How do you convey how very ill you are ?

How do you convey how very ill you are,
When words seem to lose their meaning, 
as the illness takes a tighter and tighter grip on you?
First you say, "I am ill."
Then you say, "I am very ill."
Then I am "seriously ill."
Then I am "severely ill."
Then I am "worse."
Then I am "very severely ill."
Then I am "profoundly affected."
You try to explain each symptom,
But how do you convey multi- level pain,
impacting with different sensations?
How do you convey it is somehow more complex, torturing, intense
Than anything you would know?
"Pain," I say. "Burning pain. Throbbing pain. Itching pain. Numb pain."
"Worsening pain."
"Screaming pain."
Then "more deterioration."
Then "worse deterioration."
"Agony, torment, torture, literally."
Then there is the hypersensitivity.
Then there is the brain fog, creating absolutely "zero" in your mind.
The loss
Becomes a "void."
"A vacuum."
"Empty nothing."
But what does that feel like?
What does that look like?
How horrendous does it have to be
For people to "get it",
Then respond with genuine empathy?
Why, instead, am I left in this splendid isolation,
Forced upon me by profound, indescribable
symptom desolation, without relief,
That simply is overlooked, denied, ignored, by most
Leaving me feeling like a pariah and a ghost
In my own life?
Feeling that no one actually recognises,
nor understands,
in the normal world,
the sheer level of suffering,
that continues without letup,
For decades?
Leaving me feeling that there are simply no words,
To describe my reality
Because I ran out of them over twenty years ago.
Yet still, it carries on.

("Severe ME : Notes for Carers" Kindle Edition out soon)

Popular posts from this blog

Why ME must be removed from the JCPMH Report : Guidance for Commissioners of Services for People with Medically Unexplained Symptoms

Why the separation of ME from CFS is long overdue

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis