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Clusterheads and the people who love us (Read 1475 times)

primetime

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Clusterheads and the people who love us
Feb 15^th, 2011 at 12:42pm

First and foremost, a heartfelt thanks to everyone on this board. The information, advice, support and catharsis provided by this board is simply invaluable to me.

For years, I tried my absolute best to shield my loved ones, my wife specifically from my clusters. I would do whatever I could to avoid her seeing me in really bad shape. As I've learned more about clusters over the last few years (unfortunatley because they've become more frequent), I've had no choice but to "bring her into the fold".

She's sweet, loving and concerned, which I appreciate immensely. On the other hand, she's been giving me a hard time about getting more tests done and she doesn't really understand the characteristics of CH, no matter how I try to explain it.

I'm just curious as to how everyone deals with, talks to, interacts with their loved ones/support system. Any advice on discussing this topic would be greatly appreciated. Thanks!!

"Our greatest glory is not in never failing, but in rising up every time we fail." -Ralph Waldo Emerson

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Clusterheads and the people who love us
Reply #1 - Feb 15^th, 2011 at 1:12pm

Send her to the supporters board. My supporter, wife of 28 years, hangs out there. They can bitch about what a pain we can be on cycle, Wink

get a sympathetic ear from someone else who has had to watch a loved one squirm on the floor and cry like a baby, and most importantly, be re assured that while they hurt like hell, they don't kill us.

Supporters experience a different kind of pain then the sufferer does. I cannot imagine watching my wife endure a K-10, just as I can't imagine what's gone thru her head when she's had to watch me.

Our supporters board is made up of some pretty special people, I think yours would really benefit by spending some time with them.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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jonmach

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ocan city md
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Re: Clusterheads and the people who love us
Reply #2 - Feb 15^th, 2011 at 1:37pm

It is a dilemma isnt it. Just got an MRI of my brain to prove it wasnt an aneurysm, tumor or something else. i spose it has been prettty cool looking at my brain. 260 images and not a thing out of place. Now how and the Hell can i have this much pain and the butter knife handle sticking thru my eye not show up on MRI just boggles my mind. i would go back to hiding it from her as best you can thats what ive done and it has helped.lol just kidding really the support group here is awsume and can help you help her help you. My wish for you both is no headaches
God Bless
jon

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Samiam

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Re: Clusterheads and the people who love us
Reply #3 - Feb 15^th, 2011 at 4:12pm

I have a supportive husband but really let's face it unless you have experienced the pain of a cluster no matter how much they read no matter how much they see us go through this they will never be able to fully understand. They can be supportive, compassionate, sympathetic and for that I'm grateful but as for understanding I think it's too much to ask anyone to understand.

Sami

"A smart man learns from his mistakes......A wise man learns from the mistakes of others"

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Callico

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Re: Clusterheads and the people who love us
Reply #4 - Feb 19^th, 2011 at 10:47pm

I agree fully with Joe. Bring her here and let her learn what is going on and how to deal with it. My wife doesn't come on although she is a great supporter. She has helped me deal with them for over 20 yrs before I found this place though, so she has a very good handle on what is going on. We've worked out how best to deal with it. She knows it is happening, but I try my best to keep it from her as much as I can. Most of mine will happen in the late evening after she has gone to bed, and I don't go until I know they are done for the night. (I don't get REM hits)

You two will have to work it out between yourselves, but DON'T shut her out of it. You can keep her from seeing you getting hit as you wish, but DON'T shut her out. She knows you are suffering, so she suffers too. Her suffering is just not visible. Allow her some means of helping you and allow her to soften her load.

Jerry

"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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George

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Re: Clusterheads and the people who love us
Reply #5 - Feb 20^th, 2011 at 2:22am

I began getting hit with episodic CH around 45 years ago, and I've been married for almost 35 years. So it was inevitable that my wife would see them from time to time, despite the extreme lengths I went to to keep them hidden. To this day, my daughter has only seen me get hit once (last time I went through a cycle in 2009), and she's 20. So yeah--I know what you're talking about. Embarrassed

I'm a "hider". The only thing I want when I'm having an attack is to be left alone, and I don't want anyone to see me. For those of us who are "hiders", it's almost a reflex--something atavistic, and uncontrollable. I'd burrow into the earth and pull it over me if I could.

By all means, bring your loved ones into the loop if it is at all possible for you to do so. It's the right thing.

But for those who can't bear to have anyone see them during an attack, all I can say is that I completely understand.

Best wishes,

George

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Batty

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Re: Clusterheads and the people who love us
Reply #6 - Feb 20^th, 2011 at 12:37pm

Primetime...
Please pass my respect and regards to your Lovely Wife, for her support to you...

I think it was May, 2009, when I had a K10 (which, Thank God, is very rare for me!)

I was on my hands and knees in the hall, with my forehead on the floor (during the afternoon, again, normally I get them after I go to sleep')

My STBXW just stepped over me......

You have half the battle won with her beside you....

Respect

Gary

"An old Wolf may lose his teeth, but never his nature.."

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deltadarlin

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Re: Clusterheads and the people who love us
Reply #7 - Feb 20^th, 2011 at 4:14pm

Batty wrote on Feb 20^th, 2011 at 12:37pm:

I was on my hands and knees in the hall, with my forehead on the floor (during the afternoon, again, normally I get them after I go to sleep')

My STBXW just stepped over me......

Respect

Gary

I should think that your STBXW should give thanks that you aren't now a widower.

As a supporter, I've seen it all, the good, the bad and the ugly. If he had tried to hide it from me, I most likely would have been in a state of absolute panic (fear of the unknown is the absolute worse fear there is). George, he's like you in that he does hide when he's being hit, but I'm also within hearing distance if he needs anything.

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