Posted by Jackie M. on November 20, 1998 at 00:40:46:
In Reply to: in search of a little moral support posted by Tami on November 19, 1998 at 22:37:35:
Dear Tami, It is hard being a woman suffering from these monsters; it's difficult to find another woman whom you can confide in and discuss the problems particular to woman that arise from clusters. Thank heavens for this safe harbor. I understand about the "concealment" issue. It does only make matters worse for you; people think, "she looks alright, why can't she keep her house clean and feed her family tonight?" But the fact is, it's probably the lesser of two evils. To reveal the pain tends to turn others away from you, or cause them to suspect the validity of the pain, ie; "Oh, it can't be all THAT bad!!" I've given up on trying to make others understand. There just doesn't seem to be an adaquate way to help those who don't suffer, relate to this hellish pain. The best I could ever do was describe it like the "ice cream headache" some get when they gulp down a big scoop of ice cream. But that doesn't begin to convey the pain of the guilt, debilitation, humiliation and torture with no end in sight. I did have to leave a job I loved dearly. I worked with elementary school children, in charge of a before school program. These young people depended upon me, and I simply could not give them the 100 per cent of me that they deserved when I was suffering cluster attacks; I'd be doped up on meds or busy breathing heavy to get past the pain. The level of pain I experience is just simply incapacitating, and to feel useless and dependant because you can't hold down a job is the ultimate insult. DEAR Tami, I know what it is to be "just so tired." Hang in there, and in the midst of the next cluster when you are pacing alone in the dark of a room far from those whom you don't want to wake with your pain, reach out and grasp the sincerity of our compassion; your comrades in the cluster fight. God bless you.