Whilst my arthritides have been better this year, due to the unusual warmer, drier weather we have experienced, the Myalgic Encephalomyelitis has been its typical pain-in-the-derrière.
Apparently, for the first time I attended the annual choral Saint Nicholas concert on my own two pins rather than in my wheelchair. And I even managed to send Christmas-cards too - and prior to the actual holidays!
But all too often I have been trapped abed, unable to experience Life. I have it fortunate, for although my condition is considered “severe”, I am not in the most severe category.
The worst 25% of severe are: trapped abed always; eyes covered in blind-folds; ears covered in noise-cancelling head-phones; drip-fed; and, unable to be touched.
M.E. is not about being tired all the time. It is not a psychiatric illness as the UK’s psycho-cabal (along with their colleagues in Holland & Denmark) would have us believe. It is a multi-systemic, neurological disease (recognised for decades as such by the WHO, currently under ICD-10 G93.3). There are 106 conditions on my health spreadsheet; 104 are connected with Myalgic Encephalomyelitis. Only three are related to sleep. Under the WHO’s ICD-10 I have conditions under sections I, IV, V, VI, VII, VIII, IX, X, XI, XII, XIII, XVIII & XIX.
[Image description: woman in black, sitting on a park-bench, looking out at a frozen landscape. It reads:
HAVING M.E. IS LIKE SITTING ALONE ON A BENCH WATCHING AS YOUR LIFE PASSES YOU BY & WAITING TO BE ASKED TO PARTICIPATE AGAIN. ]
For me it is the slow-death of Life being sucked away long before my time is due. It is being in constant - medically unmanageable - pain. Sometimes the pain-levels are acute and I am left to suffer. It is not knowing from one day to the next what one will be capable of doing. It is the neglect by the medical establishment of patients and the disease itself. The MRC & the NHS invest almost nothing, despite there being some 250,000 people with M.E. (#pwME) in the UK. It is the failure of the MSM to investigate, nor even to accurately report stories, failing almost invariably to check the facts.
This is my M.E.