Hope for ME

Hope is danger. Hope is life.

Hope fills me with jealous strife.
Longing for the life I’ve lost.

Sinking like that coin you tossed.

Hope is timid fragile frail.

But like phoenix never fails.

To rise from ash, return from dust.

To shake off coats of pain and rust.

And shine again with light like breath.

A quivering guide through living death.

—

When you have an incurable, untreatable chronic illness with one of the lowest possible quality of life, hope sucks.

Myalgic Encephalomyelitis especially severe ME is a rollar coaster and I just couldn't bring myself to post something educational today. This isn't what I had planned to post nor was it what I planned to be my first health update in ages. But #ME / #CFS laughs in the face of trying to plan.

The past few weeks have been a rollarcoaster. Some minor improvements including more light tolerance and ability to sit up in bed opened worlds of possibilities to me. Then my own hubris of wanting those possibilities so badly crushingly stole them back.

This is life as one of the #millionsMissing. Where your every moment of feeling even slightly alive or in control is a priviledge. Where your position in bed or screen brightness are measures exertions.

Hope betrays me. It is my worst enemy. And I can't live without it.