Life worse than a nightnare



 I have never been able to get even close to describing the full horror of our situation.

My wife lives in a world incomprehensible to most.
She is unable to see people.
She is unable to physically function, except in incomprehensibly tiny ways.
She is tormented by every sound, loud or small.
She experiences extreme constant pain, paralysis, very severe cognitive issues and profound environmental hypersensitivities, making her life worse than any nightmare.
Her suffering and the total isolation are beyond most people’s ability to visualise.
Decades of misinterpretation, mistreatment, hostility and profound levels of both medical and social ignorance, have so harmed my wife that she cannot safely ever engage with anyone, even myself.
It is extremely rare that anyone even asks after my wife, never mind ask me how I am doing.
What, I wonder, sometimes, would I say, if I was REALLY asked -“ how are you?”
I just couldn’t tell them though. I don't have the words anymore, there's only these tears.

Comments

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

DO NO HARM, DO NO BETRAYAL