Stonebird

What can I say that will express this illness inside of me,  so huge it overwhelms all of me on every level? What can I say to make it all right again? How can I find a pathway to restore me? Is it even possible? I am too blank in the head Too empty of thought Too weak in my hands Too uncoordinated in my movement Too cut off from my motor control Too dark in my vision Too uncontrolled in my eye muscles To look at a page And hold a pen And think anything coherent Or new Or accurate Or discerning enough Then write word after word in a straight line on a page I am too breathless from my swollen stomach pushing against my diaphragm Too physically numb In too much pain in too many parts of me My head My face My lips My tongue My gums My teeth My eyes My eyebrows My nose My ears My skin My muscles My legs My calves My thighs My feet My soles My toes My chest My arms My hands My fingers My back ...

Dear Norman Lamb, 1. Please can you explain to us why Myalgic Encephalomyelitis is still not treated in the UK as a neurological disease? 2. Why there is no biomedical treatment pathway on the NHS for people with Myalgic Encephalomyelitis? 3. Why there is no accurate training programme within the NHS to make sure that all professionals from paramedics, through to nurses, orderlies and to doctors and consultants have an accurate medical picture of the disease and know how to provide safe treatment and procedures to people with ME? 4. Why is there no hospital or GP provision for the safe passage of people with ME who suffer from noise, light, chemical sensitivity and need separate waiting areas and room to lie down and require longer amounts of time for procedures and investigations and appointments due to the nature of their illness and disability ? 5. Why there is no system of reaching the house and bed bound and treating the most severely affected at home? ...

Good luck, prayers and love to us all this week !

I cannot even articulate my distress About the neglect The denial The mistreatment and the abandonment That I feel About my illness. I cannot even explain The seriousness of this disease The severity The torment The agony in every moment I experience I cannot even express  What it is like to not know what to do to heal myself The uncertainty The lack of investigation The lack of understanding  The danger that puts my health in Every moment of every day I cannot begin to convey The horrendous physical experience Of being continually pushed into deep  Total paralysis By the slightest wrong noise  Not just once or twice But continually every day I cannot describe The feeling that overwhelms me When my muscles lose solidity Scream Torment Tremble Shake Crash Collapse Stop working Stop holding me  Stop moving me Stop feeling Intensify their pain Become flaccid and cold Numbing my body and my thoughts with them I cannot seem ...