A DAY WHEN I COULD HAVE, SHOULD HAVE, WOULD HAVE..... EXCEPT I COULD NOT
Today I am screaming internally with the weakness, shifting, crushing pain, the throbbing numbness, torture from the simplest noise or movement.
Everything feels broken inside me. No path to communicate, to verbalise, to express.
No path to comprehension, understanding. No path to memory or information. No way to explain or describe the agonised reality I live in. Every sound hits me.
Every noise hurts me.
Every unexpected invasion of my space paralyses me.
My muscles are dead to feeling but alive to pain. Contact so exquisitely unbearable it is impossible to convey the sensation it engenders or the pain level.
This forces me into intolerable, invisible isolation. For even if I am in the same room as you I am not experiencing you or the environment in the same way. Even the sound of your breathing can be an irritation to me because it is assaulting my senses.
The I that is me, is trapped deep within me, suppressed and compressed into smaller and darker spaces as eyes stare, vision is lost, mind is shut down and blocked out, thought and interpretation impossible.
My eyes may even shut and refuse to open. I may look asleep or my breathing so shallow I seem possibly dead.
No movement at all is possible, leaving a sense of straight-jacketing external pain and jellifying empty nothing, within the muscles, at the same time.
This is a stark and shocking reality few want to know about or try to understand. It is endless. It is relentless. It is tormenting.
Sound itself, even ordinary noise, can literally torture me repeatedly. Easier to pretend that we are ok, than to try to reach out in common humanity to try and grasp what I am experiencing and reach out in genuine empathy.
Easier to say, 'Hope you are well,' than to acknowledge the extreme suffering and social separation of 25 years of agonised, repeated, daily and nightly paralysis and the intolerable indescribable pain and hypersensitivity that I have had to endure without adequate medical help or recognition.
Today is another lost day. A day when I could have, should have, would have....., except I could not, did not, was not...able, because of profoundly disabling Hyperacusis and painful Periodic Paralysis, leaving me asking when will the help I need, the medical recognition, the right support actually be there?
How long do I have to endure the unendurable, without the right clinical input, in utter isolation due to Severe illness?
How loud do you have to shout to be heard?