Posted by gary (209.187.112.219) on February 06, 2000 at 16:57:16:
there have been some VERY VERY valuable posts in the last day or two
some in what they said directly, and some in the implications
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the following is my OPINION, based on MY experience in the last 30 years of CH AND on some pretty intense info swapping here on CHMB for nearly 2 years now:
We cannot accurately see how "bad" our CH case is UNTIL we find away to pick it apart from the effects of our behaviors that may hurt or help it, AND take a look at our medical activities (drugs etc)---
MAKES EM WORSE:
trying to "fight" them, deny them, work/play in spite of them - that is, the "tough guy" routine;
heavy schedules of extremely strong/toxic medications they used to try before I said NO MORE !:
lithium, prednisone, inderal etc
consuming alcohol
allowing myself to get emotionally "worked up" - about anything, including the CH
not getting enough sleep because I tried to have CH, work a 60 hour job, be a family member, etc all at once
excesses of exercise above and beyond my "normal" routines
THINGS THAT HAVE & DO HELP MAKE THINGS BETTER:
slowing down my schedule & expectations upon myself
using the least toxic drugs, in the smallest quantities possible, to keep the CH MANAGEABLE, not trying to eliminate all pain, from all attacks, all the time (now pretty much rely on antihistamine, oxygen and occasional cafergot (ercaf), melationin to help sleep - very satisfied with results, compared to "bad old days")
doing my best NOT to engage in emotional/mental extremes
no alcohol, anytime, in any quantity
maintaining steady, moderate exercise ESPECIALLY OUTDOORS, but avoiding extreme exertion while in a cluster
deciding to just ACCEPT the fact I have this, and then do my best to take a positive approach in dealing with the symptoms when they present and build a life that allows me to have CH (not such a stupid comment - how many of us really HURT ourselves raging against this ?!?!?!)
(a lot of people don't understand "acceptance" - it doesn't mean give up, it means don't waste time & effort trying to make something that IS into something that ISN'T, rather learn how to deal with it)
I think quitting smoking helped, but can't be sure
DROP OUT as much as possible from the manic American, rush rush, materialistic, work hard, play hard, spend hard mentality - not as a sacrifice, but as a positive change in the value of my life !!!
(I KNOW Americans aren't the only ones who do this - we're just the worst and probably the only ones whose complete society is BASED on it - - in this day & age I suspect it can apply in any so-called "developed" nation, so you Germans and Frenchmen and Brits better look close as well !)
what I'm saying is this, short form:
I KNOW from reading 10s of 1000s of CHMB posts,
that a lot of people are doing "all the wrong things", thus adding MORE pain & suffering to what CH brings anyway, and then blaming it ALL on CH.
(See AMY's post a little way down the ist for a REAL GOOD START !)
If anybody has HONESTLY given a few years' real effort to the sort of things I listed above, and STILL sees things getting worse - I'd be astonished.
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I AM EAGER TO DO WHAT I CAN TO HELP, DISCUSS, Etc, this with anybody who is sincere about the effort...
EMAIL ME whenever you want to question, share experience, or just link up
BUT: if you're one of those who "have heard this all before": and just want to argue about it, fine - - but do it with someone else,
UNTIL you've tried it BOTH ways, you don't know what the hell you're talking about,
and it just wastes both our time.....