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Title: HOLY SHIT! (or my first supporter experience) Post by Elizabeth on Oct 2nd, 2002, 11:17am Glazed over eyes, then a bit of hair tugging. Okay, so I didn’t know her well enough, yet, to know the beast was on its way. A bit of scattered thinking (maybe she’s just had too much to drink?). Then the rocking starts - hands on the ears, seemingly holding on for dear life. It’s over - no more rocking, no awareness of the rocking and hair tugging. “I’m fine,” she says. One cigarette later, guttural moans escape unknown to her. Still in denial, as many of us are when partying, she claims she’s fine, that she’ll be okay. This wonderful man with us knows what to do - get her to the oxygen! Half way to her room, her legs collapse - pain has hit. “I’m so embarrassed,” she says. “Don’t tell anyone,” she pleads. “I’m so embarrassed,” she repeats, “I don’t want you to see me like this.” Holding her light body upright, we get her to her room. Down on the floor, she’s gasping with the oxygen mask on - I’m officially terrified. HOLY SHIT! What do I do now? BOOM! BOOM! BOOM! Her head is hitting the oxygen tank, slamming it into the wall. HOLY SHIT! Rolling back and forth, her head pounding relentlessly on the floor and pointy-bottomed armoire. What would my daughter do? Pillows! Pillows to protect her head. “Let me die,” she says, “please let me die. I just want to die.” Helplessly we comfort her, protecting her from the beast, holding the oxygen mask on, putting ourselves between her and the furniture. Then the rocking starts again, a sign it’s almost over (not that I realized it right then). Within a few more minutes the beast leaves - she’s exhausted, sweaty, and still embarrassed at being seen. HOLY SHIT! I just saw my first cluster headache. Truly frightening. Why couldn’t I help her? Is this what my daughter sees when the beast pays me a visit? As for being embarrassed: we know; we understand. Please don’t be embarrassed - if we don’t understand then we’re horrid supporters! I’m pleased I was able to be there to give what little help I could. If nothing else, I learned. I learned that, for the most part, my clusters are minimal compared to some others’. I learned how to help someone when there was no way to help. We both learned our cues that the beast is about to attack - for her, hair tugging; for me, spoken words that are inaccurate (calling a pineapple a watermelon, for example, or a sofa a piano). I now understand how difficult it is to be a supporter, watching and knowing there’s nothing you can do. I learned that we really do stick together - we clusterheads are an unusual yet intimate group. best to all, Lizzie |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Slammy on Oct 2nd, 2002, 11:28am Great post Lizzie! missed ya! :-* This just illustrates what a horror it is to have this infliction. Even knowing what kind of pain they are going through does not minimize the helplessness we feel when watching another clusterhead go through an attack! :-/ Slammy 8) |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Margi on Oct 2nd, 2002, 11:41am Wow, Liz - you really NAILED what we supporters go through. Thank you. :) I know who you're talking about, and on behalf of her, thank you for respecting her privacy. She is an awesome lil gal, and her strength (all clusterheads' actually) amazes me too. Thanks for being there with our clustergal and thanks, too, to Doug Wright for bringing those o2 tanks and sticking out the attack with her. Hugs, |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Slammy on Oct 2nd, 2002, 11:50am on 10/02/02 at 11:41:59, Margi wrote:
Awwww Margo! oops! I mean Margi! ;D Awesome lil gal.... that gave it away! :D Slammy 8) |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Margi on Oct 2nd, 2002, 11:58am no, Slammy - not really. So many of the clustergals at the convention were around five feet in height. Personally, I think clusters have stunted their growth. :) I think Bama was the only lady slightly taller than me and i'm 5'5. |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Cathi on Oct 2nd, 2002, 12:37pm Would somebody please get over here and get my jaw up off the floor? I'd say that is about as firsthand as one can get - without getting firsthand. I've read it, I've heard it, and now I think, in a way, I've felt it. Powerful? Oh yes! Painful?".....Absolutely! I need to read this daily- prior to checking this site. I will reiterate what I have said before- this is one strong, smart, caring, fall- on- the- floor- laughing- great group of people- beyond beating odds.....be resilient, fight hard- DON"T LET THIS CURMUDGEON BEST YOU! And let me know how this unenlightened soul can help you go from today to tomorrow...........here's a little secret.....I think you're ALL much stronger than I am- Cathi OOOHHH- I forgot (I love this part...PFDAN, everyone) |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by echo on Oct 2nd, 2002, 12:45pm Thank you for taking the time to put your visual into writing. Always wondered what I looked like to the observer. No wonder we scare the hell out of people. |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Margi on Oct 2nd, 2002, 12:53pm Unfortunately, Cathi - no, that's not as firsthand as it gets. It can and does get WAY more real than what Liz wrote. That's actually quite a condensed version of what sufferers and supporters go thru in real life. That was just one cluster attack. We go thru this stuff as much as 8 times a day at peak cycle. Day and night, week after week, month after month. And, chronics do it year after year. Those of us that are 'lucky' enough to only be exposed to episodic cluster cycles at least get a break during the remissions. Chronics do not. Liz did an excellent job of depicting the helplessness of witnessing an attack, don't get me wrong. But it's literally impossible to put into words the repetitive/residual pain we each feel when cluster headaches invade our lives. What you're experiencing is really just a sugar-coated, Reader's Digest version of what we live out here in real life. |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by joepauley on Oct 2nd, 2002, 12:55pm Wow, TRULY amazing. Now I know what my man goes through every time I'm having an attack. I'm gonna make him read this one this evening, so I can finally tell him I understand. I'm lucky to live with someone who tries to help in any way he can, and will do anything I say, whether it be just to leave me alone for a while or (on those rare mega-10 occasions) get me to the ER. Funny how guilt runs on both sides of the equation... I wish we could both get beyond that. Between my guilt over having to let the man I love see what I go through when the beast is at his worst, to his guilt over not being able to do much of anything about it, it can be tough to cope with the bouts. It's just heartening to both of us to know we're not alone in this. Sorry if I'm rambling here... the prednisone has me really spacey and stupid for some reason... and the lack of sleep isn't helping. But on the bright side, I've had two days without the Beast, thank God! PFDAN to all... Joe |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Cathi on Oct 2nd, 2002, 1:29pm Can you cut me just a little slack, here? Short of asking someone to come stay till they get hit....I can only feel- to the core of me, a response to what I've heard or read....I KNOW that's not the half of CH- I KNOW of the ugly, angry, dark- oh, screw the adjectives! What I know, Margi, is that I have a lot to learn.....my lack of CH knowledge is not up for debate. Somehow, I feel guilty that I am not a sufferer, so, I'M SORRY EVERYONE!!!!! I'm still here if you need me..... Cathi |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Slammy on Oct 2nd, 2002, 1:40pm Quote:
hmmm I dunno..what did you have in mind? ;) Quote:
Quote:
:D that can be arranged! :D Gawd! I'm such a Slammy! 8) Slammy 8) |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by echo on Oct 2nd, 2002, 1:47pm Cathi -- I will cut you all the slack you need. Hang in there. I, for one, would have been blessed to have someone wanting to understand the beast in an effort to help me when I started this dance 25+ yrs ago. Back then friends and family thought I was just wacked out on some type of drug. Glad you're here. :) Watch out for slammy, he is so willing to help. ;D |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Cathi on Oct 2nd, 2002, 1:53pm Slammy- can't you SEE??? This is genuine concern, man!! I refuse to give you another weekend's worth of material, and I understand Jonny's STFU- but I would never talk like that ..... Now, if you'd been nice, like my new friend Echo, well, who KNOWS the limits of my friendship-aw shoot- wide open, huh? Sign me really grateful to be approx. 1300 miles away from Ventura- Cathi |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Slammy on Oct 2nd, 2002, 1:56pm Quote:
hmmmm I thought I was... ::) Oh well...... ;D Slammy 8) |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Cathi on Oct 2nd, 2002, 1:59pm Echo- I joke a lot, so I want to be sure you hear my sincere appreciation for your kind words....I wish someone could've been there to help you 25 yrs. ago, too. Seems you've found a wonderful place to go for help- and I'm really glad to be here- who knows....maybe I'll find a spot where I can REALLY help out.....till then, I'm glad to meet you, new friend echo- and you look MAAAHVELOUS! Cathi |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by echo on Oct 2nd, 2002, 1:59pm Hey slammy NEENER NEENER NEENER! ;D ;D |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Melissa on Oct 2nd, 2002, 2:09pm on 10/02/02 at 11:58:53, Margi wrote:
Nope, I'm 5'7" and taller than Bama. Seemed to be a lot of short people around me that weekend. ::) ;D ******************************************** Liz, it's scary not knowing what to do for someone who is in such horrendous pain. You did the best you could, and someone was cared about and helped because of it. For that, you should pat yourself on the back. :) ;DMel |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by jonny on Oct 2nd, 2002, 2:49pm The only one taller than I was BobP that dudes a mountain, being the wise ass I am I kept my cracking wise to nill while playing golf with him. You ever see a mountain holding a set of golf clubs? ;D Plus, cause of the sciatica there was no way I could have got away.....LOL .......................jonny |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Edna on Oct 2nd, 2002, 2:55pm I agree with Mel on this one Liz, you deserve a pat on the back not only for being there to help a friend, but realizing the sincerety of it and posting those beautiful words to shed more light for others here. Thank you It just goes to reinforce the reason we troopers are here. Good to see you again too, EDNA |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by Slammy on Oct 2nd, 2002, 3:07pm on 10/02/02 at 13:59:57, echo wrote:
LMMFYBO!!!! Right on, Echo! ;D All bow down to the new Egg King! ;D Slammy 8) |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by echo on Oct 2nd, 2002, 3:14pm on 10/02/02 at 15:07:14, Slammy wrote:
Hey everyone -- you heard the man. When do I get my crown? |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by jonny on Oct 2nd, 2002, 3:22pm Ill give you" the roman war helmet", dont worry the yam is smooth and it wont hurt a bit.....LMMFAO ;D ..................jonny |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by echo on Oct 2nd, 2002, 3:28pm Thanks jonny, you are a true friend. Always here to help me out in time of need. I think ??? Want to be my sergeant of arms? Hell - you have the tats for it. |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by NancyMcFree on Oct 2nd, 2002, 3:59pm Liz you did great. Thanks for sharing the story. Echo you are the man !!!!!!!!!! |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by oringkid on Oct 2nd, 2002, 4:22pm Wow, when I read something like that, it makes me feel lucky in a way. I must not get hit as hard as some people. I mean, I have done my share of head banging and crying but... Let's put it this way, I think I have only had a 10 maybe twice in 29 years. I only remember one clearly and what I did (since I knew it would be over before I could get to an ER and be seen) was thrash violently on the bed, pulling my hair, clutching and hitting my head with my hands, crying and begging to die, I had bad heart palpatations and had trouble breathing. I never want to go through that again. I feel lucky cuz most of mine don't go past a 8 or 9 and I can deal fairly calmly with that (although the 9's bring on the heart palps and ragged breathing) When I hear about so many of you that experience 10's all the time, everytime, I count my lucky stars. Sherry |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by SFChris on Oct 2nd, 2002, 6:58pm Elizabeth - thanks for the description from the "other side". Those of us who have never met another clusterbud in cycle probably have no idea how scary it must be to witness. By the way - where have you been? I have been worried about you...glad to see you back, and I hope all is well. I was (am) your first groupie, remember? Chris |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by 2late on Oct 2nd, 2002, 7:05pm this is one reason why i lock myself away, unbelievable!! Liz where ya been hidin'!! ........2late |
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Title: Re: HOLY SHIT! (or my first supporter experience) Post by kim on Oct 3rd, 2002, 6:58am Hi Liz, I have tried to imagine what I would do and how I would feel if and when I ever witnessed someone besides myself having a cluster attack. The people who are close to sufferers have had to develop skills to deal, just like we develop our dance to cope. I imagine myself standing there like a dope in a state of "duh" - like when you first witness a fire and are transfixed b4 you actually jump into action.....HOLY SHIT!................so, now you know, Liz, and Bless you for being there for her. |
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