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        Supporter's Corner >> Supporter's Corner >> Thank all of you so much!!  And ... HELP agai
        
(Message started by: Lizbutt on Oct 30^th, 2003, 12:34pm)

Title: Thank all of you so much!! And ... HELP agai
Post by Lizbutt on Oct 30^th, 2003, 12:34pm

First of all I wanted to thank all of you for your words of wisdom. I had started to write and I don't remember why I didn't finish, but that was 5 days ago and things with Andrew have been great sinse then ... until last night... I swear, you guys are saints if you practice what you all preach on here! I'm pretty good for a little while at putting my needs aside for him to get through some of these days and then I just end up having ENOUGH.... I feel so "done" again today with everything...

I absolutely know that you guys know exactly what you are talking about and there is no doubt in my mind you have all been supporters for a really long time to these things, but HOW IN THE H*LL DO I DO THIS?!? I mentioned the Botox treatment last week with my fist post and I was looking at the treatment board to see if someone had experience with it, I only found one person who has had it done, and it didn't work for the clusters, only for the migraines. Well, Andrew decided this morning that he is going to do THAT before he schedules his MRI and before he consults ANYONE... Errrr! So I mentioned that he may want to schedule his MRI and see what the results are BEFORE he does the botox and then he started joking around with me and saying "remove the tumor and then do Botox..." I was not amused. I get so frustrated! I start questioning the headaches... "Does he really get THAT many?" "Do they really hurt THAT bad?" There are a lot of things in his past that make me ask a bunch of other questions! But right now I'm wondering if he really wants the Botox to help is headaches or get rid of his wrinkles... I know that is HORRIBLE of me and I don't know what to do, but I need to be honest with you guys so that you can help me. I'm going insane right now!!!

Last night was just a big, fat horrible night for me. When I was at his house yesterday, I mentioned that he smelled good, and then asked him what he was wearing because it didn't smell like his normal cologne. He said it was and that he had bought a new bottle. I joked about not maxing credit cards since he hasn't been working at all because of his headaches. Last night he accused me of lying about the way I brought up his cologne and that I had seen the full bottle and just brought it up the way I did - a maniputlation... GOD, this sounds so stupid when I get it black on white, but it is absolutely eating my lunch right now and I am angry about it!! Anyway, I feel completely insecure and that he doesn't trust me - which is totally hypocritical because I don't trust his motives with this Botox treatment... I AM GOING INSANE!!!!

I am so mad right now I don't know what to do! I want to come on here and talk to others that are having problems, but I know I have nothing to offer because I am so insane with it myself!! Ug, I'm going nuts!! I need help getting out of myself and being there for him... And just do it doesn't work for me.. I need some... I don't know step-by-step instructions?

I am totally down on myself thinking that I'm just not cut out to be a supporter to him because I don't like the way things are going right now, and I don't like not being trusted. I don't like not knowing if he's telling me the truth, and I don't like that what I am telling him right now, though it's the truth, is being mistaken as lies... What so I do about all of this?

Suzanne

PS Sorry I keep coming here and dumping, I just don't know where else to go for help with this!!

Title: Re: Thank all of you so much!! And ... HELP agai
Post by Jackie on Oct 30^th, 2003, 1:30pm

Hi Suzanne,
I've read your post twice.
You're asking for advice so I'm going to give you some....you may not like it all but I know no other way than just to tell you like it is...or to tell you the way I see it at least.....
When you are a supporter you must ALWAYS put yourself second when they are in cycle. A sufferer has more to deal with than we can imagine. First is the horrible pain..then there is the horror of not knowing when the next attack will come...so they are living in constant fear...then comes the sleep deprivation (imagine going weeks on end with only a few hours sleep and that is constantly being interruped with attacks)..then there is the depression (have you ever been depressed?)...that in itself if devastating...then there is the guilt they feel....and on & on it goes!
My husband doesn't always act like himself. I blame it on the pain and the medication. I do not take it personally. I do not blame him or make him feel guilty when things aren't just the way I would like to see them....hell, they aren't the way he would like to see them. It's not his fault!!! Clusterheads in cycle aren't themselves....to realize this just think about what they are going through. You need to forget about the 'little' things that don't really matter in the long run.
As a supporter you can be his greatest asset or his biggest liability. It's up to you. I'm sorry but your wants and needs have to come second for now.
Again....I'm not trying to be mean. I'm just telling you the way I see it. I may be wrong but that's my oinion and I'm sticking to it. It's worked in our house for many years and my Blake is chronic.

Good luck....
Jacks 8)

Title: Re: Thank all of you so much!! And ... HELP agai
Post by Margi on Oct 30^th, 2003, 1:40pm

I read your post twice too, trying to compose my reply in my head and not come off as a big meanie and sound uncaring to what YOU, as a supporter, are going through. But Jackie put it way better than I ever could.

And I quote: "As a supporter you can be his greatest asset or his biggest liability. It's up to you."

Truer words were never spoken. You do have to develop a turtle shell when it comes to taking things personally when your clusterhead is in cycle. If you don't, you won't be able to make it in this lifestyle. We simply can NOT imagine the levels of pain they reach and what that does to their psyches. We just have to accept them for who they are and what they live with. 99% of the clusterheads I know are absolutely sweethearts when they are not in pain.

Jackie - you ROCK. [smiley=headbanger.gif]

Title: Re: Thank all of you so much!! And ... HELP agai
Post by lapowers on Oct 30^th, 2003, 2:40pm

You gals give great advice!!!

Suzanne, I have been my husbands main supporter for the past 13 yrs. Believe you me it hasn't been easy. I was 29yrs old with a baby when it all began. There were many days I didn't think I could face another. When he was at his worst I was the one who had to go to bat for him with dr's, nurses, ambulance drivers,work, family. He didn't have the strength, but I was always the one he lost it with. There were many times when he in the hospital for weeks on end that I said to myself I am going to leave him here and not come back!!
The only advice I can give is stay positive and always smiling. Don't lose sight of yourself and take good care of you, but always remember they can't help themselves when there in the middle of an attack. Always remember they strike out at the one's they love the most. I always remember those words for better or worse....When it all began I would ask my self if this was me suffering would he stand by my side and I know he'd be right there.

Remember to take care of you. Laurie

Title: Re: Thank all of you so much!! And ... HELP agai
Post by Lizbutt on Oct 30^th, 2003, 4:53pm

Thanks, guys... I'm having a rough day. I'll try to keep in mind that you guys do this day to day... Maybe I can too. I just don't have a whole lot of faith right now. I don't know if I have the strength or courage...

Suzanne [smiley=worried.gif]

Title: Re: Thank all of you so much!! And ... HELP agai
Post by Jackie on Oct 30^th, 2003, 7:27pm

Suzanne,
I'm sorry you're having a rough day. As a supporter there are going to be rough days. If you decide you can rise to the occassion and support your clusterhead then you're going to have to put your rough days on the back burner...more often than not. I'm sorry if this sounds harsh but that's the way it is when they are in cycle. You mention faith, strength and courage. It's takes all these as well and HOPE and LOVE....for both the suffer and the supporter.
Perhaps if you study this site and OUCH and educate yourself on this malady you will have a better understanding of what this is all about.....just a suggestion.

Again....I'm not trying to come across as a hardass just stating the facts (my take on them anyway)... :-/

Jacks 8)

Title: Re: Thank all of you so much!! And ... HELP agai
Post by Prense on Oct 30^th, 2003, 7:56pm

Just an opinionated observation...don't shoot me! [smiley=bigguns.gif]

It appears that there is more to this than just the CH issues...

It almost sounds like the CH related issues are a vent hole for both you and Andrew. Perhaps more you than him...but this is just one side to a story. You guys are the only ones who can really answer that. I hope it isn't the case because that means there are underlying issues that have to be addressed for there to be any progress. Counseling, etc...

I could be WAY off here...I hope I am.

Chris

Title: Re: Thank all of you so much!! And ... HELP agai
Post by Woobie on Oct 31^st, 2003, 2:21am

Hi Lizbutt

Listen to Jackie and Margi - they are the wise ones here.

As far as the Botox.... I am willing to bet that if he has clusters... he ISN"T doing it for the wrinkles. I bet that wrinkles are the FARTHEST thing from his mind.

But - that's just me.

Tina :-*