in the shadows

I wrote this a while back, intending to post it  for ME/CFS and FM Awareness Day on 12th May, and totally forgot to schedule it  to post while we were on holiday, and then when we got back I thought it was depressing so I didn't post it. Looking at it now I still think it's depressing but hell, that's the way it is. 

I don't want to write about this

I want to throw it all far away

 lock it in a box

stuff it under a cushion

ignore it

I don't want to write about the worst days

my giddiness, nausea, exhaustion, pain and confusion

The time I got hopelessly lost on a street I have known for years

The days I can't stand long enough to make a sandwich

Or raise my arms to dry my hair
When I can't read

Or understand the simplest tv plot

Or stand the noise

or the light

I wish people understood that

fatigue is the very least of it


I don't want to write about  

 standing (lying) here watching everyone else move forward

Seeing my own life pass me by

Worrying before every social occasion

How many days will I take to recover

I don't even want to write about the good days, 

when I feel enthusiastic and make plans

which time and again I can't carry out

I try to be positive but this negative situation

  means I am endlessly disappointed

I don't want to write about wondering how long I will be ill

and the possibility that I may never be well again

I don't even want to think about 

watching my own life 

from the shadows
forever

Links:

• Rachel and Andy are cycling 20km to raise awareness of ME  Please sponsor them if you can.
• You can also read about Rachel's experiences of living with M.E. in a series of posts she wrote this month. You can find the first one here.
• Tilly's husband has M.E. She wrote about it here
• Michael Nobbs writes about being creative with limited energy at Sustainably Creative
• M.E. Association
• Action for ME