Posted by gary g (208.133.221.198) on June 24, 1999 at 09:54:19:
In Reply to: My Opinion posted by Buddy on June 24, 1999 at 03:11:22:
good for you Buddy !!!!!
and the inverse is true as well -
no way can I imagine what it is like to have to weave one's life around somebody who rides the CH rollercoaster
if there's one thing though that I'd want supporters to understand, it is this:
when we CH'ers are deep into it, the intensity of the recurrent pain attacks, and the cumulative exhaustion, despair, mental fatigue, etc of the continuing cluster really DOES change us as persons -
it takes/puts us in a very elemental place, where just getting through the pain attacks and trying to get a little peace, food & rest in between is ALL THERE IS
early in each cluster I usually put a lot of energy into trying to "make up" in between attacks, for the disruption the attacks cause, and the normal activities of the family that I am forced to just let go
as the weeks and months wear on though, it becomes all I can do to just stay on the planet, and I get a feeling that the rest just doesn't matter - not because it shouldn't matter, but because it can't ..........
people who have been very near death through serious injury, weather exposure, ravaging disease,and other physically punishing routes, often say there is a point where "it just doesn't matter any more", one way or the other, whatever happens is whatever happens ....that's where I go when it's been long & hard with the CH
I get to the point where I spend many many hours just sitting in my big rocking chair, trying to soak up a bit of brief inter-attack relief, and all I have to offer the wife is one of those little droopy faced slow headshakes which means "no attack right now" and/or the lumpy little shoulder shrug that means "who the F...knows what's next, but there's not a damn thing I can do about it, see you after this goes away"
I'm NOT NOT NOT talking about giving up the war, rather just surrendering the battle for the time being, so I CAN get through and keep on truckin',
THAT'S a big big difference,
and to ME it's how I get through them and survive intact enough to really cherish and make the most of remission periods (like now)
I often feel that the folks who risk suicide with these things are trying to BEAT the SOBs, and feel that hope is gone when they can't...I UNDERSTAND that, and have been there myself a few times.....I somehow seem to have learned that for me, the way to AVOID that depth of despair is to accept and let it be OK to be pounded this hard, and be this useless ....the trick is to know it's JUST FOR NOW...sounds impossible, and it is IF you dwell on it being that way, but as soon as we give it a little chance, it seems to work out better
What Does This Have To Do With Supporters?
it also gives me a chance to realize just how unconditionally loved I am by the most important family members and a few close friends -
there is nothing "in the book" that says they have to redirect their lives periodically to deal with this friggin' mystery demon, whose clawing grasp reaches beyond just me;
it isn't theirs, they didn't cause it, and they are under no obligation to reshape their days to accomodate me
but they do......
thank god they have the wisdom and patience to look at it in the long view and see that on balance, over time, our burdens aren't all that bad
and when I'm "right-headed" I can't do anything but stand in awe of the unwarranted, unmerited gift of their love & devotion
god working through people
think CH is trouble ?
just turn on the TV news and watch the Serbian business
I'm not complaining about CH - believe me !!!!!!
best to you all today
make it the best day you can
gg