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Topic: The battle with the beast (Read 558 times) |
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Opus
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The battle with the beast
« on: Dec 21st, 2003, 5:19am » |
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Woke up with a kip8, nothing would kill this one, had to ride it out, all 1 1/2 hours, still here as a kip3, when will it leave so I can sleep?
If I had only known, what I had before, I would not have gotten married, had a child, and would not have to endure the pain in silence, oh to bang my head to some music, and never hear those words again " Oh no, your not having another headache again?" and " when are you coming back to bed?" if I had only known.
I kept quiet tonight, I didn't make a noise while leaving the bed, I didn't make a sound while fighting the beast, and I was spared those words, that hurt so deep.
Opus/Paul
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| « Last Edit: Dec 21st, 2003, 5:20am by Opus » |
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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BlueMeanie
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Re: The battle with the beast
« Reply #1 on: Dec 21st, 2003, 5:37am » |
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Morning OPUS,
Just finished up a KIP 7 myself. What a life we lead huh. Sending Vibes.
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sandie99
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Re: The battle with the beast
« Reply #2 on: Dec 21st, 2003, 7:52am » |
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Good vibes to you Opus! I hope that CH will let you rest.  I wish you streght.
I am in the middle of third preventative this fall and I keep my thumbs up that this one would stop the beast finally.
Wishing CH-free holidays,
sandie99
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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KingOfPain
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Re: The battle with the beast
« Reply #3 on: Dec 21st, 2003, 7:58am » |
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on Dec 21st, 2003, 5:19am, Opus wrote:and I was spared those words, that hurt so deep.
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If they only knew.
Kinda like kicking a puppy in
the head after it has been run
over by a car.
They wouldn't dare.
KOP
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We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
- Denis Diderot
Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
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ShariRae
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Re: The battle with the beast
« Reply #4 on: Dec 21st, 2003, 8:18am » |
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Opus, I think a lot of times...even though those words hurt so much..people don't mean to. I noticed when my kids say those things..or even my husband..a lot of times it is out of frustration on their part.They know they cant help ease the pain, yet they are there to see it & offer what support they have come to know you need. Just a thought..
Heres hopin you are pain free very soon...
hugggs
Shari
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Little Deb
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Re: The battle with the beast
« Reply #5 on: Dec 21st, 2003, 10:15am » |
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I am so sorry to hear Paul. So sorry you had to suffer in silence. So very sorry. I don't know you. But has your wife been on the board??
Just remember, we are here for you. We are all here for each other, cause we all understand each other. And our loved ones cannot understand. It is not their fault. And we are happy, are we not, that they don't have to understand.
Big HUG Paul. Hang in there. We are with you in spirit. And only a keyboard stroke away.
little deb
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Renee
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Re: The battle with the beast
« Reply #6 on: Dec 21st, 2003, 12:18pm » |
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Paul,
Has your wife taken the time to read in the supporter's corner on this site?
Have you shared with her the feelings you have when she hurts you so deep?
Do you have a set of headphones?
I'm so sorry you are enduring this alone. Just remember, you are not alone as you have all of us on this site sitting right beside you at those times when you are hit and having to stay quiet. Just find the strength to touch your heart and you will feel us, listen in your silence and you will hear us.
You are not alone!
I feel so helpless for you, but wishing you nights filled with restful sleep and an understanding and supportive wife.
My prayers and pf vibes are with you today,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Annette_Emond
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Re: The battle with the beast
« Reply #7 on: Dec 21st, 2003, 12:41pm » |
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As I write this, Dave is sleeping on the floor, where I found him fighting his own battle this morning. Exhaustion must have finally taken over. I let him know that I am here, that I love him, and then I have to just let him be. Believe me, we who must stand back and watch wage our own battles with the beast. You are not alone, we are all in this together!
Peace and comfort to you.
Annette
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Happiness runs in a circular motion..
you can sometimes come back around to what you thought was done.
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jonny
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Re: The battle with the beast
« Reply #8 on: Dec 21st, 2003, 2:44pm » |
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I know what you mean dude, its not actually what they say its the tone of voice they say it in.....its like you are a burden for suffering the way you do.
Hang tough bro.....we have your back!!!!
...................................jonny
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Brian_Y
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Re: The battle with the beast
« Reply #9 on: Dec 21st, 2003, 3:04pm » |
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jonny's right. It's the tone. Buit it is frightening, I imagine. Maybe it's a defense mechanism, I dunno. For th first time ever, the other night, my wife said "Here, I'll get up with you". She just sat with me. It does make a difference, altho when it's over, I feel foolish for some reason. My greatest and only weakness exposed out there like a raw nerve. I do not allow many people, if any, to witness that.
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kim
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Re: The battle with the beast
« Reply #10 on: Dec 21st, 2003, 3:04pm » |
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it's ok paul......
I keep remembering what a pleasure it was having you canoe with us***what you brought with you on that trip*** An amiable personality, going down the river in complete command - i'm glad you were with us. You bring a LOT of good with you Paul. Remember that. I feel lucky to know you
Don't let it bring ya down
PFDAN and well wishes from ole stinky
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Charlie
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Re: The battle with the beast
« Reply #11 on: Dec 21st, 2003, 3:36pm » |
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Beat the walls and scream. No need to "get in touch" with anything or anybody when getting hit. Someday they'll catch on. They have to learn that this horror has nothing to do with headaches. Even if they know it, just calling them that isn't helpful.
Stay the course and make them read this stuff.
Charlie
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Cerberus
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Re: The battle with the beast
« Reply #12 on: Dec 21st, 2003, 6:04pm » |
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Paul,
If it makes anything a little better for ya, My own mom refuses to acknowledge anything that doesn't directly effect her. The best I get is "sorry to hear that" as if she had ANY idea whatsoever (cold blooded bitch).
I'm pullin fer ya man! Holla!
Ramon
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Lizzie2
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Re: The battle with the beast
« Reply #13 on: Dec 21st, 2003, 6:50pm » |
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Hey Paul,
I understand what you mean about the comments. The other day, my mom said to me, "Well, I'm trying to find all these things to help you because every time you call and tell me you're having one of these bad headaches, I feel bad and I have to figure out something to do!" I said to her, "Then fine. I won't call anymore. I didn't know I was such a big burden." She made some other reply to that one.
It's so difficult. The other night I had a very bad attack, and I also can't walk around my house yelling and screaming because of how they react, so I walk away from them and go upstairs and kick something really hard, or something of that nature. Well, I wound up sitting down for a few minutes chatting in hsg.com, and she said, "Go lie down and get off of that damn computer." Wellllllllll first she doesn't understand that laying down is NOT going to make me feel better and that secondly, chatting was about the only thing helping me at that moment as I was about ready to scream and run through the wall of my bedroom!
I know it is tough. I understand what it's like to live in a family who does not understand. But here you have people who do understand very well. That's why during that time, I wound up posting because I can't show my pain to anyone in my house. They don't get it.
Hang in there and lots of hugs!!!
~Lizzie
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Opus
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Re: The battle with the beast
« Reply #14 on: Dec 21st, 2003, 6:55pm » |
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Thanks all,
For all of your support. I have made it through the whole day without any sign of CH. I'm hoping and praying that because the beast had to have it's due and would not be aborted because it will be the end to this 8 month cycle. We are all sick so Christmas is pretty much a wash.
To answer your questions, My wife found this site for me and read a little but has never been a supporter. She needs a lot of support which because of CH and burnout I am not able to do to her liking.
I haven't been able to handle wearing headphones and even if I did they would have to be too low to help. I have to make sure I don't type too loud if I post in the night.
I have explained how I feel once and I will never repeat that mistake.
Kim,
I remember those days, being around such good friends that I had just met. That trip gave me almost two weeks painfree time. The canoe trip was a riot, and I guess I did take charge when I saw 1/3 of the group floating down the rapids without their canoe. What a day, what a group, I love you all.
Opus/Paul
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Zed-Zed-nine plural-Zed alpha,
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Woobie
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Re: The battle with the beast
« Reply #15 on: Dec 21st, 2003, 6:57pm » |
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Ohhhhhhhhhhh MAN! Opus ! Vibes to you!
tina
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Renee
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Re: The battle with the beast
« Reply #16 on: Dec 21st, 2003, 8:16pm » |
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Paul,
I'm so sorry to hear that talking with her was a big mistake. I feel for you and your lack of support at home.
I hope your family gets well soon and I will tell Santa to delay hitting your house until your illnesses are over. After all, we dont want Santa getting sick before he gets to my house! 
PF vibes and prayers for you and your family and may your New Year's bring many happy and pf days.
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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TxBasslady
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Re: The battle with the beast
« Reply #17 on: Dec 21st, 2003, 10:17pm » |
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This is very sad, indeed.
I think that most of us sufferers, to an extent, are aware of the toll this takes on our families. During an attack, I am not just real condusive to a conversation. My husband watches the clock......and all I am able to say is "how much longer". I see his pain......but not until the pain of the ha is gone.
Much like Annette, my hubby lets me know he's there, tells me he loves me, then he backs off. He makes no smart-ass comments.......it's not necessary. My hits came around 230-300 a.m. So, he didn't sleep much more than I did. I know how lucky I am.
In New Orleans last week, while meeting with SteveG, Barbara, Edna and Tracey, I witnessed, for the first time, another clusterhead get hit. It's totally different when you're not the one getting hit. My heart absolutely broke for Tracey. For the first time, I saw the pain from the "other" side. I felt that feeling of total helplessness. I saw....and felt...what I am sure my husband felt while I was in cycle.
CH is real pain.....no matter which side you see it from. But it seems that those who do not "suffer" these horrendous ha's, could just maybe try to offer what support they are able to give, and cool it on the remarks and the "tone" in which those remarks are said. I know that our families are different, and therefore there is no "standard" for supporter's. But, in my opinion, every supporter connected to this board needs to go to the supporter's corner of this board, and read Jackie's "Another Kind of Pain". Now if that doesn't pull at the old heart strings, then nothing will. Just maybe.........reading that post will open some eyes and hearts and help some of you who seem to have such difficulty in supporting your loved one. Now, if you don't love your sufferer...........then that post will do you no good! But, if you do.............then it will.
It's not as if we asked for this pain........it's just the way the cards fell. I would NEVER wish this pain on another. However, I do wish that those who do not have these ha's, would at least TRY and offer support, no matter how little that might be.
Love and pf vibes to you, Opus
Jean CH Sufferer/Supporter (103 days pf)
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Linda_Howell
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Re: The battle with the beast
« Reply #18 on: Dec 21st, 2003, 10:36pm » |
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Paul.
Go back to Annettes post. Now there is a supporter.
we're here. Too.
Also. Please feel free to vent, unload...or anything else you need to do.
O.K.?
Linda Howell
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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