Fibromyalgia Action UK
38,659 members50,914 posts

Please read, a little long but i'm quite proud of it :-)

To the DWP, ATOS and the Government I say;

I reserve the right to be me on my terms, as my body dictates to me.

I say it is my right to manage my condition and that includes;

using my expertise to know what I can do and when I can do it;

to follow my doctors advice when they say that I must, in order to

manage my condition follow a simple gentle exercise program;

to eat a low fat, unrefind diet to help my pain and weight;

that in order to do this I feel it is my human right to make

sure I move when I can, not party, socialise and spring clean my home,

or to work part time or full in a way you take for granted;

to shop and cook in my own way that I can manage;

after all are these not basic function I need to perform,

that I cannot always do.

For every small success I have, they may only be one or two,

this week I got some food in and did beans on toast,

for maybe playing a board game with my child, or taking

the time to forget my situation by watching my favorite show,

I am to loose a point, a negative or a cross in a big red pen,

so all my small acheivements are now my worst enemy

that catch me unaware, with first a smile and then a glare.

You cant to do this or that, forget that I (them) can do so much more

today you had a shower and did tea and although thats just about it,

you stood to cook and to wash away the grime, you must be fit to work.

I (them) want you off my books I really dont care how,

I cannot see a problem with you, you talk and sit just like me;

I dont want to hear you used to be like me, fit, healthy, normal;

you (me) dont know what your on about I'm qualified to judge,

cant you see the name and rank upon my desk, its up to me you see,

I say your ok and fit, i dont care how you feel, if you did it once you can

do it all again, just like me.

I want to take charge of my life, to let success back in, for me to do this

I must tell you you are wrong, I will not let you minimise me and I stand up for

my rights, its time we all stood up, be counted and start to shout it out,

we will be heard and valued, get one voice to say "its you who are wrong,

not us" dont you all agree.

I have just made this up, reply if you feel the same as me.

I'll be posting this on other websites :-) (I wrote it on the facebook UK Fibromyalgia Syndrome Awareness Group)

8 Replies

hi thats really really good well done you and so very true bless you gold star o n its way love diddle x


very well put bluebunny couldnt agree more xx


Well put bluebunny x x x x


Well put Bluebunny!


well said xxx


Oh, well done. You are cleaver. Mind you, because you can string more than 3 words together,(they) will no doubt penalise you for it!!!

I haven't even tried to get any form of benefit at the moment as I too want to manage my life my way! If I can weed the garden on Wednesday, but hardly stand up on Thursday, then that surely is my perogative! Some days I can believe I am back to my old'normal' days. But at others, like today, all of me hurts and I spend so much concentration trying to pretend it doesn't and still attempt the shopping, that my concentration on things like walking and talking go all to pot!

Until (they) finally admit that FM is a dibilitating disorder/syndrom we all have to struggle on.

My husband developed MS 30 years ago. It was very rapid in onset and he was in a wheelchair within 3 years, with no remissions. He has had to be in a nursing home for the last 26 years. But 30 years ago there was no formal recognition of MS. Now if you are diognosed with MS it is an automatic entry into the realms of the disabled. No jumping through hoops!!! Role on the day FM achieves the same statis. Rather ironic really, that 30 years on I am having to fight all over again. This time for myself. Best wishes Sue.


Thanks for all your comments, the only was we will be heard is to shout, I'm thinking I'm fed up of hiding and keeping quite, I want to live my life on my terms but words are cheap, not sure how I can reclaim my worth and equality back, I think been on benifits has held me back but maybe now I should tell them my terms not them tell me, if they are not qualified and dont understand, thats ignorance in its truest sense and therefore discrimination. I'll just have to see, I have a feeling I wont have an easy trip with this ESA assessment.

Well thats may soapbox moment :-)


Fantastic stuff, have sent you a personal message.

Whippet x


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