The darkness is my shelter,

It shields me from the harm of light,

The scorching, burning pain,

Is relieved only by the night.

 

My spine is like an iron rod,

Full of spasms and pain,

Muscles are like barbed wire,

So weak and quick to fail.

 

My hypothalamic-pituitary axis

Is utterly disrupted

By Myalgic Encephalomyelitis,

Still a mystery to doctors.

 

ME is a neurological disease

Affecting cellular mitochondria,

Brainstem, spine and muscles,

It is not feigned hypochondria.

 

It is also systemic,

And occurs in pandemics,

What we need is a polemic

Shift, in the view of medics.

 

Yet worse than all this suffering

Is the disbelief I must endure,

The constant accusations,

And the fact there is no cure.

 

I am told that I play dead,

And that it’s all in my head,

And I can if I try,

And perhaps I am in denial.

 

I wish that they could see

through the eyes of ME.

They only wish they could lie in bed,

Though my life is of the waking dead