Content warning: A pretty bleak post, with mention of dying.
This post is for me; in the hope it can help me process and let go of certain aspects of a recent terrible day.
There are no photos of the worst days.
The days where I am bound to my bed, as if the mattress and I are magnets and nothing is strong enough to pull us apart.
The days where my temperature rockets, which then, nearly-always, triggers a paralysis episode. I cannot speak or communicate. I cannot move. I can still swallow sips of water; something that means I don’t ‘fit’ the parameters for Periodic Paralysis. Instead it’s ‘just M.E’.
There are no photos of the days when my heart rate slows…right…down…
The days where my lips go a pale purple and my skin is mottled. When my jaw shakes with what we assume is adrenaline; trying its best to keep my body functioning as best it can as every other function seems to be slowing to a stop.
There are no photos of the days when my husband thinks he’s losing his wife. Again. When all my effort goes into trying to just stay calm despite feeling that I am about to leave this life.
We know not to call an ambulance*. I would rather take my chances, and hope with every fibre of my being that I won’t die, than risk the incredible stress that every M.E. patient who has ever been admitted to hospital, or received emergency care, knows is inevitable**.
There are no photos of these days. There won’t ever be.
*I am talking about my own situation and experience only. It is not a suggestion that others don’t seek medical care when they feel it necessary.
**By this I mean all aspects of stress – external care-givers who don’t know your situation or care needs, the stigma of this health condition, the sensory overload, the clear test results that make for a wasted journey…