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Title: How do I help him Understand? Post by clusternewbe on Oct 3rd, 2006, 9:07am My husband tries to be sympathetic when I have a cluster, but the other day I told him about this web site and he said "Are you serious, it's just a headache." He knew immediately what he said was wrong. I'm not trying to complain about my husband... I just want to know how ya'll explain these beasts, and the pain we feel, to the people you love most? I would really appreciate any input. Thanks, ASh |
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Title: Re: How do I help him Understand? Post by Melissa on Oct 3rd, 2006, 9:15am http://www.ouch-us.org/chgeneral/colleagueletter.htm and http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1140471647 just for starters... |
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Title: Re: How do I help him Understand? Post by Margi on Oct 3rd, 2006, 9:58am and then have him read this: http://www.clusterheadaches.ca/DesktopDefault.aspx?tabid=100 (it's written for supporters) and here's our description of clusters for the layperson: http://www.clusterheadaches.ca/DesktopDefault.aspx |
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Title: Re: How do I help him Understand? Post by Trond on Oct 3rd, 2006, 10:36am I like this one as well: http://en.wikipedia.org/wiki/Cluster_headache And a short version my neuro wrote: (roughly translated from Norwegian): "Invalidizing headache with extreme pain. Prophylactic's are mostly and regrettably of litle effect. Often nightly attacs which results in little sleep." Or: Try waking youre boyfriend with a hammerblow the next time he falls asleep ;;D Trond |
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Title: Re: How do I help him Understand? Post by BMoneeTheMoneeMan on Oct 3rd, 2006, 10:37am Its a good thing he knew he made a mistake. We WISH it was just a headache. This is the most severe natural pain known to humans. They aren't just headaches that are commonly referred to as 'suicide headaches'. PF wishes to you. Do you take meds or treatments for your clusters? What kinds of things have you tried? BMonee |
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Title: Re: How do I help him Understand? Post by Margi on Oct 3rd, 2006, 10:42am on 10/03/06 at 10:36:57, Trond wrote:
nice. ::) |
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Title: Re: How do I help him Understand? Post by clusterwife on Oct 3rd, 2006, 11:06am Explain to him that if he had his arm ripped off at the shoulder without pain meds, concentrate that amount of pain to the temple, eye, and jaw area for hours on end. To some of us supporters that would be hell, but to the sufferers, that's a "Kip 6 or 7"! |
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Title: Re: How do I help him Understand? Post by BB on Oct 3rd, 2006, 11:39am Poke him in the eye hard with your nail then tell him its just a gentle, loving poke, shouldnt be that painful really ! :P Kidding aside, drag him to the puter and show him the site or print out some good stuff and give it to him to read. :) Take care and painfree wishes to you. Annette PS: If desperate, give us his mobile number and we will ALL ring him to tell him .... that should give him enough of a headache to start to understand ... ;) |
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Title: Re: How do I help him Understand? Post by clusternewbe on Oct 3rd, 2006, 12:01pm First of all... thank you for the laugh some of you guys gave me. When he made that comment i did feel like ripping off his arm, but we have enough dr. and hospital bills already! ;) Bmonee - I have a rescue drug, I don't know the name because I am at work, and axert. I'm currently looking into oxygen. If you have any suggestions I am all ears. BB - You are so funny, thanks for making me smile. I already printed out a sort of letter explaining the beast to friends and family from the OUCH website. I think it will help. Sometimes i just can not explain the pain i feel. It's like nothing else in the world. Thank you again for everything guys. You truly make me feel welcome here. PF wishes to you all. ASh |
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Title: Re: How do I help him Understand? Post by Linda_Howell on Oct 3rd, 2006, 12:33pm At least to his credit, he knew that what he said was wrong immediately. However, do you have any duct-tape in the house? Tell him you're gonna give him a neck rub, duct-tape him to the chair and push the PC under his nose. ;;D |
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Title: Re: How do I help him Understand? Post by TxBasslady on Oct 3rd, 2006, 12:39pm on 10/03/06 at 09:07:32, clusternewbe wrote:
I certainly don't think you're complaining about him...but I know it's frustrating. You would think that witnessing the pain of CH...explanations would not be necessary. Yeah, it would be great if he would come here...he needs to read the Supporter's area of the board. But if he never does that, that's ok too. Most of the supporter's here have spent years with their sufferer...they've seen what the pain can do to a person. CH is a bit of a learning experience...not just to the sufferer's....but the supporter's as well. Maybe in time, you're hubby will understand. It's evident from what you say that he cares... All the best to you, Jean |
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Title: Re: How do I help him Understand? Post by Mattrf on Oct 3rd, 2006, 1:54pm I feel for you, my wife does try very hard to understand what I am going through but only a suffer can truly understand the hell in witch we are forced to live. You also tend worry about saying to much and sounding like you are whining and also not wanting to stress your partner out, it just goes on and on. I wish there was an easy way to make him understand the pain without removing any of his body parts but not sure there is one. My wife does not come, here but when I first found this site she did poke around and read a bunch of the posts and it did help her to understand, I think it also scared the hell out of her at the same time and she refuses to come back or at least let me know she has come back, for all I know she is here and just keeping an eye on me to get a read on how I am truly doing since I tend to understate it as much as I can to spare her the pain of knowing how bad I really am. You really do need to get him to at least spend an hour or so reading here so he can get a feel for what you are going through. I hope you get some PF time and I really hope he visits to get a glimpse of our hell so he can better support you. Him not understanding can be very damaging in the long run to your relationship so you need him to understand that this will help both of you in the long run. Matt |
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Title: Re: How do I help him Understand? Post by Margi on Oct 3rd, 2006, 2:30pm Respectfully, I have to disagree with some points raised in this thread. I would in no way ever attempt to belittle a cluster headache sufferer's pain. However, please don't think for a second that spousal or parental supporters don't feel pain all our own and have citizenship papers to our own private hell. This has got to be the SINGLE most helpless job in the world. I was present when my daughter gave birth to my granddaughter and, honestly, that came close to feeling helpless but....nothing like what I go through when I see Mike withering away during a cluster cycle. It's like he's standing on the tracks with a freight train bearing down on him. 5 or 6 times a day. I am powerless to stop it or to help him. So when I see folks say that you should hammer, eye poke, or inflict any kind of physical or emotional pain on a supporter - even though I know that posts that said this in this thread are kidding - I have a very real problem with that. It's honestly very rare to find a cluster supporter who DOESN'T get it. We don't have much choice BUT to get it, because it's the life WE lead too. We have front row tickets to a show we have no choice but to attend. Please don't group us in with outsiders who don't have a clue, ok? You'd be totally amazed at what a supporter SEES from this side of the fence. The biggest gift you can give a new supporter is education and the comarderie of other supporters who've walked in their shoes. But please don't even joke about inflicting pain or ridicule their misunderstanding of what you go through. It's just not all that funny. I know - I'm taking this WAY too seriously and that most of the comments were intended to be funny. This is just a pet peeve subject for me and I cringe to think of new sufferers finding this thread and thinking this is the way supporters are supposed to be treated. Maybe I've just campaigned too long here to give supporters a voice to ever be able to see the humour in this kind of thing. Please. Print out the links for your husband, Ash, and give him time to understand what you're going through. |
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Title: Re: How do I help him Understand? Post by Mattrf on Oct 3rd, 2006, 2:44pm Margi I think you are right that it was meant in jest and god knows that our supporters are in a hell of there own and the words where merely a way of describing the actual pain everyone feels at times. Mike is a very lucky man to have such an understanding and educated supporter and the rest of us should be so lucky. I wish my wife would come here and get support for herself along with giving others support but she wont, I think she thinks she knows more then she wants to about this from the visit she did make and that was enough for her. Tell Mike he is a very lucky man for me will you? Matt |
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Title: Re: How do I help him Understand? Post by DonnaHar on Oct 3rd, 2006, 3:18pm If ever there was a leader of supporters, Margi, it is without a doubt YOU! You have done so much for both sufferers and supporters with your care, concern and good judgement that without you, we would still be back in the 60's and 70's with sufferers not understood by anyone. Those were very hard years, not that now is a whole lot better, but at least here sufferers have supporters that are educated because of your effort. I am a supporter for my son. I can tell when the beast is just about ready to knock on the door.....I see it in his eye before he even knows what's about to hit him. My heart just breaks knowing what he will suffer....in a world by himself that no one else can share...I wait just outside of his vision, wishing I could do something to take even a little of that horrible pain away....waiting for the tell-tale signs that it is coasting downhill and done for the time being. The other supporters on this site know exactly what I am talking about because we have shared our observations and have exchanged our different methods of coping. This site has more information from more sufferers and supporters than you will ever find in one place. Do whatever you can to get your supporter to at least look around this site. Maybe your supporter feels guilty about not being able to help you. Again, the Supporter section of this site will become invaluable to you both. Many feelings have been put up front and many have learned much from each other here. I sincerely hope that you are not doing what I did when I was a young wife suffering clusters.......doing my utmost to hide it from my husband. He didn't understand...and he wouldn't tolerate "weakness"...so I'd sneak out of bed in the middle of the night and hide and he really had no idea of how bad it was. I'd hide in the bathroom or I'd go outside when I felt one coming on. But you know what? It was my own fault. I was such a sissy when it came to hearing him yell at me. If I'd have stuck up for myself, things would have been different. Just don't get caught in that trap. Let him know how bad it is. Edited to correct some really stupid spelling mistakes. Actually, fingers just jumped beyond their boundaries. |
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Title: Re: How do I help him Understand? Post by Ghost on Oct 3rd, 2006, 3:24pm I agree with those CHenz! Let him know and try to understand him too! My wife is the same and It is difficult but if you care enough you will have understanding too! When he is there for you after getting thrashed by the beast give him a hug, and when he isnt do the same because I hate to say it he is there by staying out of the way sometimes. Face it we aint nice when in battle! Mike |
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Title: Re: How do I help him Understand? Post by Trond on Oct 3rd, 2006, 3:25pm Margi I see youre point, and my comment was of course not ment to be offensive to anyone. It is very good to be reminded of all you supporters out there. Trond ps: I will ask my wife to blow MY head with an hammer...who knows, it could be helpful for the HA as well ;;D ;;D ;;D |
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Title: Re: How do I help him Understand? Post by Margi on Oct 3rd, 2006, 3:27pm (I honestly wasn't fishing for compliments here, Donna and Matt - SO not at all.... but thank you both. :-*) Donna makes an excellent point here, Ash. Mike hid this from me for the first little while, too, while we were still just dating and I think that's a pretty common instinct. Mike used to think he was going crazy and he didn't want to show that side of himself to me. But...being the bull in a china shop that I am, I kept digging at him until he finally let me see him in an attack. THAT was all the proof I needed, let me tell you. I am a migrainer. What I go through is NOTHING like his headaches - I knew right there and then that we were dealing with a very different beast. I honestly thought he was having an aneurysm and tried to call 911 for him. It scared the poop outta me! :o I don't know your story at all, but if you're like most clusterheads the visual of an attack is very powerful to a supporter. Listen to what Donna says here, ok? |
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Title: Re: How do I help him Understand? Post by clusternewbe on Oct 3rd, 2006, 3:33pm First I think ya'll should know that I had my cluster 2 months after Justin and I were married in 2005. I know he was scared and confused. We thought I was bleeding in my brain or that I had a tumor or something until all the tests came back negative. I know it was hard for him to witness his brand new wife beating her head and pacing like a mad women trying to find relieve somehow. Margi - Please dont be upset with people trying to make me laugh. I would never hurt Justin. I would never wish the pain i had on someone else especially him. I'm glad your husband has you. You seem very caring and a great supporter for him. Thanks by the way for the info. LIke I stated before I printed some stuff of the web sites i was given and I am going to go through them with Justin tonight. I want to do this together with him. We both need to learn more. Matt - thank you for your comments! I asked Justin if he would search the this site with me and he agreed, so I guess this is the first step. Thanks guys for everything! And no hard feelings okay! :) I hope you all have PF days ahead of you. ASh |
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Title: Re: How do I help him Understand? Post by clusternewbe on Oct 3rd, 2006, 3:42pm Ps. I've only had one attack so far, and we had no idea what was happening so Justin has seen me with an attack, and I am not afraid to tell him about my pain. i am grateful that he is the first one to pick up my purse and rush me out the door if we are out and about and get me home to bed. I am truly lucky to have him... I just wish he would just understand the severity of the "headache" . Question - could it be that it has been so long since my last major cluster that he has forgot how much it affected me? I'm really serious about that question. Thanks. ASh :) |
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Title: Re: How do I help him Understand? Post by Tiannia on Oct 3rd, 2006, 3:53pm Margi, I think that we all know that supporters get it. Ash - I totally understand. It still is hard for my husband when he sees me get hit. There have been times that I know that I have hurt him because he tries to help and I push him away and scream at him, because of the pain. He wants to protect me. That is his job, as he sees it. And he can not do anything to make it stop. So he got angry and told me that I was over reacting. That a headache could not be THAT bad. It hurts him that I hurt. There are times that I will let him "help" even thogh it does not help just so that he feels like he is doing something. Funny when you are in that much pain that I still dont want to cause my family more pain. My husband still will not come to this site. It has been 3 and a half years since I got my first cluster. But I do my best to tell him what i learn here. And he is starting to listen. If he will come here great. If he wiill just look at a post over your shoulder. At lrast it is a start. Try to explain it in terms that he can understand. If he has ever broke a bone. Tell him to picture that pain lasting for 2 hours strait without any ebbing of the pain and no meds. Then tell him ok now that you have had one. They will come speratically over the next 6 weeks, or how ever long your cycle is or if you are chronic, sometimes with warning sometimes without. And all you can do it try and life in between the hits. And come here and vent. It helps. PF Wishes to you, Ash Tia |
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Title: Re: How do I help him Understand? Post by Tiannia on Oct 3rd, 2006, 3:55pm on 10/03/06 at 15:42:18, clusternewbe wrote:
Yes. Because he was hoping somewhere in his mind and heart that they would not come back. |
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Title: Re: How do I help him Understand? Post by Margi on Oct 3rd, 2006, 3:56pm Good deal, Ash. I'm all for making folks laugh, trust me - hell, I make an ass of myself here on a regular basis, entirely for that purpose! :) I just don't want folks like your Justin to think that the general concensus is that we treat new supporters with contempt here. Tell Justin to check us out over at the Supporters section too, ok? |
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Title: Re: How do I help him Understand? Post by TxBasslady on Oct 3rd, 2006, 3:58pm Ash, I copied and pasted this from the "Supporter's Corner here on the board. This is CH from the supporter side.... IMHO....supporter's and sufferer's all...should read this, every single day. Another kind of pain.... « on: Sep 17th, 2003, 2:02pm » -------------------------------------------------------------------------------- I'd like to start by telling you all what this post IS NOT. This is not a post or story that is meant to be self-serving. It's not a post about who suffers more or who's pain is the more hurtful. It's not a "complain" post or a "whine" post. It's a post about what if feels like to be me.....the wife of a chronic clusterhead who I love with all my heart. It's a post about what it feels like to be me when I read so many of the sufferers posts because I have seen with my own eyes the pain they are talking about. Clusters hurt supporters hearts....... I've watched Blake reeling in pain for endless hours. I've heard him beg God to kill him. When God doesn't he's begged me. That's heart pain. I've seen Blake (some mornings) looking like he just walked out of a concentration camp.....eyes sunken in, no color, no facial expression. I ask him if he'd like a cup of coffee and say 'you better hurry up, honey, or you'll be late for work'. What I'm thinking is how can this man make it another day...how can he go to work. But...I know I have to make him try. I know I can't let him give up. That's heart pain. At different times I've asked the doctors to change Blake's drugs. I've done this more than once and it's usually when he's in "high cycle". My theory is we have to keep trying...we have to keep looking. One time when we changed drugs it made it much worse. Right in the middle of a Kip10 he's begging me to please never try another drug...please never ask him to do this again. That's heart pain. I've intentionally made Blake mad when I feel he's about to give up. I've pissed him off just to get his blood flowing and get the heart rate up. It works but it just about does me in when all I really want to do is hold him and cry. That's heart pain. Clusters hurt supporters egos...... I'm a bit of a contol freak. I like to take charge and fix things up. I like to make things better for friends, family and loved ones. But you know what.....there's not a damn thing I can do to stop the pain when the demon hits. I can't threaten him, scare him away, bust his balls or buy him off. I have to accept that I can't make it all OK for Blake until the demon lets me. I have to stand by in a helpless state. That's ego pain. There's one more pain and it's called guilt.......Blake and I are husband and wife. We are soul mates. We are best friends. We are supposed to share everything....the good things and the bad....the tears and the laughter....the pain and the "feel good" times. I have begged God to put the demon on me....to give Blake a break....to leave him alone for just one week. But.....it never happens. Blake has to endure all the hits and that's not right. That's guilt pain. Well.....that's about it I've run my mouth again as usual. Love to you all....suffers and supports alike Jackie LOL...one more thing. My theory is never let 'em see ya cry, never let 'em see ya sweat, never let them see any doubt on your face.....hang tough and they'll hang tough with ya......fight the demon with them and they won't give up......tell them that tomorrow will be better and they'll try it another day. This is the kind of support that comes from love... I am thankful...every day for the supporter's :-* Jean |
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Title: Re: How do I help him Understand? Post by Margi on Oct 3rd, 2006, 4:06pm Jackie is my all time hero - top of the heap of supporters here, in my opinion. I love that post. :) Ash, I was just reading your introductory post....your first "cycle" was two weeks long, right? You said that it seemed like one long continual pain and that it started above your eye but ended up in your neck? Did you honestly not have ANY pain free time in that two weeks? I'm just a little concerned about your diagnosis. Cluster attacks are very defined and ramp up on the pain scale quite quickly but do go to zero pain after an average of an hour. Some folks have shadows that remain but they can function through them - attacks, not at all. Is that not what happened for you in that first cycle? I know you're young and that, if this is cluster, they can be quite irregular at first. But cluster attacks don't last for two full weeks though. It just worries me that maybe your doctor hasn't dug deep enough for you yet. Have you had any attacks again yet, or are you just feeling that it's coming on again? Sorry, not trying to change the subject here and certainly not trying to be confrontational at all...just trying to understand. |
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Title: Re: How do I help him Understand? Post by nani on Oct 3rd, 2006, 4:42pm on 10/03/06 at 09:07:32, clusternewbe wrote:
All the other stuff aside... my husband had a hard time believing that 1) I would want to talk to people about CH, especially online and 2) that the people here are "real" and actually suffer. He probably distrusted and maybe even resented my time here at first. {He's glad I have y'all now, LOL, especially after meeting some of you.} That may have been the impetus for his remark. You know how the mens are... they want to be the ones to "fix it" for you. Men, you can't live with 'em, you can't drag 'em behind your truck... *sigh* |
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Title: Re: How do I help him Understand? Post by maffumatt on Oct 3rd, 2006, 4:47pm My wife doesn't understand how I can have the connection with the people here like I do. She wont attend any more of the meets and greets because she " doesn't have anything in common with those people." She tries, but I know deep down she doesn't get it. No one that doesn't have CH gets it. Then again, I would rather be in my shoes than hers. Matt |
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Title: Re: How do I help him Understand? Post by TxBasslady on Oct 3rd, 2006, 4:48pm on 10/03/06 at 16:42:36, nani wrote:
[smiley=JAW_DROP.gif] oops, I'll be right back [smiley=ohjez.gif] Jean |
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Title: Re: How do I help him Understand? Post by nani on Oct 3rd, 2006, 4:49pm ROTFLMAO, Jean! [smiley=laugh.gif] Go unchain that poor man.... ;;D |
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Title: Re: How do I help him Understand? Post by LadyElaine1 on Oct 3rd, 2006, 4:56pm Margi that is a great post ! I don't think anyone who loves us really gets upset with us, they get upset with the fact they can't stop our pain! I always had a problem making my husband understand. He was always beside me, and there for me, he fought ER doctors, stayed up with me at nights. Took care of the kids. One of the nicest things he ever said to me was on a Christmas morning. He said he wish he could take away my pain. Some times when I was in pain, you could here him blow his breath like he was frustrated. That would make me mad, I felt like he was mad at me. I began to hide and hide for years. I found out that he was upset but not with me , with Doctors, the fact he felt helpless. When I first came to ch.com lots of people heped me. There was a man here named Drummer who was my CH Angel, he wuld call himself a idiot LOL. Any way he wrote a email to my family. Below is the email, it helped my family understand. Remember he loved the F word, and its all through the letter. So adult reading only! This letter did help them understand better. Dear Elaine, Buddy, Heather and Family, You guys have picked an outstanding Neurologist. He sounds like he cares and that he knows what he is doing. Wonderful. Elaine; talking to you today was also wonderful. I am so happy that you and your family and your doctor know that you are normal. Buddy, Heather and family you are very compassionate, loving, caring and understanding people. Elaine now has various tools to help her fight the Demon in her head. Elaine does not have headaches. Elaine has a Demon in her head that tortures her relentlessly. The pain is very difficult to describe. Elaine's head does not throb like a normal headache. The pain that Elaine feels goes through, not only her head, but through her nose, lower jaw and eye. Pretend that 5 people come at Elaine with rusty barbed wire, needles, ice picks, hot pokers and tweezers. Pretend that you can't see these 5 people. Pretend that you can not touch these 5 people. Pretend that these 5 people take their tools of destruction and they stab and poke and pull and scrape at Elaine's gums, eye, nose and head. Pretend that Elaine can not do anything about these 5 people. All Elaine knows is that when it starts it won't end for an hour or two. Pretend that when these 5 evil people are done torturing Elaine that they simply leave and whisper to Elaine that they will be back. Pretend that this is real. Elaine knows this is real. I know that this is real. Buddy, Heather and Family; I hope you never know how real this pain is. Only Elaine and I know this torture. Elaine and I have done nothing to deserve this torture. Elaine now has hope for less pain thanks to Buddy, Heather, Family and her doctor. This hope will not take the pain away immediately. The Calan SR may take a week to lessen the attacks. The Oxygen and Imitrex will only shorten the attack if it is administered immediately. I mentioned that Elaine does not deserve this torture. All of you know that is true. Elaine was not crazy when she hurt herself. Elaine was mad at the fact that she is being tortured. OK. If there are any kids in the room please ask them to leave. I'm about to change. I'm going to change from a normal guy into a guy who is about to be tortured. From compassionate to inconsiderate. From happy and nice and funny to mean, rotten and evil. Ready???? "Laurie get me my FUCKING Ercaf NOW!!!!!!.......Where the FUCK is my oxygen?????......Get the kids and get the FUCK away from me NOW!!!!!!!!!!"...............Now I am alone and rocking and moaning and begging for God to kill me. I have even gone so far as saying...."GOD!!!!!! WHY THE FUCK ARE YOU DOING THIS TO ME!!!!!!!!!!!!!!.......Hang on folks it's only been 5 minutes. I still have 55 more minutes to go............"LAURIE!!!!!, LAURIE!!!!!!!, GET A FUCKING GUN AND SHOOT ME!!!!!!!!!!!..........Laurie stays in her room with the kids. She probably knows that if she comes down stairs that her husband is a bit less than loving. I am embarrassed, frustrated and in soooooo much pain. Only Elaine knows how much pain I am in. Elaine knows that I must be left alone. Elaine knows the rage that I feel. Elaine knows the depression that will follow this attack..........OK all done with my cluster attack. |
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Title: Re: How do I help him Understand? Post by Bob P on Oct 3rd, 2006, 5:42pm on 10/03/06 at 10:36:57, Trond wrote:
I think it's cool that Wikipedia uses JD's artwork. |
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Title: Re: How do I help him Understand? Post by Jonny on Oct 3rd, 2006, 5:49pm on 10/03/06 at 17:42:26, Bob P wrote:
I was contacted about getting ahold of JD for permission to use it, after weeks of not being able to get ahold of him I just told them to use it....and that its what he would have wanted. Dont know if its legal and dont really care as long as his name was attached to the pic. |
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Title: Re: How do I help him Understand? Post by clusternewbe on Oct 3rd, 2006, 9:07pm Margi- Yes the pain did feel like I got no relief. That is because I had harbored a feeling or I guess a shadow, then It hit me, or as I said, all at once. I'm sorry I don't know all the terms ya'll use here. Justin took me to the hospital thus the Mri and everything. I was hooked up to a morphine drip in order for them to do a lumbar puncture so i was out for almost 2 days after that. Maybe that is why I say it felt like it lasted 2 weeks. I know when I woke up I still had the pain in my head over my eye. Oh sorry before i went to the hospital I went to my primary and he tried to perscribe Imitrex , which I am allergic to, then I went to a neuro after the hospital because they could not find a reason for my pain. Okay so that was pretty much my two weeks. toward the end i had a few moments pf but Margi you have to remeber I am new at this and I don't know what these things feel like or when they stop hurting becasue it all hurts to be honest. No i do not think the doctor dug deep enough and that is why I am currently searching for a new nero. Margi, I have this feeling that somehow I might have offended you and If I did I'm sorry. I am just doing what everyone told me to do. Ask questions and listen to answers and although I understand your points, which are all vaild and valued I am just seeking answers. Currently I am feeling very cloudy I guess thats called shadows but i'm not sure anymore. You have many more years dealing with this monster than me and I will look forward to hearing your advice wether your a supporter or suffer. Be patient with me please! PF wishes to Mike. Ash |
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Title: Re: How do I help him Understand? Post by kayarr on Oct 3rd, 2006, 10:29pm Supporter here:) Understand too, that a man by nature wants very badly to "fix it". This is something he can't do anything about and it reminds him of his vulnerabilities and that he is not all powerful. Don't misunderstand me; I love the differences between men and women. A man is the other half of me:) Remember that he loves you and it may take him a little while to get over the fact that all he can do is be there and help as much as possible. Education will be the key. We have a little different thing at our house in that I am the one on the forum and my clusterhead is hearing and learning from me. *shhhhhhhh* He started taking melatonin about two weeks ago....thanks guys! Love to you both, Kimberly |
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Title: Re: How do I help him Understand? Post by ShariRae on Oct 3rd, 2006, 10:45pm Ash, I have to agree with Margi and wonder if indeed your doc has dug deep enough..aside from what Margi mentioned, you stated "he is the first one to pick up my purse and rush me out the door if we are out and about and get me home to bed." For most CH sufferers..bed is the last place we want..are able to go when getting hit.Almost constant motion is usually the norm for most of us...I am not saying that you don't have them..please don't think that..I just want a correct diagnosis for you so that you can find relief. Much Love Shari |
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Title: Re: How do I help him Understand? Post by Jimi on Oct 3rd, 2006, 11:35pm Quote:
Sounds like clusters to me. Keep reading all you can. And I hope Justin reads it all as well. We are here for you both. |
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Title: Re: How do I help him Understand? Post by Charlie on Oct 4th, 2006, 2:03am How about listing for him and friends all the things you'd rather deal with than the horror of clusters? We've all pretty much said that we'd be happy to have more than one of a long list of maladies rather than incur the indescribable level of pain.....it's beyond pain.... than produced by clusters. Charlie |
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Title: Re: How do I help him Understand? Post by BB on Oct 4th, 2006, 2:09am Margi, With all due respect, I didnt make a joke with intention to belittle anyones feeling . I spoke from a supporters point of view too. I was simply trying to bring a smile onto someones face, and I made it very clear that it was meant only as a joke. Reading some of the posts I cant help but sense a feeling of sadness or panic or sometimes just fear, thats when I tend to throw in a little bit of humour to lighten things up. As a supporter, many times I have come here with tears in the eyes and pain in my heart while my DH is in another room banging his head on the wall, I would then sit here and read as many posts as I could. Occasionally I would come across something innocently funny, and I would smile then I would start to feel a little bit better. Then I could muster enough strength and could harbour a real smile to come back to my DH and give him a hug once the fight was over. I know you hold certain ideals very dear to your heart and I fully respect it. But please dont jump on the posts that are innocently funny or on someone joking purely to try to bring a smile to a sufferer as it may just be as belittling. Imagine if each and every one of the posts in here are dead serious, this wouldnt be as welcoming or as enlightening. JMHO. Annette PS: Ash and Justin , I hope you didnt find my sense of humour offensive. If you do, I sincerely apologise. |
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Title: Re: How do I help him Understand? Post by georgej on Oct 4th, 2006, 3:29am EJ has seen me get hit--more than once. In our thirty years together, she's seen them evolve from my twice-yearly cycles to the present pattern of once every three years. She's seen me come to grips with them, learn to resist them, learn to control my reactions, seen me go from helpless floundering, headbanging, and screaming, to my now-nearly-silent struggles with an invisible monster. It's still a horror show, but one that she's learned not to attend. She's learned that I need to be alone with them in order to fight them to a draw. I know that there are terrible nights when I'm deep in cycle when she lies awake all night, wishing there were something she could do--some way to grant me a little peace, a bit of rest, but she knows that there's nothing she can do. It's my battle, alone. There are nights, still, when the thing ramps up to unbearable levels, when I'm covered in chill sweat, and my eye pours tears like a fountain, when I go to her--I cannot help it--and tell her that I wish to die. She usually says nothing, but touches my head to show that she understands, and to remind me that it will end, and that I have much, much to live for. ....And so do I have a supporter? Oh yes. Even if she never reads the board. Recently, as some of you know, my daughter has developed an interest in my "condition", and has explored this board. I welcome her interest, and I'm touched by her empathic reactions to my own private battles, and the battles of others. I still do not ever want her to see me take an attack. I have gone to great lengths to ensure that she does not see them, and I will continue to do so. I believe that she understands my reasoning behind this, and respects it. So is she a supporter as well? One of the best, I think--although she's saddled with an immense curiousity and a powerful desire to see and comprehend things, she will let me be, because being alone is what I need, even if it's not what she needs. And that is remarkably empathetic, I think. I am very fortunate to have two supporters. The best of all possible kinds for me. Best wishes, George |
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Title: Re: How do I help him Understand? Post by TxBasslady on Oct 4th, 2006, 4:24am George, Beautiful post :-* I'm speechless... :'( Much love to you and your wonderful supporters.. J |
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Title: Re: How do I help him Understand? Post by DonnaHar on Oct 4th, 2006, 9:05am What Jean just said. :'( |
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Title: Re: How do I help him Understand? Post by Margi on Oct 4th, 2006, 11:21am oh Ash - no you haven't offended me at all, sweetie - I'm honestly trying to help you. We see a lot of misdiagnosed people here and when we read of symptoms that are "outside the box" it does set off flags that maybe someone could possibly have been misdiagnosed. With misdiagnose comes the prescription of some very serious drugs that could end up being lethal if taken by someone who doesn't need them. It's our job here to provide support to all, and point them in the right direction for relief for their pain. That's all I was trying to do for you. :) I apologize to YOU - it's so hard only communicating over a keyboard, you can't hear tone at all.... :( You've said nothing wrong, Ash - I know you're new at this and it could very well be early stage cluster. I SO hope it's not though. You hang in there, girl - we're all pulling for you ok? Again, my apologies that I have upset YOU. Annette - please understand where I'm coming from ok? Back in the early days here (1998), supporters were grouped in with the general public's misunderstanding and disrepect of cluster pain. A few of us got together and lobbied here to get that perception changed. When I see it backsliding (even if it is in jest and trust me: I did "get" that, I just don't find it funny) - I will always jerk the chain here and not apologize for it. It's a sacred subject for me and one that I'm passionate about. I used to chair the Family Services Team for OUCH and we counselled hundreds of supporters who were emotionally abused behind the scenes by their sufferers, Annette. It does happen, ok? To me, there is no humour in this subject and it will always be a hot button issue for me. Now...if we're talking about the generally misinformed public, cluster wannabes, doctors who misdiagnose....or those that say 'oh it's just a headache, just take an aspirin and lie down'......hell, I'll be the first one in line to smack THOSE people over the head with a frying pan, ok? :) AND, I'm all for the theory of laughter being the best medicine. I practice it all the time, I promise. Please don't counsel me on what posts not to jump on or infer that I don't have a sense of humour, ok? Again, tone is lost when communication is only via keyboard, so please don't interpret that last sentence as confrontational because it's not meant that way. I do know the rules around here. Elaine - damnit...even after all these years, that letter from Dave still makes me cry. THAT letter should be given to every single person who's never understood cluster. That one's a real keeper. Thanks so much for posting it!! :-* George - WOW. Thank you SO much for that post. My hat's off to your ladies. Tell them that we all think they are doing a wonderful job as supporters. And thank YOU for the respect you show them. Now THAT's what I'm talkin 'bout! :) Posts like that are what keep me coming back here year after year - you RAWK, George! :-* |
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Title: Re: How do I help him Understand? Post by lskilly on Oct 4th, 2006, 8:31pm Some times I feel more sorry for my wife of 45 years ! She can only watch and pray as I get hit. I know whats going on and what I have to do to fight it. Although she wants to help she has to sit helplessly by and only watch. I try to sneak out of bed and not wake her but there is always that soft voice asking can she help. She is my life and my love Lskilly |
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