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Showing posts from July, 2016

The mysterious Chronic Fatigue Syndrome

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I have just come across this supremely inspiring post by the late Thomas Hennessy :

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1005c&L=co-cure&F=&S=&P=20184

Here is a short extract

" It was Byron who told me about Florence Nightingale. When i
researched the history of our little Ms. Flo, she sounded like MANY of the nurses i have met with M.E. over the years. When i found out that her
birthday was in the springtime in the northern hemisphere, and early autumn
in the southern hemisphere, I said, "We have found our day".


Dominated by Illness

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Who I want to be and could be if I did not have a very severe, neglected and underinvestigated illness that dominates my whole life:



Kind, thoughtful, loving, interested, excited, concerned, inclusive, happy, laughing, beautiful, pretty, generous, tender, listening, empathic, engaged, funny, passionate, sharing, creative, together.


Who I am :
ParalysedMuscles screamingTremblingShakingIrritatedUnable to articulateUnable to shareUnable to connectUnable to explainUnable to listen, convey, debate, have dialogue, too numb , too hurting, frustrated, stultified, immobilised, shut down, crushed by sound, tortured by vibration, hurt by physical contactBlanked out by other people's livesIsolatedUpsetUnintentionally unkindShoutingUnableSorry.

You cannot pretend

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I wear a homemade black and white bead bracelet, in Massai culture the black beads symbolise struggle, the white beads purity. 
Almost a quarter of a century of caring have taught me that you can’t pretend, your motives have to be true, your values strong - to survive, to speak the truth with integrity and power, to grow in relationship and being.
The struggle meanwhile is mostly hidden. Very few know, even less care. 
My wife is profoundly physically ill, her agonising life is lived unseen, out of sight, out of mind. She described it once as “below Maslow” :
“People live in the world. I, however, live life below the starting point for access. There is no word for this space. I call it 'below Maslow'. Where hopes and dreams are just that. They never come to fruition. They are shrouded in impossibility. Every lost moment takes me further from the world. Every holiday missed, every visit denied, every activity put on hold, Every hope of interaction, feeling, connection, stunted and then rip…

To the ME Community on Facebook : an enormous thank you !!!

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I was looking at a photo yesterday; you would not recognize Linda now, she is so ill, tortured and tormented. With Very Severe ME your world becomes narrower and narrower.

You almost get used to disappearing, by necessity,  layer by later from the world. Our world is minuscule. 

You are so used to no one noticing you are gone,  that it came as a extraordinary  shock, to us both, to receive, quite out of the blue,  a Greeting Card signed by 160 folk from all around the world, sending us such love !

Time and again I have been bowled over by the care, compassion, understanding and love of the ME Community on Facebook, but this is beyond anything I have ever known or experienced. 


What an affirmation, how uplifting, how desperately needed that card is !

What a kindness, what a beautiful act of reaching out to the most ill and isolated, what a display of love and concern in action : not just talking about doing something, but making it happen.

Sadly Facebook is yet something else we have had to …

The need for another Chilcot Inquiry

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I was  tired yesterday, my arms too heavy ; it is  stress. Blood pressure high.  Every moment is uniquely stressful when your wife is this severely ill for decades on end  and there is little reason for hope. As  the former Prime Minister was named I know only too well  there is much more than Iraq on his hands, but I doubt there will be another Chilcot.

As I have written here, New Labour's hands are soaked red with the blood of the sick and disabled.

Substitute "New Right" for New Labour, the Coalition and   our current Conservative administration, whose common  destructive neoliberal agenda has  destroyed everything,  has  created a global laughing stock out of Britain,  has unleashed the hate and racism demons upon the street, all upon   the  backs of the most vulnerable in society, who have consistently been scapegoated in order to advance the shrinking of the state .
It was New Labour that introduced the the Work Capability Assessment, it was New Labour that introduc…

Roses in the Rain

Sometimes I look at you and my heart would break with love
I touch your tender arm
it is so beautiful and pure
I have never told you how exquiste it is
but tragically obscure
we sit here in the garden
the roses wet with rain

If only there was something I could do to make you well
it is a source of great pain
that you are still so ill
after all this time
now and then
we sit in the garden
and I hold you gently in the rain.

You cry and dog licks your tears
so unable, so fractured, so far from reality
you are falling into paralysis
and I can't save you
out here in the garden
slumped
in the rain.

Miraculoulsy you still shine with love
as you gather rose petals
and the peace I know
is the peace of God
my heart would burst with joy
as you hold them to your eyes
all wet in the rain

Turn, turn, turn

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Yesterday I brought four rose plants; today, after much
weeding and clearing out, they will be planted. One is an old rose dating from my wife's childhood. How soaked in memories is a garden.

These days I am lost in it,  this beautiful, English country cottage,  humming, buzzing, chirping  garden,   a joyous summer wilderness, winding,  without sense or direction,  all over the place, it's uncharted, sweet scented herbaceous borders, its tangled  daisies, veronica, sweet peas,  hebe, all kinds of leaves, vines and the low-hanging  bramley apple tree on which you knock your hat off,   terribly overgrown; this rekindled  passion  of my youth.

Before coming off Facebook  I read a moving account of how it frees you to be much  more  present in the physical world, so that has proved to be; though I miss the  love there, the concern and affirmation.

Turn, turn, turn, there is a season and a time for activism, but not now.

There has be another , a better way, to bring about change, …