Posted by Donna (63.14.15.228) on August 12, 2001 at 22:32:39:
sufferers---------
Kip 1 and 2-combination of fear and dismay that loved one is going into a headache. We know it is coming before they give any verbal warning - just look at that eye turn from white to dusty pink to red.
Kip 3 to 6 -Helplessness and sometimes anger when they start getting aggitated and talking in a fashion that scares us. Anger is the flip side of fear. When it's over, we do not feel angry anymore.
Kip 7 -Sneaking around as quietly as possible, but not far enough away that we can't peek to see if they are all right. We are now hurting pretty badly ourselves. I guess you can liken it to heartache.
Kip 8 and 9-Wishing and begging a Higher Power to put an end to this, cursing the Beast, wringing your hands, watching the clock, wondering if it's time to start the car, sweating, nervous stomach, panic.
Kip 10-Driving to the ER. Wonderment at how much they can endure. Loving them so much. Bitter toward and cursing the fate causing their pain. Counting the days til the cycle should end. And finally, relief that his/her pain is gone for now.
I've been on both sides of this fence, having suffered clusters for 28 years and now being a supporter for my 31 yr. old son.
Many sufferers fear looking weak, sickly, less of a person, unloveable. This is not how supporters see their stricken loved ones. It is a shared (or should be) part of your lives together. No one asks to be stricken with any kind of affliction. It can happen at any time to anyone. Make the most of the good time that you share. Talk openly about your feelings. Do research together and discuss it.
For those of us who suffer these headaches alone -if you are tough enough to have endured your first full blown clusterheadach, you will make it through the rest. They won't kill you, although you will wish more that once that they had. Sure it gets old, but you've got to have a plan. If you don't have a dream for your future, something to strive for, then you won't have a future.
The next time that you are out of cycle, set a goal for yourself. Plan the steps that it will take to get there. Mark your progress. Give yourself some hope. Life will actually be productive and you will be proud of yourself.