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Superpain
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Things not to do.
« on: Mar 24th, 2004, 4:11pm » |
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I'm sure just by the fact that you are all here that you probably don't do these things. My supporter is somewhat less than perfect... While she tries to be sympathetic and helpful, there is no helping and I don't really need sympathy. But as a supporter I feel there are things that just should not be said or done. She see's me have them as all of you do, but until you actually have one there is no way to really grasp the depth and intensity of the pain. Basically don't be selfish.
Don't ever say "this is driving me crazy!"
You don't know crazy!!!
Don't ever get pissed because of YOUR lack of sleep!
I know it sucks and you are tired too, but I'd PAY someone to keep me up all night if it meant I didn't get a HA!
And under no circumstances, EVER, say any variation of "can't you go sleep on the couch?"
I have since resigned myself to sleeping on the couch to avoid this... 
Don't get your panties in a wad because you aren't getting enough attention because of the constant HA's...
And if that is the way you feel, don't ever let it show. In other words don't ever act "put out" by your sufferer's HA's.
As I said, I know none of you would do that... I just need to vent a little. Thanks.
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Chris
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Margi
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Re: Things not to do.
« Reply #1 on: Mar 24th, 2004, 4:31pm » |
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Hi Chris,
I'm sorry to hear you're not getting good support at home and I realize that you were very frustrated when you put up this post.
However, I'm afraid your post is going to be received as "preaching to the choir" here. Please don't think that the supporters on this board (I'm willing to bet that NONE of us) are reacting the way yours is, ok?
The supporters that are here are here because we want to learn how to help. The vast majority of us HAVE learned how, Chris. I would doubt that there is a selfish supporter here. In fact, it's kind of an oxymoron: "selfish supporter" - the two words just kind of cancel each other out.
Please go read Jackie's post titled Another Kind of Pain before you assume that we are all "put out" by clusters or that we don't "grasp" what you go through. No, we haven't physically felt your pain - but, Chris, you haven't felt ours either, ok? It's rare that a supporter will even talk about their pain - what's the point, right?
Before you flame me for putting words in your mouth, I do realize that you didn't say that and I do realize you're just venting, ok? Allow me to just stick up for the supporters that HAVE taken the time to sit here and educate themselves?
I strongly suggest you tell your supporter about this forum and give her a chance to educate herself. It may help her to better understand the complications of life in Clusteropolis.
I chair the Family Services Team, Chris. I would be more than happy to help your supporter to understand better and give her some techniques for coping. My email address is moxie_miss@hotmail.com, or she can find the Family Services Team here: http://www.clusterheadaches.org/family/index.htm
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Superpain
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Re: Things not to do.
« Reply #2 on: Mar 24th, 2004, 5:40pm » |
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Like I said... I know just by the fact that you are all here, you would not do any of those things. 
I've just been getting a little frustrated lately and need to vent a bit. It's hard enough to have these things all by itself, but to recieve grief from another about it is really depressing.
That's the same reason I took medical leave from work... I couldn't handle the lack of understanding from management or the willingness to even try to empathise. I'm going crazy getting hammered every day and night with these things and it seems like all I run into around me is always about everyone elses needs. And normally that's fine, I'm willing to oblige... But I'm the one in need right now and no one in my life of around me understands this (except for all of you), and I'm tired of having to deal with everyone elses problems, issues, desires or anything else when my whole world right now is centered around pain that none of them could ever understand... It's frustrating as hell.
Again, pay attention to my disclaimer. None of you apply... Please don't take it the wrong way. I know it sucks for you all too. I'm just venting. And I applaud you all for being so supportive and assering yourselves to try to understand and make things better for your sufferers.
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Margi
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Re: Things not to do.
« Reply #3 on: Mar 24th, 2004, 11:01pm » |
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Fair enough Chris. When you need a shoulder, there are lots of us here who can lend you one. We honestly DO respect what you go through and will do everything our power to help you cope. You're among friends here.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Superpain
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Re: Things not to do.
« Reply #4 on: Mar 25th, 2004, 12:17am » |
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Thanks! 
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Chris
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MrsJDH
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Re: Things not to do.
« Reply #5 on: Mar 25th, 2004, 9:06am » |
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Hi Chris,
Just a suggestion, any chance of having your supporter having a look here? Maybe your supporter just needs to learn, like the rest of us did, how to support and cope with their own feelings at the same time.
Us supporter's need support too! This is the best place to get it . This group is always here to listen, advise and relate to what another supporter is experiencing and feeling.
Wishing you and your supporter PFDN!
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Helpless
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Re: Things not to do.
« Reply #6 on: Mar 25th, 2004, 5:45pm » |
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Well I cant say why your supporter would react the way she does , but maybe its because she cant deal with her own feelings of helplessness..... I know that at times I would do anything in the world to beable to do more to help my sufferer.... And it does get frustrating... Not beacause of the lack of sleep or the inconvenience of the HAs but because you know you cant REALLY do anything to help... I for one hate to have to sit by and watch him suffer, knowing the only thing I can do is watch.... But I deal with it and know that it WILL end and it WILL get better... Have you tried talking to your supporter about why she says or does these things? Maybe it will help... If not I am sorry..... I hope all gets better for you and your supporter.... I know it means alot to a sufferer to have someone that can be there and understand in what little way we can..... Ask her to get on and talk to some of us.... If she really wants to understand and to help she will at least try.... Hopeing all in your life gets better....
Helpless
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Superpain
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Re: Things not to do.
« Reply #7 on: Mar 26th, 2004, 3:08am » |
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Thanks for the replies and insight.
I have spoken to her a bit, and she is improving.
You're probably right. I'm sure it's a lack of understanding and frustration in being helpless since this is her first real bout with seeing them in full force.
Perhaps getting into this severe part of the cycle has made me selfish and less than totally understanding.
The thing about bringing her here, as I have tried is she freakin hates BBS', because I spend alot of time on this one and another one, and on the computer in general, so she's come to resent it/them... But she's read a few things and I'll keep working on it!
Thanks again!
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| « Last Edit: Mar 26th, 2004, 3:09am by Superpain » |
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Chris
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Mark C
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Re: Things not to do.
« Reply #8 on: Mar 26th, 2004, 4:39am » |
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Look at this letter. We will have a final draft on the O.U.C.H board soon. I thought it was really good and to the point. Please feel free to use it.
Hi Margi! 
PFDAN's
Mark
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Helpless
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Re: Things not to do.
« Reply #9 on: Mar 26th, 2004, 10:45am » |
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Well I truely hope it helps out... Maybe it will help you both see it from the others point of view.... Just stick to it and all should go well , after all good comunication is the best thing in a relationship.... If you dont have the ability to talk about what is bothering you both about all of this, then you will never be able to get past it......
Helpless
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