From: andreaf@bonnie.Rational.COM (Andrea Frankel)
Subject: Re: (no subject given)
Organization: Rational
Date: Thu, 19 Nov 1992 00:35:06 GMT

LANESE@JCVAXA.BITNET writes:


>As I read through the mail, I notice that perhaps we might be going to
>extremes trying to find a cure for our illness--like herbs, vitamins,
>dental amalgams, not to mention all the medication we have been given.
>Maybe we should resign ourselves that we do have a chronic illness ,
>and we should try to psychologically cope the best we can until there
>is a proven cure.  I think the best tool we have is the mind.  We can
>tell our mind to believe anything.  There are mornings when I feel too
>weak, tired and achy to get out of bed, but I eventually force myself
>to work everyday.  I know this illness is debilitating, but I refuse
>to become an invalid.

Hi, folks - I just discovered this newsgroup!  With the help of my latest
doctor (a real gem - he specializes in chronic disease and preventive
medicine), I have figured out that I've had CFIDS and fibromyalgia since
childhood.  It got really bad about 8-9 years ago, and has been a real
roller-coaster ride ever since.

It is sometimes difficult to strike that balance, between denial
(believing you can think yourself out of the disease) and obsession with
being a victim of the disease and/or finding a cure.  What helps me more
than anything with the mental aspect is the Serenity Prayer, used
commonly in 12-step groups:

	God, grant me the serenity to accept the things I cannot change,
	the courage to change the things I can,
	and the wisdom to know the difference.

What I *cannot* change is having this disease, which from everything I've
read seems to be an autoimmune disorder that is unlikely to have a real
"cure".  What I *can* change is my attitude towards it, eating,
exercising, resting, following doctor's suggestions, etc.  In other
words, I focus on managing the best I can, rather than hoping futilely
for a cure.

Likewise, it is often difficult for me to judge when I need to push
myself to get out of bed and into work, and when it is wiser to give in
to my body's demand for more sleep.  I've found that I cannot fool Mother
Nature as far as running on too little sleep - if I wake up after only 6
hours, it's practically guaranteed I'll need a nap after breakfast before
being able to shower and dress.  And sometimes, I'm just too damn
fuzzy-headed to be any use at work, so I have learned (the hard way) to
give myself permission to be home when that happens.  (A large part of my
attitude adjustment has been to get those internalized voices of Dad and
Grandmom to shut up - you know, the ones that say "get out of bed you
lazy bum", "pull yourself together, you pathetic hypochondriac", and
other critical and nonsupportive things.)  I do push myself a little when
it seems that I've had enough rest and exercise, and might be able to
do something useful if I got; on the other hand, there have been days
when I leave work after an hour because it's obvious I'd do more harm
than good!

I'm very, very fortunate, in that a flexible-hours part-time job sort of
fell in my lap, and as long as I can hold onto this job it's relatively
easy to deal with the CFS.

One thing that struck me in the CFIDS Assoc. material was that those who
successfully adjust to this chronic disease have learned to "turn down
the rheostat on their life".  True, true.  My husband asked me the other
day what my dreams/goals for the future were, and I realized that part of
my adjustment to CFIDS was in consciously not having any such long-term
goals.  I only use them to beat myself up with.  So now I'm taking it
"One Day at a Time".

Some other random responses to the notes I just skimmed through:

Unhealthy rooms can be helped greatly by using large amounts of
Non-Scents (some kind of expanded clay pellets) which absorb both the
fumes you can smell and the ones you can't.  You buy twice what you need
and recycle them by leaving them out in the sun for a week to release
what they absorbed.  I use a bag in my car.

For the person whose office was getting its air intake from a storeroom:
I'd be very surprised if that met OSHA/environment health and safety
codes.  

all for now - take care of yourselves.



Andrea Frankel (andreaf@rational.com) -- Rational, Grass Valley Office
"Wake now!  Discover that you are the song that the morning brings..."

Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU