other people

[This isnt fair]

Hi folks. Just wondering how all of you out here in torture land try and tell or explain, to everybody else that sees you when you been having a cycle,and they say, wow you look tired or you look not so good. Etc... whats you response.and do they get it? Or do you get the same reaction and answer I do. 'Oh ya ...I get those." I know damn well they have no clue.I try and smile and let it go, :-X but they look back at me like I'm the biggest baby  and cant handle a headache, or a druggie on a binge. I own and operate a pet motel and deal with people all day, and the bags under my eyes, droopy eye lid on right side and stuffed nose makes it look like I'm on the nose junk.I imagine it doesn't look good to them. I'm still in cycle and have to work everyday. I am thanking my lucky stars, that there pets have a blast here !they go home happy,health and safe, and are eager to come back. So I  have to assume the customers are looking past my droopy eye, bags and stuffed nose.

[Lee_Ann]

No one ever really understands.  I'm Hipshot's wife and supporter.  He's had these things for 7 years and taken every drug known and several surgeries.

We went to the clusterbuster convention in Portland this summer and were asked to speak and tell our story.  I sent a copy of the speech to his Mother and she said, "Dan, I had no idea what you've been going through"  She still probably doesn't really understand the pain level, but she does have a better idea of what he's been through. 

[tingeling]

David started a link about this subject. "Friends and family just don`t get it." I think reading in there can cheers you up a bit.

When someone anwer "Oh, i get sooo much worse than you, you can go around(more pace around in agony but...), i have to lye down a quiet place." You really want to smother them all over the place and scream yes..... But, if people react like this, don`t bother. Then you know they have no clue about extreme pain levels. Because when you meet people that have, no mather what caused it, they and you get it right away.

I went to kick boxing class, that helped

Over the years, a aggression level to this can build up. And since we don`t explode, it goes inwards. That`s not good either, Get it out. Scream in the woods. LOL, it`s really nice.

[This isnt fair]

I don't actually expect people to get the severity or even a slight grasp of whats really going on. I try not to even say anything to anybody about it at all, however I do get asked  whats wrong? I guess they can see it in my face. those are the times I lightly mention its a medical issue. At that point about a third ask what it is, then I have no choice to touch on the fact its head related,  then half of that third ,ask further,that's when I have to say clusters ,That's when it gets frustrating, because those are the ones who KNOW and give advice on migraines and to go lay down etc etc.. I WANT to answer by saying , REALLY!!!!!!!!!! TRY POURING SULFURIC ACID ON YOUR HEAD AND POKE OUT YOUR EYE WITH A SCREAMING HOT METAL POKER, AND HAVE ALL YOUR TEETH ON ONE SIDE, HAVE ROOT CANALS WITH NO ANTHESIA!    ALL WHILE TRYING NOT TO SCARE YOUR FAMILY!!!!!!!!!! but I don't, I just kind of look at them like, gee why didn't I think of that, say good idea and leave it at that.

[Brew]

Print about 20 copies of this, always have one with you, and hand them out ad nauseum:

http://www.ouch-us.org/chgeneral/colleagueletter.htm

[This isnt fair]

Thanks Brew, That might help a few of them get a little idea of what we endure!

[kaboom]

A rare brain disease.

That is the wording I use most frequently.  Another CHer came up with this thought and posted it.  It works well.  Sometimes I mention hypothalamus, out of remission, currently undergoing experimental medical treatment, etc..

For those well intended persons who insist on sharing their headache cure, I  smile/nod simultaneously, cut short, and exit quickly.  People probably think I have a weak bladder because I always "gotta go".

[ShellieNaz]

Hi everyone-This isnt fair..I tend to agree with Brew..but,

Lee Ann..Amazing Dan's Mother didn't have any idea what "You guy's" were going through, but not surprising! 

Tingeling-when people say to me "Yeah, Mine is soooo much worse than THAT"..I've just learned NOT to bite MY tongue off anymore..lol!  :

I think if I were running a business, it would be the perfect opportunity to educate others so I was going to copy/paste a little something at the end here..but I think Brew's "note" says it all..perfectly! Thanks Brew!!   

[This isnt fair]

I printed a crap load of the letter explanation. Thanks brew!!!!  I had started the business before my clusters started, this is a tough gig when the heads gonna explode, when I'm out of cycle its the best business in the world as far as I'm concerned

[tingeling]

I stopped pay attention. Kind of rude in a way i guess, but i simply don`t care anymore. Or if it drags out, i go for the "no, i don`t like try new things." And just laugh it away.