Stonebird

  CARING FOR ME, A SHORT POCKET BOOK COURSE I am sorry to hear that the link to "Caring For ME" on Stonebird hasn't been working. I have just sorted that out! If you don't know about the book, well, it is the Course and the Information I would have liked to have available to me when I was first faced with caring for someone diagnosed with Severe Myalgic Encephalomyelitis. For little did I know that i would need to develop an extra special level of awareness, one that is not obvious, easily won or even known about, one that requires time, skill, commitment, determination, empathy and above all, boldness of heart. To my horror, it did not take me long to discover that the most severely ill, in indescribable agony, with multiple unalleviated symptoms, are most often than not, left with no clear pathway for how to cope or survive. Their suffering so extreme, their illness experience so incredibly complex and unpredictable in its impact, it can be very difficult knowi

  CARING FOR ME, A SHORT POCKET BOOK COURSE I am sorry to hear that the link to "Caring For ME" on Stonebird hasn't been working. I have just sorted that out! If you don't know about the book, well, it is the Course and the Information I would have liked to have available to me when I was first faced with caring for someone diagnosed with Severe Myalgic Encephalomyelitis. For little did I know that i would need to develop an extra special level of awareness, one that is not obvious, easily won or even known about, one that requires time, skill, commitment, determination, empathy and above all, boldness of heart. To my horror, it did not take me long to discover that the most severely ill, in indescribable agony, with multiple unalleviated symptoms, are most often than not, left with no clear pathway for how to cope or survive. Their suffering so extreme, their illness experience so incredibly complex and unpredictable in its impact, it can be very difficult knowi

Well done Greg for this moving video, music composed and performed by him, also wonderful expressive drawings that convey emotion so powerfully! https://www.youtube.com/watch?v=i-HoS_A7wps A huge achievement to be shortlisted in an international creative art competition out of so many.people.: https://alpinefellowship.com/visual-art-prize “There are no words to describe caring for someone in agony for more than thirty years. This video was shortlisted out of over 1800 entries for the 2024 Alpine International Arts Prize.” There are no words, the only answer is love.

  A beautiful love song, written by Greg, illustrated very movingly by this wonderful video. https://www.youtube.com/watch?v=56jFWXNA8iU&feature=youtu.be Love has always sustained us through the most difficult of challenges and desolate experiences.

This is a document we published a while ago. There are can be so many ways that you can trigger deterioration or symptom exacerbation if you do not understand: 1. how to be with the person 2. when not to be with the person 3. and why that is necessary. It  was written shortly after my book "More Notes For Carers" and highlights how the most ill can easily be misinterpreted by Assessors plus the crucial importance of a Risk Assessment. https://stonebird.co.uk/goaway.pdf (Link to "More Notes For Carers". https://stonebird.co.uk/morenotes/index.html )

HOW TO BE ASSERTIVE IN ARTICULATING YOUR NEEDS. Linda faces major medical challenges this year, it is incredibly difficult working out how to convey her complex issues and needs to professionals so that they comprehend what she needs to keep her safe. It is so important that we do this, for the terrifying consequences, if they get anything, I stress “anything at all”, wrong are potentially life threatening or will trigger unimaginable suffering and deterioration.. We have to find some way to articulate what, let’s face it, is beyond incomprehensible to most people. I know we have done it before and we will do it again, only this time the stakes are much, much higher. This is bigger than anything we have ever faced. There is zero room for misunderstanding ahead, so it’s really serious. Day and night all of this is constantly on my mind. The stress, right now, is huge. Anyway, I was listening to the “Today” program this morning on Radio 4 and they had an airline executive on. He said som