Thimblefuls of energy has become an aspirational term; nowadays I scoop with a hollow tooth. And still, and uselessly, I measure myself, my output, my proficiency, take giddy turns from none to all the less, to none again.
I dream of being in a studio, trace walls with sweeping charcoal marks. Take a knife and cut deep, carve until prospect comes to light.
Meanwhile choice lies breathless by the bedside, agency is on the run. Time to find myself a place of gentle, kindly purpose, where sparks and flickers count. Do tiny things, and do them well. For now, I place my bet on words.
Can’t raise my head above a parapet, it’s so heavy. My battleaxe is stuck in my skull. Need a lullaby, a sweet dream.
Instances of can-do are dwindling. Skin is cold and clammy, sticky too, as if I’d rolled in ashes and morning dew, but then I’ve neither bathed nor washed in days. Can’t read more than a few paragraphs – text congeals. Can’t speak for long – mouth clogged with a thousand nestling words. Even periods of listening to the radio – the last vestige – have shortened drastically.
This kind of drudging (yes!), debilitated state of being, mine and that of untold others, bores and absorbs. Not much to describe as far as interesting activities are concerned, no fireworks to report (although there is passion), no adventures (not for lack of impulse), rarely achievements which count in the wider world (somehow ambition survives). Focus is on basic needs (and a wish for wing buds) – a handicap for stirring conversations.
Not all is bad: There are hopes, jokes, fantasies, mangoes for breakfast, and, once in a blue moon, when the sleep authorities accord a greater portion, the pleasure of a brief encounter.
When I am out, doing something I love, I grin as if there’s no tomorrow, and really there isn’t. The breach between now and then is absolute.
I spent my happiest in-the-world-time at a gallery this year, where I joined a group of artists to give an exhibition talk. For a rare instant wanting and being aligned. I cannot remember much (fatigue drags memory under), just know I spoke, with zeal and a kind of burning internal ecstasy.
Any outing takes its toll. Not of the pick-and-choose variety, mind, but with a wagonload of rot and muck. Extreme, frenzied, obliterating fatigue swamps mind and body, as does acute pain: flaring up, shooting about my form, lingering in places – as if head in a clamp or pierced by knitting needles; as if brain pushing against shrinking skull; as if punched in the face, hands as if trodden on, limbs as if bruised from falling; brief rushes in teeth, ears, soles of feet, kidneys, clavicles, ribcage, abdomen, shoulder blades. Days and days of this, then slow and incremental relief. The aftermath is no killjoy though. I was there!
In June. Tonight our work will reappear, changed, the same, in a new environment. If only I could spy, with a sleepy eye. Instead I lie at home, submerged under the swell of tiredness, like an old rusty submarine at the bottom of the sea. Occasionally I raise a rickety periscope, try and catch a glimpse of what I miss. Inconsolably so.
Insomnia just about fells me. Nightly I swallow hope in green and blue, to no avail.
So much to say goodbye to. I grope about for prospect, possibility, mourn formerly able hands. The tiniest gesture could elevate a tired day: I’d thread a strand of hair through a needle’s eye, ready for something; cut a dress from an autumn leaf, its curly stalk making it dance; chart ideas on post-it notes, for better times. My crochet hook spelled c-a-r-p-e d-i-e-m. Bit by bit I drew myself up, nature to nurture to culture.
I’ve never felt more embodied, never less. As capacity and vision wane, I find through writing the last unlittered chamber in the house M.E. built, where illness hollers curses through the door, but cannot enter, overwhelm. Here desire reigns, and I heave myself up again, wring silvery notes from silence, throw swansongs to the wind. Oh, did I mention: pathos is alive and well!
I expend energy by the thimbleful, scooped from a shallow pool, a puddle really. A slow skirt-dance of ripples as I dip in, then back to mirror-stillness.
Pretty, isn’t it, and precious; contrived, controlled; a nice-looking lid on a pot that is close to boiling over. Today I want to burn, cleave, clobber!
I wake, each and every morning, delirious with hunger for an active day. Suggestions in a quickly refuted study, that exercise and CBT (I’ve tried the latter, and much else) can overcome mind-numbing, bone-crushing, all-encompassing fatigue and monstrous pain-levels, make me blister with rage. Positive attitude, anybody? All those I know were industrious, enterprising, socially engaged people and fully in the world before the fall. I used to hike, four, six, eight hours; loved to get up early, roam the streets of London on the way to work. Now I crumble traipsing to the kitchen, spend endless periods supine. Who would want this?
Writing (iPad on belly) sustains me. My output frustrates. I say ‘today’ when it’s taken half a week to pen these lines, minutes at a time. Lives literally collapse under the weight of M.E., meet mostly disregard, and all I do is whisper.
More biomedical research, now! I am straining at the leash. We all are.