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Topic: clustered (Read 982 times) |
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john_d
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I gotta say, I am feeling nothing but respect for you chronic guys, fuck this. This cycle is like a fricken nightmare, it's like I am being chased all the damn time. Believe it or not, I am actually managing the hits ok. But it's like a full-time job doing it. It's totally messing up my sleep, which in turn messes up my work, messes with my emotions, I just feel like crap all the time. I really hate this crap, it sometimes wear this malady like a badge- 'I can handle the worst of it' kinda badge. But you know what, I don't want that fucken badge, and I don't want these fricken headaches. How come all the absolute worst shit happens to me? I don't want it, I don't want to be tough, I don't want to be hard. I just want to live my life along a semi-normal timeline, you know- regular sleep. I feel like a real bitch whining like that, but damn, damn, damn, ya know?
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Grandma_Sweet_Boy
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Re: clustered
« Reply #1 on: Dec 10th, 2004, 7:57pm » |
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The worst doesn't happen to you - that's reserved for the chronics - us poor episodics just manage to get by cause we put one foot in front of the other and keep on truckin'.
Sorry to hear you're getting hit so badly right now - keep repeating "This too will pass!"
Carol
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john_d
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Thanks Carol, I will make it a point to say that to myself. I know, many people have it must worst than me. Many people on this board especially. I really have no business complaining, I am just not used to it, it's been such a long time. I was hoping a good bitch here would make me feel better, but it really doesn't. As a matter of fact, it felt worse. I'll get through this fine, I really will.
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ClusterChuck
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Re: clustered
« Reply #3 on: Dec 10th, 2004, 8:12pm » |
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Hey, we have no choice in the matter. As a chronic, I got used to one or two hits a day. Piece of cake. But for the past 17 months I have been getting hit between 8 and 15 times a day. How did I survive? This site! Meeting other clusterheads! Does CH suck? You better believe it does! But none of us have any choice in the matter. We play the hand we are given. You can get used to most anything, believe it or not!
And you want to know the strangest thing? I am happy as a pig in shit, right now! Ya know why? Because I am down to only 6 to 8 hits a day! I am SO happy that my hit count is down!!!
So sorry this is getting you down, but bitch and moan and scream and holler all you want! We understand and KNOW what you are going through. It helps to get it out.
Stay strong, my friend, you can do it! We are all here for you! We got your back.
Now go kick some beast ass!!!
Chuck
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Thomas Fuller
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Redd
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Re: clustered
« Reply #4 on: Dec 10th, 2004, 8:16pm » |
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John,
This is coming from a chronic, so please take this to heart. "it doesn't realy matter" It's f*cking painful, and tireing, and frustrating , and....and....and....
This is where you CAN bitch and vent . Period. This room is our own little Cheers. Every knows your name, and your pain. Vent away darlin...we're here.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Grandma_Sweet_Boy
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Re: clustered
« Reply #5 on: Dec 10th, 2004, 8:19pm » |
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John - please know that I wasn't trying to take a run at you. I truly sympathize with what you're dealing with now and I'll be in the same boat before much longer I'm afraid.
Guess I was just trying to point out it could be worse - no offense meant at all and hopefully none taken.
I'll come knocking at your door in February and you can give it right back to me - how's that?  In the meantime, like the rest of them have said, moan, bitch, curse, and do whatever else it takes to help you feel better.
Carol
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john_d
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not at all Carol...I just felt stupid about my own bitching. I appreciate you very much.
I really, really appreciate everyone on this board. Now more than ever. The word 'family' being said on this board makes so much sense when I am getting hit. Thank you.
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Grandma_Sweet_Boy
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Re: clustered
« Reply #8 on: Dec 10th, 2004, 8:29pm » |
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Never feel stupid - the S.O.B. does it to all of us sooner or later. Thankfully we do have this family to bitch to. Lord knows, the general public has no clue what we're all about! Until I found this place several months ago - there wasn't a single soul that had any idea what I was talking about if I said the word "cluster". Pitiful when you think of it. We can put a man on the freakin' moon but we can't find a cure for this or the common cold! Somehow it's just not fair!
Carol
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Jonny
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Like I have said many times before, I am glad I am chronic!
This way I never have the fear that the beast will return, I just always am ready for him.....never ever let my gaurd down.
Big vibes to you Bro....kick his ass!!!!
................................jonny
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Mac_Muz
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Re: clustered
« Reply #10 on: Dec 10th, 2004, 8:38pm » |
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I feel guilty as hell chatting to chronics. I have been free for a rahter long time. I stopped posting here, and then thought about it, and came back.. Still I feel guilty.
At this point I can't tell if it will come back and or when.. My last was Winer to Spring, and about 6 weeks before I signed on here.
The CH's really pissed me off and I have been wishing for them to return as nuts as that sounds, so I can resume testing. I also am fairly close to Harvard and have been in contact, but with no ch they can't deal with me either... I wanted to be a guinea pig for the others.
I was one long ago as a child for pneumonia. I always had a bad time of that as i was born with it.. It ended up as i was the test pig for the rest then..
Anyway I feel guilty that I know about this and can't do a bloomin thing to help anyone..
I might be the biggest fool there is here for all I know, but I am here to try to help. And then to get a little support in my bad days... It does help me to have a friend or two.. Mac
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Grandma_Sweet_Boy
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Re: clustered
« Reply #11 on: Dec 10th, 2004, 8:47pm » |
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Don't feel guilty - feel thankful that you're not chronic and then do what you can to support them when you're not in cycle. It'll come back to you tenfold when you need it.
I see some that leave and don't come back until they need the support. Somehow I think that's not very fair. I may not be able to provide a whole lot to any of them, but I will always try and it's all we can do.
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Kevin_M
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Re: clustered
« Reply #12 on: Dec 10th, 2004, 8:51pm » |
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John,
For times like these, good to see you here. Take care John and remember some of the good tips from your "it's official" thread a couple pages back.
Stay on top John!!!!
Kevin M
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Bandette74
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Re: clustered
« Reply #13 on: Dec 10th, 2004, 9:27pm » |
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John, sorry you're getting hit. Hang in there 
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ClusterChuck
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Re: clustered
« Reply #14 on: Dec 10th, 2004, 9:58pm » |
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I have said this before, and I am going to say it again. Close to Jonny's comment.
I think you episodics have it worse than us chronics. We NEVER have the fear or dread of when our cycle will start. It is always here. We can go on living our lives, and just adjust around CH.
You episodics have to learn to deal with CH, and then once you do, your cycle stops. Then you live a "NORMAL" life. Then your cycle starts again, and you freak out, and retrain yourself to deal with them ... AGAIN ... And over and over again!
Me? I am too old. Hard to teach an old dog ... I got it down, and don't have to relearn it.
Chuck
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nani
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Re: clustered
« Reply #15 on: Dec 10th, 2004, 11:07pm » |
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I gotta go with johnny and chuck... less ups and downs. Life as chronic holds few surprises (except those incredibly surprising pain free days). john...it sucks that you're having a hard time...it doesn't really matter whether it sucks more or less than anyone else. Vent away...curse...tell don he sucks...whatever it takes, man.
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WhoIsTedNow
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on Dec 10th, 2004, 7:54pm, john_d wrote:
I gotta say, I am feeling nothing but respect for you chronic guys, fuck this. This cycle is like a fricken nightmare, it's like I am being chased all the damn time. Believe it or not, I am actually managing the hits ok. But it's like a full-time job doing it. It's totally messing up my sleep, which in turn messes up my work, messes with my emotions, I just feel like crap all the time. I really hate this crap, it sometimes wear this malady like a badge- 'I can handle the worst of it' kinda badge. But you know what, I don't want that fucken badge, and I don't want these fricken headaches. How come all the absolute worst shit happens to me? I don't want it, I don't want to be tough, I don't want to be hard. I just want to live my life along a semi-normal timeline, you know- regular sleep. I feel like a real bitch whining like that, but damn, damn, damn, ya know?
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Aw. thanks John. As a chronic I have to accept this as a term of apology. If you can feel so sorry for yourself and think in terms of badges then you surely must pity me enough to know how this overly traumatic pain makes me that low-grade that I am. Or, as any chronic will tell you, it's life. Move on. Sorry you're hurting but don't let it take over. It's part of your life and nothing more. Unless you want other people's Kleenex.
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marlin
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Re: clustered
« Reply #17 on: Dec 11th, 2004, 12:14am » |
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Bless you chronics' hearts, Somehow I think you believe that you really are better off and that's great. You need to hang on to whatever you can just to cope. The fact is, I simply don't know how you do it. I suppose with the right meds I could carry on and who knows, someday I may become chronic just like you. Not looking forward to it, that's for sure.
John, hang in there. Keep the O2 and trex within arm's reach. The rest of you chronics, I.m behind you guys.
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Ree
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Re: clustered
« Reply #18 on: Dec 11th, 2004, 12:24am » |
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Sorry that you are hurting john... Believe and it will end, For eposodics... most times when the pain gets to that point where you think this is it... I am definately going to die. The attacks will start to taper off. And... chronic or eposodic no ones pain is worse~~ Pain is Pain~~... I don't think Dave could tollerate what he goes through chronically... who is to say one is worse than the other... I always get so sick of the big competition here.
You are all fighting the beast... with different lengths of remissions thats how I look at it. Be well friend. Never let this become who you are. Only let it visit and LEAVE.. LOVE TO YOU!!!! ree
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WhoIsTedNow
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The fact is we are better off. And for exactly why I mentioned. We accept and move on. We never have to get used to it again, which is a blessing. We never have to acclimate to pain. We never have to go through the air-gulping rememberance of what it is all about. I had a two week break once and had to go through all of that before. Having to re-acquaint yourself several times/many times is scarier to me than never getting rid of it. So, yeah. We mean it.
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Virginia
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Re: clustered
« Reply #20 on: Dec 11th, 2004, 1:14am » |
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Speaking as another chronic, I don't think we deserve to be on any type of pedestal. I agree with the other chronics. I haven't had 24 hours pain-free since Feb, 2001....I've gotten use to it now. Yeah, it sucks but what choice do I have? Life goes on and I just have to deal with this crap as part of my life.
As an episodic, you never get use to it. When I was episodic my cycles were very random and didn't come at the same time every year. I never knew when I was going to get hit again. I could never plan events very far in advance. At least now I can plan around my pain.
Episodics, you have my sympathy.
John, you have my prayers. Stay strong.
Virginia
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The Clusterhead formerly known as 9erfan.
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john_d
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Thank you everyone, it's very comforting to read these as I sit awake in the middle of the night. Trust me I am not usually awake at this hour. I amazed to hear the chronics perspective, and I am also amazed to discover all the people who are chronic.
Ted? Being nice to me, I feel honored. Thanks for the kind words. I'll be just shutup now before you change your mind. 
I am going to try to sleep a few more hours. It really ain't that bad, especially with being able to come here times like this.
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Charlie
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Re: clustered
« Reply #22 on: Dec 11th, 2004, 5:09am » |
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It's easy for me to post this but feel guilty? Nope. PISSED OFF works for me. That anyone has to deal with this is a true horror.
Hope things start to turn around soon.
Charlie
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BarbaraD
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Re: clustered
« Reply #23 on: Dec 11th, 2004, 6:35am » |
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I never thought about chronics being lucky, but it makes sense. We just go thru it daily and learn to live with it. I remember when I was episodic - it was always a waiting game.
John, hope this is a short cycle and that you never have another one. Also Kevin - hope yours ends soon.
In fact I wish all of us could be pain free forever, but as Chuck said, You play the hand you were dealt.
Bitch moan groan -- this is the place because everyone here UNDERSTANDS what you're going thru.
Hugs to you BD
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Mac_Muz
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Re: clustered
« Reply #24 on: Dec 11th, 2004, 12:34pm » |
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Well thanks.. Just the same I want it back to fight it.. With out it I can't. On the other hand I feel pretty humbled that others have this all the time..
I said it someplace here that I had my first bought as diagnoised last Winter to Spring. I am not sure if I had a few teeth ripped out that seemed to hae nothing wrong and it was CH, or not, but those teeth sure are gone..
My personal tracking stalls.. I don't know why or what I can do about that.. I don't really know what to call it either... So I click my name, and click last 10 posts. Wait and wait and finally nothing happens. So I must record on paper which posts I have been too. And I know this is OT... No replies needed.
When I discovered this place it was a blessing.. Some many helped me with O2 and a few other tips which worked.. I had about 2 weeks of Ch's left to me then and had no clue what was wrong with for the previouse 6 weeks..
I don't know if Winter Spring will bring on more FUN... I kinda hope so. I'ld like to try out things I read here and a few I am messing with.
Being a historical re-enactor is weird in life and I am one... So I live in a 3 different centuries at once. So probably not many can identify with me very well.. I do learn somethings which are pretty odd, and do work, and some happen to be semi medicinal from time to time.
An example is Inonotus obliquus (search that) . I was seeking touch wood for fire starting, and that is it! It works with flint and steel, but I also found it has uses in Euro for cancer and more... teas are made, tinctures and oils too.... I can't say if this one can help us any, but maybe.. I don't care if folks can identify with me or not, and especaily so when it comes to a CH... if I have my way I will have the damned beast back and see what I can do...
The very worst I can do is fail.. I can do that with out even trying to... Mac
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