Yesterday, Linda in agony, her and me. Our life with Very Severe ME, one of never ending torment.Gently trying to sooth her aching, throbbing, burning feet, which cannot even bear to be touched.
We have learned how to live here in this place, where nothing, NOTHING, is possible.
Linda wrote once:
"I know how to hold on to hope when no hope is there at all,
When you don't know even if you are going to die
because no one can help you
And no one knows.
I know how to grasp for a better moment, believe me.
I know how to be in indescribable agony for decades with no drugs to touch it.
I know how to survive the torture of noise, shutting my muscles down repeatedly, day after day after interminable day, screaming round my head for hours on end.
I know what it feels like to be violated by the horrendous sound and vibration of noise, repeatedly for years on end and be unable to escape, but have to endure it's torture.
I know how to live in blank spaces where no thought is possible, no movement possible, no nice distractions with books or the telephone or films or friends or comfort food to sustain the dullest hours and years of life, no conversation possible, no comprehension possible, no function possible at all.
I know how to keep going every day, to try and break the paralysis that straight- jackets me as soon as I wake
I know how to live with the unbearable pain that pressure and physical contact bring
I know how to cope with my body shaking continuously for hours on end again and again with no drugs, no understanding, no support,no respect, no help.
I know how to live in silence from necessity to survive.
I know how to live with no visitors,no social chit chat, no physical interaction with the outside world,
No family gatherings, no celebrations possible, everything completely and utterly out of reach of physical connection.
I know how to keep living, keep hoping in goodness....."


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