Stonebird

I have not posted anything in Stonebird for ages - that is because I am too busy trying, somehow to cope, to survive, Linda is so ill. It is fair to say, I think, that right  now  Linda and I are being pushed way beyond the  limits of human endurance. Can you imagine that ? If you do not have direct experience of Severe ME, no you probably can't  I have just received this heartbreaking,  desperate letter from a fellow sufferer - who has kindly allowed me to publish it, names removed,  to highlight the plight of  people with Severe ME, the scandal that the most ill are given NOTHING !!! Far too ill to accept help, far too ill  to access the likes of Facebook, as this mother says - what do you do ? How do you survive the daily torture and  torment that is this awful illness ? Going through hell here, sadly,  I have stumbled upon the following equation - the amount of help, the amount of...

caused deliberately by the psychiatric  lobby The misrepresentation The misinterpretation The mispresentstion The  mistreatment The denial The arrogance The foolishness The ignorance The negation The pretence The vested interests The careers The ideology The fantasy The imagination The cruelty The complicity The compromise The deceit The laziness The crass institutionalised destruction of my life and thousands of others. And why? I simply do not understand why my reality And the sheer  physical suffering Of the most severely affected Neurologically ill Continues to be downplayed Passed over Left Deleted From adequate medical  investigation Proper medical respect Interested and experienced biomedical  practitioners Accurate interpretation And a proper medical health service With ongoing monitoring and medical support Why is this not happening When the physical agony of my existence And so many others Is real and intolerable? How can they keep getting away with ...

These are just a few of the things my   wife who has Very Severe ME  cannot do today- or any day.

1 you are a beautiful person 2 your life is precious 3 giving in and choosing death means the culture of death and denial wins 4 there is always  hope of a better moment 5 there is always hope of a biomedical breakthrough 6 it is not your fault that you are ill and you should not blame  and punish yourself  because you are struggling to cope 7 suicide and euthanasia cause massive harm  in the impact on other people emotionally , mentally, even lead to more suicide and death 8 there is always something you can change however small that might make a difference 9 the illness is huge but you are bigger than it 10 you can rethink the way you are living  and make different positive choices to accommodate your difficult reality, even small things can make a big difference. 11 feeling you want to kill yourself is not the same as actually doing it. 12 you can be kinder to yourself and validate how amazing you are to be living in such difficult circumstances, not hurt ...

In agony, alone, unable to cope with anything, even me, she is in so much torment : her body exploding with sensations and symptoms , too much to bear. My heart breaking - today is Linda, my wife's birthday. With Very Severe ME, you get to the stage where you are too ill to have a birthday.  And then what...?

Who will help me ? Stonebird  Poster (Click to view)

Unstoppable Spirit : Contemplations and Prayers for those that Suffer ..now available - with love, as a FREE eBook . If you like it, please do leave a comment on Lulu . Tell people about it. I'd love to hear any feedback you may have. http://www.lulu.com/content/e-book/unstoppable-spirit/13748403