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Title: understanding........ Post by cootie on Jan 2nd, 2007, 2:41pm Do people understand "your" pain ? Forgive me if this has been brought up many times before but there are sum NEW folks here......anyhow......do people GET IT and maybe why you mite not want to participate in events or things ? Do they just think you are givein an excuse to be lazy or unsociable ? Seems no one I know even comprehends how I mite feel.....they expect me at all the outings and events with 'bells on' ready to yak and yuck it up and smile smile smile and be miss sociable. And when I do go cuz I HAVE TO I am NOT myself cuz I don't feel like bein there and ache or hurt BAD....so......am figureing I am goin to get the big bitch unfriendly award at home if it keeps up ! Is it selfish to jus want to lay low a while ? Total achey pain'r Pam Jus curious how you all deal with it and friends and events. I love to go out and do stuff.....but lately have gotten too deep into my own aches and pains to want to. (for now at least.....winter cold and dampness adds to it I am sure) Thanks guys for any 'VIEWS' on the subject....... PS: almost forgot to add....I am a supporter and dont' have CH......(Brad does tho and still in remission !!!!!) I have other chronic crappy pain issues...... |
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Title: Re: understanding........ Post by seasonalboomer on Jan 2nd, 2007, 2:56pm Some do, some don't. Outside of close friends and family, which all seem to "get it" when it comes to CH for me, I don't expect others to understand. And when I say I "don't expect them to understand" I don't mean that in a negative way. I simply don't expect many people to understand. Why would they? Hardly anyone knows about this condition and even fewer have actually personally experienced pain on this level --- so I'd have to be expecting an awful lot from others in that case. But, like you are for Brad, my supporters and friends know that if I say that I can't make a particular event because "I've got really bad brains right now" -- they know I'd be with them if I could. scott |
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Title: Re: understanding........ Post by brewcrew on Jan 2nd, 2007, 2:57pm Here's the way I look at it, Pam: Everyone around here understands it. That's a given. My wife (who is also my best friend) understands. I try not to consider that a given, but I do take her for granted far too often. A few other people in my life attempt to understand, although they've never seen me get hit. They believe me when I tell them that it is some of the worst pain known to mankind, and we leave it at that. Everybody else - they don't understand. They are too involved in their own problems, and I try not to fault them for that. I try like the dickens not to be an "in your face" kind of guy. As a result, my circle of friends is pretty small, but I prefer it that way. |
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Title: Re: understanding........ Post by Sandy_C on Jan 2nd, 2007, 3:03pm Doesn't matter what kind of pain you have, CH or other pain issues. If you don't feel up to being a social butterfly, don't go. The family and friends who may know what you are going through, understand (or at least SHOULD understand). The others - who cares. When I'm in cycle, I limit my outings to those with close friends or family, who will understand immediately when I have to bail out . If I've had a rough go, and am exhausted, I stay home and veg out in front of the TV. (missed a lovely New Year's Eve party on Sunday night). They understand that too. Do only what you physically and mentally feel up to doing. No more, no less. Be selective in your social life. Stick with those people who know you, who care about you, and who understand when you can't be with them. Best of luck Sandy |
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Title: Re: understanding........ Post by chewy on Jan 2nd, 2007, 3:49pm The closest anyone who does not suffer CH can get to understanding the pain would be to witness a sufferer in the throws of a KIP 9. Guaranteed to leave a mark. |
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Title: Re: understanding........ Post by tanner on Jan 2nd, 2007, 4:06pm Easy one to answer for me.......NO Don't want em to! Wish so many of you didn't! My love Linda held my head and used ice and her entire being to keep me from smashing my skull on the pavement, outside in the rain at 3:00 am yesterday as I brought in the NEW YEAR with a solid K10. And she will be the first to tell you that she doesn't understand. I don't understand "them" "the supporters"..... I woke her up and she took control and got me out of my neice's house and did everything right. And when it was all over 2+ hours later she thanked me for waking her up! My utmost love and respect to all those who support us. I won't lie and say I am strong enough to handle this any more on my own.........Tim |
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Title: Re: understanding........ Post by Karla on Jan 2nd, 2007, 4:15pm I agree with Sandy C and ditto everything she said. |
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Title: Re: understanding........ Post by JeffB on Jan 2nd, 2007, 4:40pm on 01/02/07 at 15:49:43, chewy wrote:
Well said. I have family who knew what they were but never imagined until they saw me on the floor curled up screaming. Now when I visit they ask if I am in a cycle and if so what they should have on hand. On the other hand I've had friends flat out tell me that if I have been getting "those" headaches maybe I should not visit. LOL. I do have a buddy that would pop open a beer and get settled in for the show if I ever gave him a chance. I really don't care who understands and who doesn't anymore. Outside of this place, it just doesn't matter. Just my 2 pennies. |
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Title: Re: understanding........ Post by Paul98 on Jan 2nd, 2007, 4:45pm Most of the folks I know (friends) know about CH and I have educated them about it. As for being afraid of living life...If I get hit I get hit...If I don't have meds at hand I know it will pass. The Beast no longer has control of my life. I do! For the first 10 years of my life with CH I was undiagnosed and had no meds. I did fear it then. Once I understood what I had, educated my self, and realized Ch was a part of me it no longer had a hold on my life. The Beast dosn't like my tricks. He hates standing in a -20 freezer for 15 min. runs from the trex I poke him in the eye with and really dosn't like my fuck you attitude. ;;D -P. |
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Title: Re: understanding........ Post by Cathi04 on Jan 2nd, 2007, 5:02pm Paul, I really, I mean REALLY like your style man!' The beast will never ruin your life, and I know he tries!! You have the quintessential Clusterhead's spirit, and it's good! I know there are plenty of times when he could break you down, but you won't give him that pleasure! Pammy-coots, as for you, you are always a bright spot. If that is not how you are feeling right now, that is fine. Do what you can to fix yourself back up, but, like a Clusterhead, you keep fighting, girl! You have a ton of living yet to do, so, ride with this for a while, gather tiyr energy, then FIGHT!!!!!!!!!!! YOu AND Brad are the lampshade kids, and I don't want any pain to interfere with that. That's all I gotta say about that, now, wishing you BOTH PFDAN! Cathi |
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Title: Re: understanding........ Post by Kevin_M on Jan 2nd, 2007, 5:06pm on 01/02/07 at 14:41:50, cootie wrote:
Just a small story. The girl next to me at work was tops in the whole place but a period passed where she was very distracted, coming in mornings tired, looking messy even. She said nothing awhile then one day another girl asked and I heard "My husband..." I tuned out thinking it was conversation another woman was fit to address. Another morning she came in, slammed things down on her desk and put her head in her hands saying, "I can't take this anymore." Again, another girl asked and I heard the words with tears in her eyes "all night", "ER again" and "headache". Suddenly I turned and asked a few questions. He has had CH and treatment has only been prescribed narcotics. We have been best of co-workers since and when I get hit at work, waiting for the med to take affect, she very well understands and is a big follower of "certain" info, doing all she can preventing the next cycle for him, so far so good. When someone deals with the same affliction, there can be LOTS of understanding. I kept it from her and she from me previously but we both know now we are definitely there for each other. She was relieved I knew what was happening too. |
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Title: Re: understanding........ Post by Kevin_M on Jan 2nd, 2007, 6:29pm on 01/02/07 at 15:49:43, chewy wrote:
Totally agree too. A first impression, my brother couldn't keep his eyes on the road, asking if I needed a hospital, not visually believing my murmurs of "I'll be fine". Said seriously that was tough to watch, asks about them most whenever we meet now and if I have medication with me before we go anywhere. |
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Title: Re: understanding........ Post by Charlie on Jan 2nd, 2007, 6:35pm I had one friend who was a nurse. He got it as he was familiar with them when he worked at a State hospital. He made things easier than one doctor that said: "They can be very painful." http://www.netsync.net/users/charlies/gifs/spock eyebrow.gif Charlie |
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Title: Re: understanding........ Post by jimmers on Jan 2nd, 2007, 7:36pm I learned one thing this past year. "I can't be all things to all people!" Took me 43 years, but I finally figured it out. Other people: "Help me, Help me, Help me, I really need your help!" Me: "Can you give me a hand?" Other people: "I'm kinda busy" Jimbo |
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Title: Re: understanding........ Post by Paul98 on Jan 2nd, 2007, 9:08pm on 01/02/07 at 19:36:54, jimmers wrote:
Jim, I I have a big "L" in crimson on my forehead.... Nuff said............ Mr -L. |
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Title: Re: understanding........ Post by KingOfPain on Jan 2nd, 2007, 9:36pm No. |
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Title: Re: understanding........ Post by Kevin_M on Jan 2nd, 2007, 10:14pm on 01/02/07 at 14:41:50, cootie wrote:
I cannot find it within myself to disregard those I've found who have, like the noticable many and helpful from this board, being perhaps myself one of the least medically knowledgable. |
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Title: Re: understanding........ Post by Dragnlance on Jan 2nd, 2007, 11:15pm I can say, no, not really. I can also say there are a lot of people around me that have an understanding of pain, just not what I have. They are wise enough to know the difference, and just be my friends. They are understanding when I cannot make it for planned get togethers and such. They dont hold it against me or make me feel guilty. They are friends. I cannot ask for more. Like Tim, aka Tanner, I would not have lasted long without my wife as a supporter. Dragn |
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Title: Re: understanding........ Post by Woobie on Jan 3rd, 2007, 9:58am nope and until they have an illness.....they wont. i understand what you mean, coots. Been there, do it... no one wants to hear about it - and if they DO listen, when you leave, they talk behind your back saying what a whiner you are - cant be that bad - just lazy.. whatever. But OMG - that same person - years later - gets something similar, and you're the FIRST one they talk to... but they never apologize for talking shit. human nature........... they CANT understand.. they have nothing to base it on. it sucks cootie, but there's my experience with it. the most compassionate people in the world are the ones who have something already and have been there, or are close to someone with problems. I know that I was not a compassionate person before... (but I HAVE made apologies.. :).) smooches - woobs :-* |
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