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I have become what I would not want to be

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 weeping heap
Where once love lived
In all abundance
And joy.

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

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

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 for. Unfortunately with ME everything is compromised because the term "ME/CFS" compromises everything. Make sure you don’t compromise too.

You have to come from a centre of truth and integrity , with a lived commitment to understand the person's reality. Too much care is focused upon clientising people rather than empowering and enabling them.

Your position is the assertion of the person's equality of person-hood, nothing else.

You have to be very clear about your boundaries and understand how they work so that you do not caught up in someone else's "poor me/us" story or game.

You need to have negotiating skills , you need to know how to play to win. You need to have a solid grasp of the issues and facts, so that you are not outwitted by the other's "yes/buts", leading you away from truth to their relative view. Be aware of how relative views corrupt truth.

You have to stand firm for the truth of ME and the person’s reality  especially where others are angry, limited, misinterpreting or compromising the need. The physical reality of ME is not negotiable nor open to compromise. It is a serious neurological disease, with multi-system dysfunction that has a profound effect on the person’s life. 

Do not be fobbed off with something that is not suitable but makes the other feel self-justified - or makes you feel you have done your best or tried. It’s not about making you feel better it is whether the person is still negated and their need goes unmet.

Never come from a defeatist position, your advocating will not be effective. Advocacy is only worth doing if your intention is to be effective and that comes from clarity, truth and a belief in right and justice.

Stay grounded in what you know to be true, so that you are not taken in, especially by someone speaking with authority.

You need discernment to know who to trust, if anyone. The person you are representing is open to great harm,  if you get it wrong!

If you going to be an advocate for ME it is about breaking new ground and never accepting "No".

(Also available as a PDF : http://www.stonebird.co.uk/rule.pdf)




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"

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.