The best possible Xmas-break to everyone, and warm greetings to those who are housebound, bed-bound, or simply all-round struggling; to just-at-this-moment hopeless folk; for-crying-out-loud-but-never-saying-much lonely folk; serene and anxious folk; juggling, striving, angry folk; mournful, quietly aspiring, boisterously desirous folk. Contented or happy too. Let no one be excluded.
May your day be filled with care, joy, and – if that’s what you crave – festive connection.
Hospital, for xyz test. First patient, quiet affair. After, quick dip into coffee shop. Rudolph’s clogged jelly nose quivers on chocolate log. Take a jiggle over a jingle any time! On way home first surge of pain, sudden, as if flicked by a switch. Next few hours, midst deepening fatigue, it fans out and intensifies, until verily, verily, if you could speak you’d swear on King Lear’s life that you crashed down those castle stairs and hit every cobblestone, turret to potter’s field. Each bone clangs to a different tune. Soon you’re all but brittled out, a fractured creature, with gigantic, useless claws (they hurt till last). Something Giacometti might have cast in bronze, cool and cruel.
Abjection. No inner sense of ‘us’, no reach, no touch. PEM doesn’t sound like much.
Credible year, the sweet with the rough. Downward slope chez moi, but:
Heard (and spoke) poetry twice; lay in grass by last unshorn lavender field. Talked more, picked up the tab with huffs and puffs. Horrified by politics of separation. What? Who? Forgone collusion. Grateful for #MeToo, #BlackLivesMatter, intersectionality. Time for self-examination.
Summer, garden birds fled building noise; light impaled on dirty window pane. Wanderer squatted in cherry tree, her antlers tickle when she kisses me. Oh, let me swoon a little! Saw my mother – mutual solicitude revived. No books, although bought a few; no gazing up at sequined sky. I fall long before night.
Treat of purple trouser suit. Next year will droop in style. Winter now. If I stay still, why doesn’t time?
The failure of Norway’s Rituximab trial is hard to process. Hope is back in the cold room, carcass stripped. Meagre enough to start with, it owes the scant flesh on its bones to the slog of tireless advocates. And now that Unrest is out, mainstream media are taking note. Attitudes may change. Drug treatment options are years away though, and, due to the widely discredited long-term focus on psychological causes, already decades late.
Let me reiterate: Worldwide around 17 million people, adults and children, suffer from M.E. and lead much diminished lives. More than four million lie confined in darkened rooms because they have an illness which has long lacked the boon of biomedical research. If we arranged their mattresses in file they’d make a bluish vein from Britain to Siberia. When a cure is finally found we’ll have the perfect somersault lane.
The Rituximab trial has failed. I am gutted. And so very very tired.
Feeling my way towards writing again. Better brief than not.
Hope in Midlife with a Chronic Illness
Young people, arts, kindness and being an autism parent
insights from the invisible world of energy limiting chronic illness
Insights from the intersection of patient & pharmacist
supinesublime 