A support group that makes you feel worse?

It’s hard to strike the right balance when you’re feeling ill, between finding understanding and getting mis-informed.

Since talking to the specialist, I have become wedded to the idea that I have glandular fever and Parvovirus.  It’s easier to understand but I also know that it’s speculation with an educated guess.

Looking on a local ME/CFS website this morning out of curiosity I was unprepared for the amount of ‘positive’ stories of living well with fatigue.  These stories of years of recovery made my mind scream, ARENT I GOING TO GET BETTER?!?  The thought of becoming one of those people living well with fatigue absolutely terrifies me and fills me with despair, which I can’t afford.

My symptoms fit very well with ME/CFS but is it and what I have the same or different?  The only thing I can console myself with is, the doctors don’t know!  It’s actually better for me that my doctors are speculating because that leaves room for complete recovery.  My experience with specialists over the last year has taught me that they are flying blind with more information than I have, but still blind.

I choose to go back to assuming that I will recover one day.  That feels better for me, and anything I can do to take the load off is a good thing right now.

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