Writer tells it like it is--

S/he is from Canada but it sounds pretty right on for the U.S. too.

sick, originally uploaded by jungmoon.

From Dominie Bush's 8/4/07 newsletter--Item #5:

FMS/CFIDS SUFFERER IS CARETAKER, Daughter & Mother

"Just quickly perusing your latest compilation (fantastic FM/CFS
newsletter!!!!!) and as I read am struck by two things.
1) how many people with FM and CFS are prescribed a plethora of drugs
to control or supposedly "cure" symptoms and
2) being desperately ill and socially ostracized we who have FM and
CFS are almost every time I read about treatment, told that another
medication can make the difference or is the missing magic bullet to
cure us.

Dominie, I have had this illness definitively diagnosed in 1996 but
had it for at least ten years before that so for over 20 years I have
had it and have tried everything that I have come across to try to get
better - all kinds of drugs, eating programs, sleeping aids,
exercises, rest, relocations, etc. and after all of it this is what I
have concluded. What really helps is being able to rest and sleep and
to NOT have to be CONSTANTLY badgered by financial worries, social
stressors (having always to explain why you can't work as much or at
all to family, friends, co-workers, doctors!) environmental
toxins/extremes/noise, etc.!!!!!

If we were allowed to recuperate with what we really need, clean
water, clean air, fresh food, quiet, love and understanding, no
familial demands and NO major stressors then yes, we WOULD get better.
These things are required for our adrenals, our organs, our nervous
system to recover more quickly. However, I find, in this society, once
you get sick, you're done for. Only the most kind of friends and
doctors who understand the reality of this illness stick around and
don't make you feel like you did this to yourself or that somehow you
are to blame. Yes there is a degree of blame for sure that we can heap
on ourselves like working 80 hours a week day in day out (overwork),
then coming home and taking care of a home and responsibilities and
putting ourselves last, then add kids and family members (trying to be
a good parent/sibling) and not to mention things out of our control
like pesticides in our food that we didn't have 60 - 70 years ago,
etc. etc. etc. However, society at large is not helpful in my opinion.
It is the minority of society that has been somewhat helpful and
usually is comprised of family or friends of those afflicted with this
illness and those who bear it themselves who have risen up, heroically
and against ridicule, to bring awareness and credibility to the
reality of the suffering that is FM/CFS.

Right now because our society doesn't respect or care for those who
have paved the way before them, I have moved in to care for my aging
mother who has alzheimer's and another chronic painful illness. I had
to quit university (I was hoping to re-train myself for another career
that I could hopefully support myself with as disability income is not
nearly enough to live on), move from another province and leave all
that I had established to do what was needed. I have other siblings
but they are too selfish to take ANY time out to help and this is the
problem. Those who develop this illness are usually the ones who don't
say no to responsibilities. They ARE the responsible ones and as the
result of almost always having to pick up the ball when others won't
or don't do their fare share they develop this and other illnesses.

I completely resent that for a society for whom I have given so much
(and continue to at my financial and physical detriment) that in
return, they once again, try to exploit me to make a buck. We, the ill
need to be given financial sustenance in order to recover, not
continually having to pay it out. I think, as a society we truly are
only as strong as our weakest citizens and, I have to say, that I have
almost lost faith in the whole system. It is only because, again,
because of the extraordinary people I have met through this illness,
who not only try to but DO help that I don't completely walk away from
society as a whole, and, it is precisely because of all of you, out
there, who suffer in silence, who are attacked for being ill and
swindled out of thousands and thousands of dollars in hope of a cure,
that I continue to explore ways to returning to health in order to
share any victories I may achieve with you.

I truly believe our society no longer follows true Christian principles. Might
makes right, the dollar is virtue and he or she who makes the most of
it is the most virtuous and most worthy of everything. The man or
woman who sacrifices money for caring for his or her fellow man or
woman is considered weak and naive and a bad business person.
Maybe one day society as a whole may remember that
as we done unto others we do unto ourselves. I doubt it, but it's a hope."