Image credit: Counterpane: Alec Finlay, with Rachel Smith, photography by Hannah Devereux
I can’t write a diary of recovery as today, day 112, is no different from day 22, 42, 62, or 92. I can walk 200m, but it will cost me 4 days relapse. There’s no pushing through this condition.
I was in a high-risk group, having had ME for 30 years – even if many GPs don’t acknowledge that risk. I’m a first waver: damn that lockdown being one week late.
In the media I see there’s now a general acknowledgement of a post-covid or long chain coronavirus.. I also note, with dismay, that some medical experts seek to differentiate it from the ME/CFS and post-viral fatigue syndrome. They do so largely because of prejudices which exist against those older conditions. Whatever differences may exist, these are all post-viral diseases.
The experience of ME + swine flu, which left me bedbound for 5 months, is not that different to the past 4 months with coronavirus. The virus itself is slightly more complex, as I perceive it in my body, than the glandular fever which was the tunnel that led down into my ME, but make no mistake, they are cousins. The physical impact is almost identical. The experience is like time travel, going back to when my body first collapsed and the ratio between activity, energy, and recuperation went out of kilter.
Having watched ME be belittled and research delayed and overlooked for decades, as the illness was caught up in a disastrous psychiatric model, like many people I hope that the current disaster will lead to genuine research. Ask any medical expert in ME and they expect thousands of new cases.
There is a body of wisdom and cussed determination in people with ME, fibromyalgia, lupus and MS, that is a primary resource available to people with long chain coronavirus, if only society will recognise this. Those with chronic conditions have experience in measuring out the day by the way the light falls on the wall, the pips of the news, or footfall of the postie and sound of the mail clattering to the floor.
I’ve written some thoughts elsewhere, on this blog:
https://disabilityarts.online/magazine/opinion/i-am-protecting-myself-but-i-dont-feel-protected/
This website is an excellent resource. An alliance should be formed with the other conditions that I have mentioned. For now, I hope people will excuse my responding here with some poems, prefaced by a brief note.
lock-down back-garden, a coronavirus journal
In a radical new way our society has entered a new time frame: one defined by illness, the threat of illness, or the losses imposed by illness.
The day of illness drags because it lacks for events; they have to be invented, imagined and dreamed. A walk to the kitchen can seem an impossible hike. During the days, weeks, months, or years when, for many of us, our lives are going to be constrained in new ways, here are a few notes on time and illness.
she sets the jump up
and the clever dog
runs around it
to get his treat
*
a dove on the door
of those about to die
*
the sag
in the quilt
must be my
knees fault
*
will you allow me
in your bubble?
are our two house-
holds one home?
*
I say I feel
like an old Polo
swopped
for a Trabant
he says Trabants
run for ever
*
you can meet one
parent in the morning
one in the afternoon
and both apart
*
nicola’s manifesto
if your life
is normal
something’s wrong
*
the odd walker
on the path
with an aura
of danger
*
she says every
catastrophe
carries col-
lateral beauty
*
take your water
with a pinch
of ascorbic
do as the tea
says: breathe
deep
*
he says he hopes
I am as healthy
as a cucumber
so I sit a little longer
in the window sun
*
her cold water
cure works for
pain as well
as melancholy
*
if you can walk
a half mile
places connect
if you can walk
100 yards
then that’s it
*
you must rest for some time
before you can really rest
*
like a puck in the gob: you look well,
said to you when you’re ill
Alec Finlay