The Agony of Caring for Someone with Very Severe ME

There is an agony in caring for someone as ill as my wife, who has Very Severe ME ; I have made a list :
1. The agony of my presence, my voice, my thinking even, my attempts to try and be quiet, increasingly being too much for her to bear.
2. The agony of her total pain, paralysis, deep isolation from anyone and everything, the absolute littleness of her life.
3. The agony of the immensity of the illness, in its face we are only a dot - at least that is what came to me in a reflective drawing recently...although a  powerful dot of fire, that will never give up.
4. The agony of the hours spent coping, my wife never comfortable, never finding any relief anywhere, moving from lying to sitting, always being pulled back into paralysis and exacerbation of symptoms.
5. The agony of feeling less and less confident, hopeful, certain of a cure one day.
6. The agony of getting older, it's been almost 20 years now, realising my body is slowing, is not as strong as it used to be, to help.
7. The agony of witnessing the psychiatric lobby still going from strength to strength, in contrast to our diminishing situation .
8. The agony of being so alone; knowing there is not one ME group that is waging an effective fight.
9. The agony of fighting so hard, yet the illness is still left untreated and is taking its tragic course, regardless.
10. The agony of  my wife whispering to me, at 2am that the pain is too much to bear.


  1. Greg there are so many people in the same position as you, people who just hope that something is going to happen - but it never does. There are so many differing peices to ME that no two people suffer the same, it has broken everything we had together but we try to carry on.


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