Who is reaching out to the most ill, the very severely affected?
Who is trying to make contact with the profoundly isolated?
Who is trying to touch, who is actually trying to comprehend their awful reality?
Who hasn’t walked away?
It is so incredibly difficult.
In Severe/ Very Severe ME, the illness constantly shifts in its barbarity, you have to be acutely aware, there is no room for even a moment’s complacency.
The slightest things I do, in all innocence, can so easily be devastating to my beloved, my clumsy attempts to help can have the most appalling consequences, my presence can be too much to bear at times.
Truly the most ill, in their depths of suffering, are trapped in an unimaginably terrible, lonely place of relentless torture, crushing hypersensitivity, paralysis and agony.
Sometimes, when things are very, very bad, no contact whatsoever with the person is possible, as the heartbreaking diagram below shows.
I find that the most difficult challenge of all, especially when my actions are the cause.


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