When will there be genuine hope?

When the pins and needles first came
I simply could not shake them away.
They would not go no matter what I did.
Dead limbs refusing to shift.
Then the pain came :
Shooting, stabbing, throbbing, burning,
agonizing , unrelievable  pain
And never left
Just silently crept into my neck,
Into my hands and feet
Up my arms,
Up my legs
Higher and higher.
I could feel it taking me over
And could do nothing to stop it.
I rested, oh yes, I rested
Week after week after week
Month after month after month
I lay tormented
Whilst my doctor denied
My physical reality
And resented the demand to visit me at home.
The pain continued,
Yet there was a numbness too
Over all my limbs.
The inability to function
Came first with sleep
Yet  paralysis dominated every  waking hour
Massive headaches
Facial palsy
Face pain
Lips numb.
Hydrotherapy brought
Shaking spasms
Hour after hour shaking without cease,
Yet still no explanation
No treatment
Just Disbelief.
The pain of noise hypersensitivity
became excruciating
Light hurt my eyes.
No part of me was free from pain now.
And still no help,
Just us fighting for my needs,
Refusing to accept the lie
That there was nothing physically wrong.
How can this happen you say?
Surely not our health service?
Surely not our doctors
Who take a vow to do no harm?
Yes these doctors.
Yes this health service.
Yes this injustice.
Yes this denial.
That was 18 years ago.
But where is the change in awareness?
I had to move half way across the country
Just to get a doctor who would validate me.
Shocking isn't it?
Well, maybe not
Because I am still ill,
Still have no real answers
Despite years of trying to find them
No cure
No  safety
No security
That medical practitioners will understand my neurological disease
Or take it in to account.
Shocking doesn't
Go anywhere near
Describing the outrage I feel
About the way people with  ME are treated in this country.
The more severe
The worse the neglect.
The illness denied
The medical world and society at large
And all the time I am still here
In howling agony
Yearly deteriorating
Whilst people all  around me,
Unmet friends along the way
die from ME
And nothing is done to challenge
the institutionalised prejudice
And shameful psychiatric
That damages the truth
And leaves me too to die.
When will people take action
And real change comes.
When will there be genuine hope?
Only when ME is treated with honesty
and integrity.
No time soon then.


Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.


Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis