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Topic: Dealing with the BEAST (Read 671 times) |
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Dealing with the BEAST
« on: Oct 20th, 2005, 11:48am » |
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I had a LONG phone conversation with Cat, yesterday. (WOW, is she a long winded wench!!  ) haha!! (Course, I never said a word. SHE did all the talking. I feel sorry for Clark!)
Anyhow, ONE of the topics we talked, in length, about was how long time clusterheads deal with CH, especially chronics. Cat and I both, deal with the hit, as best we can, and then go on with our life. We have both, at some point, made the conscientious commitment that CH was not going to rule our lives.
As most of you know, I get hit fairly often, and no drugs seem to work to prevent them. The only thing I use, is my life line, oxygen, and even that does not always work. Yet I still maintain a full time job (mostly because I lucked into one that can accept my missed time, and I can work whatever hours I need to), and enjoy life to its fullest. I get hit, even a BAD one, I deal with it, and then I go back to having a ball, or whatever I was doing before the beast made his visit. My father, after finally seeing one of my hits, told one of my sisters that he knew that I had them, but he never knew how bad they were, until he witnessed one. He does not know how I cope with them. “And yet,” he says, “he goes in to deal with the hit, and then comes back out here like nothing happened, and jokes and fools around with us. How can he do that?”
How? How do I and many others do it? We made the conscientious decision NOT to let it ruin us. I wallowed in self pity for a long time. Most of us have. Once I found this site, I learned how to deal with it. In the beginning, I got my ass kicked several times. For mouthing off incorrectly, and for not dealing with the beast in the right way. I deserved each kick in the ass. It was through listening to people here (yes, EVEN Jonny! haha!  ) that I also made the commitment to take my life back. Deal with the hits, as best you can, and then get back to living. Someone, from this site, will call me up, and ask how I am doing. My common response to that is: “GREAT! I am between hits, so everything is fine.” THAT is the attitude you have to take.
Several people here are having a rough time of it. I feel so sorry for each and every one of them. But, they have to make the effort, and WORK at living your life. We all know, that this is a lifetime sentence. We have to do what we have to do. Wallowing in self pity, doesn’t do that.
I am not saying that I am any stronger or tougher than anyone else. The opposite is the REAL truth! I am a wimp. It is just that I learned that I have to take control. No one else can do it for me.
Almost everyone here is willing to help, but YOU have to be the one to do it. We will hold your hand, for a while, we will let you cry and whine, for a while, but at some point, we will boot you in the ass, and tell you to get a grip. We are not being mean when we do this. We TRUELY want to help, and sometimes that boot in the ass is what is needed.
Good luck to you all, and I hope there is a LOT of pain free time out there. ENJOY it!
Chuck
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LeLimey
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Re: Dealing with the BEAST
« Reply #1 on: Oct 20th, 2005, 12:14pm » |
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Damn right Chuck. 
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PollyPocket
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Re: Dealing with the BEAST
« Reply #2 on: Oct 20th, 2005, 12:14pm » |
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Chuck, I don't have one of those hug smiley thingys, but if I did, I'd plaster about a bajillion of 'em on here.
There was no better way of saying what you said.
So........what you said.
hug hug hug hug hug X a bajillion
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Langa
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Re: Dealing with the BEAST
« Reply #3 on: Oct 20th, 2005, 12:19pm » |
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Excellent Post Chukielicious...
Langa
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Carl_D
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Re: Dealing with the BEAST
« Reply #4 on: Oct 20th, 2005, 12:20pm » |
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Awesome post Chuck! Thanks.
The way I deal with a hit: I go insane and become something else. The way I deal with it afterwards: Try and regain composure and sanity, and then do something fun like play frog baseball. 
Peace,
Carl D
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Kevin_M
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Re: Dealing with the BEAST
« Reply #5 on: Oct 20th, 2005, 12:27pm » |
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on Oct 20th, 2005, 11:48am, ClusterChuck wrote:It is just that I learned that I have to take control. No one else can do it for me.
Almost everyone here is willing to help, but YOU have to be the one to do it. We will hold your hand, for a while, we will let you cry and whine, for a while, but at some point, we will boot you in the ass, and tell you to get a grip. We are not being mean when we do this. We TRUELY want to help, and sometimes that boot in the ass is what is needed. |
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vig
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Re: Dealing with the BEAST
« Reply #6 on: Oct 20th, 2005, 12:32pm » |
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on Oct 20th, 2005, 12:14pm, JenniferD wrote:Chuck, I don't have one of those hug smiley thingys, but if I did, I'd plaster about a bajillion of 'em on here.
There was no better way of saying what you said.
So........what you said.
hug hug hug hug hug X a bajillion |
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some for each of us...
good post CHuck....
and my hat is off to everyone that has found a way to stay positive and hopeful through our ordeal.
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catlind
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Re: Dealing with the BEAST
« Reply #7 on: Oct 20th, 2005, 12:48pm » |
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on Oct 20th, 2005, 11:48am, ClusterChuck wrote:I had a LONG phone conversation with Cat, yesterday. (WOW, is she a long winded wench!! ) haha!! (Course, I never said a word. SHE did all the talking. I feel sorry for Clark!)
Chuck
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This I will not deny. And when he did try to talk, I interrupted him. We both agreed that heart attack pain is rated at a 3
And of course now that you know that Chuck didn't get to talk at all and it was me the whole time, you know that it was me that said all those things in Chuck's post
But they apply, whether I said them or Chuck thinks he did, we all have to make the effort and make the conscious choice to not let this control us and become us, we have to simply live life, and to the fullest when we are PF.
Well typed Chuck
Cat
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minnie
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Re: Dealing with the BEAST
« Reply #8 on: Oct 20th, 2005, 12:57pm » |
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reprinted post.this post is from one of the best supporters Jackie.I don't mean to hijack your thread chuck but in a way it reminds me of how we supporters are in the supporters corner and here.sometimes a suppeortr gets weighed down by many things in life.mostly seeing a loved ones pain and not being able to take the pain away.so we will hold your hand, for a while, we will let you cry and whine, for a while, but at some point, we will boot you in the ass, and tell you to get a grip. We are not being mean when we do this. We TRUELY want to help, and sometimes that boot in the ass is what is needed. I guess what I'm rambling on about is how right you are Chuck (did I really say that  It's all about family and helping everyone fight their battle with the beast.
off my soapbox with a to you and all that the sufferors off to battle the damn beast...
minnie
thanks again Jackie you are so wonderful and insightful.
Another kind of pain....
« on: Sep 17th, 2003, 3:02pm »
------------------------------------------------------------------------ --------
I'd like to start by telling you all what this post IS NOT. This is not a post or story that is meant to be self-serving. It's not a post about who suffers more or who's pain is the more hurtful. It's not a "complain" post or a "whine" post. It's a post about what if feels like to be me.....the wife of a chronic clusterhead who I love with all my heart. It's a post about what it feels like to be me when I read so many of the sufferers posts because I have seen with my own eyes the pain they are talking about.
Clusters hurt supporters hearts.......
I've watched Blake reeling in pain for endless hours. I've heard him beg God to kill him. When God doesn't he's begged me. That's heart pain.
I've seen Blake (some mornings) looking like he just walked out of a concentration camp.....eyes sunken in, no color, no facial expression. I ask him if he'd like a cup of coffee and say 'you better hurry up, honey, or you'll be late for work'. What I'm thinking is how can this man make it another day...how can he go to work. But...I know I have to make him try. I know I can't let him give up. That's heart pain.
At different times I've asked the doctors to change Blake's drugs. I've done this more than once and it's usually when he's in "high cycle". My theory is we have to keep trying...we have to keep looking. One time when we changed drugs it made it much worse. Right in the middle of a Kip10 he's begging me to please never try another drug...please never ask him to do this again. That's heart pain.
I've intentionally made Blake mad when I feel he's about to give up. I've pissed him off just to get his blood flowing and get the heart rate up. It works but it just about does me in when all I really want to do is hold him and cry. That's heart pain.
Clusters hurt supporters egos......
I'm a bit of a contol freak. I like to take charge and fix things up. I like to make things better for friends, family and loved ones. But you know what.....there's not a damn thing I can do to stop the pain when the demon hits. I can't threaten him, scare him away, bust his balls or buy him off. I have to accept that I can't make it all OK for Blake until the demon lets me. I have to stand by in a helpless state. That's ego pain.
There's one more pain and it's called guilt.......Blake and I are husband and wife. We are soul mates. We are best friends. We are supposed to share everything....the good things and the bad....the tears and the laughter....the pain and the "feel good" times.
I have begged God to put the demon on me....to give Blake a break....to leave him alone for just one week. But.....it never happens. Blake has to endure all the hits and that's not right. That's guilt pain.
Well.....that's about it I've run my mouth again as usual.
Love to you all....suffers and supports alike
Jackie
LOL...one more thing. My theory is never let 'em see ya cry, never let 'em see ya sweat, never let them see any doubt on your face.....hang tough and they'll hang tough with ya......fight the demon with them and they won't give up......tell them that tomorrow will be better and they'll try it another day.
Damn....I'm a long winded broad...
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JDH
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Re: Dealing with the BEAST
« Reply #9 on: Oct 20th, 2005, 1:06pm » |
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Fuckeneh Chuck! Great post.
As for being a wimp sorry I don't think so...you're one of the toughest mofo's here and you have a great outlook.
Thanks for the words,
Jim
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jcmquix
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Re: Dealing with the BEAST
« Reply #10 on: Oct 20th, 2005, 1:14pm » |
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Chuck... This is 100% on the mark...
I also know its not easy, Working & Holdong down a job when I am in cycle, But I think of my Family and I know I have to push on...
I am a Quality Manager at a Plastic Molding Company, its tough when I am not in cycle, and my Boss does not give a Rats A$$ about my CH, ask my wife...
I am not saying I am better than anyone either, but you just have to make to decision that you want your life back from the BEAST...
Chuck, you are added to my list of People I want to Meet and shake hands with, its Great to know you..
God Bless & PFDAN's
Charlie
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LadyElaine
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Re: Dealing with the BEAST
« Reply #11 on: Oct 20th, 2005, 1:15pm » |
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Wonderful Post! Great advice!
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E-Double
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Re: Dealing with the BEAST
« Reply #12 on: Oct 20th, 2005, 1:17pm » |
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Well put and hopefully will kick some strength towards a few
"It is what it is so live the life you've got!" Me
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I can't believe that I have to bang my
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Gonna take a breath and try again.
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broomhilda
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Re: Dealing with the BEAST
« Reply #13 on: Oct 20th, 2005, 1:24pm » |
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So very true...
's
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Suck it up Princess...
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minnie
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Re: Dealing with the BEAST
« Reply #14 on: Oct 20th, 2005, 1:32pm » |
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on Oct 20th, 2005, 1:14pm, jcmquix wrote:
Chuck, you are added to my list of People I want to Meet and shake hands with, its Great to know you..
God Bless & PFDAN's
Charlie |
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Charlie Chuck is definately someone to meet he's great.just make sure the wardens nearbye to try to control him . I had the great honor of being groped by uh having my a$$ grabbed meeting this great man in Nashville.Not only this but Leesa told me I am buried between chuckiepoo and king Jonny in her halloween graveyard.I guess this makes me in 7th heaven. 
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The mad viking
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Re: Dealing with the BEAST
« Reply #15 on: Oct 20th, 2005, 1:34pm » |
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DAMN YOU Chuck
You know how i hate to do this but i do agree with you 100% on this one
Gonna get you for this somehow
Svenn
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zanychef
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Re: Dealing with the BEAST
« Reply #16 on: Oct 20th, 2005, 2:50pm » |
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have to agree with you on this one chuck and just like the troll up there sure hate to lol
the thing is NEVER EVER GIVE UP 
zany
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plenty of time to sleep now me headaches aint too bad
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Jonny
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Re: Dealing with the BEAST
« Reply #17 on: Oct 20th, 2005, 3:03pm » |
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on Oct 20th, 2005, 1:32pm, minnie wrote:
Leesa told me I am buried between chuckiepoo and king Jonny in her halloween graveyard.I guess this makes me in 7th heaven. |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Sandy_C
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Re: Dealing with the BEAST
« Reply #18 on: Oct 20th, 2005, 4:59pm » |
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[quote author=ClusterChuck at some point, made the conscientious commitment that CH was not going to rule our lives.
Chuck
[/quote]
Chuck, that's it in a nutshell. Whether we medicate, or go cold turkey, the bottom line, we have to have that commitment that this is the only life we're going to have and that we must - repeat MUST - make the most of it despite the CH, despite other problems in our lives, despite everything.
Great post.
Thanks
Sandy
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rextangle
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Re: Dealing with the BEAST
« Reply #19 on: Oct 20th, 2005, 5:07pm » |
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Bump! Great post, Chuck!
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minnie
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Re: Dealing with the BEAST
« Reply #20 on: Oct 20th, 2005, 5:28pm » |
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ooh I'm so exited I'm dead and buried in Leesa's yard (funny I don't feel any different LOL ) Thank you Leesa for killing me and burying me .
Jonny thank you for posting the pic .I hope we got enough beer and hot chicken wings to last eternity.Hey chuck pass me a beer will ya. 
will try to have my head back on by convention otherwise 
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Friends are Angels who lift us to our feet when our wings have trouble remembering how to fly
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cathy
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Re: Dealing with the BEAST
« Reply #21 on: Oct 20th, 2005, 6:37pm » |
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chuck that was a great post good to read your doing well x
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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LeLimey
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Re: Dealing with the BEAST
« Reply #22 on: Oct 20th, 2005, 6:43pm » |
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Hi Cathy! Pam was looking to get hold of you a couple of weeks ago, can you IM her your email addy please as she was desperate to get in touch with you? I asked a couple of people on OUCH UK but no one had any up to date contact details for you.
Its nice to see you!
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Sean_C
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Re: Dealing with the BEAST
« Reply #23 on: Oct 20th, 2005, 7:03pm » |
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Nice post Chuckles
Sean........................
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jon019
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Re: Dealing with the BEAST
« Reply #24 on: Oct 20th, 2005, 9:03pm » |
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Thank you Chuck,
This kind of of insight, strength, and character is why I'm here at ch.com. The beast can take, and take, and take... but ultimately, it's a choice whether you let him take it all. Not me, he can't have it, Chuck says so!
Regards
Jon019
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