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Jennie

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Re: How do you cope??
Reply #25 - Nov 18^th, 2009 at 4:04am

coping is something I have yet to learn. Reading all of your posts has helped.

I am very thankful for the pain free days, but still fear the next hit. As mine are episodic and like clock work, the same time and days every year. Lasting up to 6 weeks.

I have not had a pain free thanksgiving, birthday, or wedding anv. in 5 years. So as you could imagine coping is very hard for me.

But with all this I am still blessed, I have a wonderful husband who has bent over backwards to do what ever it takes to make me more comfortable he paces the floor with me, works pressure points, and keeps the kido happy when the beast is here.

I could not go through this with out his love and support !!!!

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« Last Edit: Nov 18^th, 2009 at 4:05am by Jennie »

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LeLimey

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Re: How do you cope??
Reply #26 - Nov 18^th, 2009 at 4:08am

Damn, I've got that old prickly nose feeling and my eyes are stinging - I'm not getting weepy honest! (Yeah right!)

Hi Jennie, I've just replied to your thread on the new board. I'm glad you have such awesome support, it goes a long way to helping. Thank your hubby from us as it sounds like you have a real prize there.

NOW... lets get you some help so you get some pain free time to enjoy ALL those events this year!

Helen

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DennisM1045

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Re: How do you cope??
Reply #27 - Nov 18^th, 2009 at 3:10pm

Sometimes I can deal with the hit and move on. Other times it hits me like a ton of bricks and I'm left shattered and picking up the pieces. Either way I do move on. Sometimes it just takes longer.

One thing that really helps me is my family. I was in the family room recovering at 1am this morning with an empty e-tank at my feet, an empty coffee cup on the chair arm, holding my head, rocking with the afterglow. I was feeling alone and completely trashed beginning to think about how I was going to get up for work in five hours.

There was a soft voice from the doorway, it was Aidan up for some water and asking if there was anything she could do. I mumbled something that equated to "no". But she knew that. She remained a minute or two and then went back to bed without another word.

But in that simple exchange I was brought back outside myself by the strength I drew from her simple presence. The fog of war began to lift. I moved on.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Jeannie

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Re: How do you cope??
Reply #28 - Nov 18^th, 2009 at 3:29pm

Dennis,

Your post moved me...... It sounds as if Aiden was there for you as you were for her. I'll bet she doesn't even know how much she helped.

I have had similar experiences with family..... at home and here. Just a couple of weeks ago, I was at the computer, in the dark. Afraid to go back to sleep knowing that it would only bring another hit. There was a friend here to remind me I wasn't alone.

Knowing that there are people all around me who care...some I don't even know, is how I cope.

Jeannie

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« Last Edit: Nov 18^th, 2009 at 4:37pm by Jeannie »

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Joni

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Re: How do you cope??
Reply #29 - Nov 18^th, 2009 at 4:33pm

DennisM1045 wrote on Nov 18^th, 2009 at 3:10pm:

Sometimes I can deal with the hit and move on. Other times it hits me like a ton of bricks and I'm left shattered and picking up the pieces. Either way I do move on. Sometimes it just takes longer.

One thing that really helps me is my family. I was in the family room recovering at 1am this morning with an empty e-tank at my feet, an empty coffee cup on the chair arm, holding my head, rocking with the afterglow. I was feeling alone and completely trashed beginning to think about how I was going to get up for work in five hours.

There was a soft voice from the doorway, it was Aidan up for some water and asking if there was anything she could do. I mumbled something that equated to "no". But she knew that. She remained a minute or two and then went back to bed without another word.

But in that simple exchange I was brought back outside myself by the strength I drew from her simple presence. The fog of war began to lift. I moved on.

-Dennis-

Enjoyed your post, Dennis! I related with all of it! Thanks.

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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Jrcox

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Re: How do you cope??
Reply #30 - Nov 18^th, 2009 at 11:03pm

Man, have I been their. Just completely wiped, couldn't fight it anymore if you wanted to. Can talk, think, I'm sweating but am cold. It's like the beast takes away part of your soul. Then I look at the clock and it's 6:45 am and have to go to work and function afterwards. Most of the time my family and friends find me laying at the most randoms spot. Clothes thrown all over the house. It some times looks like the taz manian devil came through the house. And my shaking body is all that is left. My thought are with you dennis, I hope your k8, 9, 10's are minimal.

PFD to all
Jrcox

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Callico

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Re: How do you cope??
Reply #31 - Nov 19^th, 2009 at 4:47pm

Dennis, I can identify with you and Aiden. About 7 years ago when I went chronic I was having 8-10 major hits a day, and was totally wiped out. My youngest daughter was about 6 at the time, and knew to leave me alone when I was being hit, but she is very affectionate and it was difficult for her to do. One night I was sitting in my LazyBoy trying to recover when she walked over and gave me a piece of paper from a little note pad. She had drawn a picture of me sitting in my chair crying and her over in the corner of the room crying. It was the only way she knew to express her feeling. I still carry that in my wallet, and I treasure it.

That is not what allows me to cope, but it gives me a good reason to.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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LeLimey

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Re: How do you cope??
Reply #32 - Nov 19^th, 2009 at 5:01pm

Oh Jerry,
Thats heartrending. I couldn't read it without tearing up.
You know what everyone? Cluster headaches doesn't affect just one person. It's a family thing. Yeah, we might have the pain in our heads but those who love us have it in their hearts. Overall, I think we get the better end of the deal.
NO I AM NOT NEGATING THIS PAIN - just saying the emotional price is higher and lasts longer.

We cope - because we have to and there isn't anything else. It sounds so trite and I don't want it to but as Scarlet said, "Tomorrow IS another day" - and it might just be our first day without pain.
Never give up hope please

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: How do you cope?? Reply #33 - Nov 19^th, 2009 at 5:02pm What a precious story, Jerry!
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Jrcox

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Re: How do you cope??
Reply #34 - Nov 19^th, 2009 at 8:01pm

Man I have to stop reading this stuff at work. My coworkers are going start thinking I'm a nut job. That's story made me tear up. It was absolutley heart breaking. My son came up to me one time and said daddy I heard you crying last night. Why are you sad? I hate that this affects my family more than anything. I've always believed that watching a clusterhead had to be worse than being one.

Thanks everyone for the great posts

Jrcox

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jon019

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Re: How do you cope??
Reply #35 - Nov 19^th, 2009 at 8:30pm

DennisM1045 wrote on Nov 18^th, 2009 at 3:10pm:

Sometimes I can deal with the hit and move on. Other times it hits me like a ton of bricks and I'm left shattered and picking up the pieces. Either way I do move on. Sometimes it just takes longer.

One thing that really helps me is my family. I was in the family room recovering at 1am this morning with an empty e-tank at my feet, an empty coffee cup on the chair arm, holding my head, rocking with the afterglow. I was feeling alone and completely trashed beginning to think about how I was going to get up for work in five hours.

There was a soft voice from the doorway, it was Aidan up for some water and asking if there was anything she could do. I mumbled something that equated to "no". But she knew that. She remained a minute or two and then went back to bed without another word.

But in that simple exchange I was brought back outside myself by the strength I drew from her simple presence. The fog of war began to lift. I moved on.

-Dennis-

Sometimes it's the little things...both literally and figuratively that get us through...thanks for the reminder Dennis....and since we are brothers...please give Aidan a hug from Uncle Jon

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The LARGE print giveth....and the small print taketh away. Tom Waits

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jon019

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Re: How do you cope??
Reply #36 - Nov 19^th, 2009 at 8:40pm

Callico wrote on Nov 19^th, 2009 at 4:47pm:

Dennis, I can identify with you and Aiden. About 7 years ago when I went chronic I was having 8-10 major hits a day, and was totally wiped out. My youngest daughter was about 6 at the time, and knew to leave me alone when I was being hit, but she is very affectionate and it was difficult for her to do. One night I was sitting in my LazyBoy trying to recover when she walked over and gave me a piece of paper from a little note pad. She had drawn a picture of me sitting in my chair crying and her over in the corner of the room crying. It was the only way she knew to express her feeling. I still carry that in my wallet, and I treasure it.

That is not what allows me to cope, but it gives me a good reason to.

Jerry

Wow Jerry...teared me up too...what a wonderful story to share! I'd carry that picture FOREVER myself.

Your last sentence contains a WHOLE lot to think about. I puzzled over it...reread a number of times....
I think I get it now.

Thanks Bro'

Jon

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The LARGE print giveth....and the small print taketh away. Tom Waits

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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: How do you cope?? Reply #37 - Nov 19^th, 2009 at 8:44pm Jrcox wrote on Nov 19^th, 2009 at 8:01pm: I've always believed that watching a clusterhead had to be worse than being one. Jrcox Yup Jr....absolutely...have always thought so myself. Which is why a SUPPORTER is a precious being.... exhalted by this family.... Best, Jon
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Ray

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Re: How do you cope??
Reply #38 - Nov 19^th, 2009 at 11:38pm

I'll jump in on this one, bearing in mind that this is just for me...

How do YOU cope with the fear of the next hit? The dread, the withdrawing into yourself?
There isn't a fear of the next hit -- there is going to be a next hit. I try to keep my tools at hand, for me that is oxygen and imitrex AND I do my living in between hits.

How do YOU manage when people around you want your attention or to have fun with you and you just want to be left alone?
I spend too much time alone, so I go and have the fun. If I need to deal with a hit, I go out to the car, or whatever and use my O2 and Imitrex if necessary. Then I paint a smile on my face and go back and have fun.

How do YOU explain it to people who just don't understand? I equate the pain to a kidney stone, some have had them and others have heard of them. It is the closest pain I've ever experienced to that of CH. If they don't get it, I don't even try any more.

The hardest question of all was - How do you keep your chin up?
I found a good anti-depressant, for me, it is Effexor. For the most part it allows me to keep my chin up. Sharing with you all is good therapy also. For those that believe that prayer works (me) I also pray daily.

Each one has to find their own coping skills, tools, doctors, friends, etc. What works for me has evolved over many years.

Ray

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You have my prayers and compassion-I'm right there with you.

Dum tempus habemus, operemur bonum

*While we have the time, let us do good*

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DennisM1045

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Re: How do you cope??
Reply #39 - Nov 20^th, 2009 at 9:34am

Jerry, that's some little girl you've got there. I'm always amazed at the ways kids find to tell you what's on their minds.

Jon, now Aidan want's to know who the hell Jon is and why he wants to hug her Grin

Helen, you couldn't be more right. There is no other option than to just pick up the pieces and do it all again tomorrow ... or tonight ... or in 20 minutes. It just seems that it is easier to do that some days than others.

Fortunately for me, I have people around me that remind me why it's worth the effort. When it is darkest, I draw upon their strength.

Thanks for starting this thread...

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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