A vicious attack.
Recently I was subjected to a vicious attack from a close family member, for my commitment to Linda.
I have lived from necessity, in almost total isolation, for more than two decades.
Cruelly, that can be misinterpreted as not caring about my family and relations.
If ONLY I could visit, attend funerals, weddings, meet up, go for a drink, go on holiday !!! How it hurts, that I can't.
This is my wife's response , it barely touches upon the fullness of her symptom experience :
“When will people get what it means to have profound noise sensitivity, how its not just a nuisance or an irritation or an inconvenience, but life threatening, terrifying, horrendous and uncontrollable ?
When will they realise that a sound, any sound, loud or small, has the power and the potential to harm me, not just for a moment, but fundamentally ?
When will they understand that noise tortures me literally, not occasionally or sporadically but every single day I am paralysed by it ?
Let me spell it out for you what it means to be paralysed by noise:
It means that the noise triggers some physiological reaction in your body and like a domino affect your whole body collapses into total inability to feel or function. Your toes will not move. Your feet get stuck to the floor if you are sitting, your whole body gets suffused with the bed if you are lying down. Your body might break down into intolerable, painful, shaking spasms that wrack your whole body.
Your head shakes wildly, your arms get thrown about even your legs twitch and shake and kick. Your gut goes into unbearable tremor that resounds throughout your whole body too small and fine to be seen externally but indescribably horrible in its sensation. Then you paralyse.
Your stomach swells hugely, it doesn't work, you feel nauseous, your head throbs inside, it burns outside and is unbearable to contact, so pressure is intolerable and indescribably agonising. Your face paralyses and your lips clench shut and will not move no matter how much you want them to, so you cannot speak or swallow or suck a straw to drink or chew.
Your throat and tongue have gone numb and paralysed anyway. Swallowing wouldn't work even if you could get food in your mouth. Your eyes stare either open and unable to focus or your eyelids close and will not open at all.
Your left arm and hand and side and foot and leg and face, burn twice as painfully as your right side, which is always in pain that never leaves. Not one millimetre of my body has been pain free for over two decades, but the paralysis worsens it.
Your back muscles collapse and the sensation is screaming, burning,throbbing, rippling pain as the muscles collapse and refuse to hold you up and your whole body feels like it is breaking up from the inside out. Your mind blanks out and your breathing slows down.
Your chest muscles hurt and won't work. Your diaphragm is blocked by the swollen paralysed stomach pushing against it.
Breathing becomes difficult. You overheat and sweat and shiver at the same time. Your nose goes ice cold and your hands and feet are empty. They feel insubstantial like jelly or candy floss.
You sit unmoving and hunched over like a squashed statue in massive agony. If the noise continues to assault you it breaks inside you repeatedly tormenting you. If it comes at intervals it will repeat the pattern again and again, just as you are struggling to get out of it you are thrown into paralysis even deeper and worse than the previous one and it lasts for hours and hours, with you, trapped inside and unable to communicate.
And how do you consider, you people, who ignore my reality and my symptoms, that I live in a house with a compassionate husband trying to care for me in such a terrible state of hypersensitivity ?
Do you think we just have a jolly all day long and there is nothing much to fuss about?
Well, you tell me, how do you cope with a phone ringing, for a single second, if one shrill noise will harm you ?
How do you tolerate other people's conversation, speaking anywhere in the house or even outside it, if you hear it through the floor boards or the walls or in the same room, when every single syllable is hurting you all over, not just your ears or your head but in your guts, your back, you limbs, everywhere? And will make you even more ill and physically weak?
How do you think food is prepared, when every single knife cut or bang slices into you, when the electric kettle and the sound of the oven, tortures you, how do you think your husband moves round the house when even trying to be quiet as a mouse, his footsteps are kicking you all over with their noise?
How do you think life is lived, moment by moment in these absolutely horrendous physical circumstances?
Why would you think I can be left alone for hours on end to manage when I simply cannot move or think or function, repeatedly all day long? Or tolerate one moment's agonising noise without dire, impossible to deal with or bear consequences?
When are you going to open your minds to the true reality of very Severe ME and the unpleasant, inconvenient, unfortunate fact that the wrong environment, the wrong experience, the slightest wrong sound can lead to frightening unbearable deterioration of symptom and a complete inability to get my needs met, can lead terrifying intensifying of pain, paralysis, numbness, swallowing difficulties, cognitive dysfunction, even to life threatening experiences?
Just when are you going to try and comprehend the massive stress any carer lives with, trying to move around the house, live a life of love and meaning, meet the caring obligations and not despair for the ignorance and cruelty and abuse of others, who should know better, yet who simply negate, deny, minimise and dismiss the true reality.
Very Severe ME: the most horrendous illness to live with - and from virtually everyone who cannot be bothered to try and comprehend it : persecution and ignorance ! "