There are so many versions and variations of life with chronic illness. I can only ever share my own.
My version, right now, looks like an unmade bed and really-needs-changing bedding. It’s mismatched pillows piled up in an attempt to get more comfortable.
It’s living in dirty pyjamas and putting a clean pair on a dirty body, that makes those clean pyjamas feel dirty within hours.
It’s wet wipe washes if I’m lucky, and keeping an eye mask on my forehead to cover greasy hair.
It’s unbrushed teeth and knotted hair. Unshaven legs and body odour. It’s empty pill packets discarded next to the bed. Dirty mugs and glasses on the bedside table. It’s a daily ‘walk’ being the few metres from bed to the toilet.
It’s the mattress sagging on one side, from me being in it so often.
It’s a washing basket that’s overflowing onto the carpet. Clean laundry sitting in piles, waiting months to be put away. It’s a carpet that hasn’t seen a Hoover in some time. An overflowing bin under a cluttered dressing table.
It’s dust on surfaces that remain unused because life is spent only in bed, on the sofa, or in the bathroom.
It’s having to make notes about which pills I took and when, because I forget otherwise despite dispensers and timers. It’s forgetting to make those notes.
It’s taking days to reply to simple messages because my brain just will not brain. It’s feeling delirious from pain. It’s being drained of all energy and adequate function.
It’s monotony. It’s isolation. It’s a staleness. It’s extreme patience. It’s hoping for a better day tomorrow, but gearing myself up for exactly the same again. It’s ‘living’ with no structure or routine; just getting through in the best way you can.
It’s waiting until a more acceptable time to call it a day, only to struggle to fall asleep. And then it’s repeating the process each day until a snippet of respite miraculously appears.
As ever, I’m not looking for suggestions on how to improve any of these things.