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Showing posts from June, 2014

It just would not be so...

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My life

Is a living torment
I wish it were not so
I wish I could say
That everything I had tried to do to get well had helped me
But it would not be true
I wish I could say
That every one who tried to help me had done so
But it would not be true
I wish I could say that everyone I trusted had been worthy of it
But it would not be so
I wish I could say I had not been betrayed
But it would not be so
I wish I could say I had not been let down
But it would not be so
I wish I could say I had not been mistreated
But it would not be so
I wish I could say I had not been misrepresented
But it would not be so
I wish I could say I had not been ignored
But it would not be so
I wish I could say that I feel safe
But it would not be so 
I wish I could say that all the myriad things we have done to raise genuine awareness of ME had been effective
But it would not be so
I wish I could say that there is a safe medical pathway for my illness
But it would not be so
I wish, how I wish, that I could say that people understand the dif…

PIP : we were right !

No surprise to read in all the papers yesterday that PIP is such a fiasco !! If only the Government had conducted a proper consultation and actually taken heed of the responses they received , such as the one from the 25% Group and Stonebird (May 2012), which expressed concern that the true intention was primarily to cut costs rather than meet need, that the Governments's interpretation of disability was far too simplistic and that many claimants will lose money as a result. We have been proven right !http://carersfight.blogspot.co.uk/2012/05/25-group-stonebird-dwp-personal.html

The state of unutterable indescribable agony

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When I am in the chaos of unutterable indescribable agony , the power of the physical experience is huge, vast and all encompassing. I cannot bear the moment I am in. 

There is no other moment than this one and it seems to spread out to all eternity in an eternal moment of excruciating torture.

I don’t really have the words to describe the experience. It is more than torment, more than torture, more than indescribable, more than intolerable, more than unacceptable, more than completely unbearable. It is screamingly hostile and negating.

It is barbaric in its cruelty. It is exquisitely diminishing. It is almost completely incomprehensible in its agony it is so vast, so punishing, so pure, so bleak, so empty of life and full of sensations that is beyond endurance.

Such is the nature of that place that all awareness can be blocked except for the pain itself that pierces every cell and every space between cells, every existing fiber of being is caught up in the torturing pain.

All focus must b…

Movement Senstivity

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Touch Sensitivity

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Light Sensitivity

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Pentecost.

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Holy Way coming soon. Twenty years of Linda's suffering, my struggle has taught me a great deal, especially about the meaning of "religion" - it has VERY LITTLE to do with going to Church; the Church has abandoned us, but, in the true sense of the term, everything to do with people coming together. I have been working for weeks on building a brand new website to reflect all our learning,the insights gained from our long journey deep into the wasteland. To me, it is like building a cathedral, striving after beauty, inspiration, craftsmanship in every single element. Sadly there is much yet to do , so I cannot launch it today, Pentecost, as I had hoped for. What can I possibly say of the power of the Holy Spirit ? Everything, for it is the light that radiates out from Linda's entire being, lights up her face, sparkles in her eyes, inspires me ever onwards, fills us both with an extraordinary joy, leads us out of despair, empowers us to always seek the light, especially…

Let's see what we can do together. An interview with Rob Wijbenga

Sorry : the sound quality of this important interview  recorded on the beach is not very good. Here is a transcript :

Sorry : the sound quality of this important interview recorded on the beach is not very good. Here is a transcript :

Stonebird (SB) : A warm welcome to Norfolk Rob

Rob Wijbenga (RW) : Thank you, it has been a pleasure to meet you Greg a great pleasure.

SB : It's wonderful you came all the way up. So how many interviews have you done now Rob with various clinicians ? Maybe you would like to say a little bit about this programme you have been awarded funding for, to go and interview clinicians.

RW : I haven't done, actually, a lot of interviews, as you know within our programme "Science to Patients" we are inviting scientists , researchers, to talk 5 to 10 minutes, on topics which are living within the community, the ME community, so they are based on questions from patients.

Just now Greg asked me to talk a bit about my experiences with scientists , confront…