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The mysterious Chronic Fatigue Syndrome

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

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

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 :

  • Paralysed
  • Muscles screaming
  • Trembling
  • Shaking
  • Irritated
  • Unable to articulate
  • Unable to share
  • Unable to connect
  • Unable to explain
  • Unable to listen, convey, debate, have dialogue, too numb , too hurting, frustrated, stultified, immobilised, shut down, crushed by sound, tortured by vibration, hurt by physical contact
  • Blanked out by other people's lives
  • Isolated
  • Upset
  • Unintentionally unkind
  • Shouting
  • Unable
  • Sorry.

You cannot pretend

 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 ripped away
By torment and torturing symptoms....
What is the word beyond torture?
What is the word beyond torment?
What is the word beyond unbearable?
What is the word beyond indescribable?
And who in the ordinary world, going about their daily busy lives,
finds us more than an inconvenience and a disappointment?
Who can ever understand the broken places I exist in
Harmed by people, harmed by virtually everything.
Who really gives a fig?
They would have to give up too much”

If my wife, in great suffering, exists in a pit, her multiple chemical sensitivity (MCS), her hyper noise sensitivity, her light, touch, sound and movement sensitivities combine to make it as deep as the seventh circle of Hell; which I expressed recently in a song :

I was just sitting with my wife in the garden, it is a beautiful day, the joy of blossom and the first roses. A risky endeavour with MCS and profound Hypersensitivities. Suddenly a loud metallic banging from somewhere. Now she lies paralysed, her whole day ruined, the impact of that clanging banging will last for hours; all her other hypersensitivities are heightened now, to nightmare proportions.

How can I describe the loss to you ? I feel it above all in my heart.

The garden, so beautiful, is a place of humongous risk - the neighbour’s washing, foul with fabric-conditioner, renders it toxic, as does the lingering smell of perfume, the daily crunch of gravel is enough to make you scream in pain, a friendly hand, reaching over the garden gate, to stroke the dog, is a disaster, if it is soaked in aftershave.

So your isolation becomes more and more acute; the world too toxic and alien to safely exist in.

The care too, becomes separated from the ordinary in their effort to be with the person and protect them from harm.

Yesterday I missed another important family gathering. Apart from the impossibility of leaving someone so ill, so profoundly disabled that it is beyond imagining, for hours on end to get there and back, there is the risk of infection, the simple cold becomes a danger in these circumstances, to both of us and the harmful impact of entering into the “normal world”, where folk use polish, washing powder, perfumes and deodorants: returning home covered in the stuff, the car stinking for ages, is simply not a safe option.

So today is a beautiful day, yet it has turned into a bad day, extreme irritation, hypersensitivity, torment, frustration.

That is the struggle. But there are also the white beads.

How can you talk about purity on a day like this? How can you see any growth when you are completely immersed in a pain-filled tormented world, completely separated from the beauty and peace all around you? Maybe all you can hope to do is survive.

Maybe you cannot talk about growth on such a day, but one thing we have learned is that in the deepest most difficult places, that is where you encounter truth, that it is precisely here, you find the way.

Seeking peace, healing, wholeness, wisdom in the stillness, the miracle is that we will get through this day.

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

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 let go of, in our life. At this level of illness there is very little one can cope with. Betty Dowsett advised us years ago that the most important thing is to reduce any stress as much as possible. We all know how  Facebook brings it own stresses.

With all my heart, on behalf of us both - and Camy the Corgi, I say a huge thank you to Leela Play for organizing the Card and for everyone who signed it; we read each message of support, concern and love out.  

One hundred and sixty  people expressing their concern, thanking us for what we have done, wishing us well;  the experience of receiving and reading the card has been so immense, I don't think it has yet fully sunk in, how much people care. 

It makes such an enormous difference.

Bless you all. 

With ALL our love,

Greg and Linda xxxxxxx 

The need for another Chilcot Inquiry

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 introduced the deathly Biopsychosocial Approach, the denial that illness and disability exists, except in your head, it was New Labour that first labelled the sick and disabled as “malingerers ”.

Their  attack has been a full-on assault,  the script  has been comprehensively rewritten  so that the needy are no longer full human beings with just as much right to a life as anyone else, but parasites, scroungers, burdens on the state, barely even human.

What  does the future hold for the poor  in this ugly  culture ?

People with ME particularly, have paid a dreadful price:the biopsychosocial approach was pioneered upon them;  to this day their  physical disease is denied. My wife's suffering and that of millions others  is never ending, while they are treated with disdain and left to die, horribly.

I have tried for almost 25 years to fight back. But yesterday showed how impossible that is through conventional channels.  For truth has become whatever anyone believes or contrives it to be, that , to me, was the basis of Blair's unrepentant  post-Chilcot stance, so in keeping with his  toxic legacy of spin;  the one that has just resulted in Brexit.

The one that has allowed psychiatry, hand-in-hand with the multi-billion dollar corporate medical insurance industry s unfettered access to  set  the UK's "welfare busting"  social policy and exert huge  influence over the press, TV and radio ,

What chance does a lone carer stand ?

Look around, won't you, there's a war going on.

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
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

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, than the hopelessly confused situation at present !

25 years of struggle and where has it got me ?

So alone here and my wife desperately sick and disabled.

Oh yes, they are going to hear from me, make no mistake, I WILL  go down fighting.

But right now, there are these roses to plant.