i remember through tears saying to my then Neurosurgeon…”please do not send me away without checking everything you can…THIS is NOT a life”.
That was a long time ago…2 years or more ago.
he felt “sorry” for me or compassion for me as it was heartfelt and we organised the SCAN that decided i needed brain surgery…
before my legs have disconnected from reality.
NOW i am:
- more static
- more fatigued
- feet paining me
- LESS able to move my legs
- another sleep on the sofa
- more numb in my numb places
- parked on a sofa
- about a stone heavier
- at the stage where people around you accept you are “off the social batter”
- unable to go out of the house much
- virtually not at all
- walking to the toilet exhausts me
- so lonely and isolated
- moving in bed is so painful at night
- i am begging for funding for a wheelchair to assist me to move
- fed up hearing ” X was asking for you!” – that doesn’t replace a life where i meet people
- fed up feeling guilty about what i have to ask my family to do for me
- YES i can SEE the horrors of imminent death in some of my friends….of COURSE i can see that is so much worse that my situation!
- feel guilt for whinging as there are “always worse off”.
- AWARE that it will not gET better!
- arnold chiari malformation has ROBBED me of my life
but as i SIT…vegetate in my armchair… life via social networking …fed and medicated by my family…
is THIS a LIFE??
and it isn’t.
it’s merely an existence.
not even a good one.