I feel so lonely

In this moment
With these indescribable sensations
With this unbearable weakness
With this complete inability to do anything
I feel so separated from everyone
And everything
Because none of me is normal
None of me works like it should
None of the ill me is seen in its fullness
Because it is truly invisible
Nothing can make this moment right
Nothing can help me feel
any better
than I can bolster in myself
Not enough is being done
To make this illness go away
And not enough is being done
To make the psychiatrists go away
Where is their shame?
Where is their contrition?
Where is the harm?
Every moment someone is suffering:
Tormented, distressed, in agony, helpless, incapacitated
By this illness
All the time it is allowed to be called CFS
All the time it is allowed to be misrepresented
As deconditioning and wrong thought
All the time there is no coherent biomedical response.
That is, basically,
All the time
And today
It is simply

Too much.


  1. To Greg
    I share your despair
    So I send you this prayer.
    Father God, you have never failed me,
    I have given all my life to you as you gave your son to save me.
    I only know the name of this man, Greg,
    But I pray that you will give him peace.
    I know that deep, dark place within where he is
    I know because I share the disease that tortures him
    I do not know how long he has suffered but I know
    it is too long. I know the frustration, the loneliness,
    the anger, the fear, the indignation that he feels.
    I have prayed to you for a decade as I dealt with
    this same disease. I don't know the answers I don't
    know what to tell, Greg. I turn to you to help him
    through this loneliness. In Jesus name I pray, Amen

    Greg, I do not usually go to these sights, but tonight I
    felt an urging to browse, and I found your words. It is
    not easy, but know you are not alone.

    My husband, children and grandchildren have helped. Don't
    give up, there is an answer, we are the pioneers that must
    blaze the trail to force the medical community to do what
    is right. I wish for you, more days that are better, and strength
    to carry on.




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