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Topic: I am a new supporter (Read 468 times) |
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Heather
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I am a new supporter
« on: Mar 7th, 2005, 2:17am » |
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Hello everyone.
I have been reading your website for a couple of months now. But I still have so many questions, some I'm not sure how to ask. I not only cry to think of the awful pain that the love of my life goes through constantly, but I also feel this enormous amount of love that all of you have and how strong you and your sufferers are. All of you are so supportive of your loved ones and of eachother it's incredible and so heart warming. And let me just say that Jackie, that first post that I read (top of the page) was one of the most wonderful things that I have ever read.
My boyfriend suffers from chronic cluster headaches. They started a little over 10 years ago. We met a short time before Thanksgiving of last year and I can't begin to tell you how amazing this man is. He does so much for me that I feel guilty because I feel like he should be resting instead of making me dinner. We don't let the headaches affect us when they are not happening so that they don't bring us down even more-I won't give into them. But I feel helpless. When we first met he had this secret that he was afraid to tell me because he didn't want to involve anyone else (with his headaches). He finally wrote down this website address and gave it to me one night. I broke down because this man that I love goes through what I couldn't even imagine going through even after having a child. I have not been with him yet when it hits, but I know it will happen eventually. I've been with him afterwards many times and I see the after effects. I am not scared nor will I cry in front of him or think that this would be an awful way to live for me. I want to be there, and what hurts is that I can't be right now because he won't let me be. He doesn't want me to be there because he says he doesn't want to make me sad. He says he doesn't want to be a burden. I wish he wouldn't think of himself as a burden because that is not fair. I know that I can't cure it, but I want to help it. He doesn't take any medication because he has been on so many different types that don't help that he gave up.
I could ramble on for hours about this. I guess I wanted to tell you all of this before I ask you about things that I'm curious about. I have read a lot of the website, and I have researched on the internet. I want to know everything I possibly can so I can do everything I possibly can. And honestly, this feels really good to be talking to all of you. He says it's not fair to me to put me through his headaches. I told him that what's not fair, to him, is thinking that. That has to be one of the most unselfish statements I've ever heard. He is so unbelievable. I wish you all could know him. I also told him that if he wants to believe that something
is unfair, then it would be him going through these headaches- alone nonetheless- and not letting me do everything that you supporters do for your sufferers.
So where are the questions right? I guess I'll start here- He is such a smart man, wise and intelligent. But sometimes he forgets things. He thinks it's from the headaches. Have any of you experienced your sufferers have neurological damage or maybe just forgetfulness?
I guess I'll leave it with that question for now. I apologize for such a long post. But for months now I've read and read and have so much to say. I want to know everything. I love this man and I want to do this with him. Thank you.
Heather
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nani
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Re: I am a new supporter
« Reply #1 on: Mar 7th, 2005, 8:14am » |
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Hi Heather, welcome and I'm sorry you're here. Thanks for being such a caring supporter. Many of us don't know what we'd do without our supporters. Has your boyfriend tried oxygen to abort his headaches? It's a lifesaver for many of us. Look over to the links on the left and look at the oxygen info link. I can't comment on his forgetfulness. Many of us have that problem and it's sometimes caused by the meds we use. Talk to his dr about it. Since he's not using any meds now, have him look at this. It's long, but worth reading all the way through. It's natural and many of us are finding it very promising. Good luck to both of you.  Pain free wishes, nani
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1107368408
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seasonalboomer
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Re: I am a new supporter
« Reply #2 on: Mar 7th, 2005, 8:52am » |
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Hi Heather,
Your sufferer's sharing of his cluster information by sharing this website info with you is a great first step. If he is like me, and many others, we do guard exposing others to our "experiences". I've been married thirteen years and I go to great lengths still to avoid exposing my wife to having to see me in the middle of a headache. Chances are good your boyfriend will not "open" up a lot more about his headaches, hoping that the knowledge you've gleaned from here allows you to understand what he is going through. Most of us really don't want to share much more than having people knowing that we're not out there in the middle of the night dying, we're simply having a really really bad night.
My wife has found her best support to me is to ask once simply if there is anything she can do, and then she brings me a soft chenille blanket and a really soft pillow, for the point when I can finally put my head down. She can't really touch me, massage me, anything when I'm in the clutches and she's understood that here presence isn't really a positive for me after a certain point. I love her, she loves me and we've developed a set of boundaries for the headache experience.
My commitment to her is that I try to avoid cluster trigger behavior for events that we're both committed to participate. Like, if I'm in cycle, I avoid drinking before or during a social occasions. If we've got a big afternoon planned on weekend -- I should avoid vigorous exercise that morning. Sometimes, if we don't have joint commitments, I can engage in whatever cluster-risky behavior I want -- it's my head and my time.
She also has a healthy respect for what is important for the "fight" against the beast. She's not to pity me or treat me like a brain cripple. She's not to make large accommodations for me during cycle. Our life should be focused on being as normal as it can, and when a head occurs she lets me face it down as best I can. The spirit is challenged during these things and too much self pity and, to be honest, too much sympathy, doesn't help me.
Your communicating that you understand and are there for your boyfriend may be exactly what he is hoping for. So leave space, learn as much as you can, and be ready for future invitations into the headache zone, but don't feel it is anything about you if he doesn't. It's about knowledge.
Good luck.
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| « Last Edit: Mar 7th, 2005, 8:54am by seasonalboomer » |
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Margi
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Re: I am a new supporter
« Reply #3 on: Mar 7th, 2005, 10:19am » |
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Hi Heather,
only another supporter truly knows what YOU go through. There are some amazing supporters here and I'm sure they'll be posting to this thread soon. The two folks that have posted here are sufferers, not supporters. Seasonalbloomer gave you a very thoughtful post from his perspective though, watching his wife watch him.
Your question about his forgetfulness....is he on any meds at all? Meds can, quite often, cause this. Additionally, cluster quite often strike in the night so the sufferer is left sleep deprived which can also lead to memory lapsing.
So, he gave you this website? Does that mean that he posts here? If not, you should really encouarge him to do that - it really helps them to talk to others who feel their pain. It's also a very informative place to arm himself with questions for his doctor.
As to the "turtling" syndrome - very common and their need to hibernate is very real. Respect that. My husband has been a sufferer for a very long time and even now, that we're empty nesters, he still needs to be alone when he's getting hit. I stay within earshot but I never intrude. That was probably the hardest lesson I had to learn as a supporter. It's gut wrenching to have that totally helpless feeling wash over you and know you just have to ride it out until the attack passes. The biggest help you can give him is to educate yourself and read everything you can find. Be his eyes and his advocate with his doctor.
hang in there, Heather - please feel free to email me directly if you need a shoulder - sometimes it really helps to talk to someone who's walked in your shoes. moxie_miss@hotmail.com
edited to add: sorry, I just read through your post again and realize that he's not on any meds. I wrote up a list of non-prescription helps over at the OUCH site that might help him - here, check it out: http://www.clusterheadaches.org/resources/meds.htm
also, read about our Family Services Team - we're here to help the supporters: http://www.clusterheadaches.org/family/index.htm
hope this helps
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| « Last Edit: Mar 7th, 2005, 11:07am by Margi » |
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miapet
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Re: I am a new supporter
« Reply #4 on: Mar 7th, 2005, 11:39am » |
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hey . . .believe me, can I relate to what you wrote. A little over one year ago, I came looking for answers. My guy was a 20year chronic .. .and he wanted to protect me too .. .he had been battling the beast for a long time when I came along, and he was also medicaton free.
*HUGS* they do want to protect us . . .they are afraid of letting us in . . . i think they worry we may not be able to handle it . . .(boy, do we surprise them!).
Your guy, giving you this addy, was his way of sharing the beast.
You are doing a lot, just by educating yourself. When he's getting slammed, and needs you to do something (be an advocate maybe?) you will be prepared.
I totally understand the 'no medication' part. When I first started researching, I wanted their to be a way for a doctor to fix it . . .I couldn't understand why D didn't want to try anymore meds .. . boy did I find out . . .ALTHOUGH . . .he did agree to try oxygen, and was it a blessing . . .knocked the beast out in 7to 8 minutes .. .what a relief that was!
Take care of yourself . .. don't beat yourself up if you get tired, or if you cry, or if you want your life back . . .all of that is normal *g* .. .love you guy and yourself .. .it sounds like y'all are doing a great job of not letting the beast control your p/f time . . .that's important!
oops . . forgetfull . . . .maybe it happens after a particularly hard cycle with-in a cycle? (that's what I called the worse times) .. .when he's not getting enough (any?) sleep? I know, it used to take all of D's energy (and eventually mine too), just to battle the beast, and we both forgot a lot of other things, due to no energy to think abut them . . .
Anyway . . .you're fighting the good fight . . .if you ever want to talk . .feel free to email or pm me.
*positive light and energy*
miapet
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Margi
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Re: I am a new supporter
« Reply #5 on: Mar 7th, 2005, 11:48am » |
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awesome most, Mia. Thanks for putting into words what I could not.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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miapet
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Re: I am a new supporter
« Reply #6 on: Mar 7th, 2005, 3:32pm » |
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thanks Margi . . I only said what y'all said to me at different times *g* . . .I haven't forgotten all of the support that was so freely given when I stumbled in here looking for hope . . . .
*positive light and energy*
mia
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Heather
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Re: I am a new supporter
« Reply #7 on: Mar 7th, 2005, 3:47pm » |
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Hi again everyone,
Thank you all very very much. You gave me great information and insight that I will take to heart. To answer your question Margi no he doesn't post. He did give me the website but he wasn't aware of the message board. I would've told him along time ago, I just assumed he knew. He knows now and sounds interested. I hope he decides to come on. Thank you again.
Heather
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Leesa
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Re: I am a new supporter
« Reply #8 on: Mar 7th, 2005, 3:50pm » |
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Heather, sorry your here hun, but this sight is the BEST place for you both. Soak it all in and we are here if you need anything just let us know.
Leesa, supporter for life 
PS: check your private messages gal 
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Gator
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Re: I am a new supporter
« Reply #9 on: Mar 9th, 2005, 5:13pm » |
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I want to thank you for being concerned enough about your boyfriend to learn about his affliction. I have been surprized by the number of sufferers who say their significant other doesn't make an attempt to find out how to help them. I've seen more couples break up than I care to just in the year I have been here.
As to the memory loss. According to my doctors, insomnia, depression, medications and prolonged exposure to extreme pain can cause memory problems. I am struggling with this myself right now. It's really very scary, but I make it a big joke when the wife or kids ask me to remember something. I tell them if they are depending on my memory, then they obviously weren't that worried about whatever it was they were telling me. I write a lot of things down. Sometimes I even remember to look at the notes.
Hang in there. There are a lot of good people here that help you with any questions you have. The only stupid question is one you don't ask.
Welcome to our little family.
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