Stonebird

If only they could see What our life is like Moment by moment The struggle The torment The not knowing what to do The not knowing how to get through The fear The uncertainty The severity of illness The torture of everything normal Causing hurt Physical harm Tears The blankness of cognitive dysfunction The sheer emptiness of mind The horrendous never ending ongoing continuum of paralysis and near paralysis and paralysis again Of numbness Of muscle collapse Of intense overheating and sweating Yet all the time with frozen feet and hands and nose The impact of noise and vibration Not just inconvenient Not just irritating Not just painful Not just tormenting Not just paralysing Not just numbing body and mind Not just thought stopping Not just completely unutterably incapacitating But literally fragmenting Deconstructing torture That rolls over and over again from moment to moment Never knowing when I will drop Fa

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 ver

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

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 prese