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        Supporter's Corner >> Supporter's Corner >> How to be a GREAT supporter
        
(Message started by: Margi on Oct 4^th, 2006, 4:24pm)

Title: How to be a GREAT supporter
Post by Margi on Oct 4^th, 2006, 4:24pm

George, I've taken the liberty of copying your post here about your wife and daughter. You can send me the copyright bill later, ok? ;) I just felt it was the best description from a sufferer of how they need to be supported, that I've ever seen. Thank you SO much - you don't realize it but your post can help a lot of new supporters learn what their sufferer needs.....

"EJ has seen me get hit--more than once. In our thirty years together, she's seen them evolve from my twice-yearly cycles to the present pattern of once every three years. She's seen me come to grips with them, learn to resist them, learn to control my reactions, seen me go from helpless floundering, headbanging, and screaming, to my now-nearly-silent struggles with an invisible monster. It's still a horror show, but one that she's learned not to attend. She's learned that I need to be alone with them in order to fight them to a draw.

I know that there are terrible nights when I'm deep in cycle when she lies awake all night, wishing there were something she could do--some way to grant me a little peace, a bit of rest, but she knows that there's nothing she can do. It's my battle, alone.

There are nights, still, when the thing ramps up to unbearable levels, when I'm covered in chill sweat, and my eye pours tears like a fountain, when I go to her--I cannot help it--and tell her that I wish to die. She usually says nothing, but touches my head to show that she understands, and to remind me that it will end, and that I have much, much to live for.

....And so do I have a supporter? Oh yes. Even if she never reads the board.

Recently, as some of you know, my daughter has developed an interest in my "condition", and has explored this board. I welcome her interest, and I'm touched by her empathic reactions to my own private battles, and the battles of others. I still do not ever want her to see me take an attack. I have gone to great lengths to ensure that she does not see them, and I will continue to do so. I believe that she understands my reasoning behind this, and respects it. So is she a supporter as well? One of the best, I think--although she's saddled with an immense curiousity and a powerful desire to see and comprehend things, she will let me be, because being alone is what I need, even if it's not what she needs. And that is remarkably empathetic, I think.

I am very fortunate to have two supporters. The best of all possible kinds for me.

Best wishes,

George"

Title: Re: How to be a GREAT supporter
Post by Bill_G. on Oct 15^th, 2006, 11:58pm

Hey George,
I think that people as you and I are have to be the luckiest people in the world. We have got the support of the most important people in the world to us. I din't see how old your children are. The only one I have at home is 13, and he has been a fantastic form of support
God bless, and hoping for a PF day

Bill

Title: Re: How to be a GREAT supporter
Post by Guiseppi on Feb 22^nd, 2007, 10:08am

My wife of 25 years, my 22 and 20 year old daughters.....they are what keeps my head on straight through the worst of times. Those of you who met Christy in San Diego know what I mean!

Guiseppi

Title: Re: How to be a GREAT supporter
Post by sldrswyfe on Jul 13^th, 2007, 1:32pm

It is such a blessing to have not only a compassionate supporter, but one that is secure enough to "back off" while you're in the ring...and not take it personally.

My husband isn't physically here with me at the time...and hasn't been for awhile...but when he is he's a gem...and very loving and comforting after Im out of the ring.

He holds me...covered with sweat and all...rocks me...and need not say a word...I can hear his heart.

That he is kind enough to be quiet, and tell others if anyone happens to be around to also keep it down...is invaluable...he can deliver the information in a kind way...I would end up screaming at people during and hit...then have to deal with addional guilt afterward.

I have said this before, but not to supporters...the sweetest times I remember is waking up on the floor where I defeated the demon, with my husband lying on the floor holding me...I can never thank him enough or express my deep gratitude. That is truly how important you all are...

Title: Re: How to be a GREAT supporter
Post by sldrswyfe on Jul 13^th, 2007, 1:39pm

correction: I meant "during A hit"...not "during AND hit"...I don't want anyone to think I beat anyone!!!

Title: Re: How to be a GREAT supporter
Post by QnHeartMM on Jul 15^th, 2007, 4:28pm

Thanks Joe for the kudos. All I can say about being a supporter is I have love him even when he's being a "d*ck". He can't help it. He hurts, or he's afraid of the next hurt. Hell of a way to go through life. It takes alot of love. Nothing I can do for him when he hurts except keep the house cool, quiet, give him the remote and everything he needs by his chair, and then get the hell out of the room. He just needs quiet and to be comfortable til it's over. And then a really bland mild meal later because he will end up with an upset stomach or no appetite.

P A T I E N C E is the key.

Hope that helps someone. - Christy

Title: Re: How to be a GREAT supporter
Post by sldrswyfe on Jul 15^th, 2007, 5:02pm

Exactly Christy. Though it doesn't seem like it sometimes...because we are scared of having to do a "repeat performance" and that thought alone is too much to bear at times...we really love the hell out of you...continually...and so desperately need you to understand...where would we be without you?? Alone and in pain is where.

So I thankyou from the bottom of my heart for helping "one of us"... Thoughtfully, Sherri

Title: Re: How to be a GREAT supporter
Post by 2late on Jul 22^nd, 2007, 3:50pm

my wife is unbelieveable support, my son who is 17 also suffers from clusters,we can relate so well together we know exactly what each one of us needs and it gets done. its weird but my son and i have a special bond because of this fucked up condition. ...........Jack

Title: Re: How to be a GREAT supporter
Post by sandie99 on Jul 27^th, 2007, 4:51am

Yesterday evening my best supporter (my boyfriend) simply sat next to me while I was getting heavy shadowing and crying.

When the shadows finally faded, he only said: "I wish that your every day would be a good as possible."

I cried again.

He's the first one of my closeones who asks questions about ch and wants to know, learn and share the pain. I'm grateful and blessed.

Sanna

Title: Re: How to be a GREAT supporter
Post by rolo65 on Jul 30^th, 2007, 10:01pm

My wife often asks if I need any thing (usually a really cold glass of water with lots of ice), or quietly comes in the room and just starts gently rubbing my shoulders (which are usually knotted to all hell) without saying a word. I have told her how much I appreciate the tenderness and understanding she has for my condition. She tries her best to keep the little ones quiet which is not easy to do with a 5 & 7 yr old. If it weren’t for her I’d have been to see Dr colt 45 a long time ago. I really don’t know how some go it alone and manage to keep any sanity at all.

Love ya all! If I write any more about this I’ll probably start crying so that’s all for now on this topic.

PFD&N, and hugs for all the love and support!

Roland. :'(

Title: Re: How to be a GREAT supporter
Post by MR_FLOOR on Jul 30^th, 2007, 10:30pm

on 07/30/07 at 22:01:14, rolo65 wrote:

You just wrote my wifes story Rolo she does the same thing.Even though she knows there is not much she can do she still offers"I'm sorry babe can I get you something""I'm sorry babe what can I do"ect..........She is the best I don't know what I would do without her :-*

Dave

Title: Re: How to be a GREAT supporter
Post by Dave_C on Oct 28^th, 2007, 1:57pm

I would like to give credit to my wife also. She does not understand nor does she try to pretend to. She just asks me what she can do for me and she does it. Whatever that may be. Sometimes the answer is leave me alone, sometimes it is press with both thumbs on the back of my head, hold the ice pack on my head. Whatever it is she does.
The one thing I feel most guilty about is the attitude i have between hits during a cycle. I am one irritable son of a bitch. I fear the next one, I know it is coming soon.
Thank God for her, and her ability to cope with me. I could not do this alone for very long. Suicide would become a definite option for me. Today it is not.

Title: Re: How to be a GREAT supporter
Post by Stinger on Jan 25^th, 2008, 7:52pm

My wife usually asks, Are you getting another one? I say yes and she leaves me alone until its over. I pace mostly in the back of the house, sometimes coming out to where she is for a brief period and she will ask if it is going down yet. She seems to understand and does give me my space. We both know it will be over shortly.

Title: Re: How to be a GREAT supporter
Post by Hopeful on Mar 7^th, 2008, 10:13am

Hello All, I have read most of what you have said.
I am new to this site and I just want to say that I have been a supporter for the past couple of years since this started happening to someone I love. I guess I am just trying to understand his pain. This site helps a lot. Besides turning off all the lights, waiting silently and sitting next to him while an attack comes on, and administering Imitrex shots or waiting with an ice pack, what else can I do to make him more comfortable during an attack and what can I say to give him hope when it's all over? Is this something that can last the rest of a lifetime? He is in so much pain, or contemplating the next attack on a daily basis that I just wish I knew what to do to help more.
can you supporters give me any more advice?

Title: Re: How to be a GREAT supporter
Post by Jackie on Mar 7^th, 2008, 3:07pm

Hi Hopeful....Talk to your sufferer about what he wants you to do during an attack. Get a plan of action before the beast strikes. Sounds like you're doing the right things.

Does he have 02?

Reassure him that it will get better...make sure he understands that it is not his fault...encourage him to live his life as normally as possible between hits...make sure he eats (I've always felt that is important...they need strenght to endure)....stay calm and strong for him....let him know how important he is and how much you care.

Study all you can about the condition....education is power. He may not feel up to a lot of reading so it might be up to you.

As far as lasting forever....who knows? My hubby was chronic for over 15 years. Now. he's been in remission for over 2. Each sufferer is so very different.

Hang in there Sweetie......remember this hurts him like all hell but it's not terminal.

We're always around if you need us....just ask.

Hugs and Good Luck,
Jackie

Title: Re: How to be a GREAT supporter
Post by Hopeful on Mar 10^th, 2008, 9:31am

Thank you Jackie! :)
I appreciate your reply. It's weird. I don't know about other CH's but his are 4 to 6 times per day every day with no break from them for the past 2 years. It's just frustrating and scary. It would be nice if insurance would cover more than just a few Zomig a month. It's a pain in the ass to get proper medication. I know this is no news to anyone here. Oh well, blowing off steam.
Thanks again.

Title: Re: How to be a GREAT supporter
Post by Jackie on Mar 10^th, 2008, 5:02pm

Does he use 02 therapy? It's the best and cheapest abortive....

Could you go over to the other board "getting to know you" and post about your sufferer. Ask questions and ask for suggestions. There is a ton of knowledge on the board and someone just might hit on something that will help....discussion is a good thing.

Jackie

Title: Re: How to be a GREAT supporter
Post by Mybelle on Mar 30^th, 2008, 3:50pm

My husband is new to this horrible headache - it's been a month and a half and this morning he asked "is this the way it's going to be forever?" and this is after sleeping all night with benadryl and melatonin - it was even his night for the beast and he didn't come - but he was tickling him this morning at about a kip 3 so he was blue and I started to cry (not such good support) but I haven't been sleeping as well as he has! I took a valium and I'm still having problems sleeping.........maybe I need help - but I keep urging him to take the taurine and benadryl at bedtime and keep rockstar handy and "this too shall pass" - If only I knew when [smiley=huh.gif]

Title: Re: How to be a GREAT supporter
Post by Mosaicwench on Mar 30^th, 2008, 10:53pm

on 03/30/08 at 15:50:15, Mybelle wrote:

"this too shall pass" - If only I knew when [smiley=huh.gif]

That's a question we all ask ourselves. Thankfully we live between the hits and don't let this beast rule our world.

It will end eventually.

Contact me anytime you need to vent or talk or just say howdy!

Title: Re: How to be a GREAT supporter
Post by Mybelle on Mar 31^st, 2008, 1:34am

Thanks for the uplifting - and if I need to talk I certainly will come on and look for you guys - you're the best......today was a good day ..only shadows this morning for an hour or so.........nothing all day....

Title: Re: How to be a GREAT supporter
Post by Angie on Mar 31^st, 2008, 8:30am

Mybelle

Has he decided to go to the doctor yet.

Without the help from Barry's neuro and this place we call home life would have been unbearable. Thanks to this support group and his doctor we have been able to cope with this.

Title: Re: How to be a GREAT supporter
Post by Jackie on Mar 31^st, 2008, 6:21pm

Hi Mybelle...welcome to the family.
Stick around and read all you can. There is a ton on information here. The more you learn and understand, the more you can help your CHer.

Good Luck, Sweetie...
Jackie