Quote:


some thoughts..please don't jump on me..

is there any chance we are sending mixed messages out there so that's why we are not being understood?

others no matter how close they are won't ever really get into this pain.But i catch myself many times in the past that i never really opened up to people about this.even if i was hurt i never stood up for myself.Maybe people will relate only with our feelings about this.

and one question that bothers me
is if i have really accepted this.i mean if i have this neurological disease how do i really introduce myself to others.

am i a normal person with some random very painful hits everyday or an affected person with some painfree moments?

just some thoughts 

Joni has made the most important point yet on this discussion. I too am episodic. So although I understand the pain, anxiety, lack of sleep, paranoia when away from my home and comfort zone and so forth, my hat is still off to any chronic sufferer. My only savior is reminding myself it will be over shortly and I can look forward to a break. Chronic sufferers take a bow. I can't compete with you.

"Tough love", Potter?  You know, crap like that is why I quit coming to this board for a couple of years.  Can't you see she's a newbie, in pain, and is wanting some support?  Honestly, if you can't support someone why even post?   

EchoGirl, I'm retired from the military, 50 years old, in great shape (if I do say so myself), and I've had the same reactions as you're describing:  "How can a headache come on so fast?"  "I get migraines but I still come in to work."  "Have you tried Exedrin Migraine?  They work wonders."  "How can someone like you let a headache wear you down?" 
I finally came to understand that THEY just don't understand and probably never will.  Even my wife doesn't get it.  So, I've got to where I just don't mention it to anyone.  I sneak out of bed when I get "hit" to try and hide them from my wife and I don't talk about CH to my friends.  I've got enough vacation and sick leave saved up at work that, when I feel one coming on at work, I can take off with a made up excuse.  (Those are actually the best.  I can come home, my wife is at work, and bang my head on my favorite spot with no fear of being questioned or accused of "over-reacting."
Finally, don't let some of these grandstanders on here get you down.  They'll throw their great "cures" at you, talk about how bad THEIR headaches are, or how they get through them by being so tough.  Ignore them.  Get a few of the ones on here who understand and have them PM you or send regular email. 
Or, do like I did...ignore the whole bunch and just use this site as research.   = )    Whatever you decide, Good Luck!!

Asa wrote on Dec 9^th, 2009 at 2:07pm:

Define "support."

Hey, LeLimey!  Don't get me wrong...I never said EVERYONE on here nor on the outside.  I've seen some great posts on here from supporters and I'm sure there are people outside of this circle who would understand.  I was just talking about my circle, the experience I had on this site, and the reaction Echo was getting from some of these trolls.  "Toughen up", "Define support", "stab them" and crap like that is not what she was looking for. 
Sure, I'd be glad to meet some of you half way, heck...more than half way.  But like I've said before, I don't need the sympathy.  It'd just be nice to come on here and talk about these things without others playing psychiatrist or doctor for a change.

Potter...what the hell are you talking about. Asa never said anything about taking Excedrin or aspirin. He was talking about others saying that to him.

Here we go.  This is whaqt I was talking about, LeLimey. 
Potter, are you illiterate?  I'll explain this one and then ignore you and the other old jerks like you.  I never said take an aspirin.  I put those quotes around the statements made by friends and coworkers about my having CH.

Asa-
It would be to no avail to simply read only one perspective on this site (or any site about any topic, for that matter)!  If you choose to only read what you know and only agree with what you think, then you are  certainly free to do so, but you will be limiting yourself.

People are very different, not only from each other, but within themselves during different stages of their lives.  We all have much to learn from everyone in all those stages.  I have never met anyone that I didn't learn something from and I am grateful to all of them, whether the lesson was positive or negative.

If people came to this site and only read one type of thread, in your case...a desire for comfort, then much learning and modeling would go unlearned.  Each person on this site has a different life experience and a different view of their situation at that given time.  Someone will benefit from all of them, even the posts I am not fond of have taught me something, or reaffirmed something.  It is good that we wear different hats.

The message I can give at this point in my life, today, is one of strength from my own life experiences.  I am a compassionate person by nature, but I think the message of strength is just as important.  It was comforting for me to see that people did live their lives normally with these headaches, and I hope that people, even newbies, take comfort in knowing that I have had a successful life and career with them as well.  There were, and are, times I still am scared and need comforting but I know that there are people on this site that do that well, too.

Hopefully, we each give our best and someone will need whatever that is at that time.

Joni      

Simply a reminder to those new to the site, or those who have not been here in some time.  Please review the "Standards of Conduct":

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Specifically,

"Calling a member 'troll' or using 'troll' or similar emoticons is considered a personal attack."

Perhaps, in this case, the term is not directed at any specific individual, but the fact remains that we don't do that here anymore.

Many thanks.

Best,

George

ETA:  Thanks, Helen.  You beat me to it.   

Quote:


Name-calling is against DJ's rules and is spelled out quite plainly in the code of conduct also. 

No Joni....it wasn't you. Just 2 old bulls in a pissing contest.

I don't know what vietvet was aiming for, but I sort of see a point in what he said.

Sure I would love to have people understand how painful it is and show me sympathy and understanding. I mean, some days it was all I wanted.

But then I realized - all the time I spent trying to make other people understand or "feel for me" I was just making myself into a victim. A victim that needed someone to feel sorry for me.

That was totally detrimental to my ultimate goal, which is/was to cope and live a normal life. By asking for understanding I was turning myself the handicapped victim.

Then again, sometimes you need "understanding", because it's just too much. Then this board is good because people know how it is.

I NEVER mention the CH to anyone except my wife these days. She is not very emotional/sympathetic and I don't think she really understands - but I've pretty much given up making her understand. I know she's got my back and that's enough most days - otherwise if I were to get a hit - I would probably post here about my misery until I was done feeling sorry for myself.

So I think it is twofold - both sides a right. One part for when it's bad and you need someone to listen, one part for when you need to learn to handle day-to-day life.

As far as others not understanding why we miss engagements, etc and think we are just shorting them I decided I wasn't going that route anymore, so I just went along once and let them witness a hit.  Do the understand? No.  Do they want me to come along when the HA's are hitting badly? NO.  Now they ask if I will be able to make it, or should we do it another time.

Jerry