Showing posts from April, 2013

Scandal !! How people with Severe ME are simply ignored.

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 understanding, the amount of friendship you get in is inverse proportion to how ill and how desperate yo…

Cannot bear to hear the word "fatigue" anymore


I simply cannot bear the oblivion

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
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 this pretence of a service
That offers nothing to people with neurol…


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

I cannot


10 Reasons why you should chose to live with Severe ME

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 yourself more.

Linda & Greg Crowhu…

Happy Birthday ?

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 ? No one if you have ME .


Free eBook

Unstoppable Spirit : Contemplations and Prayers for those that Suffer 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.