Sunday, December 4, 2016

do i really understand ME?

Myalgic Encephalomyelitis 
  

the answer is no...
they seem to tie it in with chronic fatigue syndrome, i hear others
mention lyme disease,mold toxins, mercury fillings being removed unsafely,environment,traveling to india and coming down with 'flu'
like symptoms.   

i met a woman with ME named lugus I'm guessing 3 years ago 

the story is way too long to start with, so pieces here and there
will be woven in.  as for me jill emery i was a musician for many years  still an artist/painter i have my work on etsy thats where i met lugus, she was selling her gemstone energy infused bracelets.

we would get to talking  I'm in california she is in toronto

our conversations would lead us on many tangents from bob dylan, movies,spiritual climates,healthy food options to making up scenarios like we were trying to 
write bits for our own comedy.

Her story would unfold in front of a very inquisitive me not necessarily absorbing the information, it was more like i would see her living it that's  where i would grasp and learn or unravel this baffling auto immune disorder? is neuro supposed to be in there too?  



lugus       jill

this is a pic from the 2nd time i visited her
she has been bedridden for 13 years, 
she was a buddhist nun at a monastery, she is an herbalist
and did much traveling,worked at a natural food co-op for many years until she would collapse.

 i just didn't want to see her as 
a person who is not well but I've seen her through seizures,not being able to move,speak,eat much.   I've also got the feeling from 
others who suffer with this of varying degrees, almost just written off by most
as lost causes, while others have stayed by the sides of unbelievable circumstances.

 finding a dr. who has the knowledge or being able
to afford or get to one seems next to impossible.  

hoping in the words here this can create a better understanding or even bringing awareness
the trials they have to endure,  to their lives with families,losses of jobs to plain ol survival. going outside of this with what they love, things that keep them alive.





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