CARING FOR ME, A SHORT POCKET BOOK COURSE

 



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 knowing just what to do or how to do it and when, without becoming part of the problem , triggering deterioration , inadvertently and unintentionally!
The learning curve is steep - and never ending......
You are in it for the long haul. Severe ME is not a short term illness. It has no cure, no standard treatment pathway, no guaranteed or known way to physically alleviate the intense, ongoing suffering of the person you care for.
There is little clinical understanding or adequate explanation for the complex multi-system dysfunction that you are faced with. At all times the person is at a high risk of harm from any interaction, let alone from any unmet or poorly met need.
“Caring For ME” is a short pocket book guide, designed to enable you to think more deeply about your role, your own knowledge, your own beliefs and your own particular learning and skills.
It’s the result of decades of struggling to care while still seeking for a path of healing, hope and ultimately love.

Comments

  1. AnonymousApril 4, 2024 at 9:17 AM

    Thank you Greg and Linda for your lived expertise

    ReplyDelete

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