Posted by Elaine (64.34.202.197) on February 01, 2001 at 18:07:29:
In Reply to: how am I supposed to live with this? posted by Nick on February 01, 2001 at 15:31:32:
I have been chronic for 21 years, and made it. It was not easy but I did it and you can too.
Below is a letter that helped my family and friends understand my pain. Maybe it will help you.
Drummer wrote my family a letter when I first came to this web site it helped my family understand the pain.
I would like to share it with you.Below is his letter.
Dear Family,
People who have clusters do not have headaches. They have a Demon in their head that tortures them relentlessly. The pain is very difficult to describe. Their head does not throb like normal headaches. The pain that they feel goes through, not only their head but their nose, lower jaw and eye.
Now pretend that five people come at that person with rusty barbed, needles, ice picks, hot pokers and tweesers. Pretend that you can not see these five people. Pretend you can not touch these five people. Pretend that these five people take their tools of destruction and they stab and poke and pull and scrape at that person gums, eye, nose and head. Pretend that person can not do anything about these five people. All that person knows is that when it starts it won't end for an hour or two. Pretend that when these five evil people are done torching that person they simple leave and wisper in their ear that they will be back.
Pretend that this is real! People who have clusters know it is real! Only people who have clusters know this torture. People who have clusters have done nothing to deserve this tourure.
Drummer
I keep this letter with me and when I try to explain clusters to someone I give them this letter. They then seem to understand. Thanks Drummer!