all back

May is ME Awareness Month, (CFS in US) so before the month is over I thought I would share a poem I wrote at a point before I had accepted the ramifications of my condition. There is rarely full recovery from myalgic encephalomyelitis, although such is not unknown. However the longer one suffers from the ailment, the less likely recovery, let alone full recovery, becomes. That is not to say I do not occasionally wish for a miracle cure or a wonder-drug; but in the foreseeable future the latter is not probable and the former is nigh impossible.

I have the severe form as defined by National Institute for Health and Care Excellence (NICE) and confirmed by my hospital consultant (clinician). The majority of the time I am house-bound; much of the time I am bed-bound in what I ironically label my bed-cell. With the discovery of social media and the installation of wi-fi, I have carved out a role as a bedtivist, that is a - non-partisan - political activist working from bed. I feel useful again and that has done wonders for my amour-propre.

Nonetheless, I can still recall the longing for my previous existence.

all back

      and the tears well
my eyes fill
my stomach churning
constricting
pulling at me
thoughts racing
evicting them
proves hopeless
pulling at me
frustration asserts
I see a jogger
      and want to jog
I see a swimmer
      and want to swim
I see a dancer
      and want to dance
I want my freedom back
I want my body
my former physicality
back
I see a book
      and want to read it
seven days
for seven hours
an exchange
I did not solicit
I hear a debate
      and want to join in
but lose the line
what happened
to my intellect
to my memory
why is everything
about me
my being
so unreliable
give it all back
but there is no-one
listening
just my psyche
I want it back
all back
my eyes fill
finally
the tears spill

all back


My bed-cell is my own private space and I am unwilling to be photographed therein, so below is a picture of me lying propped up in the shade on my last holiday.