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Supporter's Corner >> Supporter's Corner >> Need help from the supporters
(Message started by: jenrob2006 on Jul 13th, 2006, 2:48pm)

Title: Need help from the supporters
Post by jenrob2006 on Jul 13th, 2006, 2:48pm
I have been suffering for over 15 years now.  My nine year old daughter has grown up seeing this, so she knows no different.  I met my now-husband a year and a half ago in the middle of a three year remissions.  First ever but I hope not last.  We were married in April and my cycle started in May.  I am scaring him out of his mind.  I can tell he is freaking out, but not saying anything.  I need help as to not let this affect us.  I do not know what it feels like to be on the other side of this monster.  Please give me some advice on how to keep from overloading him with this.  He has been awesome and doing whatever I need.  At first he was getting up with me everynight until I told him that there was really nothing he could do and to go back to sleep so he would not be exhausted for work.  

Thank you.

Title: Re: Need help from the supporters
Post by E-Double on Jul 13th, 2006, 3:27pm
It is hard feeling like we make them feel that way.

You can have him check out the supporters board.

My wife visits here occasionally.

The best way that I know is to have your spouse educated thus empowered and to let them know every moment howmuch they are appreciated.

Hugs to you and I'm sure others will come around that are "supporters"

Title: Re: Need help from the supporters
Post by JeffB on Jul 13th, 2006, 5:34pm
My ex girlfriend was the first to see me suffer, We actually went through my first attack and cycle with no idea what was going on. I was told from my pop and sis who suffer migraines that I may have ch's. I took Julie with me to Kaiser and was diagnosed pretty quickly what I had, CH's. She has been with me through every attack at home, she miised the ones at work. She was my ice girl, we always had a bowl of ice water in the fridge and a cold rag ready to go. I was lucky and had 5 years pf until about 1 1/2 years ago and am waiting for another cycle to hit, hope it doesn't. I dread the beasts arrival as I am alone now and after 10 years of being with Julie she finally got smart and left me. I think the more your guy is involved he will learn when to help and when to step back.

Title: Re: Need help from the supporters
Post by Charlotte on Aug 10th, 2006, 1:43am
Jen.  He's here on line and doing the best he can to understand.  All he can do is make sure you have access to what you need and then keep out of the way unless you ask for help.  And like E-Dub says, let him know every possible minute how much you appreciate him.   I don't know what to tell you, except he is a good man and you two are good together.  A lot of sufferers have had long marriages so that also means a lot of supportive spouses have had long marriages.

You'd like to ease his mind and he'd like to ease your suffering, and there is a lot of room for frustration when that doesn't happen.  I wish you the best of luck.  

You asked for help from supporters, and it looks like you got responses from headache people who are also supporters but not yet the ones you possibly expected.

Charlotte

Title: Re: Need help from the supporters
Post by kayarr on Aug 12th, 2006, 10:03pm
Jen/Rob,

I am my husband's supporter.  I met him after he knew he had cluster headaches.  
The way I help is I go and get him a new oxygen bottle when he runs out mid attack,  I had to track down a new oxygen prescription for him while he was working.....You know stuff.  I also have to understand when he does not make it to bed for months on end or if he is really tired and a little grumpy or if he a little unwilling to go into different social situations because of the oxygen use......
He understands when I go to bed because I have to go to work at 4:30am.  We just love each other the best we can like any other couple:)



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