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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 lobby still going from strength to strength, in contrast to our diminishing situation.
8. The pain of being so alone; knowing there is not one ME group that is waging an effective fight.
9. The pain of fighting so hard, yet the illness is still left untreated and is taking its tragic course, regardless.
10. The agony of my wife whispering to me, at 2am that the pain is too much to bear.
Speaking as a husband, this is a place where love is required; I know that only love transcends the illness.

from: Notes for Carers
http://stonebird.co.uk/Notes/index.html

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 short listed. For it meant not only an acknowledgement of his own compassion and commitment over two decades to Severe ME, but also it feels like an important, much needed breakthrough, in recognising the needs and neglect of the neurological disease Myalgic Encephalomyelitis and the people most severely affected in particular.

We hope it shines a light on the truth: that we are seriously physically ill and isolated from mainstream medicine, that our physical health is at risk all the time that nurses and the medical profession generally do not understand or properly recognise our illness and understand how to care for us. It acknowledges there is a need and Greg has been raising awareness and shining a light on that need repeatedly till it has been seen and recognised, by this main stream prominent event.

Greg has always had a passion for truth and an enthusiasm for life and learning that continually pushes himself to grow and develop new skills, new perspectives, to reach out in love and understanding, to forge genuine and caring relationships with all he meets, to develop new and better understanding and to challenge both himself and others to recognise their own skills and abilities, to be better professionals, to understand and empathise as much as possible with some of the most vulnerable people in the care and health care system.

This is demonstrated clearly in the many ways he has tried to engage with the medical world, the political world and society generally, to raise awareness of our illness, Myalgic Encephalomyelitis, especially the experience of those most severely affected and highlight its clinical neglect and to continually counteract the misrepresentation, misinterpretation and misdirection and mistreatment that is rife.

Some of the ways Greg has supported us all:

The Secretary of the 25 % group for many years, including writing many documents, papers and articles on Severe ME and Carer issues. www.25megroup.org/

The Gibson Inquiry Severe ME Survey and much remembered presentation.
http://www.erythos.com/gibsonenquiry/

The EAME survey. www.stonebird.co.uk/eame.doc

The Stonebird website ( www.stonebird.co.uk)

Homebound Music website http://homeboundmusic.co.uk/

Holy Way website http://www.holyway.co.uk/

Free Carer Documents

Three Severe ME books with the third book specifically for carers out now, plus three spiritual books and many, many articles.

Here is the link to the new book, which is an important contribution to raising awareness of how to care for those most severely affected by Myalgic Encephalomyelitis.

http://stonebird.co.uk/Notes/index.html

This is a more in depth book on Severe ME:

http://www.stonebird.co.uk/severemebook/severeme.html

The only peer reviewed article on Severe ME, recommended by NICE.

http://me-foreningen.com/meforeningen/innhold/div/2012/08/Crowhurst-Severely-affected-i-Nursing-Standard.pdf

A new, innovative free Severe ME App on the MOMENT approach.

http://www.stonebird.co.uk/moment/index.html

This is what Greg Crowhurst has done within the field of Severe and Very Severe ME, where there are no reference books, where there is no body of medical expertise, where there is no cure, no treatment, little or no respect, where many kill themselves not from despair or depression but from sheer physical torment and medical neglect or die from severity of symptoms, underlyingly because of a lack of interest and input from the research and medical community, from the cover up that has gone on for the last three decades of a neurological disease, where life is desperate in every moment of every day, yet health care and services are weighed on the balance of belief: whether an individual practitioner, shockingly, believes the person is physically ill or not:

Greg has represented us all for over two decades. He has witnessed first hand the misinterpretation, arrogance, harm, abuse, neglect, denial, mistreatment, misinformation, because he has cared for me full time day and night through all this time and come to have a unique and intense experience of the truth of the disease Myalgic Encephalomyelitis and its cover up and misdirection by fatigue interpretation, all the time fighting for change and hope for myself and everyone else.

Let us not forget that Greg represents the unseen, the hidden, the ignored, those unable to be reached, often without help or misunderstood and continually shows he cares, he knows, he sees, he understands and he fights for a better system, founded on the truth and true nursing practices inspired and initiated by Florence Nightingale herself. Greg is a true nurse who deserved acknowledging for his total and utter commitment to nursing and to people with Severe ME.

Sadly he was unable to attend the awards, in person, due to the great distance and difficulty of getting there, alongside my care needs, paralysed by the slightest noise and unsafe to leave, however a close colleague very kindly collected the certificate on his behalf.

Greg has received many congratulations and uplifting personal statements from people in the ME community. And a very special wooden star saying:

" A star 
through and through
For everything you do
You will always be 
Nurse of the Year for us."

What more could anyone say?

Well done Greg and thank you. I am so proud of you!

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 : http://stonebird.co.uk/Notes/index.html

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 short, practical, easy to read sections, self-reflective exercises and contributions from fellow carers and those who are ill, from around the world.

There are “Notes” on:

The struggle people with ME face
How to care for someone with Severe ME
Employing and training carers
Creating a way forward
Caring for yourself

Greg Crowhurst, author, is an Educator, a Trainer, a Coach, with qualifications in Nursing, Experiential Learning, Training & Development, Counselling, Life Coaching, Web Design, plus an MA in Moral, Personal and Spiritual Development. Greg has spent the last twenty years caring for his wife, Linda, who has Very Severe ME.

As well as campaigning, representing, writing and conducting research on Severe ME for the 25% Group, East Anglia ME Patients Group and Stonebird, Greg has published two peer-reviewed papers on ME in The Nursing Standard and The British Journal of Nursing. In addition he built and published the first ever Severe ME App, the MOMENT Approach App. In 2015 he was a finalist in the prestigious British Journal of Nursing, Nurse of the Year Award.

This is his sixth book.

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
Mysteriously
Lost.
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 only my lips that have become silenced.
My whole body has been shut up
And somehow, strangely slipped, it seems,
Into an alternate universe
Where everything normal has turned upside down
And gone into reverse.
My feet are screaming with intense burning pain.
My legs and arms have turned to melted butter.
My chest is on fire.
My breathing shallow.
My face is swollen yet expressionless.
The pressure of my body on the chair
Where I awkwardly lie
Is falling in upon itself
Crashing down upon my thighs, my knees, my arms, my back
with the whole of my weight
As if I am crushing my self.
There is no movement here.
The lips will not open despite my best intent.
The teeth will not unclench.
The eyes will not pry open.
The light is burning through whole body.
Who needs eyes open then, to hurt more?
My toes point at twisted angles.
My knees press uncomfortably together.
My legs awkwardly refuse to shift position.
My stomach is swelling like a balloon
suddenly full of too much water.
The paralysis has gripped me bad again
And I, why I can do nothing, here,
in this strangely blank, yet painful place
But float and wait and try to think calm thoughts
Till life of a sort returns to me
And hope that he will know
That I am not ignoring him
Or deliberately not answering
Or strangely sulking in a hidden place
Refusing, somehow, stupidly not to speak
And answer him in his need to hear me reply
So that he can find some unimagined way
To help me.
The eyes will not pry open.
The light is burning through whole body.
Who needs eyes open then, to hurt more?
My toes point at twisted angles.
My knees press uncomfortably together.
My legs awkwardly refuse to shift position.
My stomach is swelling like a balloon
suddenly full of too much water.
The paralysis has gripped me bad again
And I, why I can do nothing, here,
in this strangely blank, yet painful place
But float and wait and try to think calm thoughts
Till life of a sort returns to me
And hope that he will know
That I am not ignoring him
Or deliberately not answering
Or strangely sulking in a hidden place
Refusing, somehow, stupidly not to speak
And answer him in his need to hear me reply
So that he can find some unimagined way
To help me.

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 cannot see the look of kindness or concern on another's face.

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.


http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366%2815%2900233-3/fulltext

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 edifice you have so skilfully constructed, without a single foundation in scientific fact, collapses- as it has this week in the New Scientist.
It surely demands a process of reparation.

Refs:

Fania Davis and Sarah van Gelder (2015)  Can America Heal After Ferguson? We Asked Desmond Tutu and His Daughter, http://www.yesmagazine.org/issues/make-it-right/can-america-heal-after-ferguson-we-asked-desmond-tutu-and-his-daughter

Coghlan A( 2015) Antibody wipeout relieves symptoms of chronic fatigue syndrome   http://www.newscientist.com/article/mg22730284.000-antibody-wipeout-relieves-symptoms-of-chronic-fatigue-syndrome.html#.VZeKcPlViko