Its so unfair! The daily grind.

I want to be heard.
My illness makes me have no voice in society.
Before I spoke.
People heard me.
Now I speak.
No one hears.

The pain remains the same.
If I rest, work, play or sleep.
There is no rationale to the symptoms or their management.
Depending on who speaks at you, you are always doing
something wrong.
Itís easier for the white suits to blame you, than attempt to
investigate something that refuses to sit within their tick

I am no longer a person.
Just a statistic on a list.
The quicker I can be cured.
The more points the hospital can get from a patronising
Itís a shame when we put patients first we seldom hear
what they are saying.
Perhaps itís because the individual voice has no strength.
Or what they are saying conflicts with the current medical

The temptation to stay in bed.
Goes rushing round my head.
As the pain runs through all my veins.
My muscles contract as the virus impacts.
Every step is an effort, every thought a major challenge.
But every smile shows that life is worthwhile.
I will not commit to this lifetime of sót.
No matter how bad or how sad I seem.
It will all be worthwhile for a small but significant smile.

Another morning is dawning.
I awake with a reticent shake of a body that has a mind of its own.
I feel I am a clone from the twilight zone.
Whatís not going to work today?
I ask myself.
Waiting for a reply.
All I can do is sigh.
My brain does not want to respond.
So I am forced to spend the day like a tadpole in a slimy pond.
Aimlessly swimming about.
I want to scream and shout.
Itís so unfair.
Who really cares, or gives a dam to this drama queen ham.
Waiting for natureís metamorphosis to change me into a toad or frog.
I return to my God and ask him why I sit and cry.
I never said life was easy was his reply.

When I get up I am playing a game.
Only my sanity remains the same.
My arms and legs donít work as they should.
The brains messages donít reach their destination,
I wish they could.
My life / my body is like a puzzle, there are more
and more days when I seem to struggle-
To do the simple tasks.
I canít be asked.
As the pain increases my desire decreases.
I know the pieces are still within me, like a puzzle
in a box all jumbled and crumpled.
I owe it to myself not to give in.
I must take it all on the chin.
I try to lo
ok for good things to come out of this illness,
that sneaks up in the night with a terrible fright.
But there are even days when I am loosing sight.

The medical profession look and stare.
But what do they really know or care.
They push and prod and shake and nod,
continually patronising this unlucky sod.

I am trying to get free of the body thatís M.E.
As I struggle to improve my loved ones watch
every move.
They donít know what I really endure as I seek to
find an illusive cure.
As I struggle to know what they think, the reality
of this illness begins to stink.

Possible check mate.
All thatís gone before, is a hole within me.
A distant memory.
Allowing occasional thoughts of passion and pride.
Giving a glimpse to what might be again.
If the illness allows.

My confirmation:
Journey to and from my resting place.
The second relapse which leads to the confirmation of ME leaves me almost bedridden for three weeks.
My world reduces to the impact of the bedroom decoration and the painful journey on my knees to the bathroom.
I am aware of very little, save the light and breeze, coming from the window.
I am even too exhausted to dream, have nightmares, or worry about the future.
I am empty and in constant pain, that is only relieved when the body shuts down and I sleep.
An empty solid sleep, devoid of any senses.

I feel that I am cast out on the street.
Donít you dare pass judgement on me.
Live in my body for a day.
A week.
A month.
A year.
Then tell me what I should think,
or fear.

Banished to the corner.
No longer wanted by society.
No longer listened to.
Treated like a leper, a malingerer.
Inside, when the pain allows the mind to soar.
I still have knowledge, faith and love inside me.
If anyone cares to listen.

This statement is for the many, not the few.
Large numbers of our society.
Barely exist.
To many who observe they stare as if we are pissed.
Shunned by society.
A life with no variety.
Just a constant struggle.
A perpetual never ending muddle.
A constant tiring strive.
To continue to survive.
Against all the odds.
We are the unlucky sods.
So what are the odds.
Currently one in ten.
It could be you!

So what clothes do I wear today?
Putting behind me my previous life is the only
way to be fair to my wife.
I must cherish what I have achieved in the past,
to accept new challenges that will be vast.
The only problem is what can I do?
When from minute to minute my symptoms change and take
over my body, leaving me with little control.
My greatest sadness is that I can no longer be
relied on at this moment in time.
So I must continue to reflect on what future I can
claim as mine.

All around is not troubled, itís fine.
So why should I feel I am drowning in brine.
There are times when I am gasping for breath.
In the earlier days I contemplated my death.
I must continue to be kind to all those around.
So I donít loose my mind and keep my feet on the ground.
Itís hard to be positive when you are in so much pain.
I must always remember my family remain.

A step too far.
Whose to say whether I have overdone it or whether I havenít tried hard enough.
Whose to tell me that I am reconditioning myself into ďBad Life skillsĒ, or negative reinforcement when the pain impacts and I have to go to my bed.
I am certain within my own mind that I am doing everything possible to give me a chance to ďget betterĒ.
When will specialists realise that the patient themselves is a vital source of knowledge and should be listened to with sincerity, not patronised, ignored or abused.
Before the thief in the night I had a voice that was respected, so why is the world now deaf.