Posted by Cranpain (184.108.40.206) on December 07, 2000 at 23:09:12:
Since being diagnosed with CH 10 years ago, I have tirelessly sought information and help. By far, the most of both have been found on thid board. Thanks, guys, for being here. I have found, mostly in other places, lots of thing I don't need. If some who read this are prone to dispense unwanted advice, please take heed. Here are some things that I, as a CH sufferer, do not want or need:
Someone telling me that I can lead a normal life if I can just learn to "manage" or "dump" the pain. I had a doctor tell me that once. If I could dump the pain, I wouldn't have a problem. I wonder if I would have hit him in the head with a hammer, if he could have managed the pain, and carried on normally.
Some deep, philosophical discussion about how pain is not really a part of my physical being or my phsyche, but can be removed through some heretofore undiscovered process. This is all crap to an individual doubled over in agony, gasping for the next breath. Save it for the airheads sitting around the preppie bar, spending Daddy's money, and stroking each other's egoes.
Someone telling me I should be glad to have what I have rather than what they have. That's just stupid.
Someone telling me, "Oh, I get headaches, too. I take Stanback,etc., for mine". I know you've all heard that one.
Ignrant doctors who refuse to bone up on CH, and prescribe the latest medications. I spent eight years taking stuff for the "M" word, not knowing better. I was seeing one of the area's leading neurologists at the time.
People who tell me exactly how I should treat my condition, who have no medical expertise. I think it is fine to post information about what works for you. I glean every detail from this board. But to tell others that they should do exactly as you do is not necessarily the right answer for them.
People who slam others for their own personal treatments. If you wish to stand on your head and crow like a rooster, or bury a dead cat in the fork of a road at midnight to help alleviate your pain, that is your concern, and I will leave you to it. I have seen some things posted here that I would never do, for various reasons, but far be it from me to dissuade you from what you think best for yourself, short of personal harm.
Someone who feels sorry for me. I don't want pity, just understanding. I may seem irritable, angry, whatever, but I'm just hurting. Just let me hurt. I'll get better, hopefully. I can't choose when to hurt, how bad to hurt, or how long to hurt, just to endure.
Finally, I sometimes wish I could go into a doctor's office during a bad one, pull out a plug, attach one end to my head, the other to his/hers, and transfer the pain. Then mere words would not have to suffice anymore.
Again, thanks for being here.
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