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sassy_lady
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PISSED OFF!!!!
« on: Jul 28th, 2005, 12:53pm » |
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How do you do it, I'm VERY PISSED OFF!!!!! I fell so damn helpless, I've tried everything I could think of to help my husband Charlie, I've packed up the nick nacks, got a air purafire, cleaned all the dust up, washed the rugs, wiped down the walls, there has to be something I can do to help, besides sitting on the side lines, we are all goiung crazy here in this house, he's not getting any sleep from these damn CH's he's bitching most of the time, he's on our son's ass all the time, & he acts like we have a child from hell, & in real, we have a great son, he's not running the streets, not on drugs, never in any trouble, he's a good kid, But when my husband walks in the door from work, he acts as if we have done anything all day, I've been over looking alot of things, cause I see what he is going through, but we are going through it too with him, & I DON'T KNOW WHAT TO DO!!!!!!!!!!!!!!!! the jokes aren't getting it any more, I'm info. ed out, I'm just so fucking lost right now & it ain't FUCKING FUNNY!!!!!!!!!!!!
he won't talk to me, He hides in the bathroom, & I've been so damn stressed out that I'm getting my HA's back. from a workmens comp. I know they are not as bad as his!!! don't get me wrong, I'm not giving up, I'm just really piss!!!!!!!!!!!!!!! my hands are tied, there has to be something out there to help him.
LOST, CONFUSED, & VERY PISSED.........   
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Margi
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Re: PISSED OFF!!!!
« Reply #1 on: Jul 28th, 2005, 1:08pm » |
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Hi Jolene,
First of all - BIG HUGS, darlin - I doubt there's one supporter amongst us who hasn't walked in your shoes. We've all felt that same frustration and anger that you're feeling right now. It's just part of the hand we're dealt. But, here's a tip for you - don't get mad at Charlie - get mad at the beast, the headaches. And take that anger out in a productive way and don't direct it at him. He's got enough to deal with right now. I know you're all going through it, but trust me: he's going through WAY more than you are. Added to his stress is guilt he's feeling for seeing you and your son upset.
Taking the anger out in a productive way means taking some time alone for yourself (and maybe your son) - go out for a walk, go to the gym, go for a drive, just get out for a while. Give Charlie the space he needs. And....in doing so, you will renew your OWN strength, just by taking some time for yourself. Go see a good comedy, find some way to reach laughter. Totally give yourself permission to forget that you live in Clusteropolis for a couple of hours. You'll be amazed at how refreshing this can be and how much stronger you'll feel to get through yet another day. I dare ya. It's like a visit to a spa, doing something like this is the middle of a cycle. It might feel horribly selfish at first, but I'm sure Charlie will understand that you need a couple hours off - he'll probably encourage you to do it, in fact! He'll be ok without you, I promise.
I read your other thread and you said he's tried all the meds. What meds, exactly? Maybe we can help? Does he use ice when he's getting hit? It really helps calm them down, if nothing else.
Jolene, there IS nothing you can do to stop his pain. Admitting that is huge in a supporter's survival kit, let me tell you. What you CAN do though, is accept him as he is right now. And let him know that you do. That you don't blame him for anything. He's going to rant and rave when he's getting hit - it's his only defense against the pain. So give him the space to do that and take NOTHING personally. You and I both know he would chose NOT to be in this pain if he had the choice, right? Anyway...you know all this, Jolene - what you may NOT know is that each and every one of us is here for YOU, as well - 24/7/365, ok? We've walked in your shoes, my friend. Some of us are walking in them right now, actually. My hubby is starting the 8th month of a rather hellacious cycle and he's nearing the end of his rope too. If you ever need a shoulder off the board, email me at moxie_miss@hotmail.com. I'll leave a light on for you, ok? 
Finally, re-read Firebrix's words to you. She's an amazing supporter and she really sums up the attitude we all need to adopt. Her hubby has been chronic for a long time and she's a star supporter in my books. Here's what she said to you:
"You'll be surprised in time when you realise just how much you really DO help Charlie, Jolene, even if it doesn't seem like that to you right now. A calm and gentle supporter (who must also have a spine of steel) who puts his needs before her own is probably THE most valuable asset a CHer can have. If she can also help him to make the transition from the pure torture of those headaches back to life in reality with a cuppa,a smile and a gentle nudge in the right direction she will also help him to grab a little fun, life and laughter when the h/a. has passed. It is all too easy to live the headaches and forget that life continues on all around us; sunny days can waste into darkness and if we allow it to, those h/a.s can rule our lives. Good supporters will try to ensure that the pain free moments are as joyful and happy as possible for there is no reason our CHers need to live those h/a.s 24/7. This is something we can really excel at if we practise really hard!"
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| « Last Edit: Jul 28th, 2005, 1:13pm by Margi » |
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sassy_lady
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Re: PISSED OFF!!!!
« Reply #2 on: Jul 28th, 2005, 1:40pm » |
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Please don't get me wrong, I'm not pissed at Charlie, he's my whole world, I'm pissed at the CH's, I know there are making him this way, I'm pissed at myself, I'm his wife & a mother, I fix our problems, & I'm pissed that I can't fix this ONE!!!
He's on imatex, melatonin, benadril, & o2, I think that is it. he stopped taking all the other junk, talked with 3 phamists., none of them could tell me anything new, so he has been going with what he read here,
everything is just really getting to me, I haven't been sleeping, been up with Charlie to make sure he's ok!! plus working myself, I have my own house cleaning business. lost a coulpe of people. to tired to go, been trying to sleep in the days while he's at work, just to stressed out to sleep!!
THANK YOU FOR THE SUPPORT, & THE REMINDER!!
GUESS I NEED TO HAVE A CRYING FIT. FEEL LIKE I'M GOING CRAZY!!! 
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nani
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Re: PISSED OFF!!!!
« Reply #3 on: Jul 28th, 2005, 1:59pm » |
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on Jul 28th, 2005, 1:40pm, sassy_lady wrote:| GUESS I NEED TO HAVE A CRYING FIT. FEEL LIKE I'M GOING CRAZY!!! |
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Cry, scream, jump up and down, beat the crap out of a pillow... you do whatever you have to to keep yourself sane and balanced, sweetie. I know what you mean about the "can't fix this one" issue. LOL As women, we do try to "fix" everything, huh? Just remember, there's a difference between "giving up" or not fighting anymore, and the reality that we just can't fix everything. Keep fighting, keep getting the frustration out, and hang in there. Those of us who suffer know very well that, in many ways, our supporters suffer more. Thanks for being there for Charlie. Don't forget we're all here for you, too. hugs and lots of PF wishes to your house, nani
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sassy_lady
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Re: PISSED OFF!!!!
« Reply #4 on: Jul 28th, 2005, 2:39pm » |
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Thank you, my son & I just had a crying & hugging moment, he came in & found me crying, Bless his heart, he didn't say a word, just came over & hugged me & started crying himself. then we chated a min. let him know I was ok, just frusterated. he's a good helpper in soo many ways. & such a big supporter!! he said he knows dad is hurting & that he needs to vent, that he gets frusterated too, but understands!! what a good son I have. 
I'll never stop fighting for my family,
WE WILL FIGHT THIS !! TOGETHER!! & WITH YOU ALL! THANKS!!
JOLENE
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Margi
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Re: PISSED OFF!!!!
« Reply #5 on: Jul 28th, 2005, 3:22pm » |
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on Jul 28th, 2005, 1:40pm, sassy_lady wrote: I fix our problems, & I'm pissed that I can't fix this ONE!!!
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BOY, can I relate to THAT one, honey! All the years I've spent in the cluster community, the endless research I've done....and I still can't fix my boy either. Man, it sucks to be us, sometimes, doesn't it Jolene? This has got to be THE most helpless feeling in the world.
But there comes a point when we have to admit and accept that we can't fix it. It's beyond our control. It's one of those things you just have to put in the box marked "Unfixable Things". I know that sounds like we're surrendering to the Beast (and, God, I hate that feeling!), but we truly are powerless to stop the pain.
One thing I will offer you though, is take some of that Benadryl or melatonin yourself tonight. Get some sleep. Charlie can get through a night time attack alone - remember you can't stop the pain. Sleep deprivation is the supporters' nemesis. Don't let it win. Give yourself permission to sleep tonight. You'll be much stronger for Charlie, your son and yourself tomorrow, Jolene. Hear me on this one, ok? Just one night. Give yourself a break, ok? You need it.
When the crying jags start with a supporter, that's always a signal to me that sleep deprivation is winning. Charlie will understand if you take tonight off.
I know I'm Mrs. Pot talking to Mrs. Kettle here, I'm guilty of it too. but, I'll make ya a deal - I'll take the night off tonight if YOU will, ok? Let's check in with each other in the morning and see how we feel, ok? Mike's getting hit at least twice during the night and, although I don't get up with him anymore (he prefers to cluster alone), I lay awake until he comes back. Tonight, I'll take a benadryl though - it really does help.
So, see ya tomorrow, ok? And give your son a big hug from me. Tell him he's doing a great job as a supporter too!
BIG hugs.
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sassy_lady
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Re: PISSED OFF!!!!
« Reply #6 on: Jul 28th, 2005, 3:26pm » |
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you have a deal!!
Thanks Jolene
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sassy_lady
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Re: PISSED OFF!!!!
« Reply #7 on: Jul 28th, 2005, 3:41pm » |
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Going to laid down now, my head is pounding! try & get a nap before Charlie gets home from work.
Thanks again Nani & Margi  feeling better for the most part !!
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burnt-toast
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Re: PISSED OFF!!!!
« Reply #8 on: Jul 31st, 2005, 9:15am » |
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The real shame in this disease it that we're pretty much all info'd out and I know our support teams are as well. I see it every morning in my wife's face when she knows I've had another bad night.
We were talking this morning about some recent posts regarding neurologists that are oblivious to this disease and how this is a good indicator of how little effort/resources are going into research.
I cried out about a week or so on the board, feel free to do the same because at least it helps get some of the frustration out. It also provides opportunity for others who know this nightmare to offer support.
I need answers, we all need answers and relief we can count on. I'm constantly looking but so-far have only found hope in the slow progress that is being made at understanding this disease and in this board. I always tell myself that a cure is just around the corner.
Best wishes to you and yours. May God watch over us when we need him most.
Tom
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sassy_lady
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Re: PISSED OFF!!!!
« Reply #9 on: Jul 31st, 2005, 9:41am » |
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Thanks Tom,
I was feeling bad that I said that I was info'ed out, been going through this for so long, then we find this site, & I really got pissed that I could find any way to put a stop to these CH'S Hell Trips, Then they stop for 3 years, & out of the blue they came back this year.. I get piss at the people at Church that know every thing, & really don't know anything about Ch's. " Oh Let us pray for you & then you can go home & throw all those meds away, Beleave in the LORD, THAT PISSES ME OFF THE MOST!! WE BELEIVE IN THE LORD, YET THE LORD ALSO PUT DR.S ON THIS EARTH TO HELP DO THE LORDS WORK!! & THEY ACT LIKE WE DON'T BELEIVE IN THE LORD CAUSE CHARLIE STILL HAS THE CH'S, DON'T GET ME WRONG THERE ARE ALOT OF GOOD PEOPLE IN OUR CHURCH, SOME ARE JUST OUT THERE!! TRY TO AVOID THEM BUT THEY WAS WAYS FIND YA!! that reminds me have to get ready for Church.
Thanks again for the support, everyone really made me feel better, & let us know that we are not alone in this fight & that there are people who understand what we are going through!!!!!
PFDAN TO ALL WITH LOVE & PRAYERS!!!
JOLENE
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Jonny
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Re: PISSED OFF!!!!
« Reply #10 on: Jul 31st, 2005, 6:20pm » |
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on Jul 28th, 2005, 12:53pm, sassy_lady wrote:| he's bitching most of the time |
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Im sure he is so sorry that some fuck shoveled some hot coals into his head for him to hold.....Unreal 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Redneck
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on Jul 31st, 2005, 6:20pm, Jonny wrote:
Im sure he is so sorry that some fuck shoveled some hot coals into his head for him to hold.....Unreal |
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Had hot coals shoveled. Never screamed at the wife and kids. Made every effort not to, no fucking how much it hurt. Life sucks, but we take what it gives and try to remain human in the process!
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jcmquix
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Re: PISSED OFF!!!!
« Reply #12 on: Jul 31st, 2005, 8:04pm » |
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on Jul 31st, 2005, 6:50pm, Redneck wrote:
Had hot coals shoveled. Never screamed at the wife and kids. Made every effort not to, no fucking how much it hurt. Life sucks, but we take what it gives and try to remain human in the process! |
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I really do not want this to be taken the wrong way, but most of the reason I was always having a problem was that I was trying to handle alot of this on my own. We are taking a different approach to things now, I am getting the space that I need when I am getting the hits and my Family (Wife & Son), understand what CH is now alot better thanks to this site and the people here.
I am glad that you never got upset or angry with no one while you were getting hit, I am sorry, but yes I have yelled quite a few times during a hit. When something is twisting your brain like a wash cloth its hard to remain calm 
All is well on my end, we are dealing with it as a family and we will kick the BEAST in the A**. We can out last him.
Hey Jonny  Thanks...
PFDAN's to All !!
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Redneck
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Wishing you and your Family the best. Be well. Take care of your family and yourself. 73
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sassy_lady
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Re: PISSED OFF!!!!
« Reply #14 on: Jul 31st, 2005, 10:28pm » |
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NEED TO CLEAR SOME THINGS UP, BEFORE THIS SITE & ALL THE INFO & SUPPORT, & BEFORE WE GOT USE TO CH HITS, WE BLOW UP ON EACH OTHER, THEN THEY WERE GONE FOR 3 YEARS, THEY CAME BACK THIS YEAR, THOUGHT THAT WE WERE DONE, BOTH OF US, & THEN HERE THEY ARE, & I KNOW HE IS PISSED THAT THEY ARE BACK, PLUS OTHER PEOPLE IN OUR FAMILYS & THEIR PROBLEMS, WORK PROBLEMS, FUCKED UP BOSS, CHURCH KNOW IT ALL'S, IT'S HIS WAY OF RELEASING, BUT HE IS GETTING BETTER, SINCE I'VE POSTED THIS POST, & HE'S READ IT, WE HAVE SAT DOWN & TALKED, INSTEAD OF BLOWING UP ON EACH OTHER, CAUSE I BLOW UP ON HERE & GOT MY CRY OUT & GREAT SUPPORT FROM ALL OF YOU ON HERE, GOD BLESSED ME WITH A GOOD MAN, HUSBAND, FATHER & BESTFRIEND!!
SINCE THE DAY I MEET MY HUSBAND, HE HAS NEVER LAID AN ANGRY HAND ON ME OR MY SON, & HAS NEVER CALLED ME OUT MY NAME, & I'VE PUSHED HIM, BELEIVE ME I CAN BE SOMETHING ELSE, MY 1ST HUSBAND BEAT ME 2 TIMES, AFTER THAT I LEFT BEFORE HE KILLED ME OR I KILLED HIM. THE TRUE FATHER OF MY SON, BEAT ME WHILE I WAS CARRING MY SON STILL IN ME, SPENT THE LAST 3 MONTHS OF MY PREGANCY IN THE HOSPITAL ON MY BACK, WHEN I GOT OUT, HAD TO RUN, MOVED TO FLA, MEET A TRUE MAN. SO ARE LIFE TOGETHER IS GREAT, EVEN WITH HIS BITCHING & MINE, BUT WE LEARN EVERYDAY & WE TRY TO IMPROVE OUR LIVES. THIS WAS THE 1ST TIME I BLOW UP & IT WASN'T ON HIM!!, & WE COULD TALK ABOUT IT IN A POSITIVE WAY. SOME OF THE BITCHING HE WAS DOING HE DIDN'T EVEN REALIZE HE WAS DOING IT UNTIL HE READ THIS POST!!
SORRY FOR THE CONFUSSTION, WAS UPSET & DIDN'T GET ALL OF IT OUT RIGHT!!!
THANKS JOLENE
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jcmquix
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Re: PISSED OFF!!!!
« Reply #15 on: Jul 31st, 2005, 10:29pm » |
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on Jul 31st, 2005, 9:19pm, Redneck wrote:| Wishing you and your Family the best. Be well. Take care of your family and yourself. 73 |
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Hey man.. same to you too, I still Love & Pray for you..
If I get to the next Convention & not having the HA's we will have a few
Your Friend
Charlie
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Jonny
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Re: PISSED OFF!!!!
« Reply #16 on: Aug 8th, 2005, 6:15pm » |
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on Jul 31st, 2005, 8:04pm, jcmquix wrote:| we are dealing with it as a family and we will kick the BEAST in the A**. We can out last him. |
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Now thats what Im talkin about! 
Put a boot in that beast ass!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Linda_Howell
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Re: PISSED OFF!!!!
« Reply #17 on: Aug 8th, 2005, 6:31pm » |
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S assy lady.
Want want to hit that caps lock.
We are really NOT into screaming here. For most of us me too, it pisses us off.
Linda
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Sandy_C
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Re: PISSED OFF!!!!
« Reply #18 on: Aug 8th, 2005, 7:07pm » |
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Jolene
As a sufferer, I can't begin to tell you how much a supporter means to us. I'm glad that you and Charlie can yell, scream, throw plates if you need to, because anger can be theraputic. You both know that you are not angry at each other, but at the beast that is robbing Charlie of his very life, the things he loves and needs, and of your life too, the things YOU, love and need. One of the things Charlie needs right now is you. Yell, vent, scream - to us, because we need you, too, and we love you. None of us could survive this godawful afflication without our supporters.
Hang in there - we love yu.
Sandy
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sassy_lady
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Re: PISSED OFF!!!!
« Reply #19 on: Aug 9th, 2005, 7:58am » |
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Thanks to all!!
We are doing so much better & dealing with the beast in new ways on all sides, Can't tell you all enough on how much this site & all of you Have helped us, our lives are brighter & we will beat this beast every time it shows it's ugly face!!
We can't wait till we get to meet all of you face to face!!
soon I Pray!!
& as for the caps, SORRY !! didn't know that was yelling!! will reframe from useing so much!!
Lots of Love & Prayers to all !!
PFDANS TO ALL !!
Lots of Love Jolene
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