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Title: Would you have been a good supporter? Post by Spoticus on Feb 16th, 2007, 7:11am If you weren't the one with CH ;) I don't know about some others, but personally I don't have any real supporters yet. I have a few friends that at least aren't the bad type. Generally speaking though, my family in particular, rate way way way down the supporter scale. While in cycle, I know at times I really get the urge to hate them for it. But this question always comes back to me, and really makes me wonder. Would I have been a good supporter or a supporter at all if I wasn't the one with CH? Personally I still can't decide. I know I am the one various friends confide their hardships in that they don't share with others. But mainly I feel I am good at listening, not so much at talking and offering any real support. Well before I had CH I knew that the distance I felt was that, I had was no reference from personal experience for what they were going through. Since having CH the realisation that you simply can't understand some problems if you haven't gone through them, has obviously increased a thousand fold. So how do I rate myself in hypothetical hindsight? I rate myself as sensitive to the sufferer but not truly emphatic. Which is strangely as good as I have gotten in support. Anyway, I am sure this topic must of came up a dozen times before but I really seem to struggle with the search system :) Also does anyone have some nice defined groupings we could lump supporters into? :) I know I have them stereotyped in my mind, just hard to describe concisely. |
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Title: Re: Would you have been a good supporter? Post by BarbaraD on Feb 16th, 2007, 7:21am You bring up a good point. No, I am not a good supporter. My dad and son have migraines and I never had any patience with them with their "little headaches". And when I first got hit with CH, my son has never given any quarter to them. Paybacks are hell! Over the years I've had some good friends who have been supporters and I have this MB, but my family gives no support. They just know to get out of my way when I get hit. Guess what goes around comes around. Hugs BD |
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Title: Re: Would you have been a good supporter? Post by thomas on Feb 16th, 2007, 9:14am No, I wouldn't have been. |
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Title: Re: Would you have been a good supporter? Post by gore2424 on Feb 16th, 2007, 9:54am I truely believe I would be and am a good supporter I have taking care of my dad he is 78 and has had a chronic stomach pain for over 4 years no-one can find anything wrong and many tests done some done 3-4 times right now he is living in an edlerly group home with 4 other ederly people with a CNA there 24/7 and a RN on call 24/7 he has his own room and they do everything like wash and clean and cook and order and give him his meds for him like i did for the last 4-6 years Terry |
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Title: Re: Would you have been a good supporter? Post by froggy on Feb 16th, 2007, 10:52am Interesting thread title. I'm the primary "supporter" of Tony with these CH's. And as I think of the title "Would you have been a good supporter?", all kinds of things come to mind. I think there are different levels of support. The one I happen to fall in is probably one of the most intense ones. Sometimes he's sitting there and I scream to myself that I'd gladly change places with him, or couldn't we split this up a little. He can have them for a month, then I can take them (joint custody). We have a heated conversation once in a while about how he gets the headaches and "I don't know what he's going through" (according to him). And I tell him I couldn't possibly understand the pain but I'm living and breathing every moment of this with him. Don't know if he fully gets that or not. But he knows that I'm there. |
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Title: Re: Would you have been a good supporter? Post by froggy on Feb 16th, 2007, 11:00am I had a friend that went through Hep C, chemo, the works and one of the big things I remember her being sad about and even resentful was her support system. Her family was really supportive, but they still demanded "mommy and wife" time from her like she wasn't even sick. She didn't seem to notice this but I did. Never said anything to her. The big disappointment was with her immediate family (sisters). They actually distanced themselves for 2 years while the whole thing was going down. I don't think she'll get over that anytime soon. The saving grace for her was her online support group. She once told me that if it wasn't for them, she felt she never would have made it through. |
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Title: Re: Would you have been a good supporter? Post by Mattrf on Feb 16th, 2007, 12:16pm I think I would be a good supporter, I have always been the first to jump in my car and do the drive no matter how far if friends or family needed me, even if I was not up to it. My step dad had a stroke a little over a year ago and even though I was in cycle I jumped in my car and drove five hours to spend time with him and my mom to give support. What sucks is none of my family or friends are good supporters and yes I have very serious resentment towards all of them because of the lack of compassion, I have even lost my best friend of many years because of his lack of understanding. All I can say is thank god for my wife and kids who are my biggest supporters and truly understand. It makes me sad to think of the collateral damage the beast does, he is not satisfied on trying to ruin just your life but wants to take out all your friends and family while he is at it. He is truly one mean ass bastard. Matt |
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Title: Re: Would you have been a good supporter? Post by starlight on Feb 16th, 2007, 1:18pm Wow, interesting question. Honestly I did not receive the support I needed with these HAs until I met my ex-boyfriend who did support me and researched the HAs a little and seemed to care and carried my O2 up 3 flights of stairs (actually went and got in when there was some "problem" with delivery/prescription/don't even remember at this point. My family wasn't too good--when I was teen/college years my sisters thought I was a "freak" and would "shun" me during HA time, my Dad seemed to care though, my Mom was mad if I would cry saying I shouldn't make other people miserable. My ex-boyfriend was good though about the HAs and really helped me during 2 horrendous cycles. Honestly I don't know if I would be a good supporter. Especially if the hypothetical person got them at night like I do--would I get up and keep me company during the night? I don't feel like I can say "yes I would" b/c I have never been expected to do that so I don't know if I could. I hope I would. Would I show love and understanding and know the person's pain was real and tell them everything will be OK and not to give up--YES. Edited to say: thinking about this more and I realize compassion is a weird thing you find in unexpected places. |
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Title: Re: Would you have been a good supporter? Post by JeffB on Feb 16th, 2007, 6:33pm I don't think I would've been at the age when I first got these things. |
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Title: Re: Would you have been a good supporter? Post by LeLimey on Feb 16th, 2007, 6:51pm Yes you would Jeff. You should see how good a supporter Jasper is. I wish I didn't have to be a supporter. I'd willingly double my hits not to be a supporter. I'm one type of supporter, one who DOES know what the pain is like so in a sense, its "easy" for me. I do know what it is from he inside out. Those who support and put up with our moods while being accused of "not knowing what I'm going through" - those are the ones who have my undying gratitude and admiration. I don't know I could be one of them. |
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Title: Re: Would you have been a good supporter? Post by duckie on Feb 16th, 2007, 7:07pm I don't think anyone knows what they are truly capable of until they are in the position. I would like to think I would be understanding and feel for them but who would know for sure. My boyfriend of 6 years has stayed with me through the first really bad cycles of CH (5 years ago) and this one now. I'm not sure if is really supportive in a traditional sense but he leaves me alone if I want him to and runs for the meds/red bull etc if I scream for it. In a strange sense he acknowledges it but when I'm not having an attack it's life as usual. It seems to work, the only thing is that I wish he would do the housework :D when I'm in cycle. My parents care alot and saw me have an attack for the first time at Christmas. Until then Mum thought it was like one of her really bad migraines x 3. Now she kinda looks at me funny sometimes and doesn't know what to say when I talk about it. I gave her the 'colleague and friend letter' which kind of helped. I think she just needs time to fully understand. I think I would be somewhere in between, whether that is a good thing or not I'm not quite sure. |
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Title: Re: Would you have been a good supporter? Post by Ob1kanobee on Feb 16th, 2007, 8:35pm As far as being a good supporter, I would have to use the 1 to 10 scale. I would probably be a 7 which is better than average (5 being average). Unless you have ever had one of these headaches, you can't imagine what they feel like, so as a supporter it would be hard to be empathetic. I also get migraines and tension headaches and I get just as much support for those as with a Cluster. That is because most people can relate to one of those. When you get hit by a cluster, everyone just seems to leave you alone (which is what I want anyway) and they just watch you do the dance, which is completely opposite of any other headache. It is hard to support someone who can't sit still and just wants you to leave them alone, ya know what I mean..... |
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Title: Re: Would you have been a good supporter? Post by BB on Feb 16th, 2007, 8:55pm When it involves someone you love and care for deeply, you will become a good supporter because you will try anything and everything possible to help. Annette |
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Title: Re: Would you have been a good supporter? Post by Charlie on Feb 16th, 2007, 9:06pm Dunno. I had a doctor that said: "You had cluster headaches? They can be very painful." He was one of those infant 30 year old doctors that hasn't lived long enough to have had some real pain experience. I was like that once. How I longed for those days when I was getting hit. What I'm saying is that until I got hit, I wouldn't have understood the level of agony experienced by a clusterhead. Charlie |
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Title: Re: Would you have been a good supporter? Post by the_watcher on Feb 16th, 2007, 10:35pm Having been a supporter for 40 years -this is my insight. I think I have gone through so many stages in supporting. At first I would wring my hands and cry silently and hover around him when he would have headaches. I would watch carefully how much meds he took and how often because he truly was in a place to not know what he was pumping down. As the years passed, I learned to tell him as he headed for the dark room to call me if he needed anything and sit quietly in prayer begging God to make it stop and maybe getting up once to see if he needs anything (cause he won't ask-breaks the concentration). He also learned not to dance with the beast so it seems to go a little easier on him. I am now resigned and wait it out. As to how people respond---there are givers and takers in this world. Woe unto you if you have been a giver, and you expect someone to look after you for a change. The takers don't like their apple cart to be upset nor do they have any desire to exert themselves to understand. After all they are the takers and have no concept of giving. Sorry if that sounds harsh; it's only the truth. |
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Title: Re: Would you have been a good supporter? Post by georgej on Feb 17th, 2007, 1:16am I don't know. I've been puzzling over this thread. I'd like to think that I would have been a good supporter, but if I hadn't had CH and someone close to me had, how would I have reacted? Having reached "a certain age", I've learned that empathy is most powerfully expressed when it relates somehow to a person's personal experience in some way. There really isn't any effective way I've ever found to communicate what CH is like to someone who doesn't get CH. Would another person have been able to communicate their experience with CH to me so that I truly comprehended it? I do know that when I am confronted with something that is difficult, I tend to grapple with it in some way rather than deny it or ignore it. I also know that preserving the well-being of the people who are close is extremely important to me, and always has been. So yes--in that sense, I can see that I may have been a good supporter. But I wonder how much the attitude and mindset I have now has been influenced by the fact that I have CH? I know that some of it has. It's made me less dismissive of other people's pain, for example. It's really not possible to completely put yourself into another person's mind and life--the life you might have had if things had been different. I might not be the person that I am now. Would I have reacted as I hope that I would? Would I have been as good a supporter as the two supporters that I have been fortunate to live with have been to me? You see--I don't know. Best, George |
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Title: Re: Would you have been a good supporter? Post by Redd715 on Feb 17th, 2007, 1:45am I thnk George stated this very eloquently. There really is no way to know what type of supporter we would have made had we not been the sufferer. So much of who we become as human beings, has to do with our personal experiences. We can only say, and only with a modicum of certainty, what and when or how we will act or react to any given situation based only on the people we are now, armed with the experiences we have had and the lessons learned. We can take away one experience but that one thing can change who we "would" have been in a major way. Butterfly effect. I'm sure everyone would hope they would be...but then we are all well aware that not everyone is cut out to be a supporter of a clusterhead. Better to have no supporter at all and be one's own Champion, than to have to deal with the beast AND a bad supporter too. |
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Title: Re: Would you have been a good supporter? Post by BrianJ on Feb 17th, 2007, 5:58am Well this is a tough one I think befor i had CH i would not have been a good suporter my reaction would probably have been "its just a HA get over it" But now i have them and understand the intence pain i could be a good suporter or would i umm im not to sure , im not sure i could deal with this from a supporters side i cant watch a loved one in pain and not be able to take it away i hope i never know if i'd be a good supporter took me ages to post this it give me alot to think about good subject :) PFDAN to all Brian |
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Title: Re: Would you have been a good supporter? Post by Guiseppi on Feb 17th, 2007, 10:21am Being a man, I would suck at being a supporter! We want a project we can analyze, develop a strategy for, and then fix! CH is the ultimate in an unfixable problem. I'm sure that's why God gave it to me instead of my poor wife! Guiseppi |
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Title: Re: Would you have been a good supporter? Post by BMoneeTheMoneeMan on Feb 18th, 2007, 1:49am hell no, i wouldnt know what the hell to do. My wife is my supporter. She knows to leave me some room when i get hit. I know its probably tough for her, but she knows the best thing to do it to leave me alone. |
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Title: Re: Would you have been a good supporter? Post by alienspacebabe on Feb 18th, 2007, 1:59am I have a family member who has a chronic disease with some nasty pain issues I've never had to deal with, and am a very good supporter for that person. Knowing myself the way I do, I would have researched the subject thoroughly. With that information, and asking the CHer what he/she wanted, I think I would have been a good supporter. Lizzie |
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