Posted by RB (184.108.40.206) on October 29, 1999 at 17:33:11:
Beast AND Burden
The Beast can be defined in at least two ways. Most of us have come to call the excruciating, nightmarish agony known as cluster headache, “The Beast. “ The other “Beast” is each one of us while suffering, and even after an attack. We are like wounded Rhinos, even making noises like a wild animal that is injured, scared, and angry enough to attack anyone that unwittingly crosses our’ path. This can be extremely unfortunate for us as social animals, attacking other people that we all agree DON’T understand what we are going through. It can be such a Burden to live like this. How many of us have said to our spouse, children, parents or friends something mean and ugly that we really don’t mean? How many of us have seen the sadness in their’ eyes wondering why someone that loves them acts so hateful to them? How many of us feel the regret of not being able to explain in simple language what the Beast is like, and the frustration of not having even one person understand when we try to explain? The Burden also hits at work. Shame forces us to cover up for our’ excessive absences and create new excuses for our’ sleep depraved appearance. The Burden may take the greatest toll on our’ self image. This may be the one factor that sets this disease apart from all others. Having cluster headaches is almost like having manic depression. The manic phase is what we refer to as remission, or between clusters. We seem normal enough on the outside. Sometimes we laugh. Sometimes we overcompensate for the guilt associated with the damage we did to our’ relationships during the last pain cycle, and are too eager to socialize. We actually sleep through the night. We are playful and sometimes even fun to be around. Then the depression hits us hard as we realize that the shadow is back and soon we will be reduced to a shell of a person, whimpering and writhing in pain. Banging our’ head, pulling out our’ hair or screaming obscenities about how unfair life is. We fear sleep, because that seems to be when the Beast is certain to attack full force. It takes all of our’ energy to fight the pain and anguish of a cluster. There is nothing left to function between the headaches, so we just wait for the next round like a boxer who is totally outmatched but refuses to stay down, always answering the next bell only to find that the Beast is as fresh as the first round. Yes, it is both Beast and Burden.
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