Hey all, first of all I want to say thanks to all of you out there who support your clusterheads.  It means a ton to us.  Really.

My wife is having a super hard time with these things.  It's absolutely racking her emotionally, and I don't know how to make it better for her.  So...

Is there anything that you as a supporter would like to hear from your loved ones that would help you deal with the emotions that come along with being a supporter?

"My wife is having a super hard time with these things.  It's absolutely racking her emotionally, and I don't know how to make it better for her.  So..."

Mate, you've already taken the greatest step toward supporting your supporter - admitting and accepting that her pain is far worse than ours.

We endure it.  They suffer it.

If you're one who needs to be alone during a hit (like so many of us) ensure she knows it's not because you love her any less and an extra kiss afterwards and "thanks for understanding" doesn't go astray. Fair dinkum, it's so difficult for them to stay away but they know they have to, and it's a pretty tough call.

That's just one example but the most important part is that you and your beloved just sit down while you're not getting belted, holding hands, and discuss it so she knows how best to help.

Supporters are good like that and we love 'em to bits.  She may even choose to crawl aboard here and chat with other supporters.

Hope so.

Quote:

Is there anything that you as a supporter would like to hear from your loved ones that would help you deal with the emotions that come along with being a supporter?

What helped my wife was something to do that helps me. Her knowing what to do during an attack helped immensely. Her seeing that her actions were having a positive effect on my pain, only brings you closer together. Her knowing when to leave me alone ,and that it was OK to do that helped as well. Simple communications when the beast is taking a breather helps. Talk before or in between hits about what your supporter can do to help. You know they have CH as well in a way and it takes a toll all around. Let them know your concerned for their feelings as well. Tell them to relax CH will not kill you, or them either.
These demon battles are ugly to see. Let them know that you are in the battle to win ,and their help is aiding you to do that.
all the best 8-)
thebb

A big hug helps too. ;)

     I pay them.

          Potter

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I pay them.

;D ;D ;D

Payola works as well.  ;D  Cooking dinner for her helps too. Just dont burn it.
all the best
thebb :D

Brian and John are pretty smart me. Their advice is dead-bang  on. Your supporter somehow has to understand she is NOT in control of this, therefore, she is not responsible.
As Brian said, a thank you, a special night out, a kiss,,,,,,,all these, when you are not being rammed by "hisself" will help her. Best of all, conversation when you are both up to it, about the beast, and perhaps something specific she can do while you are dancing. Something as simple as ice or frozen peas for your noggin.
MOST OF ALLLLLLL....Please invite her here to chat with other Supporters. Everyone here has something to offer, and everyone has experience.
She will be welcomed with open arms and a lot of understanding as well.........
Wishing you PF

Cathi ;)

Education is a huge help.  Understanding CH takes away some of the fears.  The knowledge that this is not terminal is a bit reassuring.  It doesn't make a supporter feel any better when seeing a loved one suffer such pain but we can sometimes console outsleves by knowing that it's not fatal nor does it lead for other conditions (so we're told).

Talk about it......what do you want her to do to help you.  Busy work can help pass the time until your hit is over.

Promise her that you WILL be OK.  It hurts like bloody hell but you can handle it if she can.  There is safety in numbers and it really does help to team up.

Make sure she understands that it's not her fault and it's not yours either.  Guilt is a big issue for supporters....it always was for me.  You feel like there should be something you can do.  Helplessness sucks!

Bring her here, Sweetie.....maybe talking can calm some of her fears.

Good Luck to you both....

Jackie

Jackie is so right. Education goes a long way and there's no place like this site to start learning. I don't get here very often these days. For some time now, Brian and I have had limited accesss to computers - so for the sake of convenience - Brian communicates with CH.com while I take care of the relatives. However, I digress! Before Brian discovered this site, life was a very grim thing indeed. What little information we could lay our hands on was unenlightening, we didn't know of anyone else who was afflicted, doctors were at best sympathetic but largely unhelpful and we felt extremely isolated.

While I managed somehow to realise that my falling apart with anxiety, guilt and frustration was the last thing Brian needed, I was at a loss. All I could do was pray, and someone up there finally listened. One night I caught the tail end of a radio interview with Professor Goadsby. My attention was suddenly riveted by the word "clusterheadache". I sent away for a transcript of the broadcast the next day. It was our first step towards sanity, and our second was coming to CH.com.

There's a lot of reading involved. It can't all be done in one fell swoop, but as much as is known about the nature of the Beast is all here for the asking. It can only help your supporter to understand your suffering so much better, and hopefully free-up communication on both sides in matters of how to help each other. My heart goes out to both of you!

Denny
(SHOODABINANUN)  

Thanks everyone for your responses.  I was able to sit and talk with my wife about what she can do for me during an attack.  Last night, she brought me an ice pack, and helped me concentrate on my breathing.  She seemed much better afterwards, and actually got some sleep for once.  It was much better.  I'm trying to get her to come on to the forums here to learn and to talk with people, but I think she feels a little bit scared about it.  I will continue urging her to come here and talk with some of you.  You all have been a great help to me, and I know she would benefit from it as well.  Thanks again.   :)

Supporter's ROCK!!!!!!!!!!!!!!!!!!!!!! 8-)

[smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif]

For me, the hardest part of being as supporter is the helplessness.  thebbz gave you the best advice of all in this thread.  Give her something to do that will make her feel like she's able to make a difference for you. Even if it is just to leave you alone.  THAT really sucks for a supporter and it goes against human nature - to leave when someone you care about is in pain.  

It took me a lot of years to learn that Mike needs to focus on the pain in order to control it.  He doesn't need me there firing questions at him.  I stay within earshot and I trust him enough to call me if he needs me.  

Mike has told me repeatedly that the biggest thing I've done to help his pain is the research I've done.  Maybe THAT can be something your supporter can do for you?  There's so much more available now to cluster families than there was when most of us were introduced to the madness.  And then....LISTEN to what your supporters finds for you.  That's been MY biggest sanity saver is Mike accepting my help from what I've learned about cluster.

And don't forget to tell her about the bubble bath and wine thing - supporters need to learn to give themselves permission to take some time off from clusters.  Even if it's just an hour.

Thanks for asking the question - even just you asking it, shows you're on the right track to helping your supporter.

Please try to convince her to come here.  There is no reason she should be scared to post and ask questions.

Everyone here will be extra kind and helpful.  I promise.  In case she decides to sign in...what is her first name so we will know who she is?


Linda

Thanks everyone...  her name is Theresa.

It's hard to explain.  She has this fear that signing on to these forums will mean admitting that they're real I think.  I know she's hoping that they'll just go away...  She'll get there eventually.

Again, thanks for all of your help.   :)

Give your supporter a hug once in awhile and just say "Thanks for being there" I, as many, find that when in cycle I am not in the best of moods, guess the beast just wears us down. We do not mean to snap at you and sometimes we just take you supporters for granted.

I am taking my supporter, my rock, Angie for an awesome lunch today at a Japanese Fusion Steak House for a little treat for her just to say thanks for all she does.

Remembering to keep the scripts filled, the o2 full, have I taken my Verapamil this morning, giving me my space when getting hits but staying close enough to keep an eye on me and so on.

Like I said, you supporters rock!!! [smiley=bigguns.gif]
Thanks again you guys, you help more than you will ever know. :)

  Barry