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Showing posts from October, 2013

This is what's going on

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This is the hardest thing..

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I have become what I would not want to be

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I have been deconstructed Fractured Dismantled Almost destroyed By noise Indescribable assaults have torn me  From myself Taken parts of me Long treasured And shredded them to nothing. I have been made into empty no one Distracted Dissipated Forced over the edge Into a timeless void Inconceivable to most I have been trying Desperately to claw myself back out From an endless pit of destruction That dismembered me Limb from limb Mind from mind  Body from body Till I did not know which direction Would lead me safely home again. I have become What I would not want to be Who I do not recognise As me I have been ransacked By peoples selfish ignorance And harmed, tormented, tortured Demented even  To despair But saddest of all My love and I Have been physically Rent apart From comfort  from kindness From oneness Together By the deliberate  Careless Arrogance Of those who should know But do not want to know The harm that they do And I am left a

We're as good as dead here, but we won't give up

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Can't take any more of this (x4) my head is lying broken with my dreams shattered on the floor. Here's my hand my love take it if you can if you can't  that's okay I understand Nobody comes round here anymore they've heard it all before There's nothing as sad as that dress you once wore It's not the pain that gets me it's the corruption that eats me up We're as good  as dead here but we won't give up. You must be joking if you think I can take any more of this my head is lying broken with my dreams shattered on the floor. Words & Music Greg Crowhurst

A rule for an ME Advocate

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You are responsible to represent the person, not yourself. You are standing in for the person, to get their needs totally met, to speak for them. It is not your position to be overly nice to whoever you are talking to and so accommodating of their situation that you compromise the position of the person you are supposed to be representing. There may be two sides to a story but you need to be clear which side you stand on; it is the person’s. It is your duty to be assertive on behalf of the person you represent, even if it doesn't come naturally to you. Anything else will lead to the potential negation or minimising of the person's reality. Compromise concerning health or symptom experience is unacceptable. You need to be polite but you don't need to be popular; you need to be assertive for the truth however uncomfortable that makes you feel. You can't make everyone happy necessarily. The person you are trying to please is the person you are advocating fo
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Be Afraid, be Very Afraid !! "There was a strong need identified for work with, and including, people with severe M.E. as research with this patient group is lacking. " UK CFS/M.E. Research Collaborative Executive Board  Summary of Discussion 7th October 2013

This is what is meant by "Noise Sensitivity"

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This is the impact of noise in Very Severe ME; this is what is meant by "Noise Sensitivity".  This is how my wife's whole day has been.  Very, very few know, even fewer understand.