Chapter 1. About Waking
M.E. descriptors; dessicated, drained, deleted, detritus, debt.
The fan is on and the window is wide and the night heat turns into morning chills. The sweat on my chest runs like a weir. My boxers are sodden, clingy. I contract like a dead bug, cringing at the day of it as the the world buffers in.
There’s an earworm inside the tinnitus. Common People (Pulp, 1995, Island Records). A repeat offender. Other repeat offenders include the theme from Only Fools and Horses, A New England, and Material Girl.
I grab my phone and clutch it like you would a passport and sit-lay, head all at sea. Stuck, sick, turtled.
People think ME/CFS is all tired and slow and it is, but its also an adrenalin emergency three seconds after waking. Foot down but out of gear. Thrashing nothing to nowhere. My fatigue has mass like the moon and my mind is full of walls.
It is a relief and sadness sandwich that there’s nowhere I have to be.
Edward (Turkish angora, garden rescue) is asleep next to me and there’s coffee waiting in a travel mug Katinka (mine, wife, awesome) left before her work. I force thoughts of water (mad for it at night but tasting thin of a morning) and pills (dull blimps of maintenance) through brain fog that’s like a sand storm. I picture them as masked riders on Arab chargers. Picture them happening. This picturing is a necessary technique to function sans flow.
The water, the pills, the coffee; this takes all of me. You see, without flow I do things manually. People should know this. Illness destroys flow and it irritates the shit out of me, this forced and jagged stumble.
I click off the fan with the remote from the carpet and the coffee? Well hot is a flavour now.
Next I picture showering.
It is with effort pretty much Herculean that I unlock my legs and unturtle myself. The knee pain is a sign of life this deep in and I relish its electric fire.
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Chapter 2. About Bathroom
More descriptors; haunted, hungover, hologram, hurts, hobbled.
In the bathroom (light kept off) I know I don’t have it in me to shower. Such complexity of switches and actions. Its like it is rocket science. Plans do this; shrink with proximity.
Shame. A shower blast is a wet reset. And all the flowing water, well its good for thinking in.
I piss (sitting) and the piss falls out of me. Only way to describe it. I stay sitting for minutes. Waiting in nowhere and wondering why I feel so fast. The toilet flush is loud as Niagara Falls. The bathroom door is both in my face and miles away.
Now in lieu of a shower and in aid of hygiene I start to wipe myself down with a jumbo wet wipe (like some terrible giant baby). It becomes quickly half-hearted. One armpit. Bit of neck. Balls. Dabbing myself with a tease of the essence of life.
Now in general I have been trying to remember to use my non-dominant hand to brush my teeth, for brain training. And to balance on alternating legs during, for exercise. Nothing has seemed more like capital B bullshit this morning.
I bury my face in a towel (thinking of Douglas Adams) and do not look in the mirror at all.
I suck it up. I lock it down. I breath manually.
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Chapter 3. About Wardrobe
More descriptors; ill, just so ill, injured, isolated, inured.
Peeping round the bedroom curtains I say Hello World and the street replies quietly with its English bungalow thereness.
Now, the doing here more important than good results, I straighten the bed in an effort at order. The overstimulating clutter tamed some as I pretend control. And it is all clunky and desperate and forced. Time jumps like frames are missing. A slo-mo rush. Chores in syrup. Suck it up. Edward observing from a pillow.
I text Katinka (wife, awesome, mine). Getting up slow I say. Miss you I say. Love you most I say. 8.00 AM.
Listen, I done my time in the shabby chic of day ‘jamas but sickness takes your identity away, takes YOU away. Dressing it a step to regain it. Or the illusion. Same thing – whatever. Lock it down.
As a workaround to the awful indecision I always aim to wear just two colours (accepting no more than three) and no checks, camo, logos, stripes. They are clutter and beget sensory overload. This technique cuts down options and facilitates more efficient wardrobe time. Today its soft worn blues. Elasticated waistband? Duh.
Now you might be thinking, well this man doesn’t sound ill, just weird and dramatic. So remember this is a mash-up of OK days to communicate the sickness. A best-of with studio overdubs. You rather this was fifty pages of ellipsis? Now that would be a fine representation of the illness…
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Chapter 4. About Outside
Descriptors; MIA, margin, monster, nothing, nowhere, nada, necro.
Edward (cat, white, possible PTSD) is staring at me, his face a blend of sweet kitten and threat. I follow him to his bowl (ignored) and the back door (cat flap ignored) and I let him out. I am Edwards doorman. He goes to lie in his favourite dirt. He glows in the sun. I can’t look at him. I sit on the step.
Outside it smells of everything and it is wonderful.
Denim blue sky and hysterically green lawn. Daisies, trees, birds. Really wonderful.
Then the colours scream and the details complicate and rush me; I am a raw nerve, a hangover in rush hour. Another dab of a tease of the essence of life.
I retreat into the dim kitchen, sit on a kitchen stool, then the floor; stool was bullshit. Tinnitus ring is a roar (common people like you). Tunnel vision. Stomach lurching like a drunk in a swamp. Raw nerve to wet sandbag in seconds.
I think ‘Ford waits on the kitchen floor for lights and pain and confusion to unknot’. And it slowly does, as much as it can. ‘Ford sits lino-locked, grateful for the dim.’ (Third person is a coping technique to give me distance.)
‘Ford is terminally stale but someone’s not having that and has hitched him to a stack of lithium batteries for the foreseeable.’
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Chapter 5. About Chores
Descriptors: ostracised, onion, onus, punished, prison.
Now I could put a wash on while I’m down here on the kitchen floor but looking at the clunky flow chart of it all I am very unable to commit. I side-step the colourful cotton chaos and attendant anxiety, leaving it dormant and down-low festering in the washing basket.
And sitting here I am pathetically grateful to my last-night self for manning up and doing dishes. You would not believe how much that helps.
Another coping technique is to do prep, like tidying the dishes instead of washing them up. Like getting clothes out of the next day (two colours). Like having the paper and pencils ready by the afternoon chair. It is well spent oomph.
Currently unable to chill enough to plan my actions I go random – in what feels like a whirlwind (but looks more like a fit) I am up and off – stacking remotes on the coffee table in the living room, lining up trainers and boots in the hall, straightening the coats and jackets on their hooks, moving stuff two inches right, one inch back…
…then its all eye floaters and screaming white noise and there is a turning off inside me leaving an intensely uncomfortable quiet. Dysfunction coming down like a steel hood. Pain rises from abdomen and spreads like an opening wing. I sink to the carpet in the hallway. Activity uploading its consequence.
…common people like me…
And I wait.
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Chapter 6. About Essential Work
Descriptors: shaky, shocked, scrapheap, spent, sleuth, sandwich.
Vape mod, coffee, notebook, diary, phone, laptop, coffee, cold water, get lined up on the desk (square and neat). Then I ignore it all and recline the office chair all the way back flat and stretch there glad I ‘dressed’ and ‘tidied’ and now ‘ready’ to ‘write’. Only minimal sun makes it through the blinds.
‘Ford prepares for essential work. Ford has the time, fingers, and keyboard and he wont kick that in the teeth.’
This is good, for me. OK, but stop now. Stay stopped. But I am buzzing with wire and fuzz (hurtling in place) and relaxing is not possible. Never is. Just inaction. So I inaction and listen to bird song from a meditation app.
And despair comes in with the bird song. I used to cycle, work, run, earn. I had plans, first time in my life I had plans. Evening classes. Photographing the city poetry scene. A BMX to restore. Paris. Just so much rust and dust now. And I’d had stories published, won a prize. Now I only write short poems. Eight lines, twelve sometimes (anything longer
becomes untenable; if you are reading this a minor miracle has occurred).
Collecting metaphorical dust in the hard drives darkness are abandoned writings (I don’t know if I have accepted them as abandoned, even after a decade, I don’t know how to know…).
A never to be pile of what once was.
Still this is essential work, these short poems. Its doing what I can, when I can, and what’s wrong with that? When wasn’t it all an uphill battle?
Lock it down. Suck it up.
Well I can’t take any more birds after fourteen minutes and I re-jig the chair. At the desk (like a regular Joe). I open one of 358 draft poem files and look at it, sipping coffee, puffing faux smoke.
Now I love music, its magic, but so often now it sounds of tin. So I went ambient (your Eno’s et al) but it makes me spacey now, drifting away, falling off the world. Don’t need that.
Acoustic stuff, low-fi stuff, organic, is the key.
Springsteen’s Nebraska is in the player and for all the times I have heard it, all the lyrics I can remember are ‘chicken man’.
I put it on very low.
With more Herculean effort I tame the raging buzz fuzz in my noggin and look at what I written, look at it, stare it down, see if it punches, see if has the right stuff, any stuff, see what it might need to make it proper…but suddenly I need a shit.
So I scroll on my phone in there for miles. I am reminded that memes no longer apply to me. I am outside regular experience. A backwater offshoot from the herd. Edward (arch manipulator) comes in, squeaks at the shadows, nips my shins and only lets up when I half rise like I have finished. Off he scurries to his bowl. Waiting for me to observe him eat, watch his back.
When I come out he’s by his bowl, looking up with orphan eyes. I stand and watch his back. He eats. I am Edwards safety butler.
At the desk I think through the walls of cement and fog by pretending my thoughts are lasers. I make my fingers (like icicles) type. I draw out the essence of a thing I wrote about a man in a film. It is OK. I caught what I wanted to catch. If Homer can write about Achilles I can write about Gerard Butler.
I post it online. Report filed. Another dab with a tease of the essence of life. The mildest satisfaction oozes weakly through the dirty safety glass in my mind.
Katinka (mine, awesome, wife) rings from work. I hear her voice, the bustle of the world in the background. I become briefly grounded, a person interacting. Like waking up a second time. Never under estimate the power of human interaction and love.
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Chapter 7. About Brunch
Descriptors: traumatised, tremulous, temazepam, wounded, wrong, vacuum.
Imagine my relief to remember there’s a sandwich in the fridge with ham and lettuce and cucumber in that my wife put together yesterday for me.
I recognise how pathetic it may sound to voice such base elation but you should walk a mile in my shoes. That’s an ME joke; I cant walk a mile in them either. (I will never wear out any shoes again and I don’t know how to feel about that.)
I feed on the bed. That’s the best way to describe it. Zoo time. A book open in front of me (Patches Of Fire, Albert French) and I read the same half page four times. It is not going in.
Its like I died but still got to do shit. How can things that take so much effort mean so very little?
And that’s it. That’s a morning.
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Chapter 8. About the Nap
Descriptors; bullshit, bollocks, brassic, burden, benevolent.
To be honest the book is a comfort blanket, a token to hold. Because, man did I used to read! Edward is asleep on the bed so I slide under the covers carefully. (Thou shalt never disturb a slumbering Edward). I stretch out and I listen as a meditation. The traffic sounding warm and reassuring. Birds. Distant drills. Edwards tiny snores.
I am not ‘tired’ per se, more ruined. People should know this.
Soon I am contracted; I stretch, then cramp, then re-hunch. Screwed up, fetal.
Now I know what you’re thinking, back in bed so soon? Was it really that hard, the morning? Yes and yes and yes. All the rest I need, the naps, the zone outs, the inaction; they’re not curative, they’re preventative. I can do so very little to feel better that I must do everything I can to avoid getting worse. I am the snail on the straight razor. And he is bored.
I need to get up and piss. Twice. The curse of heroic rehydration. Its during the second piss I remember my newest mystery; if I have a bladder issue or just really sweaty balls. How to know? Smell? Litmus paper? I leave it. Lock it down.
I head into the in-between time of the hypnagogic zone (weird hallucinations, wordless shouting, industrial clanging). Waiting for a rush of sleep that’s more like fainting.
Today the visions are centred on mortality. (This takes the form of a perforated cylinder slowly rotating, backdrop a misty wooded cemetery) and I am almost fainting away when I go the other way and the here and now gets back in like someone turned off the TV.
The here and now is bright, is bed. Is Edwards odd sweet snores. The girth of the bed under me. And how Katinka (awesome, wife, mine) will be home soon. And then I remember, and wonder how I could forget, my recent additional diagnosis of a rare blood cancer.
‘Ford mumbles fuck and collapses like a star before the afternoon has begun’.
It is 11.15 AM.
