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Title: Question about support people Post by I Cant Dance on Apr 14th, 2006, 12:30pm Here's the deal... I have been in a real mental funk dealing with my cycle. I am trying to get out of it and strengthen my frame of mind by trying not to think about or dwell on the issue during my good times. I have been spending a lot of time dreading the next hit and have pretty much become a prisoner in my own home and mind. Again, to combat this I have been trying to occupy myself with other things. I love my wife, and she is an amazing woman and terrific in the area of support. The issue is that she will not let it go now. I tend to isolate myself during a hit, and she is not always around or up at night when I have them. I went off on her this morning for asking me how my night was..I mean I blew up and told her to leave me the hell alone about it. I didn't mean to get on her (at least not that way...lol), but I was in a good frame of mind and not thinking about it at all...peace if only for a moment during a time when I did not have shadows. So what happens? She starts asking questions about it and brings me down into the reality of what I'm facing and about to go through again in a little while. So much for a few moments of peace. I feel like I am getting the third degree with questions all the time. I know she means well and just wants to help me and also try to understand what is going on. It has been 5-6 years now, and I would think I have answered enough frickin questions. How do I kindly tell her to leave it alone and that I'll talk about it when I feel like it? I have told her this, but it just doesn't stop. Sometimes are worse than others, but I know it is just me and my reaction. She is so afraid I am going to off myself, yet I have never tried or given indication that I was even considering it. Granted, this is the worst cycle I have ever had, and I am down a lot more, but still... Thanks for the ear and letting me vent. |
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Title: Re: Question about support people Post by aprilbee on Apr 14th, 2006, 1:21pm She's being patient with you, try being patient with her.. she'll get it soon and will know to leave well enough alone. My husband has tried to "fix" me for years, and is always frustrated, but he has learned to be patient and your wife will too. She just loves you and wants you to feel good and be happy, not such a terrible thing huh? Hang in there, you're LUCKY to have someone who cares enough to ask... ;) |
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Title: Re: Question about support people Post by nani on Apr 14th, 2006, 1:28pm Could you imagine being in her shoes? Watching someone you love go through this and having no power to do anything about it? I've always said that I'm so grateful that I'm not a supporter. I'm sorry you're having such a hard time. It sucks, I know. Let her know how you feel, and discuss ways that both your needs can be met. Do this when you're in a good enough place pain wise to stay reasonable. She has needs, too. pain free wishes, nani |
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Title: Re: Question about support people Post by zwibbs/Scott on Apr 14th, 2006, 2:08pm When I am in a cycle--I fell sorry for my family because they try tip toeing around the house. When my daughter was little I secluded myself in a room and the attack was brutal--went on for hours, I finally wrapped my head in a damp towel and screamed at the top of my lungs. My daughter never ever forgot that--I think it affected her , and to this day she fells the worst when I am cycling.-----Be patient with everyone , especially yourself. |
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Title: Re: Question about support people Post by Cathi04 on Apr 14th, 2006, 2:12pm Can't Dance, I think this is the part I hate the most.....The Beast is getting to both of you! I see 2 things going on here. The Beast is doing his best to destroy your outlook. Someone once described it as "getting too close to the fire". I want you to TRY focusing on the PF times, rather than anticipating....and dreading the hits. YES, it is physiological, but it is emotional, too-and the emotional can take you down much faster, actually. Take some quiet time with your lady and discuss this. Openly, with candor, and with love. And, please, not when you are ramping up.Assure her of 2 things.. 1-That you will be ok after the hit is over 2-That you will tell her whatever you might need when you are getting hit. Then ask her kindly not to make CH the major focus of your lives, but YOU have to try to do the same. Never let the beast win, and if he is tearing apart your life, he is winning one small battle. Please also encourage your wife to come visit us as well. She is in need of support as much as you, and there is so much experience here from the supporter's side, she has everything to gain by reading and learning and reaching out as well. Be patient with each other and try to remember this will pass. Oh, and keep posting here. Tons of help is available! Wishing you PF days and nights, Cathi |
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Title: Re: Question about support people Post by Dragnlance on Apr 14th, 2006, 2:47pm Hey Man, One of the symptoms of a major hit or cycle is iritablity. Be aware of this and you can avoid snapping at your family and friends. It is very easy to fall into that part of the cycle because of the pain. We all know this. The hard part is working thru it so that you can live your life. My wife has had to nurse me thru 21 years of the monster hits. She knows what I need and what not to do. Your wife will too, but as the ladys mentioned earlier, you have to have a good heart to heart with your wife. I strongly suggest you do this. CH can ruin your life IF YOU LET IT. Your wife may get sick of it and leave if you do not communicate. Don't tell her what you want. Explain you FEEL about the questions, and suggest other things she can talk to you about. REMEMBER, she loves you, or she would not have stuck this out as long as she has. Because of this, she feels helpless and is looking for ways to help you. Some things I do, when I get into the "moods"... I go into the country for a long walk, where there are no people. (or very few) and enjoy the weather, the peace and solitude. If I cant do that, I listen to my favorite music, or kill monsters on the computer. Sometimes I play with the dogs, or just sit on the floor and pet them. ANYTHING that you normally enjoy doing, you should try to do it. Change your attitude. Get pissed at the monster for attempting to ruin your life, and take your life back. Don't live in fear of the monster. Get pissed at the monster. Use your anger. Survive, LIVE your life. Trust me, it is hard, but you have to do it now, or you will loose, and some of the things you loose are too precious to get back. Lance |
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Title: Re: Question about support people Post by Sandy_C on Apr 14th, 2006, 2:50pm I agree with Nani. My husband, my only supporter living at hime, is awesome, but it makes me feel so bad, because both he and I know there is absolutely nothing he can do to help me, but yet, he feels the need to "be there" for me. He gives up so much for me when I'm in cycle, so even when in cycle but between hits, I do everything I can to make up to him for those times he has missed out, and has worried about me. I let him know that his love, tenderness, concern, and caring are the best medicine I could ask for. He also asks me about the hit, or hits, how bad was it, do you think you'll get another one tonight - and we talk about it. We talk about how the cycle is going, was the last hit really bad, or mid level (he's seen the Kip scale) -we talk about my CH cycle. I tell him because he wants to know, it educates him, and I feel good that he cares. Maybe you are dwelling so hard on the good time, that when your wife shows concern, or asks questions, you blow up because it remind you of the bad times. There's no point in focusing on (or trying NOT to focus on) your "next hit" because there will be one. But, there is also no point in trying to focus only on the good times, because they will not be there soon. This is the cycle of CH. Better to focus on having your wife at your side, enjoy that you are PF for the moment knowing it won't last. Put your mental energies into knowing that it's good right now, but it's going to get bad again, but it will get good again. Talk with her about it. Let her know how much you value her love and support when it's bad, and don't shove her concern away when you are PF. Supporters are the most important and effective treatment for CH. Better than drugs, "alternatives" anything. Treasure your supporter. Sandy |
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Title: Re: Question about support people Post by Dragnlance on Apr 14th, 2006, 3:03pm I don't know what I would do if I did not have my wife as a supporter.... |
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Title: Re: Question about support people Post by Redd715 on Apr 14th, 2006, 3:18pm I'm in a unique position to relate to this issue. Not only do I suffer CH but so does my boyfriend. (Jody) Let me play out a situation that happened jsut this afternoon. Jody was working on my car, and we had to run for a part. He's starting to get at the store, and I tell him I'm driving home. He gets stubborn and says he drives to and from work with shadows all the time. Well this quickly ramped up to more than just a shadow, and I walk to the drivers side, and with his fingers pressing into both his ear and his temple he begrudgingly takes a seat in the passenger side. I'm driving threw Good Friday Church has let out traffic where vehicles are being driven by gaurdian angels who never took drivers education. Tears are pouring from his eye and he's cursing the beast for trying to ruin a beautiful day, and asks me to pull into the gas station where he hightails it in and buys 2 cans of Red Bull. Sucks the first one down so fast we hadn't barely left the parking lot, opens the second and has that slammed down before we get home less than a mile down the road. All the while I'm on the verge of tears knowing full well first hand what he's dealing with, knowing full well I'm also helpless to do anything to stop it. The beast effects her, though in a different way, just as much as it does you. This IS something that can bring you both together and be stronger if you fight it together. Just my 2 cents. Pegg |
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Title: Re: Question about support people Post by Dragnlance on Apr 14th, 2006, 3:39pm Well said Pegg. My hat is off to you, for dealing with your situation so well. You are awsome |
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Title: Re: Question about support people Post by I Cant Dance on Apr 14th, 2006, 3:47pm Thanks, I am probably going to ask her to read this thread as well. I appreciate your comments and advice. |
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Title: Re: Question about support people Post by Jody on Apr 14th, 2006, 3:58pm I can only say this, I have watched Pegg get hit and she has been there for alot of mine and it goes both ways I experiance both sides of the coin. It sucks going through a hit this is true. It is equally hard dealing with the feeling of complete helplessness that goes with watching someone you really care about going through the pain. It is a no win situation. Just remember she cares and loves you and would probably wish to take all your pain. It can be hard at times but remember good or bad shes just concerned for you. Hang in there and hope you are PF. Jody |
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Title: Re: Question about support people Post by Dragnlance on Apr 14th, 2006, 3:59pm Jody, you are awesome too |
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Title: Re: Question about support people Post by TomM on Apr 14th, 2006, 4:35pm on 04/14/06 at 12:30:23, I Cant Dance wrote:
Tell her everything you wrote here. She'll understand. TomM |
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Title: Re: Question about support people Post by stevegeebe on Apr 14th, 2006, 4:47pm Great Thread. Has she read this? Steve G |
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Title: Re: Question about support people Post by Margi on Apr 14th, 2006, 5:18pm Thank you so much, I Can't Dance, for this thread. I've learned a lot from reading your words. My hubby has a t-shirt that says: "Men wouldn't lie... if women didn't ask so many questions." What can I say? We have enquiring minds. ;) But, again, thanks for what you've said here. Gives a real good perspective for us supporters out here. |
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Title: Re: Question about support people Post by PL259 on Apr 14th, 2006, 7:16pm Quote:
Been there done that Quote:
Been there done that also. For years I refused to realize what my family was going through. I ranted, raved that they didn't "understand", that their freaking head didn't hurt. That they didn't feel the pain. As slow as I am it fianlly soaked in. Yes, my wife felt extreme pain watching me. She feared for me. When I was at my worst she took our child and left the house because she was not sure what I would do. I can't imagine what she felt then. As I cannot completely explain the pain to her, I don't think she can fully explain her pain to me. We are all in this together, just be damn glad you got a good one.Take time, talk to her, let her know whats up, then LISTEN to her also. Best of luck JImbo |
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Title: Re: Question about support people Post by Kris_in_SJ on Apr 14th, 2006, 8:31pm This is a really great thread ... and something we haven't touched on in depth before. I consider my husband one of the greatest supporters in the world - it took awhile though. He would hover ... bring ice ... bring heat ... rub my back ... all things that drove me nearly over the edge! Finally, on a clear-headed and PF day, I simply told him that when in the throes of an attack, I simply need to be alone to deal with it. They're all equally bad and I simply need to concentrate on getting past them. I also explained that I really don't want to talk about it. During the day, I prefer to focus on more pleasant things. Of course, being married for over 28 years helps in this type of communication. Now - when I'm in cycle, we sleep in separate rooms. No hovering or worrying. I can take my Trex, rock around, pace and pull my hair without worrying him too much. He always knows when I've had a bad night now. However, instead of asking me how it was, he simply makes me his very special scrambled eggs and gives me lots of kisses and hugs. Open, honest communication without anger usually works. Even when you feel like total crap because of what you're going through. Kris |
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Title: Re: Question about support people Post by cootie on Apr 14th, 2006, 9:26pm It's ALL anyone talks about around here when Brad is in cycle........I mean it like RULES and RUNS everything. If we have plans we talk about gettin hit there and what he wants to do (LEAVE) and he gets pretty CRABBY when it's comeing on and kinda don't care what he says so I gotta be prepared for that. Kinda like talkin about sumthin till you are sick and tired of the subject goin to a shirnk or sumthin. She probly still has the NEED to know what is goin on and not getting enuff answers or exact concept she needs to totally understand it all and where you stand with it all. Prolly doesn't want to let it go and you do sumthin stupid (not that you would) and she feel guilty she didn't try to keep up with how you were doing and feeling 24/7 while dealin with it. Did that make sense ? She's still new at it.........I've seen this crap first had for close to 20 years now or so. (lost count) He's outa cycle and we are fineally winding down talkin bout it less and now he barely mentions it. He gets one "twinge" tho and he gets real panicy. Pain without gain Pam |
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Title: Re: Question about support people Post by Drk^Angel on Apr 14th, 2006, 9:35pm Be glad that she wants to be a supporter. Not everyone is so lucky with their spouse choices. PFDAN..................................... Drk^Angel |
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Title: Re: Question about support people Post by minnie on Apr 14th, 2006, 9:38pm First off hugs to you and your wife.Neither one of you will completely know what the others going through but I know we try anyways.I'm a supporter and seeing someone you love getting hit is heartwrenching.I can only guess about the situation but here goes.when she asks how you night was and the hit there could be a few reasons.one is some cycles ramp and then go down in # of hits and intensity.If she keeps track she may be trying to in her head figure out if your cycle may be coming to a end soon.Yes the beast is not predictable but I'm sure those who go through this know what I mean by tracking it.Does this make sense?hope so. Another thing is if she knows you have had a bad night she will kinda know you'll be tired and drained.you may not want to or be able to do too much.Fatigue is a huge effect from hits.If you have a good night then she may be able to plan to do things and know your not over tired. Yet something else to think of is we want to feel like were helping even when we can't.we ask questions and then if we know how your night went we can talk and let you know your not alone.It sounds like during a hit she leaves you alone and after the hit she just wants to love and support you.I hope I'm reading this right. Please know that I'm just trying to shed light on why she is asking questions.these are just gueses and things I have done.you are in alot of pain and it is hard not to get upset.the beast comes and goes and there is no face to yell at.sometimes the ones we Love the most are hurt the most.You obviously Love her and regret when you yell.Let her know and then maybe set up a system.This may sound stupid but heres a suggestion anyways take it or leave it.Find one small signal that says good night or bad night.maybe a little something left on the bedstand that will let her know your were dancing with the beast all night please leave me be or it wasn't to bad last night so today we can go on as normal.Only you know if your shadowing and without asking we sometimes may not know. Please have her come to the site she can post her and theres also the supporters corner where we will welcome her with open arms,laugh cry and scream right along with her.If you go to the supporters corner you will see a wonderful post called "another kind of pain" it would be good for both you and your wife to read it.One of our dear,wise supporters by the name of Jackie penned it and truer more heartwrenching words have never been spoken. May you soon be painfree and the beast just a memory for you and your wife. Hugs, Minnie |
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Title: Re: Question about support people Post by Jonny on Apr 14th, 2006, 9:41pm In the last sixteen years I have only uddered the phrase "Leave me the fuck alone" twice. Some get it, some dont. |
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Title: Re: Question about support people Post by BMoneeTheMoneeMan on Apr 14th, 2006, 10:11pm Oh, man, sorry to hear about your blow up. Of course, she is asking every question she can think of because she loves you and wants to at least know what you go through. I'm not Dr Phil, but I have a wife too. I have 2 ideas. 1. At a time when you are not hurting or feel particularly irritable, discuss with her how you feel. Tell her that you think about CH and sleep dep all the time, and live under the fear of sleep. I know that in the morning after a rough nite, the last thing I wanna do is talk about it, and so I told my wife that. She doesnt ask me anymore. If its something I wanna talk about at another time, I talk. 2. Be sure to find time every day or whatever to talk with your wife about how you are doing. Let her ask questions, try not to get heated. As you can see, #1 is to suit your emotional needs, #2 is to give your wife what she needs.......she needs to know how you are feeling. You cant expect to do #1 without doing #2. Its not fair. Thats just my 2 cents. BMonee |
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Title: Re: Question about support people Post by DonnaHar on Apr 14th, 2006, 10:12pm This is a good topic to bring up and discuss. I've been on both sides of the fence. I never had a shadow.....just went from 0 to 8 or 9 in 10 minutes. I know what it's like to have questions asked and someone trying to comfort me when I can't stand being talked to or touched. The beast makes us angry people for the duration of a cycle. We are fighting an ugly beast....one that can't be seen or touched. We can't even surrender because he won't hear us, so we fight a losing battle. We know when he is coming after us by the feelings of his presense...the beginning of the ride to the highest point of pain. When it's over and he's won the battle, he dumps us on the floor and leaves us ...afraid of his next attack. Do you feel insecure? I did. Then when he was 17, my sons "migraines" turned into cluster headaches, and OMG how my heart hurt. I saw the eye turn from white to pink to red and the nose start running on the eye side and I knew before he did what was happening. He is a lot more angry and vocal when being hit. My mom instincts want to hold and rock him and tell him it will be OK soon, but we all know better than to try that, so we leave them alone (to a point..funny how we pretend that we have to walk past where they are in order to get our chores done.) He won't talk about his battles either, but Lucky Me, I have the good fortune of understanding what he has been through. A supporter has a very tough job.....they are working blind, but by shear love and pain they try to follow your lead when it comes to helping you. It is up to you to help them understand what you feel and how you feel about it. It is up to you to help them understand that you need to be alone with your battle....and that no one can help during the hit. If there is something they can fetch for you in the beginning of the hit, let them know in advance so that you are not barking orders at the last minute. If you have a good supporter, if you have a supporter that you love and want to stay with, you must communicate. They can't feel deserted and helpless forever. And please try to understand and believe that your loved ones do NOT think anything less of you because of how you react to your headaches. Would they think less of you if you had any other disease? I don't think so. The only difference here is that not many have had experience with cluster sufferers before and they are truly frightening to see. Knowledge is power on both sides of the fence. Together you can endure and win. Invite your supporter to visit our Supporters section here on this site. It is of serious help to many. |
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Title: Re: Question about support people Post by I_can_dance on Apr 15th, 2006, 12:00am Now, from my perspective… Yes, I acknowledge it is difficult to stand idle, unable to change the pain. It is week 6 of his cycle with frequency(4-6), duration(1-2+hrs), and intensity ramping up, not down.(KIP 8-9) Meanwhile, I attempt to keep things as normal as I can with 3 young children busy in baseball, cub scouts etc. The children and I have learned to allow him to battle in solitude but I am constantly with him in my thoughts and prayers during each hit. I know he hurts not only from the cluster attacks, but also because he misses his kids and PF life. He does not appear to respond to oxygen and has had side-effects with the triptans, verapamil, depakote, indocin, with no relief. His tool of choice is intense exercise…running, weights, stair climbing whatever. Despite his reassurances, I am still deeply concerned for his safety. He has recently passed out from exercising so intensely. I can’t stand the thought of losing him! This fear does wax and wane some and I am getting better about not panicking when he has not returned from his run when expected. Though he demonstrates strength beyond my imagination, I do still wonder how long he can physically and emotionally keep up with this. I ask questions out of concern and love. This morning I asked out of hope. I did not realize his usual morning hit came unexpectedly early, before I was awake. He is on day 4 of Kudzu. Could it be helping? We both try not to get our hopes up too high. It’s easier to ask ‘how was your night’ than ‘have you noticed a change from the kudzu yet?’ We have agreed that he will tell me if there is a change in his pattern and I will try to limit my questions. Good communication is essential through this and I know we will make it, together. We cannot hide this beast in the closet. |
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Title: Re: Question about support people Post by Dragnlance on Apr 15th, 2006, 12:05am An Honor to meet you, and you have my greatest respect. I believe a supporter has as tough a job as any in the world [smiley=bow.gif] |
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Title: Re: Question about support people Post by LadyElaine on Apr 15th, 2006, 2:03am My Husband use to be like that so much so. I would hide when I had a attack. After finding this place. I started printing out threads that I thought might help my Husband understand. They have a need to understand everything about what is hurtting us. What to do to help. Telling them to leave us alone does hurt their feelings. My husband does things now that really does help. Like he fixes the coffee pot everynight, so when I get up all I have to do is press the on switch. When your in a cluster that is a big help. He even fixes a cup with crean and sugar in it so all I have to do is pour. He keeps ice packs ready for me in the frezzer. We have a box that we made together years ago, That box has every thing I need in it. My meds and a few tricks of the trade. My O2 my husband keeps filled for me. Buy doing these things he feeks he is helping. My husband will sing to me durning a attack. I want my mind off the pain. Don't ask me any questions but you can sign to me. Buddy is a good singer. Talk to your wife, give her something to do, and explaine you don't want any mose or her just sitting watching. Tell her you will let her know a time to ask questions. Make time and answer them. Asking us if we are ok, seems like a dumb thing at the time, but that is really all a supporter can think to say. It is not dumb. Tell them no your not fine, but it helps to know she is in another doom and wants to help. That you feel bad that there is nothing she can do beside the basic. Then give her a kiss and tell her you are gald she cares. Let her read this board and let her post some of her questions here for us all to answer. The whole thing sucks but it can bring you closer done the right way. |
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Title: Re: Question about support people Post by Charlie on Apr 15th, 2006, 8:42pm Quote:
While not exact, this sums it up for me. My squeeze at the time "got it" and later on, mom. As I look back from reading all this, I realize that I was pretty lucky. Of course I was probably such a shit to be around most of the time that when they noticed what a prince I became after the euphoria I experienced when it was over, it must have been a relief for them too... http://www.netsync.net/users/charlies/gifs/sweat.gif Seriously: People need to feel that they can help and can't read our minds. They are so effen frustrated and even mad at themselves for being unable to do something. It's universal. We have to cut them a little slack. Surely they deserve it. I know how you feel though. CH is indeed a horror. Charlie |
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