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Title: Sufferers become supporters for the first time Post by DJ on Jul 19th, 2004, 10:37pm A lot of sufferers experienced their first cluster attack from a supporter's point of view this weekend for the very first time. I remember... way back in 1999... both Drummer and myself both experienced our first attacks as supporters. We both posted our stories of how much it affected us and thought I'd bring them back up again as they are so very fitting at the moment... Drummer's post: http://www.clusterheadaches.com/wwwboard/messages/16987.html My post: http://www.clusterheadaches.com/wwwboard/messages/19530.html As hard as it is for a sufferer to see another sufferer go through an attack but I believe every sufferer NEEDS to experience it from the "other side". Once the initial impact of seeing someone go through what you've experienced for years finally sets in, the reality of just how wonderful the supporters in your every day life are! The husbands/wives/boyfriends/girlfriends/children/family/friends... Make it a point to go out of your way to give them a "thank you" and a great big hug. They deserve it! -DJ P.S. My ex-wife "Kelly" referred to in my post is not the same person as my friend "Kelli" that was with me this weekend. Just wanted to make that point clear... LOL |
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Title: Re: Sufferers become supporters for the first time Post by Jeepgun on Jul 19th, 2004, 10:52pm *sobbing* Thank you, DJ... I can never say that to you enough... -Frank |
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Title: Re: Sufferers become supporters for the first time Post by JDH on Jul 19th, 2004, 10:55pm I agree DJ. As hard as it is to witness it gives you an idea of what our supporters go through...I'm gonna go hug mine as soon as I log off ;) Jim ps Great to see you again |
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Title: Re: Sufferers become supporters for the first time Post by Carl_D on Jul 19th, 2004, 11:16pm You are absolutely right DJ. Every sufferer DOES need to see it from the view of a supporter. It literally changed my life this weekend. On top of all that, I think many of us were also given many excellent examples of what it means to be a supporter and sufferer in people like Luke. BTW, I really miss Drummer. Maybe one day he will come out of hibernation and post again. Peace, Carl D |
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Title: Re: Sufferers become supporters for the first time Post by DaveHar on Jul 19th, 2004, 11:18pm DJ, no truer words have ever been spoken. Seeing Chuck get hit was my very first exposure. Seeing Luke at his side to make sure he knew that there was someone there for him reminded me of how much Leesa has done for me. Ramon and I racing back and forth from the hotel and the restraunt with O2 tanks to make sure he had what he needed, doing wind springs knowing that time is not on our side and that the longer we take the more Chuck had to suffer. It made me realize how special and how very very lucky I am to have a person like Leesa at my side. I realize now more then ever how very lucky I am and how much more I love her. DJ, thanks for starting this thread Dave |
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Title: Re: Sufferers become supporters for the first time Post by BobG on Jul 19th, 2004, 11:20pm Thanks DJ. I remember both posts clearly. For the newer people here the 'drummer's garage' in Rochester tha DJ mentioned was the meeting place where OUCH first got started. I can remember at the 2000 Vegas Convention a lady (Tami????) having to leave the room a couple of times. No one said a word, it wasn't necessary. Everyone knew what was happening and we couldn't do a damned thing to stop it. Really pissed me off that the lady couldn't be pain free for just one f*cking day. |
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Title: Re: Sufferers become supporters for the first time Post by Racer1_NC on Jul 19th, 2004, 11:24pm DJ is right......hug your supporter.....NOW! For me....seeing someone else get hit is like looking in a mirror. Not sure how to put this but.....it's like somehow I "link" with that person, just for a second. I feel the emotion they feel, but not the pain. Make sense to anyone? Damn....I hate this disease. Bill |
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Title: Re: Sufferers become supporters for the first time Post by TxBasslady on Jul 19th, 2004, 11:31pm D.J. Thanks and many, many hugs to you. :-* You made this all possible. So many things would not exist had it not been for your desire to seek others who suffered as you did. We are a family.....a family you created....a family I'm damn proud to be a part of. Lots of love to all who suffer, and all who support. Jean |
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Title: Re: Sufferers become supporters for the first time Post by Redd715 on Jul 19th, 2004, 11:41pm I'd hug mine but he's still driving his tired self home from Nashville... :'( I never thought I'd ever be able to let someone "in close" during a biggie, since I've always had to go through them alone. Never wittnessed anyone experience this hell besides my own reflection till this weekend. It was an experience of overwhelming love for the brother or sister, and intence hatred directed at this demon who has invaded us all. I Love each and every one of you!!! |
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Title: Re: Sufferers become supporters for the first time Post by Big Dan on Jul 19th, 2004, 11:48pm on 07/19/04 at 23:24:06, Racer1_NC wrote:
.... to everyone at CH.com... -Big Hug |
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Title: Re: Sufferers become supporters for the first time Post by DJ on Jul 20th, 2004, 12:15am on 07/19/04 at 23:31:30, TxBasslady wrote:
I'm just the one who provided the original, generic hull of a boat. All of you are the oars that make this boat "the family" it is! Don't argue with me on this one damnit! ;) |
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Title: Re: Sufferers become supporters for the first time Post by Jimi on Jul 20th, 2004, 12:26am Wipe your eyes off DJ and go to bed :) |
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Title: Re: Sufferers become supporters for the first time Post by TxBasslady on Jul 20th, 2004, 12:35am [smiley=hammer.gif] D.J.............you're the one on the left....LMFAO |
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Title: Re: Sufferers become supporters for the first time Post by Big Dan on Jul 20th, 2004, 12:39am on 07/20/04 at 00:35:40, TxBasslady wrote:
I dunno Jean... that guy on the left has a lot more threads on his grape... -Big Forehead |
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Title: Re: Sufferers become supporters for the first time Post by Cerberus on Jul 20th, 2004, 1:35am I reckon I told this to a few folks while we were there...but fer those who didnt get to hear it directly from my mouth... " I am REAL good at suffering....but I aint good at all at watchin." :'( :'( :'( The intense feelings of helplessness for a supporter are X-treme..so dont forget to recognise your supporters efforts to help. Lucky for me I never outgrew my woobie. :-* :-* Ramon |
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Title: Re: Sufferers become supporters for the first time Post by athos on Jul 20th, 2004, 3:36am I never have, I do and IO don't want to... If you know what I mean. |
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Title: Re: Sufferers become supporters for the first time Post by BarbaraD on Jul 20th, 2004, 5:45am Drummer's garage was an experience for all of us. I got there a day late, but that night I looked up and saw Kip's face and was totally shocked. It was the SAME face I'd seen in the mirror so many times. Then later, Elaine and the next night Drummer (I think I got off to myself before I got hit). But the odd thing about it was we "laughed" with each other afterwards. Thank you DJ for reminding us of the "other side". I think being a supporter SUCKS!!! Thanks to all of you brave people. Hugs BD |
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Title: Re: Sufferers become supporters for the first time Post by Jeepgun on Jul 20th, 2004, 7:40am Last night, after reading this thread, I went downstairs and just hugged my wife long and hard, and thanked her for being my supporter. Until I saw Chuck getting hit, I never realized what a supporter goes through. I guess I sort of took it for granted... She still looked at me like I was from outer space: "OF COURSE I'm here, and OF COURSE I am supporting you!" ::) LOL.. |
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Title: Re: Sufferers become supporters for the first time Post by purpleydog on Jul 20th, 2004, 7:40am on 07/19/04 at 23:24:06, Racer1_NC wrote:
Makes perfect sense to me, Bill. I understand exactly what you mean. [smiley=hug.gif] pd |
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Title: Re: Sufferers become supporters for the first time Post by Giovanni on Jul 20th, 2004, 8:21am Seeing just one was very difficult. I now really appreciate my wife who has witnessed 10 years of these things. Thanks for everything DJ! Regards, John |
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Title: Re: Sufferers become supporters for the first time Post by Kevin_M on Jul 20th, 2004, 8:24am That was a very, very difficult sight to see when it is a friend and loved one. The pain so changes that smiling face we love to see, to cringing, clinging agony which they try to hold on with. It had an immediate emotional impact. And then to see their smiling face again afterwards.....makes you love them even more. Kevin M |
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Title: Re: Sufferers become supporters for the first time Post by catlind on Jul 20th, 2004, 8:48am It's called heart pain, and the person who explained it best for me did so from a supporters stand point, and until I had experienced the supporters side of the fence her post would not have meant nearly as much. I'll take the sufferers side of the fence anyday. Thank you Jackie for the words that tell us how much our supporters hurt too. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=supporters;action=display;num=1063832550 As supporters remember one thing though, yes it feels completely helpless, and no we can't take it away for any of our family here and our partners can't take it away for us, but they aren't helpless, they give us love. Cat |
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Title: Re: Sufferers become supporters for the first time Post by vig on Jul 20th, 2004, 10:53am Try giving someone else a shot.... I muffed it up a bit as you can see! http://www.kdlltd.com/vig/heartTattooArm.jpg Looks like a damn tattoo. still sorry Pegg |
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Title: Re: Sufferers become supporters for the first time Post by E-Double on Jul 20th, 2004, 11:22am *crying* Man....... You're all truly amazing! I can't imagine what that must have felt like. I try to thank my fiance' every day and it never seems like enough(to me) as I try to thank all of you (sincerely)who ever respond to my long posts of confusion or inquiry. This is a group of people that I hope to someday meet and hug and laugh and cry with in person. Despite being relatively new here you have all made me feel so very comfortable and have been godsends!!! Eric |
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Title: Re: Sufferers become supporters for the first time Post by CarrieBethRN on Jul 20th, 2004, 11:34am Well I did not witness anyone else have an attack, although I saw many make the mad dash. However, I felt what it was like to have someone be my supporter who truly understood. I really don't have a supporter because I don't live at home anymore, and I'm at school. I have a roommate, but that's kinda a different situation. Sooooo the support from this weekend actually has helped me, and will continue to help me for a long time. To Big Dan, BillyJ, DJ, Mark, Luke, Donna, Tina, Ramon and I know other people were around with that oxygen incident, but I don't remember. :( I'm sorry!! But thanks to all of you!!! Your support in anyway helped more than you can possibly know. I'm now actively working to get oxygen set up for me to use in the lounge on the floor where I go for clinical days and also somewhere in one of the buildings close to my classes. We'll see how far I get with this!! Seeing and finally realizing how necessary this is has made a HUGE difference. Thanks Carrie/Lizzie2 |
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Title: Re: Sufferers become supporters for the first time Post by Margi on Jul 20th, 2004, 11:35am but ya know what, DJ? We supporters don't want you to see it. I know I can't speak for everyone here but, personally, I want to shield Mike from seeing it. He goes through enough with his own pain. We were with some clusterheads recently in Kelowna and a cluster attack happened. That was the first one Mike had ever seen. Seeing the pain on his face when that cluster veil came over our friend's eyes and knowing that he knew all too well what was coming too - well, that just drove a nail through my heart. A million emotions crossed his face at that moment and I knew he was in his own personal hell and was feeling totally helpless. I was so torn as to whether to help the sufferer or to go to Mike to help him. It was like they were both getting hit, yet in completely different ways. I sat with the sufferer through the attack but I knew Mike's heart was breaking as well. It was a sobering moment for sure. I hate clusters. :( |
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Title: Re: Sufferers become supporters for the first time Post by Luke63 on Jul 20th, 2004, 12:20pm I look at it this way.....a sufferer cannot be a supporter without the support of his/her peers...and this weekend proved to me how much unconditional support is out there. It's feel it's a natural built-in auto response with us don't you guys? Luke |
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Title: Re: Sufferers become supporters for the first time Post by Gator on Jul 20th, 2004, 12:23pm I have said it before, I would choose to be the sufferer any day over being the supporter who has to stand by feeling helpless. I have read all the archived posts linked here and about cried my eyes out. These posts just affirm that position. One night after a particularly severe hit with no abortives, a hit that made my wife finally break down and tell me just how hard a time she was having, I wrote this for her and posted it here for all supporters. I thought I'd post it again. For anyone who has ever supported another: Here’s to a special person At least she is to me She’s everything I need in life Just perfect as you’ll see She’s so full of love and care When others hurt she cries She doesn’t even have to know them Her heart’s so big in size She’s always there to hold my hand And say it’ll be all right I feel so lucky just to lay Beside her late at night She thinks she’s doing nothing So helpless does she feel But without her I’d not be here My life the pains would steal So here’s to someone special To know her makes me smile I thank God for my loving wife Who makes my life worthwhile Gator |
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Title: Re: Sufferers become supporters for the first time Post by Jeepgun on Jul 20th, 2004, 12:33pm Wonderful, Gator... Truly great... My wife told me that she feels helpless, and I told her, "Of course you feel helpless, but you know what? Just BEING THERE is enough; MORE than enough! Whether you're with me during an attack or not." And so it is. |
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Title: lend me yer icepick Post by rumplestiltskin on Jul 20th, 2004, 12:59pm Happens every damn time a cornvention rolls around! This place turns mushier than a Hallmark writer's bridal shower. There won't be a good flame war for weeks. Somewhere inside me I just knew that I hurt worse than anyone else. Then I married a another Clusterhead. I've seen pain which rivalled and exceeded mine. Confession: Georgia also gets Migraines and a host of other almost daily headaches. Every once in a while I get jaded to them. "Shit...it ain't a Cluster" After years of constant ...and I mean 24/7 headaches...I watch her work, play, go on stage etc during the pain with an endurance that baffles me. And I can be such a shit sometimes during it. Sometimes I'm online at this website when I should be comforting her. I still got hard spots in my heart. Guess some of them take a lifetime to melt. Looking at them and aiming the icepick helps. Thanks Deej. DEN |
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Title: Re: Sufferers become supporters for the first time Post by Jimi on Jul 20th, 2004, 1:23pm Yes a supporter is much more than a supporter. He/she is the buffer during the attack. I know during an attack, and I was in a room by myself, if the phone rang, it only rang once, I noticed the tv was immediatly turned off, the children were suddenly quiet, she knew I needed the silence to concentrate on the pain. And then after 15 minutes, if I had not come back downstairs, I would hear the bedroon door open just a crack and then close. I knew she was checking on me. She is the one who would carry the kids out and place them in the back seat of the car, still asleep, and drive me to the ER when nothing was working. And yes I have heard her crying as well as she heard me making sounds that spoke of unbearable pain. It truly affects the whole family :'( |
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Title: Re: Sufferers become supporters for the first time Post by cootie on Jul 20th, 2004, 3:21pm It's still shock and awe to both of us after all these years..........Brad says he still isn't sure what to do when he see's someone else gettin hit. Seein IS believe'n Pam Thanks for the good time DJ........you cast the first stone and were all the ripple effect gettin bigger and bigger ! Thanks to everyone there !!! |
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Title: Re: Sufferers become supporters for the first time Post by Charlie on Jul 20th, 2004, 6:17pm Well DJ; this was my second time around....sadly witnessing our family getting hit. I don't do well when this happens and turn into Jello. I don't really know what I should do. You people are so good at reading what each victim needs. It's scary, really. What a group and I can't find the words to describe how I feel. All I know is that if you get hit; with them is the place to be. Charlie |
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Title: Re: Sufferers become supporters for the first time Post by Redd715 on Jul 20th, 2004, 8:42pm on 07/20/04 at 10:53:42, vig wrote:
I thought I told you.....no sorry's needed. (not like I really was feeling THAT at the time.) Regardless...the half dose worked well and did save me from the "trex hangover"...I'm thinking that old injection kit isn't going to remain quite so obsolite after all..... ;) ;) ;) |
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Title: Re: Sufferers become supporters for the first time Post by Elaine on Jul 20th, 2004, 8:54pm Damn DJ I knew I would be in tears before the day was over reading those post bring back a lot. Jimi no one can beat our supporters. Buddy is a lot like your wife. He has taken care of the kids taken me to ER and fought with the doctors when I was unable to. Always looking for a answer for me. I hug him everyday and I know he has the hard job not me. God Bless our supporters! |
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Title: Re: Sufferers become supporters for the first time Post by TomM on Jul 21st, 2004, 9:57am Thanx, DJ. Thanx for openning my eyes. TomM |
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Title: Re: Sufferers become supporters for the first time Post by Darleen on Jul 21st, 2004, 3:24pm Margi, I have to agree with what you said. John has never had to see an attack and with everything that he goes through I would never wish it on him. DJ - I know you don't like the compliments and you say you built the hull and we are the boat but if it wasn't for you we would not have what this has become and I truly want to thank you from the bottom of my heart. D [smiley=hug.gif] |
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Title: Re: Sufferers become supporters for the first time Post by Dads angel on Jul 21st, 2004, 4:53pm Being a sufferer is not a choice, but to me neither is being a supporter. I HAVE to be there for my dad. I HAVE to brand it into his mind that he isn't alone. His beast is the same beast that tourments me. We may not feel the same pain, but we both feel pain from the same demon. Supporters are sufferers. They suffer from the same disease. Maybe not physically, but emotionally. We are all supporters... we support eachother. We are all sufferers... we suffer from the pain the beast brings. |
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Title: Re: Sufferers become supporters for the first time Post by Jimi on Jul 21st, 2004, 5:01pm Steph, are you sure that you are only 16? Very articulate post. I expect to hear of all A's your sophmore year. You have so much insight and knowledge for one so young. Keep us posted young lady ;) |
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Title: Re: Sufferers become supporters for the first time Post by Jayne on Jul 21st, 2004, 6:32pm ((((((((((((((((((((((((((((((((((STEPH))))))))))))))))))))))))) |
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Title: Re: Sufferers become supporters for the first time Post by Tim_Z on Jul 21st, 2004, 6:39pm I went through DJ and Drummer's posts, i thought they were a little hard to read, very emotional stuff. When I have an attack I cover a lot of ground and I live in a small house. I pass by my wife and kids in the living room going back and forth from the back of the house to the front. Out the door and back in. Repeating this over and over while groaning most of the time. When I'm back to normal I tell them how sorry I am and how lucky I am to have them as my family. They try to help me and they have never complained. Since I have never met another clusterhead it never even dawned on me that I could be in the position to be a supporter. I don't know if I even could do it. I think I'd break down. It would be like watching myself. Although I tell my wife I'm sorry and thank her for being there for me, I can't do enough to repay her. She's one in a million, my own personal angel. I think the supporters here are the most deserving people on the planet. I don't know how to thank you supporters enough. Thank you supporters without you it would be impossible to make through to the next day. Thank again :) :) :) Tim |
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Title: Re: Sufferers become supporters for the first time Post by Jonny on Jul 21st, 2004, 7:03pm on 07/21/04 at 18:39:36, Tim_Z wrote:
You are so wrong Tim, at the Atlanta convention someone screamed my name and I turned to the elevator to see a clusterhead on the floor banging her head hard. I picked her and told someone to push the button for the floor with 02, I carried her to the room and got her on 02 as someone else gave her a shot of trex....five mins later it was over and it was then and only then that it hit me what I just witnessed. That was the first time I saw anyone get hit and I knew just what to do.....I never thought twice about it, you would do the same my brother. .................................jonny |
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Title: Re: Sufferers become supporters for the first time Post by Roxy on Jul 21st, 2004, 7:09pm I have to elaborate on jonny's story. The first time I got hit at the convention last year......I had never been hit in front of people before, and the 02 wasn't up and running yet. I just turned around and yelled "jonny", and he was right there hooking it up for me, while Deej destroyed my luggage looking for trex and Cat got an ice pack. Then they just sat with me till it was all said and done. That's a bond which will never be broken in my mind. |
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Title: Re: Sufferers become supporters for the first time Post by purpleydog on Jul 21st, 2004, 7:12pm on 07/21/04 at 19:03:21, Jonny wrote:
So true.... |
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Title: Re: Sufferers become supporters for the first time Post by Jonny on Jul 21st, 2004, 7:17pm Well!....It seems im good for something after all.....LOL ;;D .............................jonny |
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Title: Re: Sufferers become supporters for the first time Post by Tim_Z on Jul 22nd, 2004, 12:17am Maybe Jonny, I guess I just wouldn't know until it happened. Thanks for your vote of confidence though. Ya gotta do what ya gotta do. Tim |
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Title: Re: Sufferers become supporters for the first time Post by Charlie on Jul 22nd, 2004, 12:23am Yeah Rox and you were the first one I ever saw get hit. I still can't get that out of my mind. What a horror, what a crew. Charlie |
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