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Title: &^%$$^)&^&%#@!!!! Post by JenniferD on Sep 19th, 2007, 9:09pm I can't break thru the bullsh*t. He won't LISTEN. 22 years I've been dealing with ch, he's been dealing with it for 10, but do I know how to listen to my own body??? NO. Freakin horner's. The second that eye droops or I touch my face and I'm supposed to TAKE SOMETHING NOW. And if I don't, well then its, "You always wait until the last second and then its too late..blah blah blah fuckin BLAH".!!!!!! I don't know how to explain a k2 vs. a k7+. Hell, he's never even seen me at an 8+ much less a 10! I've shown him the scale, and he still says, "if it's as bad as you say, if it was ME, I'd be taking something the moment I felt something" and I'm supposed to feel guilty about knowing WHEN to take something. FUCK THIS. This might be the deal breaker. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by AussieBrian on Sep 19th, 2007, 9:18pm "&^%$$^)&^&%#@!!!!" No need to edit for spelling, either. We know exactly what you mean. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Brewcrew on Sep 19th, 2007, 9:19pm Not sure what to say, Jen. You two have a long history together - I don't know that I'd necessarily be ready to throw that away because he doesn't understand the pain you go through. A person can learn this stuff. I think it would be more about whether or not he wants to learn it. You'll be in our thoughts and prayers. Only you know the answers here. Bill |
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Title: Re: &^%$$^)&^&%#@!!!! Post by purpleydog on Sep 19th, 2007, 9:34pm It was the deal breaker for me. I came home from DavCon one year, explained the syringes I bought OTC in Iowa (for the trex), need a script in Illinois. Got told I was a drug addict. Got asked if "all" we did was sit around and talk about our "headaches". Had the pic thread up from that year on my computer. Was halfway though it, showing him who was who, and naming names, and he turned and walked away right in the middle of a sentence. He always told me it was my fault I had CH, it was my problem, and if I had to go to the ER, it was an inconvenience to him, he was missing his tv show. He didn't listen either. Not saying this was the only thing, but the final straw. You know your body, do what YOU think is right. And don't feel guilty. And it may do him good to see you in a kip 8,9 or 10. Just so he gets the idea. Sometimes that is necessary to make someone understand, especially when they are close to you. Bill is right, he has to want to learn, but maybe it's necessary to give him an up close and personal, so he can really "get it". Good Luck, you will be in my thoughts. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by phil_h on Sep 19th, 2007, 9:53pm I do think it's harder for a male to be a CH supporter , let alone a really compassionate one . Males look to fix the problem and left unfixed .... they become more frustrated and angry they can't fix it or you won't do it his way....... I think we are exposed to so many unbelieveable supporters on this board , that we want to project them into our mates............ I do wish my wife understood my deal with the beast and all the rx. timings and why I'm not doing something more ,right now..... It's hard to share with them the exact nature of this ongoing relationship with the beast. Words so often don't accurately depict our experiences........... My wife loves me and she really tries to understand , but when I've answered the same question for the 100th time: I begin to resent the apparent lack of listening or understanding........ I know it's just me....when my feelings pass , I try and focus on how difficult it is for her to love someone she feels powerless to help. When she knows she's powerless we are ok ; but when she feels helpless and angry... she tries to direct me towards a more tolerable outcome for her.......... Loving us is like constantly learning how to hug a cactus . Most times these feelings will pass, if I try and see the relationship from the others side of the net...... Anyway, I pray for peace and pfnad's for CH's and the one's that love us............ phil h |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 19th, 2007, 10:32pm Yup...men want to fix things...it's just how they're wired. But, in his defense, isn't it a good thing to do something at the first sign? Like...nip it in the bud? Maybe Im not clear on what you're trying to project... [smiley=huh.gif] |
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Title: Re: &^%$$^)&^&%#@!!!! Post by fubar on Sep 19th, 2007, 10:49pm Quote:
That one made me choke up... What a sense of guilt it is, really, to go through this in front of her. I find myself apologizing for it even after all this time. I know it's not a sensible way to feel, but I feel it even stronger today than the first time. I don't think it's about 'did you nip it in the bud early enough?', it's about *his* perception that you didn't, regardless of what happened. Tell him you're going to swing a claw hammer at his head, but you'll only know how hard you feel like swinging it at the very moment you are swinging. His only hope to prevent *some* of the pain is to pre-buy pain pills from you at, say, $1000 a pop and take them now. He'll have to live with his decision no matter what. Now tell him you're going to do this randomly (or regularly) a few (or many) times per day for the next 8 weeks. ready... GO! Maybe he'll start to get it then? Thank you, caller... I'm Dr. Fubar... thanks for tuning in. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by tanner on Sep 19th, 2007, 10:54pm Jen, no advice..... just Big Hugz and best vibes from us.... :-* :-* :-* Tim and Lin |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 19th, 2007, 10:59pm Fu, First of all, how you feel is not at all senseless...it is soo difficult to go thru this and not feel "guilty" with another that doesnt have this or is unable to understand. I feel that was what made me "choke up"...about this site. That others KNEW what I felt. I think you misunderstood me...in fact, I know you did. It has absolutely nothing to do with someone elses perception. It's, well, sort of common sense to me. And I am guilty of letting it go too far. Especially in the middle of the night...when I don't want to move and I deny Im on the way to a hit. It seems it just works out better if you do something right away...and that's not only with the pain of CH...that's all I was trying to say. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Rosybabe on Sep 19th, 2007, 11:07pm Jenni...we love you, we understand you because we feel like you feel...unfortunately our parters do not have CH, they can't be in our shoes and we can't make them change... My husband sleeps through my hits unless is a k10 then I am sorry but my screamings will wake him up... then He will come to wherever I am and ask If I need anything...He knows the answer..I always ask for a gun to end the torture..sometimes all I want is to be left alone because He can't help me... Every person is different, some are more compasionate than others... I think both of you need to talk calmly and put the cards on the table..for your sake and his. I don't know what you expect of him but whatever it is He needs to know. Men are not mind readers. Wishing you the best. Hugs Rosy. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 19th, 2007, 11:11pm :'( :'( :'( :'( :'( :'( :'( |
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Title: Re: &^%$$^)&^&%#@!!!! Post by BlueMeanie on Sep 19th, 2007, 11:12pm Sorry to hear your man doesn't "GET IT". Dealing with CH's for almost 30 years and I can tell you that "NO ONE" gets it who hasn't witnessed it. You can explain until your blue in the face and until they WITNESS a true full scale KIP 10 attack, they cannot fully understand. Let him see you with a bloodshot eye watering like a leaking faucet from a hose. Let him see you with snot running from the bottom of you chin breaking loose just before hitting the floor. Let him see you run around in circles jumping up and down like a 5 year old that's had to pee for the last hour. Let him hear you cry and yell for someone to put you out of your misery. Let him see you bang your fist into your skull until it's black and blue. Let him see you after a big hit looking like you just completed a bout with Mike Tyson. Oh do I hate to hear these threads about peeps living with someone who doesn't get it. Lucky for me my wife was there when I got my first one and has seen many others since. She was in more of a panic than I was. I am very luck because she truly understands. Hope you can get your man to understand too. Sending PF vibes your way Jen. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by barry_sword on Sep 19th, 2007, 11:18pm Jen, so sorry. :'( This sucks!!! Barry&Angie |
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Title: Re: &^%$$^)&^&%#@!!!! Post by cash5542 on Sep 19th, 2007, 11:28pm I kind of have a different perspective on this. I am a supporter but a parent, not a spouse. I'm not planning to leave anytime soon no matter how bad it gets. If he's never seen a hit show him one of the videos Chuck or Tony did. I saw that before I ever saw Lisa have a hit. It was a bit easier than seeing her and when I did see it, I was less shocked. On the other hand, my husbands first real experience was in the ER room having back to back Kip 10's. I don't think there can be anything much worse than a Daddy witnessing his daughter like this. As far as nipping it in the bud, maybe (don't yell if Im wrong) he can help. I'm just throwing this out but I see a hit before Lisa even knows its coming. It's a distant stare, sniffly nose and rubbing her eye. I don't ask her, I tell her to get the o2. She appreciates my heads up now but didn't in the beginning. My family has only been dealing with this for a year and you have so much more experience so I hope if I haven't offended you in anyway. Your's is different than ours but maybe this may help some??? Charlotte |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 19th, 2007, 11:34pm Blue...even some that see it don't get it and have no compassion. :'( My mother is a militant head nurse...had seen me exp. many kip 10's...even runnning on the front lawn screaming at 3am...horner's syndrome...ALL of the stuff you described, and very accurately....the snot, your eye running...I slobber in the mask, am drenched in sweat....and yet....she still doesnt get it...Thank God for this board. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by nani on Sep 19th, 2007, 11:38pm If I'm reading this right, Jen, you seem upset that he doesn't trust your judgement about when to medicate, right? I can see where you're coming from. No one knows your head better than you. But... and I do have a big butt, maybe he's even more scared of it than even you are? Maybe, being a man and needing to "fix" it, he's just trying to spare both of you from any potential pain? I dunno... I'm trying to be the devil's advocate...but it's a thought. BIG hugs regardless, nani |
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Title: Re: &^%$$^)&^&%#@!!!! Post by artonio7 on Sep 20th, 2007, 12:27am Jenn sweety... I love you. There is nothing more that I can say to you worth saying then has already been said here... Funny that he may complain about you not knowing when to take the appropriate action to avoid the nightmare of a cluster headache.... I guess I'm a little cynical... My response would be ... 'If I knew when to abort an impending nightmare... I would have left your ass a long time ago.' with warm regards, Tony |
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Title: Re: &^%$$^)&^&%#@!!!! Post by ski2k on Sep 20th, 2007, 12:33am Sorry you're going through this, Jen. I want through the same thing with my (ex)wife. She DID end up giving up completely on me and my "issues" after 8 years of marriage. It's so hard to explain to some people just how horrible these things are, and trying to get them to understand the difference between getting shadows and a full blown CH is even harder. Sometimes you just can't tell until it's got you rolling around on the floor. For a long time all I had to combat my CH was stadol nasal spray, and I didn't wanna use it 'til I was SURE I was going to be getting hit hard. I got the same thing from the now ex-wife.... "why don't you take something right away?". All I could come up with as an answer was "I'm trying to save the meds until it gets bad". That was never good enough. Was always interfering with "her" plans, cuz the beast was too unpredictable. She wanted to be there for me, or so she said, but when it got bad, she bailed. Just got to be too much for her. I understand it now, but felt sooo angry that the "one" person who was supposed to be there for me didn't understand or wanna help anymore. Hang in there, Jen. You're tough. You can make it. Best of luck to ya, Adam |
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Title: Re: &^%$$^)&^&%#@!!!! Post by tanner on Sep 20th, 2007, 12:41am on 09/19/07 at 23:38:35, nani wrote:
You had better if you are going to keep cushioning our falls and bouncing us back up when we need it. Pretty big boot too ;) No firm plan yet, but ......tim |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Charlie on Sep 20th, 2007, 1:00am He's an idiot. Sorry but it's true. Drugs, other than injected ones, have considerable time lags. Pain pills are no different. Try my technique again. Most of the time, there is a time lag with that but now and then is can kill the beast in only a minute or two. Not common but it happens. Hit him with stuff now and then. Charlie |
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Title: Re: &^%$$^)&^&%#@!!!! Post by lashultz on Sep 20th, 2007, 2:47am I think most of us understand your frustration. I feel the same misunderstanding a lot. Someone trying to diagnose me and play Dr. I do know that she is only trying to help, but it doesn't. Hang in there Lee |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sandie99 on Sep 20th, 2007, 4:22am Jen... [smiley=hug.gif] I know how you feel, thanks to my mother and some of my friends. These days I talk with them about ch as little as possible, because I know that they don't get it. I have written down a simple description about ch and how I deal with it and I carry it around when I'm among people who might end up witnessing it. I admit that I have taken my treatment into my own hands and so I take the responsibility of each and every situation, including waiting before getting energy drink or caffeine tablet. Funny enough, THAT my mother gets, but not ch... ::) I'm lucky; I have a supporter, who is there for me. But that doesn't mean that he is spared from the pain, hurt and "fixing" it. So, I get ch pain, I get frustration and hurt from having the kind of people in my life who do not want to learn about this and then I have a compassionate man, who feels the pain when I feel it - and I get another pain for putting him through it. That's life with ch; it's not for the sissies. Just few things I wanted to share. I do hope that he WILL get it in the end. [smiley=hug.gif] Sanna |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Saffy on Sep 20th, 2007, 5:12am Hi Jen, I used to take MaXalt and it did work for me for a while if I took it at the right moment. Not supposed to take it daily blah blah so try not to etc etc. I actaully got MORE confused whether I needed to take it as time went on not less. Thing is there you are head pounding brain scrambling nicely, trying to work out precicely when to take the damn medication - PERFECT don't you think. And nobody can do it but you - even better. There is only one piece of advice and here it is. Any relaltionship, needs to be balanced i.e. each must be giving and recieving a similar amount. Not the same thing but at the end of the day it must way up about the same like a see saw. However a see saw goes up and down a bit now and then and given time as long as it has a strong central fulcrum will balance back out eventually, just a little time. ;) I hope your see saw comes back into balance. Saffy |
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Title: Re: &^%$$^)&^&%#@!!!! Post by JenniferD on Sep 20th, 2007, 6:09am The thing is: the seeds are working a freakin MIRACLE for me, I feel better than I have in years and I even tried to explain that. Stupid me. What do I know? I WASN'T EVEN IN ANY PAIN AT ALL when he got pissed off last night, and I haven't been except for a few low K hits in the last few weeks, easily taken care of immediately with o2. He comes home everyday complaining that (arm, leg, shoulder, back, etc) is sore. I should start nagging him right away to immediately get a cast on it! "I mean, if its as bad as you say and if it was ME, I'd be doing anything to stop the pain" And then get mad at him for not doing something about it. Please note the heavy sarcasm here >:( #1- he wants to fix me but can't. #2. he doesn't want to learn. Things should be done his way. #3. If he does see anything stronger than a droop, its my fault because I didn't take care of it sooner. He'll never "get it". Thank you all for understanding. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 20th, 2007, 7:01am My husband doesnt DARE say a thing when Im getting hit...even it happens during a bad argument...but let me explain...it's not because he's being super understanding, etc...he has a fear of making fun of people who are in positions he doesnt ever want to end up in. Still, there are times I have felt like you're feeling/felt...when he expects me to do things during hit, (yeah, I'll just whip up that spaghetti...I can't even see it...being that my eye is swollen shut... ::)) Or is insensitive...or talks as if he really knows what I experience...or this one...his pain is worse when it's like a twisted anke... ::) And yeah, how they "complain" about their aches and pains...oh brother...what I wouldn't give. I say, "if you can talk through it, it isn't 10+ pain"..let alone be hungry and watch tv through it :D!! Can you imagine??? :D :D :D Unfortunately, this is a struggle with a non CH partner for many of us. Weigh out the pros and cons...and it's a very, very VERY touchy subject for us....Good luck. I hope you're doing a little better today. I wouldn't run to file divorce papers though. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Saffy on Sep 20th, 2007, 7:02am It is ALL so TOTALLY unfair sweetie! It is very hard as a CH sufferer to hand out ANY sympathy for anything less than an amputation!!! Personally most of the time I have learnt to "act" a little bit which gets me through. "Oh you poor thing perhaps you should take a couple of paracetamol." Knowing it is an act makes ME feel superior, I am SUCH a cow! However when I'm feeling a bit s**t the acting goes out the window and I find that brutal honesty can creep out. Ooops. So sorry to hear you are suffering, hope things improve for you soon. Saffy :) Had to correct spelling |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Lotus on Sep 20th, 2007, 7:10am Jen, sorry to hear you are going through this. This doesnt help anyone at all. It sounds like he may have some stress himself and is taking it out on you. I dont think its simply because he "didnt get it". You said he had lived with it for 10 years. 10 years is a long time, its not like he hasnt seen the ups and downs of it and has not had a chance to learn. You said he complains daily that he has ache and pain all over the body, often that is a symptom of stress and maybe even subtle depression. I believe he needs to see someone for the way he is acting towards you. Its not fair for him to be taking his anxiety out on you this way. I am a supporter myself and although I can understand how fearful a supporter can feel seeing the sign of an imminent attack, I dont think its normal to go on accusing and blaming the way your partner did. Maybe you can sit down with him sometimes when both of you are in a better mood and you can ask him if he is going through some other stresses right now. One thing I do know is when you are strained yourself, the ability to be understanding and supportive is greatly reduced. As supporters, we need to take care of ourselves first before we can be of any good to anyone else. Hope the situation resolves more peacefully for you. Hugs Annette |
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Title: Re: &^%$$^)&^&%#@!!!! Post by barry_sword on Sep 20th, 2007, 7:16am I have the best supporter one could ask for. Angie has only once nattered at me when I was having a kip 9 and afterwards we talked about it and I told her how much worse she made things by doing that. I told her if she has a beef with me to wait until I am done dancing with the beast then she can lay it on me, but not during the hit. We are both still learning a lot about this condition so it will get better for both of us as time goes on. She is the first to say "get on the o2 now" when she see's me rubbing my neck or getting very quiet and sometimes I need to be reminded how important it is to get on the o2 right away. Sorry for the book Jen but I really hope you get things sorted out. We support any decision you make sis. Barry |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Kevin_M on Sep 20th, 2007, 7:57am on 09/19/07 at 21:09:49, JenniferD wrote:
Quote:
Managing this with a back seat driver, where's the volume knob on the radio that he can't reach when you need it. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Charlotte on Sep 20th, 2007, 8:20am Jen, only you know what the deal breaker is in this situation. I hope it works out. Charlotte |
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Title: Re: &^%$$^)&^&%#@!!!! Post by thomas on Sep 20th, 2007, 8:34am Some people just aren't wired right in order to be compassionate or supportive. Sorry you're going through this. Those of us with great supporters are blessed. Most folks aren't tough enough to do what they do. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 20th, 2007, 8:49am Being a supporter...seeing this BS...must be terrifying, upsetting as hell...and make one feel sooo helpless. Im a CH...had never seen what it LOOKS like, only felt it..and when I saw Chucks video...I wept. Chuck is not even my husband (well...I don' t think that's his cup of tea... :D) Anways, it has to be horrible to watch...I know when my husband hurts I want to "make it all better". CH. CH????? Ongoing. Ever changing. I do "feel" what my husband has to feel. Maybe the husband in this case is just hurting, feeling helpless...and dealing with his own issues...as Lotus said, it's a good idea, when things calm down to have a heart to heart talk... I hope it turns out good no matter what. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by cathip on Sep 20th, 2007, 9:05am A Back seat driver......... Kevin nailed it! So, this man, who professes to care for you, is frustrated that you get hit..............and he tries to tell YOU how to fix it....coz it's messing with HIS life........ now, THAT is simply selfish... I'm with Dr Fu here, get a big ole hammer and tell him you'll be wailing on him intermittently and HE should decide when to pop something for pain. I have never felt the pain of CH, but I can see it in a face and know how unbearable it is.......what a horror...and the natural reaction is to DO something, but sometimes, all I can do is wring my hands and hope to God it ends soon. Jenn, everyone has a different emotional makeup. Perhaps his does not meet your needs. I am sorry. I hope life evens out very soon for you. Cathi |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 20th, 2007, 9:17am Cat... That is comical about the hammer...because there is some truth to it. I have said statements of that nature over these years when someone was being insensitive... Like hiding in a dark house, with an ice pik...and they have to stay there for at least a month, and I jump out at all different times and jab them in the eye whenever the spirit moves me... |
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Title: Re: &^%$$^)&^&%#@!!!! Post by JenniferD on Sep 20th, 2007, 9:31am on 09/20/07 at 09:05:55, cathip wrote:
.......and I wasn't even getting hit; my eye was drooping. That's it. [smiley=mad.gif] that hammer may become more than an analogy! |
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Title: Re: &^%$$^)&^&%#@!!!! Post by DennisM1045 on Sep 20th, 2007, 9:53am Jen I’m so sorry you are having troubles like this. I have no sage advise, no magic solution. I only have a virtual hug for ya. I will say that I think a good supporter is a rare thing. I love my wife to no end and she loves me. However she is frustrated with this condition and struggles to understand. It is a work in progress.. There is a difference between someone who loves you but doesn’t handle CH very well and one who blames you for the condition. If you can’t fix it I will? Who’s he kidding? Himself most likely. I’m so sorry. Like Lotus said, maybe he’s just projecting other issues. Trying to assert control in one area to make up for a lack of control in another. You have enough on your plate just dealing with the beast. The answer is in your heart. We’ll be here either way. -Dennis- |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 20th, 2007, 9:55am ;;D...hear you loud and clear sister! |
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Title: Re: &^%$$^)&^&%#@!!!! Post by midwestbeth on Sep 20th, 2007, 10:22am Jen, Quote:
I'm so sorry you are going through this. My hubby only truely "got it" and understood when he went to the Dr. with me. He didn't understand that when you get ch, it's something you have, period, and there was no magic pill to make it go away. He has epilepsy, and I made the anology that ch has similarities to epilepsy, and it is not going away. The Dr. agreed with me and thats when the "lightbulb" went off and he finally understood. After talking to friends and family that he had talked to, I think he was really afraid for me and felt helpless........I also found that he thought I had a brain tumer and was keeping that from him :-/....... Has he ever went to the Dr. with you? Maybe if he got a good talking to by the Dr., he might "get it". Again, sorry you are going through this....it is so fucking frustrating!!! Beth |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 20th, 2007, 3:10pm I want to clarify though...my husband is a wonderful supporter. The times I spoke of are the very few times... He's always, always available to hug me and comfort me (when he's with me :-[) and truly is considerate. He tries the very best he can, not being a CH himself. But, I am very touchy re CH...I've had people laugh at me when I was lugging tanks, say insensitive, ignorant things...and that's just not somewhere to go with me...not re a condition that not only causes pain of such a paramount extreme...but that robbed me of my life. Time can't be reinacted. Events can't either. So this is no joke to me. I appreciate when my husband reminds me to take meds and use 02...it sounds ridiculous, but I actually get so frazzled I forget to take meds, etc...forget they're there. CH can cause alot of stress between two people...and if there are other issues...well, it's difficult. Maybe if you really talk to him, and he takes his guard down, and opens up to you...you may see him differently... :) I hope so. In reality, it's not something any of us can judge or determine...it's between you and him...we don't know what it's truly like between you two. So...really, the heck with everyone elses' opinion on YOUR marriage and relationship. ONLY YOU know what the truth is. Be happy. :) *I understand that supporters feel helpless...but, so do we... :-[ It's heartbreaking for all involved. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Kingjames1 on Sep 20th, 2007, 3:57pm on 09/20/07 at 15:10:31, sldrswyfe wrote:
::) Hang in there, Jen. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by southwalessunshine on Sep 20th, 2007, 4:43pm Maybe you should let him see you deep in the beast's grip? i too hid the worst from my partner for a while, but we haven't been together nearly as long as you two. My oartner was sat there quietly crying watching me and never watched again after that. I didn't even want him there that time and definatley don't want him there with me again during a KIP 10 ever again, but it helped us both that he did that time. Ho now knows that when i say I'm going upstairs for a while, to never question me and just let me get on with it. he knows exactly what i'm going through and pops his head around the door every half hour or so, never saying a word until i look like I'm coming out of it. I'm so sorry you're hurting right now, it can't be a good feeling when you're coping with the beast too. I hope you two get things sorted but ultimately only you know what you're able and willing to put up with. All our thoughts are with you. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 20th, 2007, 9:13pm that is except "kings" |
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Title: Re: &^%$$^)&^&%#@!!!! Post by assaultme on Sep 20th, 2007, 10:04pm People and their relationships are very complex. I cant tell anyone how to feel or what to do. But I can tell you that there is NO WAY I could have really understood CH and all the complex thoughts & emotions it can give the sufferer before I experienced it for myself. My son & I live alone and he helps me and understands as best he can. But even as close as we are, I don't think he really understands all the thoughts I have had running thru my head as it relates to CH. I do know one thing for sure, if you live with someone who is your spouse or son or whatever....... they MUST be supportive !!!! That is what family is all about. My Dad is dying of cancer. I may not fully understand, but Dad knows I would walk on razor blades to support him. It is just a given for a family to be this way. Hope that helps. Regards, Dave |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Ree on Sep 20th, 2007, 10:20pm on 09/19/07 at 21:09:49, JenniferD wrote:
You want the love and compasion of the supporters then take our advice once in a while. And if I felt pain like that yep... I would quit drinking for my cycle... yep I would take my preventative... and yep I would take the abortive so it would cut the pain before it got to a 10+.. and yep I would love my supporter and thank God every day that they stayed with me because it isn't easy living with CH from our side either. sorry Jen I dont agree with you on this one. Ree |
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Title: Re: &^%$$^)&^&%#@!!!! Post by sldrswyfe on Sep 20th, 2007, 11:55pm Ree... I definately love and thank God for my supporter everday....and make a point to tell HIM so too (he's quite proud of himself, I know he appreciates the acknowledgement)...all supporters have my deep compassion and respect... I agree with your post. It hit home when you said "my husband stands there and asks me what to do"...I do that too...and my husband always tells me...in a way that soothes my soul and snaps me to my feet, so to speak. The love I feel for him for being so tolerant cannot be put into words. What can you, as supporters feel? Do?...my God, what a terrible feeling. Thanks Ree for being there for a CH. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Saffy on Sep 21st, 2007, 4:31am Hi Jen, Hope today is better one and your spirits are on the up! Saffy :D |
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Title: Re: &^%$$^)&^&%#@!!!! Post by JenniferD on Sep 21st, 2007, 6:06am Hi Ree, I read and re-read your post and I did really consider all that you wrote. I do know it has been hard on him in the past when he had no understanding of this at all. Hell, even after 22 years, I still struggled with getting my responses/timing/meds "right". What you may have missed was my other post: I wasn't in any pain at all. My eye was drooping. That's it. I didn't go thru all I had to to get the o2 just to have it sit there and then complain that my head hurts. Every time you sneeze, do you take an antibiotic? no. That makes about as much sense as running to the tank or taking a med when 'm not in any pain. Support is a wonderful thing and yeah I know it must be hard for him. But treating me like I'm too stupid to know what I need is not what I call support. Love ya girl. Thanks for caring and sharing a different perspective. Hugs, Jen |
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Title: Re: &^%$$^)&^&%#@!!!! Post by LeLimey on Sep 21st, 2007, 11:36am I know exactly where Ree is coming from on this one and I agee with her. I fail to see how he can possibly understand it when you don't let him see what it is he has to understand? [smiley=huh.gif] I'm a sufferer and I've had my fair share of hits. The ONLY support I have is online as all I have at home with me are my kids and I do my damndest to hide it from them. Consequently they are quite callous about "mummy's headaches". They just know to leave me alone until I come back to them (I leave the room) As a matter of fact I think they quite like me having CH as they get to meet so many people they've really come to love! I know for a fact they wouldn't be so blase if they saw me rocking and moaning and trying to suck down that O2 with my nose and eye running, looking like Frankensteins bride. Jasper is the only one who comes near me when I;m getting hit and he just stands next to me telling me to breathe. I hate it that he knows and "gets it" I wish more than anything else in this world that he could just shrug it off. The point I want to make though is this. I KNOW what CH is. I know all about the condition and I sure as hell know all about the pain. I KNOW CH. When I see Jaspers eye droop I shit myself. I get tearful. I want to do something there and then even though I know he isn't in pain right then. I want to stop it THEN. I don't want to "wait and see" I want it stopped. Right then. That minute. I can't stress the urgency I feel to make it stop before it starts.. and I can't 'cos all he has is O2. I can't give him prevents or abortives but if I could - I know I would. I wouldn't risk a single moment of pain for him he didn't have to suffer and yet for me - its completely different. I KNOW myself. I KNOW when to medicate and when not to and like you I'd get mightily pissed off if someone told me to do something about it and the F word might be invoked more than once per sentence in my reply too ;;D All I'm trying to say is that whilst we KNOW for ourselves, we panic for others. Conventions are the same, we all want to help someone else before they really need it if you think back. I don't think the worst pain is CH. I think the worst pain is not being able to help someone you love when they are hurting and you know what? Your husband would probably really benefit from talking to others here who get hat he is thinking as well as what you go through. Even if he isn't a message board kind of a guy, and many aren't - Ree will tell you that for one!! I'd talk to him on the phone and so would many others, supporters who know what its like for him as well as you. We'll all help if we can, I'm sorry if this came over badly but I'm very over-emotional writing it all out. I try not to think about Jasper and CH as much as possible and it hurts like hell writing about it but this time - well, I thought it might help you lots of love Helen |
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Title: Re: &^%$$^)&^&%#@!!!! Post by assaultme on Sep 21st, 2007, 7:25pm on 09/20/07 at 01:00:17, Charlie wrote:
You're a character Charlie [smiley=laugh.gif] We men do ten to think we can fix anything with duct tape & bailing wire. He has to learn, like me, that some things cannot simply be "fixed" and you may only be able to control or live with it. Cheers, Dave |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Ree on Sep 21st, 2007, 8:37pm AS this horrendous saga continues my husband walks behind me moaning as my body vibrates and shakes along with him. His second hit for the day. God willing it will be his last so that he can go to work at 4 am without getting killed in the truck. He is pacing now and I know you all know the drill and yes, he is so lucky not to have to endure this pain chronically we do know that. I am so sorry you all have to endure this horrible horrible condition. Thank God we all have each other... Thanks DJ again for this website... GTG he needs me love you all Ree |
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Title: Re: &^%$$^)&^&%#@!!!! Post by JenniferD on Sep 21st, 2007, 9:22pm Glad he has you ree. |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Ray on Sep 21st, 2007, 9:57pm Dear Jen: I consider you family, there is nothing that gets me more upset that when someone in my family is in pain. Pain is not limited to just physical. I don't know your man, I don't offer him any advice. I offer you the love of a family member who can feel some of your pain. I have a back story, but telling it to you won't lessen your pain. I want your pain to go away. I pray that you and he can communicate about things. If not now, then through a third party, therapist, pastor, whatever. If you want to vent, honey, you go right on ahead. Feel free to PM me. If you want my number, I'll PM it to you, I'll listen. If you don't, don't. I'll pray for you and your man -- That's something I do. I have someone who will never leave me, nor forsake me. By the way, as I am married for the 2nd time, and I am totally and absolutely delighted with my marriage --Part of our agreement before getting married was that she is to kill me rather than divorce me -- Not ever going through that pain again. I have no advice for you, only love and support. I hope you feel it, it sounds like you need it. All of my best, Ray |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Ree on Sep 21st, 2007, 10:25pm thanks Jen... this sux! and I'm sure you guys know it too... HE finally went to bed spent, when the trex gave him relief his O2 is on hold because of some #$%^&* fax machine that didnt work or something... hopefully we can rectify that tomorrow..crossing my fingers too. and ps... we supporters HATE when you guys touch your head... its like OMG HERE IT COMES... LOVE YOU TOO LADY REE |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Sean_C on Sep 21st, 2007, 10:30pm Ree, Dave left his o2 at my house last time he was here, want me to bring it back? Sean........................................... 8) |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Ree on Sep 22nd, 2007, 9:06am Nah Sean Im sure he is on it... he has been working since 4 am and has a cell phone... Dave is worse than a girl on that cell Im sure he has a hook up today... but thanks for the offer Sean... love ya Ree |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Ree on Sep 22nd, 2007, 5:48pm on 09/21/07 at 20:37:25, Ree wrote:
Never was I referring to Jen and Daryl when I said " sorry peeps... Ree |
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Title: Re: &^%$$^)&^&%#@!!!! Post by JenniferD on Sep 22nd, 2007, 6:36pm There's no need for sorries, Ree. We're all struggling with the same beast...maybe different demons, but always the same beast. As I said before, glad he has you. peace, Jen |
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Title: Re: &^%$$^)&^&%#@!!!! Post by Redd on Sep 22nd, 2007, 7:23pm Jen, I've been trying to find some words of wisdom for you, but to be totally honest, I have none. I guess I've been going it alone, (besides my wonderful kids of course,) for so long now that I don't know what to say. I remember the crap my ex husband laid on me, but I wasn't properly Dx at the time, so who could blame either of us. My heart goes out to you my dear, but I have nothing to contribute, so just know I love you and I'm here. |
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