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Topic: &^%$$^)&^&%#@!!!! (Read 1145 times) |
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PollyPocket
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&^%$$^)&^&%#@!!!!
« on: Sep 19th, 2007, 9:09pm » |
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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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AussieBrian
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Re: &^%$$^)&^&%#@!!!!
« Reply #1 on: Sep 19th, 2007, 9:18pm » |
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"&^%$$^)&^&%#@!!!!"
No need to edit for spelling, either. We know exactly what you mean.
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Brew
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Re: &^%$$^)&^&%#@!!!!
« Reply #2 on: Sep 19th, 2007, 9:19pm » |
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Not sure what to say, Jen. You two have a long history together - I don't know that I'd necessarily be ready to throw that away because he doesn't understand the pain you go through. A person can learn this stuff. I think it would be more about whether or not he wants to learn it.
You'll be in our thoughts and prayers. Only you know the answers here.
Bill
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purpleydog
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Re: &^%$$^)&^&%#@!!!!
« Reply #3 on: Sep 19th, 2007, 9:34pm » |
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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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phil_h
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Re: &^%$$^)&^&%#@!!!!
« Reply #4 on: Sep 19th, 2007, 9:53pm » |
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I do think it's harder for a male to be a CH supporter , let alone a really compassionate one . Males look to fix the problem and left unfixed .... they become more frustrated and angry they can't fix it or you won't do it his way....... I think we are exposed to so many unbelieveable supporters on this board , that we want to project them into our mates............ I do wish my wife understood my deal with the beast and all the rx. timings and why I'm not doing something more ,right now..... It's hard to share with them the exact nature of this ongoing relationship with the beast. Words so often don't accurately depict our experiences........... My wife loves me and she really tries to understand , but when I've answered the same question for the 100th time: I begin to resent the apparent lack of listening or understanding........ I know it's just me....when my feelings pass , I try and focus on how difficult it is for her to love someone she feels powerless to help. When she knows she's powerless we are ok ; but when she feels helpless and angry... she tries to direct me towards a more tolerable outcome for her.......... Loving us is like constantly learning how to hug a cactus . Most times these feelings will pass, if I try and see the relationship from the others side of the net...... Anyway, I pray for peace and pfnad's for CH's and the one's that love us............ phil h
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sldrswyfe
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Re: &^%$$^)&^&%#@!!!!
« Reply #5 on: Sep 19th, 2007, 10:32pm » |
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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... 
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fubar
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Re: &^%$$^)&^&%#@!!!!
« Reply #6 on: Sep 19th, 2007, 10:49pm » |
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Quote:| I try and focus on how difficult it is for her to love someone she feels powerless to help |
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That one made me choke up... What a sense of guilt it is, really, to go through this in front of her. I find myself apologizing for it even after all this time. I know it's not a sensible way to feel, but I feel it even stronger today than the first time.
I don't think it's about 'did you nip it in the bud early enough?', it's about *his* perception that you didn't, regardless of what happened.
Tell him you're going to swing a claw hammer at his head, but you'll only know how hard you feel like swinging it at the very moment you are swinging. His only hope to prevent *some* of the pain is to pre-buy pain pills from you at, say, $1000 a pop and take them now. He'll have to live with his decision no matter what. Now tell him you're going to do this randomly (or regularly) a few (or many) times per day for the next 8 weeks. ready... GO!
Maybe he'll start to get it then?
Thank you, caller...
I'm Dr. Fubar... thanks for tuning in.
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Re: &^%$$^)&^&%#@!!!!
« Reply #7 on: Sep 19th, 2007, 10:54pm » |
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Jen, no advice.....
just Big Hugz and best vibes from us....
 Tim and Lin
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sldrswyfe
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Re: &^%$$^)&^&%#@!!!!
« Reply #8 on: Sep 19th, 2007, 10:59pm » |
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Fu,
First of all, how you feel is not at all senseless...it is soo difficult to go thru this and not feel "guilty" with another that doesnt have this or is unable to understand. I feel that was what made me "choke up"...about this site. That others KNEW what I felt.
I think you misunderstood me...in fact, I know you did. It has absolutely nothing to do with someone elses perception.
It's, well, sort of common sense to me. And I am guilty of letting it go too far. Especially in the middle of the night...when I don't want to move and I deny Im on the way to a hit. It seems it just works out better if you do something right away...and that's not only with the pain of CH...that's all I was trying to say.
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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Rosybabe
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Re: &^%$$^)&^&%#@!!!!
« Reply #9 on: Sep 19th, 2007, 11:07pm » |
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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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sldrswyfe
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Re: &^%$$^)&^&%#@!!!!
« Reply #10 on: Sep 19th, 2007, 11:11pm » |
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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BlueMeanie
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Re: &^%$$^)&^&%#@!!!!
« Reply #11 on: Sep 19th, 2007, 11:12pm » |
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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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barry_sword
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Re: &^%$$^)&^&%#@!!!!
« Reply #12 on: Sep 19th, 2007, 11:18pm » |
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Jen, so sorry. This sucks!!!
Barry&Angie
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cash5542
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Re: &^%$$^)&^&%#@!!!!
« Reply #13 on: Sep 19th, 2007, 11:28pm » |
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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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sldrswyfe
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Re: &^%$$^)&^&%#@!!!!
« Reply #14 on: Sep 19th, 2007, 11:34pm » |
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Blue...even some that see it don't get it and have no compassion.
My mother is a militant head nurse...had seen me exp. many kip 10's...even runnning on the front lawn screaming at 3am...horner's syndrome...ALL of the stuff you described, and very accurately....the snot, your eye running...I slobber in the mask, am drenched in sweat....and yet....she still doesnt get it...Thank God for this board.
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"Great spirits have always found violent
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"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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nani
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Re: &^%$$^)&^&%#@!!!!
« Reply #15 on: Sep 19th, 2007, 11:38pm » |
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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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artonio7
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Re: &^%$$^)&^&%#@!!!!
« Reply #16 on: Sep 20th, 2007, 12:27am » |
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Jenn sweety... I love you. There is nothing more that I can say to you worth saying then has already been said here...
Funny that he may complain about you not knowing when to take the appropriate action to avoid the nightmare of a cluster headache.... I guess I'm a little cynical... My response would be ... 'If I knew when to abort an impending nightmare... I would have left your ass a long time ago.'
with warm regards,
Tony
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ski2k
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Re: &^%$$^)&^&%#@!!!!
« Reply #17 on: Sep 20th, 2007, 12:33am » |
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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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Re: &^%$$^)&^&%#@!!!!
« Reply #18 on: Sep 20th, 2007, 12:41am » |
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on Sep 19th, 2007, 11:38pm, nani wrote:| . But... and I do have a big butt, |
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You had better if you are going to keep cushioning our falls and bouncing us back up when we need it.
Pretty big boot too
No firm plan yet, but I am we are going to meet you soon 
......tim
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Charlie
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Re: &^%$$^)&^&%#@!!!!
« Reply #19 on: Sep 20th, 2007, 1:00am » |
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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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lashultz
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Re: &^%$$^)&^&%#@!!!!
« Reply #20 on: Sep 20th, 2007, 2:47am » |
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I think most of us understand your frustration. I feel the same misunderstanding a lot. Someone trying to diagnose me and play Dr. I do know that she is only trying to help, but it doesn't. Hang in there
Lee
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sandie99
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Re: &^%$$^)&^&%#@!!!!
« Reply #21 on: Sep 20th, 2007, 4:22am » |
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Jen... 
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.
Sanna
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Saffy
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Re: &^%$$^)&^&%#@!!!!
« Reply #22 on: Sep 20th, 2007, 5:12am » |
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Hi Jen,
I used to take MaXalt and it did work for me for a while if I took it at the right moment. Not supposed to take it daily blah blah so try not to etc etc. I actaully got MORE confused whether I needed to take it as time went on not less.
Thing is there you are head pounding brain scrambling nicely, trying to work out precicely when to take the damn medication - PERFECT don't you think. And nobody can do it but you - even better.
There is only one piece of advice and here it is. Any relaltionship, needs to be balanced i.e. each must be giving and recieving a similar amount. Not the same thing but at the end of the day it must way up about the same like a see saw. However a see saw goes up and down a bit now and then and given time as long as it has a strong central fulcrum will balance back out eventually, just a little time.
I hope your see saw comes back into balance.
Saffy
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PollyPocket
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Re: &^%$$^)&^&%#@!!!!
« Reply #23 on: Sep 20th, 2007, 6:09am » |
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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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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
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sldrswyfe
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Re: &^%$$^)&^&%#@!!!!
« Reply #24 on: Sep 20th, 2007, 7:01am » |
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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  !! Can you imagine???
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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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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