows of someone that can come with you to these meetings. Someone who can explain about Fibro. Ive heard people talking about disability advisers but not sure what they do etc.
Apparently, its not possible for someone with Fibro to have such varying symptoms as i described. Im looking either for credible written info to take with me or for someone to come and explain the severity of this condition as well as the fact that you can be fine one minute and not the next. My GP has already written letter to this affect but its not being taken seriously.

You will all know that 1) its impossible for someone to see how you are feeling on the inside, 2) the wall of exhaustion can just suddenly hit you and 3) we are not making this up. just because its a 'subjective condition' is what i am repeatedly told. And reliant upon self reporting only. How can i make them see that it is a real illness with real pain and real problems and it doesn't matter how well you look.

I would really really appreciate any help, even links to websites etc.

Thankyou!!!!!! :-)
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Re: I know this is a longshot...

Postby lolabolla » Sat May 11, 2013 2:02 pm

I have found that the DWP website is invaluable for finding information on fibromyalgia.

Also check out NHS websit too, you can find loads of information that you can print out for your meeting.

Although you may not be able to find an advocate to attend the meeting with you, you can still take a friend or family member.

From my own experiences of dealing with my former employer, I have learnt to be honest with myself and not 'downplay' how fibro affects me.

Just tell them how it is, you should be covered under the DDA act anyway.

Employers should make reasonable adjustments for you.

Good luck, don't worry.

Lola xx
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Re: I know this is a longshot...

Postby Iceskatemum » Sat May 11, 2013 10:18 pm

HI Mummihippo (love the name)

Not sure if you can get someone to come with you at such short notice but I think disability advisors are based in local employment centre , if you check them out then you may at least be able to give a name to your employer so they can check what thier responsibilities towards you are for your disability because they do have responsibilities towards you ,even if they don't like it.

I'm afraid this" its not even a proper illness" cause its not there all the time, is so common with people and yet they seem to accept that MS or other conditions with periods of remision exist.

For work's info FM is a proper illness as it has its own World Health Organisation code ....in wait for it ....the International Statistical Classification of Diseases and Related Health Problems.....this world wide health organisation collate the details from each country on nos of people affected , age groups etc.

For more easy read info you might be better to try someof the info on this web site even som eof the threads on the forum might be useful. I found this thread viewtopic.php?f=12&t=16501 very useful for getting info for my OH. Other popular websites like NHS or patient UK might also be good .

I would just add one word of caution about bringing outside people into work for HR type meetings . I know with me I was only allowed a union rep or work "friend". I always took the union rep as they were great at shorthand and so could remember bits of the meeting I forgot and they jknew lots about employment lay wo kep folk on thier toes.

Hope it works out for you , take care adn let us know how you get one.

Good luck
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Re: I know this is a longshot...

Postby whoami » Sun May 12, 2013 4:45 am

I am sorry I can't offer any advice to you as I live in Canada.

To those of you in this country, I have info. Because my fibro was caused by an accident at work, I am covered by the Workplace safety insurance board. I was having difficulty with my claim so the Workers Advisor from the ministry of Labour handled my claim, I did nothing. I received a 100% disability pension from them

Expect the worst in life you won't be disapointed and you'll be prepared!
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