Showing posts from July, 2015

And you hope

And you hope you will get better,
even if there is no treatment
and you hope that things will get better,
even though they never have
and you hope that people will start to treat you properly,
even though they never do
and you hope that you are not dying,
even though you quite probably might be
and you hope that tomorrow will be better,
even though it is unlikely,
because you simply cannot bear to believe that it won't be.

And that is how you live
your life with Very Severe ME.

The pain in caring

There is pain in caring for someone as ill as my wife; I made this list: 1. The pain of my presence, my voice, my thinking even, my attempts to try and be quiet, increasingly being too much for her to bear.
2. The pain of her total suffering, paralysis, deep isolation from anyone and everything, the absolute littleness of her life.
3. The pain of the immensity of the illness, in its face we are only a dot - at least that is
what came to me in a reflective drawing recently- a powerful dot of fire though, that will never
give up!
4. The pain of the hours spent coping, my wife never comfortable, never finding any relief anywhere, moving from lying to sitting, always being pulled back into paralysis and exacerbation of symptoms.
5. The pain of feeling less and less confident, hopeful, certain of a cure one day.
6. The pain of getting older, it has been more than two decades now, realising my body is
slowing, is not as strong as it used to be, to help.
7. The pain of witnessing the psychiatric lobb…

Well done Greg. I am so proud of you!

Few people really know the true nature of the suffering of Very Severe ME, where too quick a
movement, a quiet noise wrongly timed, an action, even slightly wrongly executed, can have devastating physical consequence, leading to increased symptoms and deterioration.

Greg Crowhurst is one of the people who absolutely does know and has not been afraid to do something about it.

He has always promoted a pathway of partnership and respect. He has learned the only way to support and be with someone Very hypersensitive with Severe ME, is to approach with profound flexibility and patience, waiting for the right moment to interact and help meet needs gently and tenderly.

On 20th March 2015, to our delight, Greg was awarded third place in the prestigious BJN Nurse of the Year Award. This is an amazing achievement for an unwaged Carer, isolated from the world by the necessity of caring full time for me, his wife, with Very Severe ME.

We were both stunned and excited to hear that he had been sh…

Announcing "Severe ME, Notes for Carers".

Stonebird is proud to announce the launch of "Severe ME: Notes for Carers", a guide for people
involved in caring for those who have Severe ME/ Very Severe ME, focused upon front-line carers and those new to the disease. Caring for people with ME at the severe end of the spectrum, can be extremely challenging to get right.

A high level of carer skill and awareness is required; people this ill are extremely vulnerable to harm through the wrong approach or the wrong timing.

Book link :

This illustrated handbook is packed full of practical tips, insights and guides to help the carer understand the symptom experience, the signs and clues of deterioration and the specific hypersensitivities the person might experience, so that they can meet need, with awareness, in the right moment. The focus is upon maximising the opportunity for successful interaction.

The 241 page manual seeks to inform, inspire and, above all, uplift carers, through s…

A merciless attack

When you care for the person you live with full time, there is no getting away from the
impact of the illness.

It destroys every normal event and celebration. It invades every part of your life and awareness, in a way the formal, paid carer does not have to be so concerned with,because they will have their own life apart from their caring responsibilities.

There is no let up to the disease's merciless attack, its progressive worsening, its savage
ravaging of my wife. The worse times, I think, are when it is so bad, there is apparently nothing
I can do to help ease, even slightly, the suffering.

(From:"Severe ME, Notes for Carers")

11pm : Paralysed in the Dark

Paralysis has struck me yet again
And trapped me, deep inside my head.
Thoughts float observing my situation
With no way out to express themselves or call for help.
Finally, he comes.
"Do you want help?" He asks.
Yes, of course I want help, but I cannot say what
and I cannot tell you what would ease the suffering
or how to help me anyway.
I try to answer
With a muted groan.
There are no vowels or consonants here
Just the ridiculous sound of a mumbling crow.
My lips remain shut
My teeth are clenched tight and immovable.
My eyes are darkened and closed
as tight as if they were sewn shut.
I'm here, a prisoner in my own head.
It is quite peaceful though, ironically
Just floating in my mind.
The pathway to my mouth, for speech
Is somehow
I don't know how
I don't know why
I don't when
It will return
But I cannot say the simplest word.
My thoughts are still surprisingly lucid.
Sometimes they too disappear
In a dark empty fog of nothing.
It is not …

When a smile is not possible.

People with Severe ME might describe their existence as tormenting and tortured, but what do you do
when that deteriorates by a quantum leap and every second your body is physically breaking down and you feel you are dying but no one knows for sure?

How can you convey the difference in experience, the difference in sensitivity required and the difference in understanding as you shout when your beloved scratches his head and you cannot bear it? Or you cry out at a gentle touch or a kind word even, as the sound hurts you. How cruel is that?

 Where is your loving heart and your sweet smile, your kind  words of gratitude and your own self responsibility and awareness? Nowhere visible, that is for sure.

 When your face is palsied and the muscles will not work, a smile is not even possible, so you end up with a very severe face instead. When your lips will not move, you cannot speak clearly either and when you cannot open your eyes, for paralysis has gripped them tight closed, you simply c…

Crossing a line

The psychiatric lobby have crossed a line. They are  now vacuously declaring in the Lancet that the  "most severely ill patients might need even more intensive (psychiatric ) treatment."

There are no words strong enough to describe  how terribly dangerous their ghastly propaganda is and what a real threat it poses.

The photo was taken yesterday afternoon. The quote is from the new book.

More than a Tragedy.

As Desmond Tutu states, if somebody injures you, “it’s as though they define you. If somebody slaps your face, they then define you as the person whose face can be slapped.” (Davis & Van Gelder 2015) For decades people with ME have been defined by the cruelty of having the vacuous label called “CFS” pinned to their heads, making them objects of derision and disdain; objects of disgust that any doctor can freely dismiss with a sneer. Living lives of unimaginable suffering and neglect, especially the most severely affected, for decades on end, people with ME have had to endure the hideous pain of seeing the perpetrators of the violence against them, those responsible for spreading the lie and deceit that ME is a “somatoform”, all-in-the-mind- disorder- of- thinking,being portrayed in the media, as the heroic victims of a “campaign” against them by an ungrateful ME Community. You can, however, only ignore the medical evidence for so many decades before the multi-million dollar edific…