The Pain in Caring

Few are able to bear the pain of watching, waiting, being with the person who suffers, especially if that
pain is drawn out over years and years.
There is pain in caring for someone as ill as my wife; I made this list:

1. The pain 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 pain of her total suffering, paralysis, deep isolation from anyone and everything, the absolute littleness of her life.
3. The pain 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- a powerful dot of fire though, that will never give up!
4. The pain 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 pain of feeling less and less confident, hopeful, certain of a cure one day.
6. The pain of getting older, it has been more than two decades now, realising my body is slowing, is not as strong as it used to be, to help.
7. The pain of witnessing the psychiatric lobby still going from strength to strength, in contrast to our diminishing situation.
8. The pain of being so alone; knowing there is not one ME group that is waging an effective fight.
9. The pain of fighting so hard, yet the illness is still left untreated and is taking its tragic course, regardless.
10. The pain of my wife whispering to me, at 2am that the pain is too much to bear.
We have found that love gives strength in the bleakest,
most barren, pain-wracked place.
(from "Severe ME; Notes for Carers")


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