but you are getting better?

NO…and i NEVER will



a YEAR after brain surgery…

which became meningitis…

also became MORE brain surgery…

and had also a defective benign lump removed,

i HAVE recovered 🙂

recovered is THIS

a life where i rarely leave the house

when my fatigue way outweighs my interest

when i go to one shop and THAT is a successful outing.

on one of those outings, even though i KNOW i MUST come home and sleep!

i KNOW that is me “done” physically for another day…

an i meet people and it feels good

i know on days when i manage to go out, and meet people,

there is an assumption (and i understand it!) that you had brain surgery to fix you 🙂awareness4

but my brain malformation, my underlying neurological condition is NOT going away, or getting better.


That then results in:

  • “so are you getting better now?”…
  • a “but you’re LOOKING great!”… which is usually followed by a hopeful,
  • “but you’re getting there?”
  • and such other well-meaning comments.
  • and they mean well but i find them so difficult to respond to!
  • my disease is life limiting…life ruling…but invisible…so this continues!


i am NOT ungrateful

i am just no longer ABLE to answer honestly

  • i have an invisible disease, which i will have for life.
  • my legs are in pain in every fibre as we stand here.
  • i feel dizzy and nauseous ALWAYS
  • cold weather causes more pain.
  • STRESS caused by negative situations is inhuman at best, but in my case can result in hospitalisation.chiarisurgery

so NO. NOT better.

in my life – there was a time -where is was irreparably hurt by being wronged.thetruth4

that i have lived through.

clawed from the ground up – day by day.

i am still here…

and remarkably watched the people who did it walk away.


THAT has also no doubt prevented healing even to it’s possible best.

so on any given day, when you judge me, please just don’t b disappointed if i really sound disinterested.

i AM SO THANKFUL for people who care…

just permanently exhausted and permanently suffering ..invisibly…


chroniccpain understandinginvisibleillness slower





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