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Topic: How do you get support when they don't understand (Read 337 times) |
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Melissa11-8
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How do you get support when they don't understand
« on: Dec 3rd, 2002, 3:10am » |
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and when I don't understand it myself??
This is my first bought with CH. I am on disability a month now, only married 3 months and it is all taking its toll. I can't help to think how selfish my husband and both families are being wanting it to be OVER and life back to normal - well HELLO! It is 4 am and they are all sleeping and haven't been in pain for the last 2 hours with no relief!
And I am facing my Neuro appt tommorrow and as 23 day of prednisone with Verapamil and Topamax has had minimal relief, we will be moving onto Lithium for which I am terrified. So to night, I finally broke down and cried -pretty much to myself as my husband is the type of guy that if he can't fix it, he doesn't bother trying (guess that isn't a bad thing in mot cases ) But right now I feel like I have no one in my corner. Im litterally all alone in the worst boughts of it in the middle of the night. Home alone all day long -to repeat it all the next day.
Have had lots of time to think and I know that I do have issues with handling and processing stress (always have and have had health related issues from that in the past -stomach pains etc) so I bring up going to talk to a Psch or someone (never have or wanted to before) to at least use this time to be productive in improving how I handle stress and possibly in turn improve my health. But instead of seeing this as a good idea I feel like that's a cop out some way. That I need to help my husband and family feel "normal" again and worry about me later.
Does anyone have Drs or anyone that they have found helpful in processeing stress or getting through these issues.
Sorry to whine, but with everything looming its so hard right now. The holidays are my favorite time and I dont even care if my tree goes up this year or if the gifts get purchased. I just don't have the energy or desire and it is making me so upset that I can't even enjoy the idea of holidays and happier times right now. I know so many of you have dealt with these for years and my Dr today gave me that forcast/preparations of remissions and relapsases. It all seems so daunting and you all seem so strong.
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Ted
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Re: How do you get support when they don't underst
« Reply #1 on: Dec 3rd, 2002, 3:25am » |
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Yup. I have one person and one person only I rely on and figure this all out with. Whenever an attack is over and whenever I hit a crossroad stemming from attacks I turn to the one person who truly knows what I go through. Who knows just how much hell is created physically and emotionally. I always turn to me. As an attack ramps up or winds down I have these thoughts and fantasies of turning to someone else and just getting a hug and maybe even crying on their shoulder. But after it's all gone and I feel completely better I think better of it and feel foolish for even having the thought, let alone trying to act on it. So, I alwas turn to me alone.
You, on the other hand, are married. You have a husand who should be there for you. Who shouldn't face it as "I can't fix it so I won't deal with it." If you had a massive coronary (And I'm presuming he's not a cardiologist) would he turn his back because he can't fix it? He shouldn't take this attitude because he can't see and measure the affliction by watching or hooking you up to monitors either.
Good luck and keep talking. And stop apologizing for "whining"/venting.
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ave
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Re: How do you get support when they don't underst
« Reply #2 on: Dec 3rd, 2002, 3:33am » |
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Great post, Ted.
May I add, Melissa, that what worked very well for me, was telling my partner in life that he couldn't do anything about it, that I couldn't do anything about it, and that the doc could not do much.
BUT... that he could help me deal with it by just being there with that shoulder or that warm hug. No questions asked.
He does now, and I am eternally grateful for that gesture, even if it does not take away a jota of the pain.
Try it that way. Don't start seeing psychs until you have tried all the support on this board.
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Melissa11-8
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Re: How do you get support when they don't underst
« Reply #3 on: Dec 3rd, 2002, 3:51am » |
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Thanks guys! I really at this point am so tired and scared and how dare he need emotional support from me. I don't take him to my Dr appt any more because he I feel is counter productive as he's pissed off in there and Im there with lists of questions and suggestions that all of you have so careingly made.
my only godsend is that this is a long term relationship and we did live together almost 2 years prior and I know it hasn't been easy on him (he had what I think was panic attacks so bad when this all hit that we just about took him to the ER with chest pain) But he won't talk and Im too tired.
I guess I'll just let it go for tonight, see the Neuro tommorow, hope and pray for a better day and maybe a common ground. Hell I pointed out tonight that in a week he hasn't asked how Im feeling. He said I can see you feel kike carp. Well I said I can see that you had a hard day at work when you get home but I always ask how your day was... he said nothing.
And that is what kills me. I am doing ANYTHING I can to keep his life as "normal" as possible. Im still paying the bills, making dinner for when he gets home making sure his wash is done (he may have to fold it but I get it started for him) and yet I can't get a stupid cup of tea made for me! I am really much more upset than I thought I was.
Thank you all for letting me vent. I am going to take tommorrow to see what it is I need from him to get a sence of normalcy back in my life and start there.
You are all so strong! I can only hope to draw off of your courage
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Ted
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Re: How do you get support when they don't underst
« Reply #4 on: Dec 3rd, 2002, 4:09am » |
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Down below this "General Posts" section is the "Supporter's Corner." You might want to direct your husband there. I've seen a few people go there not starting out as good supporters and sitting there bitching about this and that because their spouse, who suffers, won't this or that during an attack. In other words, they didn't understand even thought they could see it all. But once they posted there, the supporters would be able to give a perspective to them that we can't. And they'd turn around with their attitudes. Once in a great while they'd all be so burnt by dealing with who they support that someone would tell the person they were truly acting like dicks. But that's rare. It is, however, fun to watch them beat up someone who bitches about dinner being burnt because their spouse had a "headache." Again, that's rare so send your husband there and let them try and explain it to him.
By the way. You're here. You're strong too. You have your own strength to draw upon. So add that to aything you get from here.
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Charlie
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Re: How do you get support when they don't underst
« Reply #5 on: Dec 3rd, 2002, 6:17am » |
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Hi and welcome. Here are a scores of sufferers who know exactly what this horror is and what it does to families, work, and friends. Also, you'll find many who are supporters and friends of cluster headache victims. "Victims" works for me.
Your husband needs an education in more than just CH. Perhaps this site will teach some empathy. Sometimes, I think one of the worst things to happen is calling Clusters "Headaches." It has no relationship to any headaches I've ever experienced.
Below is a link to a letter from our friend Simon, who has set down a letter describing clusters and its effect on work and friends. It's a wonderful explanation of this syndrome and I suggest printing it out. It's well-worth it. Good Luck and keep in touch. We are here as a sounding board as well as help and support. Good luck.
Here is the link which to this letter:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Charlie
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NotH20
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Re: How do you get support when they don't underst
« Reply #6 on: Dec 3rd, 2002, 8:27am » |
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Great post Charlie......I totally agree with the fact that Melissa's hubby needs a little "teaching."
Melissa, you said this is your 1st attack of clusters and although I don't want to alarm you - I also won't sugar coat anything for you. IT'S PURE HELL on both you and your loved one's.  But how you choose to handle the situation can make all the difference in the world regarding your outlook for the remainder of this cycle and for any future cycles to come.
Medications are all trial and error. The combinations and dosages are trial and error too. What works for one ch'er does not work for all. Don't get discouraged when your doc mixes meds - you may want to keep a journal to see what works for you and what doesn't work for you. You didn't mention O2 - that's an immediate abortive for many. Other abortives are Imitrex injections, Maxalt and even Zomig - just for some suggestions.
You are not responsible for your husbands feelings and actions - he's a grown man and needs to realize when he's needed to be the rock for you to lean on. If you are getting hit during the day and night AND you are doing the cleaning, cooking, etc - you are doing more than some of us on this board can handle during a cycle. See - you too are strong. 
IMHO therapy is not a cop out - but an avenue that some people take for the betterment of themselves FOR themselves. If you think it would help you cope with "life" right now during a cycle - then go for it.
This board is a great place to vent since we all know exactly what you are going through. I wish you much luck with your neuro....keep us posted.
Keep the faith Melissa,
NotH20
PS - If your hubby doesn't straighten up - maybe we could get Jonny to put him back on track again LOL 
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j.halber
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Re: How do you get support when they don't underst
« Reply #7 on: Dec 3rd, 2002, 8:32am » |
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Mellisa; I can only tell you what I have learned in my years of experience with this monster.IT ALL COMES DOWN YO YOU and IT'S ALL ABOUT YOU NOW!One of the major activating things is our brains.Worry Stress and too much concern for others just feed the monster.STARVE IT!My mother had this sign in the bathroom for years;Don't expect anything and you will never be disppointed.The very most important thing you can do for you is look after you.No-one can really understand what you go through except other sufferers and men in general have a need to try and fix what's wrong and don't get listening is all we need.Forgive him his manly traits.He can't help it. I know it sounds ridiculous but at all costs you must learn to avoid stress worry and above all anger, past, present and future.Keep the heart rate down, very important!And remember to really try and get well takes some major re-evaluation of you. I wish you strength and you should always remember you are never alone we are always with you and we really do understand.
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Opus
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Re: How do you get support when they don't underst
« Reply #8 on: Dec 3rd, 2002, 8:57am » |
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Melissa,
I know how you feel. I was there this summer. It was hard enough to get to work on three hours sleep without all the extra work at home. I have no one to support me and learned to hide my CH's from my wife. I saved time by buying paper plates and plastic cups and flatware. This saved doing most of the dishes. You have the idea on the laundry already. You will have to tell your husband that Christmas is on him this year unless he can help out a lot more. It must be hard starting a marriage like this. After 10 years of marriage my wife was fed up after 1 bad cycle. I don't think anyone can understand what we go through except us. Look for support here.
I have found that letting the stress get out of control will give me a few pain free days. I can't do anything relaxing without at least getting a shadow. Anger management would be helpful for me because I got so fed up with no one to help.
Whine, complain, Yell, vent all you want. That's what we are here for. If someone posts a mean reply realize they are in pain too. If you do seek mental health care don't feel as it is a cop out. But do it for yourself not others. Making your state of mind better will be the best help for your family. Unfortunately our state of mind is exactly what we need to survive the beast. Hope this helps. PJB
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Azrael
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Re: How do you get support when they don't underst
« Reply #9 on: Dec 3rd, 2002, 11:30am » |
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Even though it's not the same as having someone there to talk to face to face, or to hug, or whatever... The board is always there to lend a virtual shoulder in your time of need. The board helped get me through the longest, most aggrivating cycle I've ever had. I don't know how I could've made it through without this place.
From personal experience, if your spouse refuses to understand, or visit the supporters corner, don't stress over it. It's easier to just let it drop, and deal with the beast, than to deal with a spouse who just doesn't understand on top of dealing with the beast. I know how hard it can be to do that, but I've found that some people are just not cut out to be a good cluster supporter no matter how hard they may try. Good luck!
PFDAN............................ Drk^Angel
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Roxy
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Re: How do you get support when they don't underst
« Reply #10 on: Dec 3rd, 2002, 11:42am » |
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Thanks for posting the letter site Charlie...I think it will help alot of people. I printed it, and I'm going to make my kids read, and hopefully understand these damn things better.
Melissa, I'm so sorry for the pain and lack of understanding you're having with your husband. I agree with the others...see if you can get him on this site and have him read...or print off things and read them to him. Force the knowledge of what these ch's do to a person down his throat if he doesn't want to understand it voluntarily. If you've already tried that...try it again.
If he is willing, have him email my husband. Greg said he would be more than willing to talk to your husband about it...maybe it would help. If you want, just email me and I'll give you Greg's email address. If he's not willing to learn or talk to others...a swift kick in the ass might be appropriate!
I don't know how to force compassion and understanding on another person...I don't know that you can. But, don't think you are without people who do understand... everyone at this site will do everything they can to help you through this...so post...and email...find your help where you can. We are out here, and you have our sympathy and our best wishes...so take advantage of it!
Wishing you PF days and nights,
Roxy
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Mark C
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Re: How do you get support when they don't underst
« Reply #11 on: Dec 3rd, 2002, 11:48am » |
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There have been a few times where I would have liked to use the "Vulcan Mind Meld" to "share" my pain with an Earthling just so the experience could be understood....no luck yet.
Good Luck
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cootie
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Re: How do you get support when they don't underst
« Reply #12 on: Dec 3rd, 2002, 12:00pm » |
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I must admit " I " was onea them bad supporters at first years and years ago when it all started...I admit it and how I deal with it.....it was an inconvience I 'didn't' understand.....research helped me....I needed to educate myself.....it took time and wish I'd found this place years ago but I don't think they even had computers back then......har-har.....it all started about 15 years ago. People tend to ignore what they don't underestand sumetimes and just hope it goes away....gotta learn ta 'DEAL' with things and face things and realize what it all involves.....I try to take care of my end best I can with keepin scripts up ta date, callin the doc and insurence co....runnin to the pharmacy and doin whatever I can do whenever I gotta do it.....I can't help the pain.....OK...got that off my chest......my 2 cents tha's all.....
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Cerberus
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Re: How do you get support when they don't underst
« Reply #13 on: Dec 6th, 2002, 12:22pm » |
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there are alot of great posts giving some excellent advice on this thread. I will , however, offer one piece of simple advice that the rest will usually decline to offer.....
Send him to me and I'll crush HIS skull for ya....
Keep the faith.
Cerebus
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cootie
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Re: How do you get support when they don't underst
« Reply #14 on: Dec 6th, 2002, 6:10pm » |
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cerebus...your gonna get a lump of coal fer Xmas...jus jokein....just jokein...really.............I feel the heat already....sorry.......
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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