LIVING LIFE ‘LIGHT’ WITH ME

When ME strikes
We know the score
Our lives won’t be
As they were before

We learn to pace
Wind things down
Cut things out
Try not to drown

Living on the edge of fun
As if your life is all but done
In the shadows, out of sight
Living our ME life so ‘Light’

Life without the bubbles
Life being not so sweet
To manage a day, where we get to play
Is our ultimate treat

Friends and family drop away
“Can’t come to see you after all today”
Even though you’ve read the runes
To gather up just enough spoons

Light of ‘friends’ saying they’d keep in touch
In fact they never do
Yet when they fall on tougher times
They look to me and you.

Light of help and of belief
Doctors, family giving grief
Have they forgotten who I am
Or do they just not give a damn

Light of research
Light of funds
Those we’re given
No more than crumbs

Politicians promise help
But most so light of spine
Seem to help just themselves
While saying It’ll all be fine

Why do we have to continually fight
To prove that we are in the right
That ME is a crippling beast
Belief is what we expect at least

But I want to kick out living light
Want to kick it way out of sight
Want to live life to the full
Want to eat steak, not just gruel

I want to wake and feel refreshed
Not to be knackered just getting dressed
Want to open curtains, let in light
Not act like a creature of the night

Want to walk without pain
Want to think without energy drain
Just want life to be more rounded
Not like now where I’m totally grounded

I want to get people to understand
Get more awareness across the land
I want to believe things will come right
No more living this life so light

Till then I’ll be with the friends I’ve found
In the Worldwide ME Underground
Virtual friends they may be
But they’re the ideal friends for me

They give support from a real honest place
Though we’ve never met face to face
Always there, still fighting the fight
Till the day we no longer live our lives light

By Bill Clayton

© December 2018

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