Stonebird is proud to announce the launch of Severe ME: Notes for Carers!
“One of Greg's most important works ...the information here isn't dry or wooden, it lives and breathes.”
Kara Jane Spencer
“With unparalleled imagery and quotations the book describes like a surgeon what it is like to live a life as and with someone who is severely stricken with the devastating disease Myalgic Encephalomyelitis.”
“Psychiatry's shameful involvement in Myalgic Encephalomyelitis.”
A book to inspire, comfort and uplift those who are suffering.
"To say that 'Living in the Heart of Love' is about indescribable suffering would be accurate, but incomplete. It is about much more."
Myalgic Encephalomyelitis is a World Health Organization - classified neurological disease that affects multiple systems of the body, causing severe disability and may lead to death. It is not a psychiatric disorder.
Despite the physical suffering , which is indescribably complex and tormenting, for us it has been a spiritual journey , a continual journey of learning how to cope with the limitations set by the illness and how to be greater than the confines it places upon us both.
What we have discovered is that in order to survive , despite the difficulties, it has been essential to become medically aware, politically aware , self-aware and spiritually aware. It may take years but in order to try and get your needs met, you cannot afford to give your power away to others. Trust has to be earned because opinion is divided and truth is often hidden or obfuscated away. You have to be able to identify and understand your own symptoms, how they impact upon you, what will help you with them, what makes them worse and how to live with the never-ending impact of them. You have to find self belief, you have to fight your corner and be your own advocate or find out who truly understands and is willing to stand with you and fight for you.
A Fact :ME is bigger than AIDS, lung cancer and breast cancer combined. More people have ME than have multiple sclerosis or cystic fibrosis, yet nearly 90% of patients have not been properly diagnosed.
This is an immense journey of the human spirit. This is an immense story of continuing triumph over untold suffering. This is our story and our fight.