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Showing posts from April, 2014

If Only They Could See

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If only they could seeWhat our life is like
Moment by momentThe struggleThe tormentThe not knowing what to doThe not knowing how to get throughThe fearThe uncertaintyThe severity of illnessThe torture of everything normalCausing hurtPhysical harmTearsThe blankness of cognitive dysfunctionThe sheer emptiness of mind The horrendous never ending ongoing continuum of paralysis and near paralysis and paralysis againOf numbnessOf muscle collapseOf intense overheating and sweatingYet all the time with frozen feet and hands and noseThe impact of noise and vibrationNot just inconvenientNot just irritatingNot just painfulNot just tormentingNot just paralysingNot just numbing body and mindNot just thought stoppingNot just completely unutterably incapacitatingBut literally fragmentingDeconstructingtortureThat rolls

ME Cover-Up by Linda Crowhurst

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IN  THE PAST TWENTY years since I have had it, Myalgic Encephalomyelitis has been covered up so that  no one can really say with absolute certainty what it is anymore or who actually has it, what it means or how to help people with  it, because there are so many different meanings and interpretations of “ME”, including misdiagnoses.

It is a travesty. A person with genuine ME, nowadays,  will most likely have the label CFS attached to their illness, be treated as if there illness is one of many poorly defined fatigue conditions and pushed down the NHS pychosocial pathway : "Oh yes, you feel ill" ," You feel as if you paralysed", "You just need reassurance"...."It’s nothing serious"...etc. if you are considered to be mildly or moderately affected you will be offered Cognitive Behaviour Therapy to change your thought patterns and Graded exercise for deconditioned muscles, ignoring your physical disease.

When I first became ill I was treated very badl…

Love alone connects

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The energy of Good Friday always feels strangely silent and empty. God is entering into the pain and torment of the world so fully that He seems more silent, less present, more removed, even gone.
This is as it is in true suffering. You are removed by degrees from the world till the torture of your physical reality overwhelms and annihilates you. Empties you of everything, it seems, except the pain, the exquisite moment of unutterable torture that defies description yet in which you are absolutely caught.
Communication is no longer about dialogue. Words seem empty here. The person can no longer speak and tell of their experience.
Few are able to bear the pain of watching, waiting, being, with the person who suffers to the end, especially if that pain is drawn out over years and years. This is no longer a place of comfort, yet it is a place of the heart. It is a place where love is required, where love alone connects and stays with that person, where that person also can still connect …

The Poverty of Severe ME

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The poverty entered into here is a stark and complete poverty. 

It is a poverty on all levels: poverty of wealth - unable to earn money you rely on benefits which are not easily gained, or easily kept , neither do they provide for more than the minimum of life.

Poverty of pride, you have to sacrifice all self esteem as you search more and more for charitable grants to meet your basic needs, crushed by rising prices and dwindling funds

Poverty of family, you become alienated from their normal lives ,  they  shut you out, they get on with normality rather than enter into the path of suffering you endure moment by moment, too careless of your feelings, too busy in their own lives, too angry with you for not being who they want and expect you to be

Poverty of neighbour, you are unable to maintain contact, reciprocate favours, join in social events you become isolated even from those in closest proximity.

Poverty of friendship, people simply get fed up with your lack of presence, with the diffi…