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Ray
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Re: Intimacy Question
« Reply #25 on: Mar 28th, 2008, 7:30am »
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Kitty:
 
I really feel for you.  Go and fight with the medical providers to find effective relief.  Try to find a headache specialist who treats cluster headaches.
 
Good Luck,
 
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Re: Intimacy Question
« Reply #26 on: Mar 28th, 2008, 8:43pm »
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Kitty, I wouldn't wish ch on my worst enemy, but your situation makes me think of a movie that I saw years ago. It was called "Powder" and it was about a young man who was struck by lightening, which made him very pale and gave him the power to allow others to feel suffering and pain. Everyone made fun of him and he was humiliated by his peers. One day some his enemies had hit a deer on the road and Powder (what they called him) grabbed one of the guy's hands, which instantly transfered the fear and pain of the deer to him. He was terrified as he literally felt and experienced the deer dying, but definitely understood the message loud and clear.  
 
So I guess my point is this... if you could just transfer the horrendous agony that you feel during a ch attack to your husband, for even just one minute, he would never bother you again guaranteed. Unfortunately, that is not possible and so I'm very sorry to hear that he has lacked empathy for what you are going through.  Just know that you have many supporters here who will listen anytime and who have a wealth of knowledge about this disorder.
 
Wishes for PFDAN Soon!
« Last Edit: Mar 28th, 2008, 8:44pm by KatzPurr » IP Logged





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Re: Intimacy Question
« Reply #27 on: Mar 28th, 2008, 9:01pm »
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[/color] So I guess my point is this... if you could just transfer the horrendous agony that you feel during a ch attack to your husband, for even just one minute, he would never bother you again guaranteed.
 
[color=Black]
I think that reading the posts from this site, not all from this post, have done as close to that as possible.  He didn't act the same way to me today, he acted like he is beginning to understand some of what I go through.  Hope it is gonna last!!  Only time will tell. Smiley Smiley Smiley
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Re: Intimacy Question
« Reply #28 on: Mar 29th, 2008, 1:42am »
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Sorry you have this so intense. Find a good doc. I have 3-4 a day for a year now, every single day. O2 is helping me, lots of coffee, and ibuprofen (never on an empty stomach)
 
Your husband has to understand this is not " not tonight I have a headache." I tell people it feels like someone tried to put a screwdriver in my eye and just missed and left it in my forehead for 2 hours. Not going to be in the mood with a screwdriver in your scull.
 
The pain and exhaustion is only part of the problem. CH also causes the hypothalamus to fail to maintain luteinzing hormone. Your sex hormones will be low. I went to an endocrinologist, my testosterone was low. I am now getting shots for six months, My last test my levels were still low and they are increasing my dose. If your hormones are off you will also lose interest in sex. The good news is that the shots help with the headaches, they are less intense.  
 
Some others have reported sex aborting an attack, no such luck here. I found it made things no better nor worse. But don't touch me in the middle of an attack!  
 
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Re: Intimacy Question
« Reply #29 on: Mar 29th, 2008, 10:26am »
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I have had the same experience with sex richcurtin.  I tried once because I heard that for some it was a quick headache cure.  Well, not for me.  I will never try that again.  
 
Also in response to hormones, mine have been screwed up since 1997 when I had my youngest child.  She is a little angel in heaven now.  She passed on July 1st, 2002 in a lake accident when she was 4 and a half years old.  Her name was Adrianna.
 
I had alot of complications with the pregnancy,  and even more with the birth.  She was born healthier than my other two, but it almost killed me.  My platelet count was so low that the Dr.'s wouldn't even give me a spinal tap when they did the C-section.   I had to have a transfussion after her birth.  
 
My hormones went haywire after her birth.  I was sent into a kind of early menopause.  I have hot flashes every now and then too.  The Dr. told me that I was not yet in menopause, but would probably experience the symptoms in a mild dose until I actually hit menopause.  I tell you what though, if the hot-flashes I have already had are mild then I am really in for it, lol.
 
My point will the above is that maybe it is my hormones cause part of the problem, but I just know that until my CH's let up on me for a few days at least ( which hasn't happened yet since they started) my husband is SOL cause I am not gonna go through pain just to shut him up.  
 
I must add that things are better in my house since I started  this post.  He is beginning to get a better understanding of these CH's.  The harsh words that were expressed here about they way he was acting helped more than anything I could have said.  I at least have peace about one thing for now.  
 
Thanks alll!!
Kitty
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Re: Intimacy Question
« Reply #30 on: Mar 29th, 2008, 3:57pm »
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They're not hot flashes...  I'm no expert, but I have it on good authority that lady CH'ers have Power Surges...
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Re: Intimacy Question
« Reply #31 on: Mar 29th, 2008, 8:20pm »
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Batch- what are power surges and how are they related to females with CH?  Thanks - I am curious as a doctor mentioned estrogen related issues to me too -
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Re: Intimacy Question
« Reply #32 on: Mar 29th, 2008, 10:12pm »
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Kitty, I just had to check back and see how things have been going for you. First, I am so sorry to hear of the loss of your daughter. I cannot even imagine what you have gone through. Also, I can identify with the difficult birth you mentioned. Though I was spared a transfusion, I did have a very rough time delivering my son (now 13), which ultimately had to be a c-section, as well. I had HELLP Syndrome, which is a variation of pre-eclampsia/eclampsia, also known as PIH, pregnancy induced hypertension. I was very ill, but recovered and thankfully it didn't affect my sex drive or impact my hormone levels adversely.
 
However, I am very happy to hear that things have been better with your husband and I pray for you to have some relief very soon! Take care!
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Re: Intimacy Question
« Reply #33 on: Mar 30th, 2008, 1:22am »
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That is exactly what I had KatzPurr, HELP syndrome.  It was pretty tough.
 
Things are going better for me.  My husband is doing much better about being patient.  He aslo started asking me questions about CH.  I haven't gotten him to come to this site yet, but most of the info I give him comes from here.  He asks me things like what causes them, are they looking for a cure.  He also has become more compassinate towards me.  He has stopped acting like these CH attacks are "all in my head" and nothing more than a little headache.  He is starting to see them for the horrible monster they are.
 
Batch, I would also like any info you can give on power surges.
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Re: Intimacy Question
« Reply #34 on: Mar 30th, 2008, 5:15am »
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Kitty,
 
I'm glad that things are better with your husband. Asking questions is great sign! Smiley
 
Hoping for the best,
Sanna
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Re: Intimacy Question
« Reply #35 on: Mar 30th, 2008, 10:18am »
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Kitty the most upsetting thing I read in this thread was about your daughter, I am so sorry  Cry Cry Cry
 
As for the headaches, I think a different nuero might help. Thier are a variety of meds and combinations that might help, its just finding what works for you "this" time. Always remember, just because a med or meds didn't work "that" time, doesn't mean they won't work "this" time. The beast has a way of playing games like that. I'm also glad your on the "100%" o2, make sure you get on it at the first sign, and make sure your rebreather bag is never less than half full at all times. Most of us tape the outside air holes, but if you do that you HAVE to take the elastic strap off, you can't use it, you'll have to hold it on with your hand, just in case the o2 runs out, you wouldn't be able to breath.
 
I'll light a candle for your daughter, again I'm very sorry. Cry
 
Sean.........................................................
 
« Last Edit: Mar 30th, 2008, 10:19am by Sean_C » IP Logged
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Re: Intimacy Question
« Reply #36 on: Mar 30th, 2008, 10:27am »
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I'm happy to hear your husband is showing some compassion now.
I know it's hard to understand what CH is all about even if you are in intense pain or exhaustion it's still hard to see what's going on inside of you from the outside.
He seemed a little bit cold but you can't blame him 100% çause CH is a menace for you as well as your partner.
At least that my opinion.
 
I hope he won't hurt your feelings in the future by leaving you,you don't need this kind of stress the CH alone is bad enough to cope with!
 
The best to you Wink
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Re: Intimacy Question
« Reply #37 on: Mar 30th, 2008, 10:32am »
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on Mar 30th, 2008, 1:22am, Kitty1973 wrote:
 
 
 
Batch, I would also like any info you can give on power surges.  

 
 That's called a euphemism
 
     Potter
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Re: Intimacy Question
« Reply #38 on: Mar 30th, 2008, 3:10pm »
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Here is an idea give your hubby some of the meds. so he won't want it either. Then he will leave you alone for awhile.  Grin
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Re: Intimacy Question
« Reply #39 on: Mar 30th, 2008, 7:51pm »
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LOL  funny puppy.
 
I don't think I will have to resort to that just yet, but will keep in mind. Grin
 
Kitty
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Re: Intimacy Question
« Reply #40 on: Mar 30th, 2008, 8:33pm »
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Glad you found "here"!
 
Not taking sides and not giving rlationship advice. I don't think anyone mentioned that your husband (and it sounds like you as well) may need more education about this very tricky and misunderstood condition.
 
If I read correctly you just started having Chs in November: or around 5 months ago. As a sufferer myself it took years to understand what I do understand and it is clear there is a lot more to understand that I do and that I will never fully understand these crazy things. And to make the situation worse, the only hard and fast rule about Chs is that they suck. Otherwise everything is relative to the person having them.
 
Telling your husband to go blow himself is a little pre-mature IMO. All of a sudden 5 months ago you discovered you have a condition that sounds like crazy talk to the "everyday" world, and this has caused a huge rift in your relationship.  
 
If it was me I would think my wife was making it up because she wanted a divorce or something. Unfortunatly it is your responsibility as a sufferer to get your husband to understand your condition (and you as well). You didn't ask for your condition but neither did your husband and he will have a hard time understanding for a while. I have friends and family members that do not understand CH's and think they are "headaches" and it is an issue for our family as well; and I've been a sufferer for a long time and have done lots of research and have tried hard to educate those around me.
 
Getting outside people to understand CH is so tough there is a special letter on this very site to help people try to explain thier condition to others. This is an issue that an awful lot of us go through. I am a little shocked that people who do not know anything about you and your relationship, who also suffer Ch and know how tricky they are to get a grip on themselves, as sufferers, would advise you to act haphazard with your relationships with others who are not sufferers and have had this sudden, mysterious change of which they know nothing about, thrust on them only a few months ago. I think the main reason for this site, that is stated, is so that CH sufferers can find people who can related to them, as people who do not have CH simply cannot. This is not thier fault anymore than it is yours or mine that we do get CH in the first place.
 
I hope things work out for you for the best and this long cycle of yours comes to a quick end! Either way you will find support here.
 
Welcome aboard the Crazy Train!
 
Jamey
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Re: Intimacy Question
« Reply #41 on: Mar 30th, 2008, 8:39pm »
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Jamey - Check out post #14 on this thread.
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Re: Intimacy Question
« Reply #42 on: Mar 30th, 2008, 8:41pm »
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OK,  
 
First off I never said I understood these CH's.  I only know what they do to me.  
 
Secondly,  I understand where my husband was coming from, but when you have been with someone for 16yrs, through many good times and many bad times, you need to be able to have a certain degree of trust in that person.  
 
I didn't expect my husband to say ok, that is awful, I totally understand everything.  I only expected a little patience and understanding from him.  I also hoped he would try to find out some information about them, maybe ask some questions.  
 
I know that that is the first thing I do when someone close to me has been diagnosed with something I know nothing about, I ask what is it, how do they treat it, what can I do to help.  Even if I think the person is full of it, I try to find out more about the ailment before I turn away,
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Re: Intimacy Question
« Reply #43 on: Mar 30th, 2008, 8:41pm »
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OK,  
 
First off I never said I understood these CH's.  I only know what they do to me.  
 
Secondly,  I understand where my husband was coming from, but when you have been with someone for 16yrs, through many good times and many bad times, you need to be able to have a certain degree of trust in that person.  
 
I didn't expect my husband to say ok, that is awful, I totally understand everything.  I only expected a little patience and understanding from him.  I also hoped he would try to find out some information about them, maybe ask some questions.  
 
I know that that is the first thing I do when someone close to me has been diagnosed with something I know nothing about, I ask what is it, how do they treat it, what can I do to help.  Even if I think the person is full of it, I try to find out more about the ailment before I turn away.
 
Kitty
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Re: Intimacy Question
« Reply #44 on: Mar 30th, 2008, 9:37pm »
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Bill - Awesome as usual.
Is that the only letter like it or is there a different one somewhere?  
I printed a letter off to give to my boss years ago but I don't remember it being that one.  
 
Kitty - Sorry if you took offense to my reply to your question, none was intended. My intention was to give you a perspective you may not have had in order to help you the best way possible.
 
I understand where you are coming from, but I also can see where your husband may be coming from. I didn't mean to imply you should know everything about CH - my point was that no one does and no one ever will - that is a big part of your problem.
 
Again, it is not my place to give relationship advice and I wasn't taking sides. You asked a question about intimacy and I just wanted you to be aware of what I saw as a potential situation.
 
To put it simply I can see ONE side of this no one has mentioned and that side looks like this:
 
You haven't had sex with your husband in a long time - looks like months. You tell him it is because you either have had a "headache" or are tired from having a "headache". Isn't having a headache the classic lie when someone doesn't want to have sex, similarly to a girl telling a guy she can't go on a date because she is washing her hair when the truth is she just doesn't ant to go out with him?
 
I can see where he might think you are either 1) BS'ing him or 2) are being truthful but assumes you don't care about him enough to ignore a simple headache to get intimate with him. I am sure the bottom line to him is that you are chosing not to be intimate with him, for whatever reason, and after 16 years of marrige I am sure he is confused.
 
I am not judging or blaming you (or him for that matter). There is no "right" or "wrong".  I think it would be a shame to throw it all away over stupid CH's.  
 
That being said I think if he doesn't understand what you are going through you will never get the understanding you seek. You'll never get there though if 1) he thinks you are lying about it (remember you are giving him the classic line about not wanting to have sex) or 2) he can't understand anything about CH.  
 
I am sure that blaming him won't help you at all though. It never helps except if all you want out of the situation is to make yourself feel better.  
 
Maybe my point is dead wrong and this guy is just a dick and you should file divorce papers ASAP. But if he was, you wouldn't have stayed married to him for 16 years, right?
 
So this is something almost every clusterhead has to deal with on some level and it is up to you to find a way to deal with it. Sorry, I wish I had better news. I bet your husband is no more a dick than my boss, some of my friends, and some of my family members, all who like/love me. Sounds like this could be leading to serious marrige trouble for you. As much fun as it would be to rip your hubby on here in a new and creative way, I respect your request for an answer enough to give you what I see as a different side, and a straight shot at it, with the best hopes to help you through your tough time.
 
If I told everyone in my life you didn't understand my Ch to piss off, I'd be a lot lonelier when I am not in cycle. If you really feel this impass is worth ending 16 year of marrige, by all means, go for it. Please do not make any dramtic life changing choices if you are exhausted from fighting the demon though. Wait until your head clears first. To me, the more I alter my life the more the demon wins.......
 
Again good luck to you and I am praying your Pain Free time returns quickly!!!!!!!
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Re: Intimacy Question
« Reply #45 on: Mar 30th, 2008, 9:40pm »
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There might be other letters, but that's the only one I know of and the only one I've ever used.
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Re: Intimacy Question
« Reply #46 on: Mar 30th, 2008, 11:54pm »
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Ok,
 
I see your point, but how can anyone who has been married to someone for 16 years watch them literally screaming, banging there head into walls, and crying for 5 hours and then say "wanna go to @#%#"?  
 
My husband and I have been together long enough to know when the other one is full of it.  I didn't just have the occasional attack, I was having them many times a day for months.  I was told by a member here on this site that the medication my Dr. had prescribed to help me with the pain of these attacks might actually be prolonging them.  I stopped taking the pills, and started O2 instead.  That has helped me so much.  I truly believe that the pills were putting me in more pain, more often than without them.  
 
I still have the attacks, but they can usually be knocked out by the O2.  They are not nearly as painful either.  
 
I just posted this topic to get advice on how to talk to my husband about something that I don't know much about  I could only tell him that the CH's hurt like a $%&#@ and that it made my whole side of my face hurt.  I was tired all the time.
 
Here was my average day when I posted this topic:
 
6:30am--  Get up and make sure the kids get off to school and hubby is off to work.  
 
7:30am--  Kids are off to school, and hubby is at work.  Now I can sit and rock back and forth, talk a walk, etc to make the pain go away.
 
8:30am--  Still in pain, nothing seems to help, gotta ride it out again.
 
10:30am--  Pain finally going away.  Time to go get the mail, and run any errands I have.
 
11:30am--  The pain is starting again.  Not too bad this time, walking in cold helps after about an hour.
 
1:00pm--  Time to eat something while I can.  Sit down on couch or at computer and relax
 
2:30pm--  Another hit, hope it is gone before the kids get home.
 
3:30pm--  Kids are home, pain is getting very bad.  Want to scream but I can't, don't want kids to see that.
 
4:00pm--  Pain going going gone.
 
5:00pm-- Hubby will be home soon, gotta get supper going.
 
6:00pm--  Supper on table.  Can't eat right now cause even my jaw is hurting now.
 
7:00pm--  Kids are asking for help with homework.  Hubby doesn't know the answers, so they come to mom.  Jaw doesn't hurt anymore, but pain is lingering in temple.
 
8:00pm--  Kids are getting ready for bed now,  homework completed.  Pain is gone once again for now.  Time to go relax with hubby in living room.
 
9:00pm--  Kids in bed, no pain yet.
 
11:00pm--  Time for bed.  Fall right asleep.
 
1:00am--  Woke up with a doozy.  Go outside to garage and scream so I don't wake anybody up.  Sit in corner and rock back and forth.  Get very cold and go back inside.  Sit on couch and cry, rocking back and forth.  Can't sit anymore, so I pace around room.  
 
3:30am--  Pain gone.  Totally exhausted I go back to bed
 
6:00am--  Alarm wakes me up.  Still tired, and pain is there, but not too bad yet.  Time to get up and doo it all again.
 
The above I copied out of a diary I was asked to keep by my Doctor to document when the attacks happened, and what I did/was doing.
 
That was the way I went for months.  I was just too tired to think about anything, let alone tell someone else anything other than I am soo tired, and I hurt all the time.  
 
My behavior was noticed by my husband.  He said I looked like someone hit my in the eyes.  Dark circles under them all the time.  He knew there was something wrong, he even asked if it could be a tumor.  When the CT scan came out normal and the doctor told me I had clusterheadaches, he listened to her say that they were extremely painful, and that there was no cure for them.  
 
So how could he have possible thought it was "just an excuse"?  We don't have the greatest marriage of all, but we have always been there for each other, until this.  Maybe I was just hurt and shocked by his attitude toward the whole thing, and came here for support.  But then again that is why we are all here right?  For support and whatever answers we can find here.
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Re: Intimacy Question
« Reply #47 on: Mar 31st, 2008, 12:02am »
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I forgot to add that I took no offense to what was said.  I just don't want you to think that I am just "using the CH to avoid intimacy".  I think there is more to that than sex, there is the holding each other while watching a movie, going somewhere without the kids, etc.  My husband and I are working through this now.  Like I said before, I just needed a little help in talking to him about the whole thing.  I am getting control of these CH's now.  O2 has helped me so much.  I am not as tired anymore, and although I have yet to have a totally pain free day, I am pain-free more than I am in pain now.  
 
I don't know how the other post got on there twice, but it was only supposed to be there once.  Sorry bout the duplicate.
 
Kitty
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Re: Intimacy Question
« Reply #48 on: Mar 31st, 2008, 2:23am »
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Hi Kitty
 
Firstly I would like to send you a great big hug. I am a supporter for my husband who has CH and I am so sorry to hear you are going through a hard cycle and having extra problems to deal with too. I would like to offer you my support, please feel free to email or PM me anytime.
 
Secondly I would like to say I am amazed at how functional you remain despite getting hit hard daily for months. You sure are one strong lady. My hat off to you.
 
But then I couldnt help but thinking your determination to keep the household going may have caused your husband to misunderstand you. I can see from your diary that since he was away during most of the day, he wouldnt see how often you were hit and how bad they were during the day. Then at night you went out to the garage so again he had no idea you didnt get enough sleep.  
 
As you managed to keep house and home going, including helping the kids with homework, your husband may think that the headaches " cant be that bad ". His reasoning might have been " if she can do all that, why cant she be intimate ? ".  
 
Us women tend to be like that, we sacrifice ourselves and put everything else before us, even when it comes to health. A woman tends to grit her teeth and push through housework and caring for the children even when she really cant cope with it all.
 
I believe understanding and good communication is key here. You need to let your husband know how HARD it has been for you, that it takes literally ALL of your energy to keep up with daily living, and you are truly too exhausted for anything else for now.
 
Good luck and painfree wishes to you.
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Re: Intimacy Question
« Reply #49 on: Mar 31st, 2008, 2:35am »
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Kitty,
 
did you show your ch diary to your husband? At least the same day schedule you showed us? If not yet, do so, because it shows very clearly what you're going through.
 
Wishing you PF time,
Sanna
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