Excuse me for butting in this converstion but, as an OT I'm especially
interested in this topic and not just for folks with cp.  People with other
conditions suffer from chronic pain also, such as arthritis, Reflex
sympathetic dystrohy, chronic fatigue, etc.  And it sounds like some of you
have a double whammy of these disorders.
Have you thought about using energy conservation techniques to at least
make your day last as long as possible?  And if so, what are some of your
techniques?
Energy conservation techniques can be as simple as moving everything in the
cupboards down where you can reach them, sitting instead of standing, etc.

Elizabeth Thiers, OTR
email: [log in to unmask]
homepage: http://www.bv.net/~john/bethsot1.html

----------
> From: Bobby Greer <[log in to unmask]>
> To: [log in to unmask]
> Subject: Re: A really big straw
> Date: Thursday, May 20, 1999 1:17 PM
>
> Denise,
>
>         I love the concept of "getting a really big straw". Being a
former
> macho
> man, I grew up on that concept and literally hate it. For me, I was
trying
> to impress people who didn't really give a damn. Now, my body and mind
are
> paying
> "interest" on stuff I did for people who really were not worth it. I have
> realized that "proving myself" was almost the same as being on the "pity
> pot"; both are a form of not accepting myself and my limitations. I still
> live with a lot of "demons" in my head. The down side of this is that I
> can't do(or, more accurately) won't do anything and am miserable some of
> the time. Altering your life style as much as I have has painted me into
a
> corner of somewhat self-imposed helplessness. So, either way, pushing it
or
> giving in, are not really desirable alternatives. Does any one know of a
> happy medium?
>
> Bobby
>
> P.S. If your psychic is one Prozac, is he/she a happy medium! LOL
>
>
>
> >When I read the last few posts, it was as if someone gave me a left jab
right
> >in the solar plexus.  You guys have hit me hard, ESPECIALLY Kyle with
his
> >combination punch.
> >
> >Kyle said, "It's been very difficult for me to accept the idea that I
"can't"
> >do things that were once (not long ago) easy, so I guess I'll just suck
it up
> >until I can't stand the pain anymore. ....I think what gets me more than
> >anything is the rapidity with which my balance, flexibility, pain-level
got
> >bad.  If it had been a relatively gradual process I think I could have
coped
> >better emotionally.  I get to thinking, "Sh*t, if it's this bad now,
what's
> >it going to be like in five years?"
> >
> >Kyle?  Could you do me a favor dear?  Please get out of my brain!  Stop
> >taking psychic dictation from my soul and putting in print for everyone
to
> >read. :D
> >
> >Whoever coined the phrase, "growing old gracefully" obviously didn't
have
> >cerebral palsy.  If I hadn't lived the first 30 years of so as if I
didn't
> >have cp, perhaps these last few years would not be quite so traumatic.
I'm
> >stubborn and independent.  Always have been, always will be!  (At least
> >that's what I keep telling myself.)  However, there is a dark doubt
which
> >creeps in and haunts me.  "What's it going to be like in five, ten,
twenty
> >years?"  The images which come to mind scare the bejesus out of me, so I
push
> >them away by physically PUSHING myself past the limit.  I'm trying to
prove
> >something to myself, and I ALWAYS end up suffering (physically).
> >
> >Kyle also said, "I was on the water only two hours or so, but when I got
home
> >I could barely move and couldn't stand up straight at all. ... I was
making
> >my body do things it really shouldn't have been doing. ...  But--doggone
> >it!--it was worth it! "
> >
> >Oh yeah!  I know this line well.  When hubby comes home and I can hardly
move
> >at all, my explanation always starts with, " I was only....."  Usually I
> >follow up with, "landscaping the yard, power washing the house,
scrubbing the
> >tiles in the shower for two hours, standing on a ladder trying to hang
> >curtains..."
> >
> >All the things a (yeech) "normal" person of my age can do with relative
ease.
> > I conveniently "forget" (deny) to take into account I'm trying to make
my
> >body do things it really shouldn't be doing in the first place.  - And
here
> >is the REALLY scarry part....  Just like Kyle, I as I shift around on
the ice
> >pack and swallow another handful of pharmaceuticals to ease the pain I
smile
> >to myself and think, "Yep!  Dog Gone it!  It was worth it! "
> >
> >By now you are probably wondering where "A Really Big Straw" comes into
play.
> > Well, the wait is over.  Kyle had said, "I guess I'll just suck it up
until
> >I can't stand the pain anymore."  He went on to say, "The other thing
that
> >sucks is that if I take enough pain-killers/antispasmodics to let me
> >hunt/hike/fish without undue pain, then I'm not really being safe."
> >
> >Ah yes, "sucking it up."  But you see here is the problem, with the
passing
> >of each year, I find I need a much bigger straw.  I too "suck up the
pain"
> >ignore my body's wailing pleas to stop, ... Stop, ....STOP!  Under the
docs
> >suggestion, I've gone the last two weeks without the pain killers.  Of
course
> >I have been taking the maximum dose of aspirin available.  I also
noticed I
> >still work myself like a beast of burden, except now, I'm suffering all
the
> >way through and after (instead of just after).  I too have been doing
things
> >under the influence of pain-killers, only to find out later I did get
hurt,
> >just didn't feel it at the time.  You know?  Smashed myself with the
shovel
> >in the garden, or cut myself with a knife only to find out it was a
really
> >deep and dangerous cut that just didn't hurt so bad.  I even broke my
toe,
> >but didn't think it was bad since it only hurt a little bit.
> >
> >So?  What was the point of my post?  Your guess is as good as mine.
Maybe
> >like Trisha's friend, I needed to vent.  I hate to feel my mortality and
the
> >limits of my abilities. [One of the down sides to being an ego maniac
with a
> >God complex :D]  When reality sneaks in and hits, it hits hard.  -
Anyway,
> >thanks for letting me vent.  And Kyle?  Don't worry about sneaking in
and
> >taking a peak at my soul.  In fact, I find much comfort in knowing I'm
not
> >the only dope out there who doesn't listen to their body and of course
common
> >sense :D   - Denise.