WHAT DO YOU DO, WHEN YOUR WIFE'S LIFE IS TORN APART BY VERY SEVERE ME ?
You care, you seek answers, you speak up, you do your own research, you find a way to muddle through
You find a way to help her even though the slightest touch makes her cry out in pain, the slightest movement causes intense mental confusion, mind blanking deterioration, shaking muscle spasms, triggers hours or days of excruciating total or partial muscle paralysis, extreme emptying weakness, increasing her already heightened hypersensitivity and pain still further, until even your breathing too close to her will hurt her.
You see her being harmed by ignorance.
You see her disappearing from the world.
You see her struggling to bear the unbearable, with no pain relief whatsoever and an intolerance to drugs.
You see the illness not just take her body from you, but her mind badly affected, her sight diminished, her creativity trapped inside, her talent unexpressed, the possibility of motherhood lost for her; her tears tear at you.
You hold out a hand if she can bear to tolerate your presence or your contact - so often not possible. All this is invisible to the outside world. Her suffering intense yet ignored or even denied.
Friends, family, neighbours do not begin to comprehend her horrendous moment by moment agonising experience. Nor do they understand the choice you make, the pressures you are under as a carer, the desperate need for affirmation, understanding, kindness that rarely comes.
You even experience hostility and criticism yourself, such is the rampant ignorance that surrounds ME.