here is the deal....im a chef in a fine dining spot here in Winchester, Va. i told my boss that i get CH. he was cool with it and said he had heard of them before. i usually have 5 hits during my 9 hr shift. if i get hit i slam a monster and go stand in the walk-in freezer til its over. ive got a few coworkers that like to joke me and talk shit because they have no fucking idea whats going on. i took the letter to friends in for them to get educated and understand a little more and all they could say is "who wrote this and the pain cant be that bad". shit pisses me off sooo much. its as if they take what im saying as a joke. there is one girl that gets migraines and knows of CH that does understand what im going through, but thats only 1 person. it just angers me how they down play the pain and tell me to "just get over it", or go in the freezer, turn the light off and mock me. as i feel a hit coming on right now. so ill leave with that.

tell your friends to fuck off! >:(

or you could stab them in the face with a screw driver and show them how it feels....no im joking. dont do that man :)

johnny they are coworkers, not friends. friends of mine understand what is going on with me because they DO care about me. i just dont see how grown individuals can be so fucking ignorant. it just baffles me to no end. i wish they could go through it just one fucking time....a hit that is a kip 10 that last for 90 min. just once so they could understand.

There are always going to be some pompous asses who will behave that way Chris.  It's unfortunate they are your co-workers, but you have to learn not to direct any emotional energy their way.  It's hard, but just remind yourself it's just ignorance, plain and simple.

Go to your boss and tell him (document) who said what when and that it's on-going, only contributes to your condition, and tell him the 'HARRASSMENT' stops today!   

One of the more difficult aspects of CH is accepting that people who do not suffer from CH, will never understand. My best supporter, and wife of 28 years, tries harder then anyone to understand, and even she will never get it! :) (And i thank God she never will!)

Don't waste your precious time or energy, trying to make them understand, it's like counting snowflakes, it'll kill some time when you're bored, you will never accomplish anything.

Spend your time hanging out with us and educating yourself. We'll never tell you to suck it up, it's just a stupid headache! ;)

Joe

Guiseppi wrote on Jan 24^th, 2011 at 9:45am:

One of the more difficult aspects of CH is accepting that people who do not suffer from CH, will never understand. My best supporter, and wife of 28 years, tries harder then anyone to understand, and even she will never get it! :) (And i thank God she never will!) Don't waste your precious time or energy, trying to make them understand, it's like counting snowflakes, it'll kill some time when you're bored, you will never accomplish anything. Spend your time hanging out with us and educating yourself. We'll never tell you to suck it up, it's just a stupid headache! ;) Joe

Joe you R so right....  Even those who are there for us will never completely understand.. But they are in our corner all the way...

Chris... you know; God knows; we know; and  your boss has accepted it.... Tell those who mock you [smiley=finger.gif].. their actions are a direct indication of their intelligence.

Once you gave them the letter, most people with any level of intelligence would have looked it up, rather than mock you.

If it really bothers you that much, you should go to your boss, tell him what's going on and have him call a meeting with you fellow employees and tell them what a serious condition this is and that it WILL NOT be mocked..

Peace & Blessings
Ruthie

I feel the same way, there are so many people out there faking this or that to get away with not working that it is just inevitable that someone would look at one of us and think it of us as well.
Those that we do call friends just do not want to believe there is something that could cause us this much pain and there denial is at least in the right place and even the closest supporters as Joe said will never fully understand and we don’t want them to since it would mean them suffering this as well.
We just need to except the fact that there are a lot of people out there that are heartless and will never understand what it does to someone that suffers like this when they belittle our pain and make jokes, I just try to hide my pain as much as I can to minimize such behavior from others or have to explain it yet again, it just gets old.

Tell these guys to piss on a spark plug. When they tell you how much it hurts, tell them that CH is worse. (No...I haven't)

Charlie

Charlie wrote on Jan 24^th, 2011 at 5:38pm:

Tell these guys to piss on a spark plug. When they tell you how much it hurts, tell them that CH is worse. (No...I haven't) Charlie

The mental image!!!
;D ;D ;D

Joe

Hand one a Slurpee (large) and tell him to drink it as fast as he can drink it.  When he gets a brain freeze tell him to keep drinking until it is gone.  The pain is the same, effecting the same nerve, but is only about a level 4-5, and way shorter.  If one of them will try it it may give them just a taste of what you are dealing with.  Beyond that it is pointless to try to reason with them.  The remain ignorant by choice and it shows the quality of person they are.

Jerry

its just one dumb ass m*th*rf**k*r that is an ignorant not a very nice person. and one chick that is getting ready to have a baby that doesnt believe any of it. it sounds to horrible to believe she says. AHHHHHH!!!!! they give me a fucking headache.

If it's two people getting under your skin, it's your problem. You gotta find a way to deal with it.

I know most clusterheads absolutely do not want anyone to see them during a hit. Their loved ones, family and close friends maybe, but nobody else.

There comes a time especially in my opinion, where especially those we work with who absolutely do not understand and belittle our pain, need to see just one hit.

I had explained to my boss and given my boss the letter about "this is what CH is".  He read it and understood that if I had to disappear for a few minutes, no problem, but he really didn't understand.  Until one day - he and I were writing up a presentation to a major customer when I started getting a hit.  My boss, Bill, was talking on and on while I was taking notes when I lifted my head from the paper I was writing on and loudly told him I had to leave for a few minutes.  At first he was angry because this was a very important presentation - until he saw me - with my sagging eye, tearing, running nose and clearly in pain.  He said GO!

When I came back about 30 minutes later I walked into his office with my notepad, read off where we had left off in the presentation and said, let's continue.  He was absolutely dumbfounded and never again ever questioned me if I had to take a few minutes to "handle" things.

I'm not saying go out there in front of everybody and show them your pain, but in the workplace, especially where if you are incapacitated that someone else must fill in for you, that someone needs to understand and in order to understand, they need to see.

CH is a physical problem.  Don't use it as an excuse, but also don't hide it from those who need to understand.

Sandy

my boss, today, told me we needed to talk when i went into work. i gave him the letter 3 days ago. he folded it and stuffed it into his pocket. i figured he was like whatever. but to my suprize to told me when im having a cluster attack more than once in a shift i need to go home because it is stupid for me to try and work going through that kind of pain. then he asked me why i stay at work when i go through multiple attacks in a night. i told him that i can handle it and im good. he said NO...you need to go home and rest when that happens. your co-workers see you in that kind of pain and wonder why you dont leave. so i guess i got through to some of them on the level of pain im in. im trying to hide it cuz i dont wanna leave work, but its kinda hard to do.he also told me that he cant hold this against me because its a physical problem and its ok. because i worked for 3 1/2 months without a hit. working overtime and going in on my days off and all. i think hes smart enough to understand whats going on with me. i also think he read the letter i gave him. so im cool with work now. its just been a rough month and a half trying to hide it. ive lost jobs because of this and my job is a good one. im glad he gets it and i still have my job.

I'm glad for you Chris.

Chris, good to hear your boss is being compassionate. I hope your CH cycle is coming to a close.

ChefChris wrote on Jan 25^th, 2011 at 10:18pm:

my boss, today, told me we needed to talk when i went into work. i gave him the letter 3 days ago. he folded it and stuffed it into his pocket. i figured he was like whatever. but to my suprize to told me when im having a cluster attack more than once in a shift i need to go home because it is stupid for me to try and work going through that kind of pain. then he asked me why i stay at work when i go through multiple attacks in a night. i told him that i can handle it and im good. he said NO...you need to go home and rest when that happens. your co-workers see you in that kind of pain and wonder why you dont leave. so i guess i got through to some of them on the level of pain im in. im trying to hide it cuz i dont wanna leave work, but its kinda hard to do.he also told me that he cant hold this against me because its a physical problem and its ok. because i worked for 3 1/2 months without a hit. working overtime and going in on my days off and all. i think hes smart enough to understand whats going on with me. i also think he read the letter i gave him. so im cool with work now. its just been a rough month and a half trying to hide it. ive lost jobs because of this and my job is a good one. im glad he gets it and i still have my job.

Chris, do you think that instead of going home like your boss wants, you find out if there is maybe a vacant room you can go into to dance until the attack subsides?

he said he doesnt want me there because i cant be productive. having to take 4 30 min breaks a night hes paying me for 2 hrs im not working. thats how he put it to me. its a business thing its not personal. and the hits are getting worse....the energy drinks arent working as well as they did a week ago. the intensity of the pain is getting higher and its getting to the point id rather die. my neck, forehead and my eye hurt sooo bad and thats where it feels the majority of the pain is. if it was just in my head i think i could handle it a little better. frozen bags of corn are nice, but that only feels good when my skin gets so cold it burns. and the hits are wiping me out. im getting so tired after and i cant take a nap or sleep. im getting 2 hrs of sleep a night. i take meletonin while it was helping i dont think it is anymore. i dont know what to do at this point to get through this. :'( my cycle should be coming to an end very soon but its killing me til then. i just dont know anymore. one thing i do know is that heroin and narcotics WILL make it worse so im gonna stay away from them. thats all i do know.

Wow Chris, sounded like things were getting better and now sounds like they have gotten way worse.
I feel for you brother and hope your cycle will end soon and you can be PF again. It is hard to hide it from everyone I struggle myself every day with hiding my pain and then I get upset when someone does not understand when it is partly my fault for hiding it to well. Sucks that your boss id making you go home it would be better for him to just dock you the time each night that you have to take time to deal with the hit at least that way you are still making some money and not losing an entire shift, maybe you can run that past him I am sure the financial burden of losing more hours is not going to help you.
I will be sending you all the vibes I got and keep hoping things will get better for you.

Matt

i thank everyone that has listened and helped!! its nice to have people that understand when 99% of the world doesnt!! thank you!

:)