Posts

Introducing "Living in the Heart of Love"

Image
At last, after months of work, revision the new book is ready !  I am delighted to announce the publication of “Living in the Heart of Love“, a book for those that suffer. For more information, please see the  brochure here. This is the book  webpage. Here is an overview:



 This is a reading from the book :



And here is a short video explaining the background to the book :

A Reply from NICE

Image
I recently received a reply to my letter to NICE. It is good that they acknowledge " the strength of feeling in the patient community". http://carersfight.blogspot.co.uk/…/nice-reply-to-sir-andre… Dear Mr Crowhurst, Thank you for your follow up email of the 22 September, your letter has been passed to the corporate communications team to respond. NICE will access all the evidence that falls within the new scope however, I cannot confirm or deny whether the JCPMH report will be included as the new scope hasn’t been developed as yet. We will follow our usual, published process to search for and assess evidence to answer the questions which will be set out in the scope for the guideline. The draft of the suspected neurological conditions guideline was released for consultation in August this year. Consultation on this guideline has now closed but the committee will consider and respond to each comment submitted by stakeholders. The guideline will also be revised before publicati…

A world of medical denial

Image
YOU ARE EXTREMELY SERIOUSLY ILL. Yet you live in a world of medical denial. Medicine therefore makes us worse. Sadly we are safer at home, away from all who would do us harm, whether unintentionally or through deliberate ignorance and wrong thought or arrogance. We are at risk every day that practitioners are allowed to
choose whether they believe that ME is a neurological
disease or a mental health condition. We are at risk all the time that people do not understand that
any intervention no matter how seemingly minor, can and will
make us desperately more ill, if wrong. We are at risk all the time that other people do not understand
that their presence alone can do harm if they do not take into
account the complex hypersensitivities that people with Severe ME experience. Whoever would believe that speaking in an ordinary voice or
asking a single question or touching a person's arm or turning the radio on or wearing your favourite perfume or perhaps giving someone a sandwich made with th…

A Crime Against Humanity

Image
YOU HAVE TO BE STRONG. You have to find love. You have to be more than you ever thought you could be. You have to be in the most dire circumstances and still come through by your will alone and the will and love of any who genuinely care for you. When this level of torment hits you every moment of every day it is beyond coping with. Some don't make it. Some die. Some choose to end their suffering. And some keep going desperately hoping, wanting, expecting, demanding that the future is better than the past. You draw on an invisible wellspring of determination to live and a thirst and hunger for justice and truth, for healing and hope and to see those who have deliberately covered over the truth of this illness held to account. For this level of torment is a crime against humanity.

12 REASONS WHY YOU SHOULD CHOOSE TO LIVE, WITH SEVERE ME:

Image
You are a beautiful person.Your life is precious.Giving in and choosing death means the culture of deathand denial wins.▪There is always hope of a better moment.There is always hope of a biomedical breakthrough.▪It is not your fault that you are ill and you should not blame and punish yourself because you are struggling to cope.▪Suicide and euthanasia cause massive harm in its impact on other people emotionally, mentally and can lead to more suicide and death.▪There is always something you can change however smallthat might make a difference.▪The illness is huge but you are bigger than it.▪You can rethink the way you are living and make differentpositive choices to accommodate your difficult reality,even small things can make a big difference.▪Feeling you want to kill yourself is not the same as actuallywanting to do it.▪You can be kinder to yourself and validate how amazingyou are to be living in such difficult circumstances, not hurt yourself more.
This is dedicated with LOVE to all…

5 WAYS TO BE A BETTER CARER

Image
Greg Crowhurst (Published in the latest edition of MCS Aware Magazine)
https://www.mcs-aware.org/mcs-magazine
A life well lived; that is how I look back on the last 25 years, the quarter of a century I have spent caring for my profoundly ill and disabled wife. It’s a long, long time, those prime years that I might have devoted to building a career, or the training business I freely chose to give up to embrace the anonymous, impoverished path of the full time carer. Those years have not been ones of status, influence, wealth, power, but, in terms of what counts at the end of the day, they have been fruitful years of learning about how to be truly real, truly present, fully alive, for which I am deeply grateful. Being touched profoundly by love, learning how to face and overcome numerous fears and obstacles, growing immeasurably as a husband, as a man, tasting a freedom so real my heart would burst, surely this is what a life well lived is about? The process of being a carer, I have foun…

Recognise as Torture?

Image
The left side says sleep.
Let go.
No more fighting me.
Give in.
Relax down to nothingness.
There you will find
Peace
Rest
Stillness.
Yes but also
Emptiness
Pain
Loss
Grief
Untold agony
Waits with you
I say.
The right side
Still has some movement.
I long to be used
It says to me
I want to do so much
I have so much to offer.
Keep awake.
Keep alert.
Don’t let the paralysis
Grab you!
Yet still it creeps
As the two sides argue
The need for life
For love
For creativity
For being
Vs the desire
For peace
Stillness
Comfort
The elusive
Yet never found
Promise of rest
Reneged on
again and again
And again.
Yet it is
Peace,
But a peace within
Negation
Inability
Lostness
Disappearance
From everything
From everyone
Even myself
How can I make sense of this?
How can I keep going
Whilst the paralysis
Grabs at me repeatedly
Without relent?
How can love
Hope
Possibility
Beauty
Triumph
When I am continually
being dragged down
Into a tormented reality
Few know
Little understand
Or even
Recognise
As torture?