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Topic: HI, I want to be a supporter , but want help (Read 3712 times) |
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countryguy699
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HI, I want to be a supporter , but want help
« on: Jan 2nd, 2005, 5:55pm » |
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Hi this is Curt I meet is awsome wonderful person pegg, Redd 715. We have chatted for some time now. I would like to take it to the next level. I want to be there in her life and be a supporter, but need to hear from others what to know what to expect .how to be there when shes needs it most. I need some feed back on where to start to understand what others have been thru and what to expect. I want to be the best friend . lover I can be for her.
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Lobster
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Re: HI, I want to be a supporter , but want help
« Reply #1 on: Jan 2nd, 2005, 5:59pm » |
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You up for some cheese?
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Rock beats Scissors.
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Jeepgun
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Re: HI, I want to be a supporter , but want help
« Reply #2 on: Jan 2nd, 2005, 6:09pm » |
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Why not ask her directly? Personally, I like to be left alone during a hit. There's nothing that anyone can really do to make it feel better, and I end up feeling worse if someone's hovering and wanting to help, because I begin thinking of how badly they must be feeling. Vicious cycle... Most often, just letting the person know that you are there for them, and you aren't going to jump ship because you can't deal with them being in pain, is a huge reassurance.
I'm sure other people will have better, or more varied answers...
-Frank
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| « Last Edit: Jan 2nd, 2005, 6:15pm by Jeepgun » |
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vig
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Re: HI, I want to be a supporter , but want help
« Reply #3 on: Jan 2nd, 2005, 6:15pm » |
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on Jan 2nd, 2005, 6:09pm, Jeepgun wrote:| Why not ask her directly? |
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and then listen closely and she will tell you.
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no-one
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Re: HI, I want to be a supporter , but want help
« Reply #4 on: Jan 2nd, 2005, 6:21pm » |
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Curt,
I am so happy that you want to help support Redd, she is a great person. But Like Jeep said it is best to ask her. We are all diff and need and want diff things while we are getting hit. Some ppl like to have others around them and others do not. So the only thing I can tell you is to ask Redd what she wants, and it will change from time to time (sorry)
It is great to meet you and I hope you stick around and learn all that you can. You can go to the supporters part of this site and learn more on how to help.
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Ree
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Re: HI, I want to be a supporter , but want help
« Reply #5 on: Jan 2nd, 2005, 6:30pm » |
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awwwwwwwwwwwwwwww a heart on his sleeve kind a guy................ wow...
We have a whole corner of this site for us supporters but Ill give you the low down...
First you need to be brave enough to be able to take what you witness. There are times when what happens is beyond anyones control and there is nothing you can do.
You need to be strong no matter what she says to you in the course of her attacks.
You need to ask her how she wants you to deal with her attacks. Does she even want you there? Some like to deal with the HA on their own. I don't allow that. I guess I am a pain. But if Dave focus' on me he doesn't get too out of control. I am there to be sure he doesn't hurt himself mostly. Get him tea, a cold cloth, ice, O2, an injection etc......... whatever. I have learned the hard way to get him what he needs, I know after 16+years of cycles what he needs.
Most importantly... what you will see if allowed to see it, is the most horrendous pain ever. Do not EVER discount that pain. Do not EVER say it can't be that bad. Do not EVER not believe HER!!!
And mostly if she doesnt want you around when an attack hits, respect her wishes... Don't be hurt. Be sure she is ok and let her be alone. Let her know you are there... Good luck and be in touch you can email me if you need to or visit us in the Supporters corner. love ree
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Redd
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Re: HI, I want to be a supporter , but want help
« Reply #6 on: Jan 2nd, 2005, 6:38pm » |
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Ree....
Thats the sort of thing I as a sufferer can't explain...I don't know what a supporter goes threw during the thick of things...not day after day, week and month and year.
I asked Curt to come and get feedback from you all...I can't give him the supporters side of things...not the way you can...
Thanks Ree
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Jonny
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Re: HI, I want to be a supporter , but want help
« Reply #7 on: Jan 2nd, 2005, 6:45pm » |
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You got your hands full, Redd......LMMFAO
Cheese aint going to get you out of this one........LMAO
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Redd
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Re: HI, I want to be a supporter , but want help
« Reply #8 on: Jan 2nd, 2005, 6:47pm » |
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on Jan 2nd, 2005, 6:45pm, Jonny wrote:You got your hands full, Redd......LMMFAO
Cheese aint going to get you out of this one........LMAO |
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Whatever are you talking about Jonny dear? 
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Jonny
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Re: HI, I want to be a supporter , but want help
« Reply #9 on: Jan 2nd, 2005, 6:51pm » |
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My lack of cheese.....Waaaaah
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BillyJ.
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Re: HI, I want to be a supporter , but want help
« Reply #10 on: Jan 2nd, 2005, 7:20pm » |
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Hi Curt,
What she wants/needs you to do during a hit is
something you will have to ask her,everyone of us is
differant.
Between hits there are a few things you need to
know and she needs to know that you know them.1-She
IS NOT A WIMP! 2-She is NOT exageraiting the pain,in
fact for every ounce you see,there is a pound that you
don't. 3-When she gets hit at the worst possible times
(and sooner or later she will) it IS NOT her fault!She is
not to blame. 4-Between and after hits she may feel
like doing nothing (would you after the worst beating of
your life?)again this is not her fault.
5-"how to be there when shes needs it most." That
is the biggest thing.Just to be there,to know that you
will not be "run off" by the beast.That you won't think
less of her for suffering this nightmare,rather admire her
for surviving it.
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don
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Re: HI, I want to be a supporter , but want help
« Reply #11 on: Jan 2nd, 2005, 7:47pm » |
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After an attack give her a hug and buy her a new car.
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Redd
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Re: HI, I want to be a supporter , but want help
« Reply #12 on: Jan 2nd, 2005, 7:53pm » |
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Don....you suck.... 
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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unsolved1
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Re: HI, I want to be a supporter , but want help
« Reply #13 on: Jan 2nd, 2005, 7:55pm » |
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on Jan 2nd, 2005, 7:47pm, don wrote:| After an attack give her a hug and buy her a new car. |
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Make that a JEEP
Unsolved
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Jeepgun
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Re: HI, I want to be a supporter , but want help
« Reply #14 on: Jan 2nd, 2005, 8:09pm » |
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on Jan 2nd, 2005, 7:55pm, unsolved1 wrote:
Make that a JEEP
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I think Ree and BillyJ nailed it pretty good.
When I'm getting hit at night, my wife wakes up as I'm getting out of bed and says, "You're having one, aren't you?" I say, "Yeah... I'm okay." She says, "I'm sorry..." and then goes back to sleep. That's all the support I need.  Just knowing that she's going to be there, that this isn't going to kill our quality of life, and it's something I can mostly keep marginalized.
Worst, most inopportune time to get hit, ever: Sitting down at our 11th anniversary dinner in a nice little Italian restaurant, and having to stumble out of the joint to go pace, until it went away. By the time I got back, my food was cold and people were staring at me like some kind of madman. The pain was mostly gone but my eyelid was still swollen and hanging at half-mast, and I was all sweaty. Sooooooo romantic... 
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| « Last Edit: Jan 2nd, 2005, 8:13pm by Jeepgun » |
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Kirk
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Re: HI, I want to be a supporter , but want help
« Reply #15 on: Jan 2nd, 2005, 8:18pm » |
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Since there is jack all you can do for her during an attack. When its over with, just cover her with chocolate syrup, and open a bottle of Merlot.
I'll leave it to two consenting adults what should occur thereafter. 
TTFN
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don
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Re: HI, I want to be a supporter , but want help
« Reply #16 on: Jan 2nd, 2005, 8:22pm » |
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Quote:| The pain was mostly gone but my eyelid was still swollen and hanging at half-mast, and I was all sweaty. |
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Italian Restaurant?
So you looked like 1/2 the employees. Who'd notice?
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Sean_C
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Re: HI, I want to be a supporter , but want help
« Reply #17 on: Jan 2nd, 2005, 8:32pm » |
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on Jan 2nd, 2005, 8:22pm, don wrote:
Italian Restaurant?
So you looked like 1/2 the employees. Who'd notice? |
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Italians aren't Chinese you dumbass
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Redd
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Re: HI, I want to be a supporter , but want help
« Reply #18 on: Jan 2nd, 2005, 8:33pm » |
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on Jan 2nd, 2005, 8:18pm, Kirk wrote:Since there is jack all you can do for her during an attack. When its over with, just cover her with chocolate syrup, and open a bottle of Merlot.
I'll leave it to two consenting adults what should occur thereafter.
TTFN |
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Thanks Kirk... 
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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purpleydog
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Re: HI, I want to be a supporter , but want help
« Reply #19 on: Jan 2nd, 2005, 8:35pm » |
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Curt,
The main thing is to not be scared of what happens when she gets hit. And ask her what she wants you to do to help her. Most of us don't like to be touched. And some of us like to be alone. She will tell you what she needs.
There's really not anything you can do except be there. It's frustrating.
She won't be the best person to be around either, so don't take anything personally that is said during this time. Ask her what you can do, before any attacks, and she'll tell you.
And if you can still see it to stick around, then that is the best thing you could do. Not everyone who sees these can handle it. Having a supporter is the best thing ever. Especially one who is right there.
And if you need support, you know where to find us.
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Grandma_Sweet_Boy
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Re: HI, I want to be a supporter , but want help
« Reply #20 on: Jan 2nd, 2005, 8:36pm » |
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on Jan 2nd, 2005, 7:47pm, don wrote:| After an attack give her a hug and buy her a new car. |
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Lord - we could rent Don out as the supporter supreme. Hugs and new cars - what more could you ask for!
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Redd
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Re: HI, I want to be a supporter , but want help
« Reply #21 on: Jan 2nd, 2005, 8:37pm » |
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Quote:| Worst, most inopportune time to get hit, ever: |
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During a very intence meeting between myself, a coworker, and the supervisor, after a huge missunderstanding between he and I....I was flameing pissed, but with the beast at my eyes I looked like a whimpering crybaby...and had to run from the room...
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Kris_in_SJ
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Re: HI, I want to be a supporter , but want help
« Reply #22 on: Jan 2nd, 2005, 8:50pm » |
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Just do the one thing she needs most ... love her.
She has an extremely rare disease that none of of has the words to describe.
Sufferers are all different, but we truly couldn't survive without those who love us unconditionally. Be unconditional!
If she wants hot fudge, give it to her; If she wants to cuddle, cuddle her; If she wants be be left alone, UNDERSTAND.
The car thing is good, but could make you end up in the poor house!
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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Sean_C
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Re: HI, I want to be a supporter , but want help
« Reply #23 on: Jan 2nd, 2005, 8:52pm » |
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on Jan 2nd, 2005, 8:50pm, Kris_in_SJ wrote:| If she wants to cuddle, cuddle her |
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Watch the game and tell her to get ya another beer..................she likes that
Sean...............................
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| « Last Edit: Jan 2nd, 2005, 9:00pm by Sean_C » |
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Redd
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Re: HI, I want to be a supporter , but want help
« Reply #24 on: Jan 2nd, 2005, 8:58pm » |
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on Jan 2nd, 2005, 8:52pm, Sean_C wrote:
Watch the game and tell her to get ya another beer..................fuck that
Sean...............................
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Sean...you're in for it in Dallas...you DO know this right? 
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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