Hi

My fiance, who in the past I called my financial rock.  I guess has had it with everything. He has tried, I guess in his own way, to be supportive about my being sick. I directed him to this site last week & he has yet to take a look & not for a lack of time.

This morning he told me I "should just get a job & have my clusters there". What an not a very nice person. I was soooooo pissed & refused to fight with him (stress being a huge trigger 4 me), I went into the bathroom until he left 4 work.

I am so sick & tired of being sick & tired. I feel like I am just stuck in the corner of a room with no escape. How could anyone think that someone would WANT to have this fucking disease??????????????????
I wish that he could have it just for 1 day.

How do you handle/be with, someone like this??? I feel like packing it in, up whatever. And then what?? Go.........where??

Deb :'(

Couselling. You're not even married yet and you're getting zero support from him. You need to find out soon if he's going to continue to offer you zero support so you can get out now. A couple's therapist will help you get to the root of that.

You need to find out if he's in love with you or with someone he wants you to be.

While CH does NOT define who I am, face it, it's a huge part of my life. If my wife treated me like that, I would not have been able to stay married to her. He must be made to understand for a large percentage of us, CH is here to stay. If he wants you, it's a package deal, you AND your CH.

I'm with Brew. A third party could go a long way to opening eyes. Wishing you luck. Having someone who supports me through CH is the only thing that's gotten me through some of the dark times. :'(

Joe

Thanks Guys, Ch.com has been my only shoulder. Maybe thats why I find myself coming back more & more.
Not for nothing, but I can't even get him to come to the site. Getting counseling would b a miracle.

Deb

My wife doesn't come on this site either.  She doesn't really get the bond that is created between us.  However that doesn't stop her from being a great supporter.  I couldn't get through this without her.

It sounds like he either a) doesn't want to understand or b) hasn't heard the message in terms he can internalize.

Brew's advice is good.  A third party could help with what I see as a communication problem.

Once he truly understands what is going on here, he has a decision to make.  And so do you.

Good luck...

-Dennis-

wrote on Feb 20^th, 2009 at 11:16am:

Hi My fiance, who in the past I called my financial rock.  I guess has had it with everything. He has tried, I guess in his own way, to be supportive about my being sick. I directed him to this site last week & he has yet to take a look & not for a lack of time. This morning he told me I "should just get a job & have my clusters there". What an not a very nice person. I was soooooo pissed & refused to fight with him (stress being a huge trigger 4 me), I went into the bathroom until he left 4 work. I am so sick & tired of being sick & tired. I feel like I am just stuck in the corner of a room with no escape. How could anyone think that someone would WANT to have this fucking disease?????????????????? I wish that he could have it just for 1 day. How do you handle/be with, someone like this??? I feel like packing it in, up whatever. And then what?? Go.........where?? Deb :'(

What if you had some other condition? Would he be that unsupportive? When you say he's tried in his own way to be supportive - how? They might be tough questions but when you love someone truly, you do what you must.  

It may be he's just scared of the whole situation since he's uninformed but if he refuses to educate himself - you might want to think about if you're really willing to put up with that permanently.  Why don't you print out some stuff for him to read, if you haven't already? Try this:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Leave it for him where he will find it, it may be a start at least.  

Pepp

Quote:

You need to find out if he's in love with you or with someone he wants you to be.

Brew nailed it. That needs to be rectified before any thought of marriage or long term relationship happens.

And maybe a visit together to your Neuro will go a ways toward explaining the reality of CH to him.

There are plenty of hypochondriacs in the world and while it's awful to ponder, he may think you are exaggerating the scope of this evil beast.

I like the suggestion of printing out information from this and other sites.  If he won't come here for the information, perhaps the information needs to go to him.

Best of luck.

Deb,

I'm sorry that you are having a rough time.  It is hard enough to deal with CH without having to deal with comments like that!  

Is he like this all the time or is it possible that he was just having an off day?  CH takes a toll on supporters too.  I sometimes wonder what kind of supporter I would be if the roles were reversed at my house.

Just trying to see both sides... I sometimes say things I don't mean.  Maybe he did too.

Jeannie

There is nothing worse than living the rest of your life with someone who doesnt understand CH , or even believe in them. My dear sweet hubby was nice enough to wake up last nite during my hit and get me a cold rag after i vomited, he went back to sleep immediately while i rocked back and forth moaning. My 10 year old son has CH. I am looking forward to him coming home from school today for a big hug. He and I "Get each other" on a level nobody will ever be able to understand.

Before I was finaly properly Dx in early March of 2004,  I was involved with someone.  We had viewed and selected a home that we were going to put an offer on contingent on the sale of the condo he owned and was renting out.  He was going to move here, transfer his business here.  

Then in March, the beast morphed on me.  He had been aware of the the night time attacks, and me eating ibuprofin like candy during the day for what I know now were shadows, but that spring, I'd quit smoking and then the attacks were coming at night and during the day.  Anywhere from 3-5 attacks at first, then up to 6...then up to 8.

First saw a GP and was started on Relpax and neurontin.  Nothing.  The boyfriend was insisting on an MRI saying he thought I was having annurisms.  Cutting to the chase of the matter, finally the GP stumbled across CH information and called me at home on a Sunday night to tell me he thinks he figured this out.

Off to the Headache specialist at the hospital who confirmed CH after the MRI.  I found this site when he first mentioned it, and read all I could before seeing the specialist.  

The boyfriend, when learning that this was NOT an anurisum, nor anything else organically wrong started to tell me it was all my imagination.  

So while working with the secialist to try to get the CH under some modicum of control, 2 rounds of prednisone, imitrex injections, anti depressants, tomomax ect...the boyfriend turned to me one ay and says that I'm no longer the Pegg he knew and loved.  I'd changed, and he could no longer be with me.  He never accepted the doctors Dx, and he was angry because I wouldn't admit that this was just a temporary afliction and that a few days sleeping it off under high doses of serequil would put everything right again.

I even gave permission for him to talk to the specialist himself to no avail.  I was taking the word of a doctor, and advice from some "stangers on some website" over him.

Well...I'm still single if that gives you any indication of what I thought of that whole mess.  

Yes it hurt for quite some time.  But I came to realize that I was better off supporting myself and what I knew, than to have someone in my life who was unsupportive and undermining me every step of the way.  

I'd changed?  Damn straight I'd changed.  I learned there was no cure for what I had and there is a process of coming to acceptance with that.  I was heavily medicated and dopymax was stealing IQ points faster than I could blink.  I was tired, at the edge of my last nerve.  Frustration and anxiety was running rampant and I was off work with no income at all under doc's orders.

Damn tootin' I'd changed.  And for the better...without him.

I'm with Pepp on this.  Those questions need answers for you to continue.  

My ex-husband was very mean to me when we first got married and he first went through a cycle with me.  That's until my chiropractor at the time told him "I have another patient that sufffers from CH, and her husband needs to put her in one of those crazy suits to render her arms useless, because the pain is so horrible she wants to hurt herself".  He got the message at that point that I just wasn't suffering from a tension headache.  

When I met my husband now and we had just started dating I sat together with him in front of the computer to make him well-informed of what I suffered from because I told him that CH comes with me, unfortunately.  

He was pretty scared the first time he saw me get hit, but somehow he stuck around anyway and I'm so proud to say he's my best supporter.  And I say i'm proud because I know it is not easy being a supporter. One supporter told me once that the feeling can best be described as "gut-wrenching" when watching her husband go through a CH.  

I hope it works out for you.  I would definitely print the "colleage letter" as Pepp mentioned and have him read it.  It's at least a beginning...maybe he may want to learn more after reading that.

Hang in there and keep us posted on how you're doing... [smiley=hug.gif]

Langa

Quote:

This morning he told me I "should just get a job & have my clusters there".

 This quote above...to me says "RED FLAG   RED FLAG   RED FLAG !!!

CH or not, this guy doesn't think very highly of you, and his attitude will spill over to other parts of your life together.  

Brew wrote on Feb 20^th, 2009 at 11:22am:

Couselling. You're not even married yet and you're getting zero support from him. You need to find out soon if he's going to continue to offer you zero support so you can get out now. A couple's therapist will help you get to the root of that. You need to find out if he's in love with you or with someone he wants you to be.

Good advice - it could be caregiver burnout, which can possibly be dealt with, or it could be a sign that your relationship is no longer healthy.  You need to find out which.

i am with a few of the posters in wondering if he has been a good supporter for you but is burning out OR is the CH you too much for him to handle.  I have often said I would rather have CH than my wife have it, I think it is harder on supporters than those of us who have the headaches.

Your comment when you said you wish he could have Ch for 1 day says a lot too.  You are justifiably angry but that is even a bit too far for a loving relationship.  If counseling isn't an option and he doesnt want to learn more, you guys need to learn if you really love each other or not.  If you do, counseling is a smart option.  If not, I think it's time to move on.

Great post Fram!

Jeannie

FramCire wrote on Feb 20^th, 2009 at 2:09pm:

i am with a few of the posters in wondering if he has been a good supporter for you but is burning out OR is the CH you too much for him to handle.  I have often said I would rather have CH than my wife have it, I think it is harder on supporters than those of us who have the headaches. Your comment when you said you wish he could have Ch for 1 day says a lot too.  You are justifiably angry but that is even a bit too far for a loving relationship.  If counseling isn't an option and he doesnt want to learn more, you guys need to learn if you really love each other or not.  If you do, counseling is a smart option.  If not, I think it's time to move on.

I agree.  Very good point Fram.  I would not wish this on my worst enemy let alone someone I truely loved.

-P.

Really sorry about the lack of support.  Having CH is tough enough but dealing with it all alone is really unfortunate.....especially when living with someone who is supposed to love and care about you.  It has to hurt your feelings.  :'(

I've been a supporter for my husband Blake for years.  Sure, it's hard sometimes but not nearly as hard as he has it.  If you could get him here there is support for the supporters too.

I guess the next step would be trying to figure out why is isn't supporting you.  Is it the CH that has him burned out or something else.  That's something you two have to work out.

Remember.....we're here 24/7 and always ready with a shoulder, kind word, understanding and advice.

Good luck, Sweetie...
Jackie

The hardest thing for a supporter to be a good supporter is to be able to UNDERSTAND what it is like for a CHer. A supporter can never actually feel the physical and emotional pain and the mental exhaustion a sufferer goes through but he or she can understand how terrible it is.

CH is such a rare condition that most people have never seen it, never heard of it and the degree of pain is so out of the norm that it is almost impossible for the average person to grasp what it is like.

That is why even doctors seem to fail to be compassionate and they are supposed to be knowledgeable.

It is much easier for the average person to be supportive of other common medical pain like a broken bone or even cancer, because the degree of pain is public knowledge.  

The second difficulty is how much an individual supporter can take. Some can take more and some can only take so much. Supporters themselves need to be supported, not by the CHer while in cycle, but by others, such as friends and relative and even maybe a counsellor. Supporters can certainly get burnt out if they dont look after themselves.

CHers have different styles of coping too. I know some clusterheads who would hide their hits and not share the full details of their condition with their loved ones and I know others ( like my late husband ) who look to their supporters for being their rock. As in any relationship, if one party's need is not met by the other, its a recipe for disaster, not just in relation to CH but everything.

I am really sorry to hear that your fiancee said something to you that hurt but when you feel a bit calmer, please consider this : you have all the people and support of this site, does your fiancee have any ? Do you know if he has friends or relatives whom he can talk to ?  I understand that you have asked him to come to this site, but he might have thought that if he comes here, all he will get is criticism about how unsupportive he has been to you. He might be scared that he wont have a chance to express his feelings. No one wants to go anywhere they feel they might not get welcomed. Maybe if you ask him to come talk to other supporters who can understand how hard it is and who can help him cope better with the whole situation, will be more enticing.

Unfortunately, we cant force anyone into understanding, caring or loving us. It has to come from their hearts. However, maybe if we show understanding first and make it easier for others to care for us, things will be better for everyone.

Jackie wrote on Feb 20^th, 2009 at 3:28pm:

Remember.....we're here 24/7 and always ready with a shoulder, kind word, understanding and advice.

I'm sorry you are struggling!  I pray that one day he will understand that you don't have a choice in this matter, and that he will soon be understanding of you and the situation.  I think if he actually stopped thinking about himself and came here and read some of the stories and testimonies, it would change his outlook.

Just my  [smiley=twocents.gif]

wrote on Feb 20^th, 2009 at 3:57pm:

A supporter can never actually feel the physical and emotional pain and the mental exhaustion a sufferer goes through but he or she can understand how terrible it is.

I'll agree that as a supporter I've never felt the physical pain.  

However,  I've felt the emotional pain in spades and the mental exhaustion too.

Deborah,
There are a bunch of long time supporters here.  I'm sure that one of us would be more than happy to speak directly with him.  If that's an option or you think it might help, send me a PM and we'll see what we can do.  OUCH also has a Family Services Team that works directly with individuals.  Check out the OUCH website button on the left.

Jackie

Thank You annsie. Maybe you hit the nail on the head. He really does'nt have anyone to share all this crapola with. I have you guys & 2 close friends, who are very understanding.

Some of you guys make it seem so cut and dry. I've been in this relationship for 12 years. I have a lot invested. I love him with all my heart.And I know he loves me because he has put up me for so long.LOL

He just called & said how sorry he is for the things he said & that he knows Im in pain & will try 2B more understanding. WOW. Im giving him that letter tonight. On a plate. For dinner.

We all have our own charater & opinions and those of u who had a problem with me saying that" I wish he had it for one day", Im sorry I still feel that way. If thats what it took for someone to finally understand your pain, your really telling me that for a couple hours of life, to change your relationship forever, you would'nt do it???
I find that hard to believe. I actually said it to him on the phone, earlier today & you know what he said?? At least I'd be @ work.

Thanks for all your input. I think were in for a long, long talk tonight.

Deb :o

wrote on Feb 20^th, 2009 at 4:47pm:

Thank You annsie. Maybe you hit the nail on the head. He really does'nt have anyone to share all this crapola with. I have you guys & 2 close friends, who are very understanding. Some of you guys make it seem so cut and dry. I've been in this relationship for 12 years. I have a lot invested. I love him with all my heart.And I know he loves me because he has put up me for so long.LOL He just called & said how sorry he is for the things he said & that he knows Im in pain & will try 2B more understanding. WOW. Im giving him that letter tonight. On a plate. For dinner. We all have our own charater & opinions and those of u who had a problem with me saying that" I wish he had it for one day", Im sorry I still feel that way. If thats what it took for someone to finally understand your pain, your really telling me that for a couple hours of life, to change your relationship forever, you would'nt do it??? I find that hard to believe. I actually said it to him on the phone, earlier today & you know what he said?? At least I'd be @ work. Thanks for all your input. I think were in for a long, long talk tonight. Deb :o

Deb,

I hate to disagree here, so take this as just a loving dissenting opinion.  I pray my wife and children can never understand the pain I go through.  In fact I often try to lie to my wife about the severity of the pain to keep her from having to see me in pain but she can see it in my face so it is never effective.  I do apologize to her because being less then completely honest is not acceptable, but as I said, I do NOT want her to be able to understand.

When my wife was in labor with my first child, I was horrified at the pain she was in and I felt completely helpless to help her.  I even begged her to get an epidural.  Honestly, the supporters here severely UNDERESTIMATE the mental anguish they go through.  I will say it a million times, my wife suffers more with my CH than I do IM HO.

Anyway, he doesnt need to feel the pain to understand how bad it is.  He just needs to have a way to relate to it.  My wife has heard woman say it is more painful than labor, and since she has been in the delivery room enough times, she has a very good idea.

Anyway, his phone call is a good start.  make sure you present him with that letter in a loving way so that it does not become confrontational, since he already apologized.

Anyway, let us know what we can all do to help.  Many have offered specifics, I will be praying for you that your support system will continue to strengthen.

You should strongly consider taking Jackie up on her wise words to come here for your support.

After taking a quick scan of CH.com's Support Board's first page, it's very telling.

Of the 24 or so threads started by supporters, all but one were by women.  That's not to say that there aren't a few men who visit here of their own volition to help their loved ones, but the ratio doesn't nearly reflect the ratio of men to women sufferers.

The women supporters here are great, so regardless of how your relationship turns out, you can count on regular support here.

wrote on Feb 20^th, 2009 at 4:47pm:

Im giving him that letter tonight. On a plate. For dinner.

Food for thought - sorry for the pun!
Glad he's apologized already so he will be more open.  Use the opportunity to point out that there are supporters who know what he's going through on this site, as well as what Jackie mentioned.  A good phone call from someone wonderful like that could be a key.

I hope its his fear talking and it's not a lack of love.  People say things they don't mean when angry or scared, which could apply to the both of you.

Good luck tonight ~  [smiley=thumbsup.gif]
Pepp

wrote on Feb 20^th, 2009 at 4:47pm:

If thats what it took for someone to finally understand your pain, your really telling me that for a couple hours of life, to change your relationship forever, you would'nt do it??? I find that hard to believe. I actually said it to him on the phone, earlier today & you know what he said?? At least I'd be @ work. Deb :o

2 things:  Why do you feel such a need to make him understand exactly what you are feeling?  He can't.  We can't.  I suffer from clusters and i cannot imagine your pain.  We aren't you.

If you say clusters are debilitating and he says he would be at work if he had clusters, it shows a lack of trust.  He does not trust you, and he does not believe you when you say clusters are overwhelming.  

Maybe you should kick him in the balls, and when he is doubled over in pain, tell him that if you got kicked in the balls you would be mowing the lawn.  
He might then realize he has no idea what he is talking about, and sounds childish.

Quote:

At least I'd be @ work.

Quote:

"should just get a job & have my clusters there".

Is the lack of a job the elephant in the room?

Maybe the ch is just the icing on the cake for him (or, rather the straw that broke the camels' back?).  I'm not defending him for what he said, it was hurtful and unwarranted.  That being said, I gather that you've pretty much been disabled for well over a year?  Knee surgery and you also have back and neck pain that may be enough to warrant surgery.  It may be that he's becoming desensitized to you being in pain and doesn't realize the depth of pain clusters can cause.  Maybe you need to tell him exactly how you are feeling (DO NOT accuse him of doing something wrong {as in, you did so and so and made me feel so and so,} that will only make him defensive and won't resolve anything. Keep the discussion to *I* feel <insert whatever> here.

And remember, the hardest lesson of all (and most people never really master it), noone ever *makes* you feel any certain way, you choose to react to whatever was said or done.

And I'm going to agree with Jackie about feeling the emotional and mental pain.  It's hell to watch someone you love and care about go through unmitigated hell with pain and there's not a damned thing you can do about it.  We/I feel so helpless about what's going on, and we/I can't fix it.

Supporter to not one but two people with very different problems.

Not to be crude... but if he has not gotten it yet... chances are "He ain't gonna get it."... apply for disability or go on welfare or both... if you're sticking around for the financial support... there ain't enough money in the world that warrants staying with such a cold uncaring person IMHO... it does your soul, and emotional well being way to much harm.

I know you haven't asked for advice but... at the risk of being an a$$hole I'll give it anyway... get rid of the jerk... he doesn't deserve you and you don't deserve the abuse.

with warm regards,
Tony

Hi Deb and welcome. I cannot add too much more than what all the others had already said. I will offer to you though, a shoulder any time and an ear when you need to talk or vent.

We are all in this together and this family is the best thing to ever happen to me and my wife Angie and it will be your new home too. PF wishes to you. Hang in there.

Welcome.

  Barry :)

Beemonie you made me laugh my ass off. In a nutshell, I think your  the only one who make a parallel. Thanks for making me laugh.I mean LAUGH !!!. [smiley=crackup.gif] [smiley=crackup.gif]

Any how, I literally put the "letter" on his dinner plate and asked him to read it. He did. When he was through he said " so just stay away from you"? Then we slow danced in the living room . Go figure. You men R so damned had to figure out. OK after jeopardy it's talkie time wish me luck.

Deb

I hope your talk goes well.  

Always know that you have people here who are willing to listen and support you.   Even though we sometimes (often) disagree, we are still family and are here for one another.  Like it or not, you are one of us now!

Jeannie

Deb, hi  and welcome.

I read this earlier. I re-read it, and read it again, and still struggle with a response.

My husband is one that "doesn't get it" and sometimes I wonder which stresses me more-  the onset of a new cycle or having to deal with his reaction.

I think he finally got a clue how to deal with my ch once he met a bunch of clusterheads (here at my house) and he saw people getting hit and the fact that noone freaked out over it, and we helped each other calmly and caringly.  He'd never BEEN THAT to me, so to see others be supportive, it was foreign and a bit overwhelming for him. Now at least he is not so quick to accuse me of not doing enough to stop the attacks.

I can't say "stay" and things will get better, chances are likely that your fiance will remain one who "doesn't get it" and you'll be facing the same pre-cycle stress I do.

I guess what I want you to know is regardless of whether this guy you're with is supportive or not, you DO have a wonderful support system here, with us.  These people here have pulled me through some tough cycles, new treatments, the depression, the anger, and shared the joy of cycle's end.  And I got through quite well without my partner's help or support.

The only one who can make the relationship call is you. But regardless of where you end up,  you still have all of us, at any time, day or night.

A special prayer for you, my dear new sister- for peace, guidance, strength, understanding, and wisdom.

Welcome.

Jen

As bad as the beast is, trying to get people to understand that this has no resemblance to what people think of as a headache, is nearly as bad. It can't be done of course, they can come here for a looksee....if for no other reason than to learn that you aren't lying about this horror.

I don't get it.

Charlie

Quote:

Beemonie you made me laugh my ass off.

Our monee man sure does have a way with words doesn't he Deb?  

  I wouldn't want him any other way.  

these posts piss me off the most.  Tell him how many grown men and tough ass broads on this site are brought to their knees in pain.  It is possible he thinks you are exagerating but he needs to know that fact.

Now forget about him.  What you doing for meds?  Not sure if you posted this info any where.  Are you using O2

Deb,

You said you've been in this relationship for 12 years and you love him dearly and that he loves you. Guess I feel differently than some of the others here.

I've gone thru years of chronic pain (since 97) and have had NO supporters except this bunch here on ch.com. My husband had a massive stroke a few months before I went chronic, so he never understood ANYONE could be suffereing but him. He was verbally abusive if I even showed signs of CH (even to the point of calling and cussing out my neuro a few times - to get me well so I could take care of him). I learned to deal with it. But I had to change my attitude and accept that he wasn't going to support me and that I was on my own with the CH. AFter I did that we got along a lot better. But that's what you do when you love a person - you accept what you can't change.

For eight years before his death, I watched him deterioate and suffer and it hurts to watch someone you love hurt and not be able to do anything about it. Being a supporter is not easy - trust me and it takes some getting used to. Give him some time and have a little patience. You hurt, but he's hurting to watching you hurt.

Don't lose communications ... And when you're not hurting, don't forget to give him a lot of hugs for just being there.

Hugs BD

Hi Debs,

Hoping your chat has gone ok. Welcome to ch.com. My supporter also doesn't get what this place is about, but that's fine because this is my place to come and rant and rave away from this. I figure, he puts up with quite enough being my supporter (and my fiance ;D) and having the folks here who get what it's all about to vent to if needs be is a lifesaver for both me and him. He doesn't have to take ALL the flak now, just some of it!!!  ;)

My supporter and I have a plan. Energy drink/ice pack/coffee/o2 all prepared and then I can take what combo I want and leave the rest. Then (if I haven't made it there) he'll take me to the bedroom and either wait it out (at a safe distance!) with me or leave me to it. Most of the time, I don't know if he's there or not and I think the decision as to whether he stays or not depends entirely on him - can he face seeing it or not. It may be a good idea to do the same with your other half. That way, he knows you're trying to deal with it too, instead of just getting your ass kicked and waiting it out.

Our supporters have to be tough and they too need a rest. But you shouldn't have to battle with someone who loves you when suffering with something like this.

Em
x

I am glad you got so many wise ideas from the board here.  There probably isn't alot more I can tell you except make him come here.  This website has been a God send to our family and helps us through some terrible CH cycles... God bless and hope that you find some comfort in what you read here.

love to you
Ree
Supporterer for longer than I will admit!

I WANT TO THANK  all of you who replied. It has certaintly given me a broad spectrum of the lives of your supporters/non supporters. Some of U have made me laugh my ass off. Some have really hit home, most. But some who told me to RUN, well I should have been more clear in the facts of our relationship, to begin with. Sorry about that .You know what UR pissed & no one is feeling you , you just come out with it & hit POST.

Since giving him the letter, he has show a better understanding of this
damned thing. Not total understanding, which I can not expect (selfish of me)But, maybe in time he will. Hell it's taken me months to figure out myself.

Thanks Again- Deb [smiley=thumb.gif]

Hey Deb...

Sorry to hear that the beast is slowly tearing your head open with his vile claws and is pouring salt into the open wound before sewing it back up with a white hot, dull, rusty nail.  Welcome to the asylum.

I have been getting attacks for about as long as I can remember, but I didn't get a Dx until a couple few years ago... My supporter at the time never understood, and never really even tried.  I found this place and finally found out what having supporters was like.  I tried numerous times to convice her to visit the site and talk to other supporters, but that was always met with, "Maybe tomorrow," or "I'm busy," then eventually, "I don't need to talk to your friends."  

We argued constantly about CH, missing time at work, the outtings that would get interrupted, and, of course, the time I spent at CH.com talking to the only ppl I knew who would understand what I was going through.  The last few years that we were together, I figured out it was better for the relationship to just hide my attacks and suffer in silence.  Unfortunately, all it did was make my last years with her a living hell.  We still fought all the time, but at least I didn't have to hear everyday that I should just get over it and stop using CH as a crutch.

She ended up leaving me a few years ago.  Now I'm engaged to a wonderful woman.  She has clusters too, so she more than understands what I go through.  The bad thing is... Having to see someone I love going through the pain of CH breaks my heart every time she gets an attack.  I wish there was a way I could take them away from her, so she wouldn't have to worry about them anymore.  It's bad to experience this pain physically... but it's so much harder to see a loved one living with it.

PFDAN............................................ Azrael's Kiss

To the other old-timers here.  Doesn't this style of writing sound VERY familiar?    :)

 
Quote:

Sorry to hear that the beast is slowly tearing your head open with his vile claws and is pouring salt into the open wound before sewing it back up with a white hot, dull, rusty nail.  Welcome to the asylum.

O.K. Azarel...fess up.  You've been here a while, haven't you?  and under a different name.

If I am correct....I'm so glad to see you back.  If I'm not correct, then you have no idea of what I'm talking about and probably think I've lost my marbles, so I apologize in advance.   ;D

Linda

Linda...er, thought he was outed a long time ago.. definitely Kenn.. formerly known as Drk Angel.  Lots of clues in his profile if you look.

Yep Dark Angel it was.  Don't remember that he was "outed" as you say.  I also don't recall the name Kenn.  The only thing that I did recognize was that distinctive style of writing.


Sorry Deb.  Didn't mean to hijack.

I don't want to make waves, but I have no problem with you wanting your man to experience the pain for himself, especially after failing to get him to understand any other way.  The point is moot, though, since there's no way to pull off that hat trick.  But it's not about wanting him to feel pain, it's about wanting him to understand what you go through.  (On the flip side, how is kicking him in the tender vittles ok?   ;D )

I have to say that I understand how frustrating this is for you.  My fiance is still going through an adjustment period, too (I just got diagnosed this past October.)  I think they, as supporters, have to go through the same steps of acceptance of this disease as we do, to some extent, and perhaps he is still wavering in the "anger" and "disbelief" departments.

My guy is getting a lot better, and I know he loves me, but we had some rough days a few months ago when he was still learning about CH and trying to define his role in this drama, as well as learning what to expect from me as a partner.  He said some pretty ugly things a few times.  ::)  I think you have to evaluate these incidents in light of his overall character and against the other 12 years of his behavior.

And I like what someone said about the elephant in the room...that came up with my guy, too;  you need to have a frank talk with him about all of the non-CH things are are upsetting each of you and get clear on them, because even without CH on your back there are things that can tear a relationship apart.

-Paige

Peppermint wrote on Feb 25^th, 2009 at 2:37pm:

Lots of clues in his profile if you look.

Cats eyes?.....LOL :)