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From an Anonymous Sufferer (Read 35004 times)

Margi YaBB Moderator Offline Nuthin like a good neck rub! Posts: 3814 x1\|Calgary\|Canada\| Gender:	From an Anonymous Sufferer Nov 16^th, 2004 at 9:55am I got this this morning from a 30 year sufferer who wants to remain anonymous but wrote this for his supporter. and sufferers wonder why we supporters keep hanging in there? This one really gets me. "Supporters go to heaven, God knows them well. They all go straight to heaven 'cos they've spent their time in hell." thank you, sir.
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Grandma_Sweet_Boy CH.com Alumnus Offline What Goes Around Comes Around! Posts: 4496 Georgetown,Ontario Gender:	Re: From an Anonymous Sufferer Reply #1 - Nov 16^th, 2004 at 3:05pm Amen to that - don't know where we'd be without the supporters in our lives. God Bless them all!
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Redd715 Ex Member Gender:	Re: From an Anonymous Sufferer Reply #2 - Nov 18^th, 2004 at 8:28am Grandma_Sweet_Boy wrote on Nov 16^th, 2004 at 3:05pm: Amen to that - don't know where we'd be without the supporters in our lives. God Bless them all! Some of us are doing just fine... ;. It was once said to me that a bad supporter is better than no supporter at all. Beginning to believe that whole heartedly.
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Grandma_Sweet_Boy

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What Goes Around Comes
Around!

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Re: From an Anonymous Sufferer
Reply #3 - Nov 18^th, 2004 at 8:32pm

Ah Redd, you're right and I should have been more specific to say that for those of us who have good supporters, we are blessed.

I know that you do it on your own with a ton of other stuff on your plate too. I can't even imagine having a bad supporter - you're so very right, you'd be better off with none in that case.

If you need an email or PM supporter, I'll be there for ya in a flash!

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vig CH.com Alumnus Offline CHit Happens Posts: 4442 x1\|Raleigh\|USA\|usa\|475\|180\|NC,North_Carolina Gender:	Re: From an Anonymous Sufferer Reply #4 - Dec 11^th, 2004 at 10:12pm It's MY opinion that no supporter is better than a bad supporter... ;
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Redd715 Ex Member Gender:	Re: From an Anonymous Sufferer Reply #5 - Dec 12^th, 2004 at 12:45am vig wrote on Dec 11^th, 2004 at 10:12pm: It's MY opinion that no supporter is better than a bad supporter... ; My bad Paul...I did misquote that... I still feel I'm better with no supporter than having a bad one.... ; Again..my fault ...
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cray CH.com Junior Offline I love YaBB 1G - SP1! Posts: 40 x1\|glengarry\|Australia\|australia\|285\|295\|VIC,Victoria Gender:	Re: From an Anonymous Sufferer Reply #6 - Jan 6^th, 2005 at 7:51am Reckon it,s a bit sad that any sufferer wants to remain anonymous,but if thats the way,thats ok
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ClstrHeadSupport CH.com Junior Offline Supporter of my Cluster Head, Stephen Pope. Posts: 51 x1\|Fremont\|USA\|usa\|23\|161\|CA,California Gender:	Re: From an Anonymous Sufferer Reply #7 - Jan 12^th, 2005 at 3:09pm I agree Vig. My fiancee's ex (doesn't that just say it all! LOL) used to tell him that he got them on purpose just to screw up her plans or her day. Selfish B! Those kinds of people are the ones who deserve the kind of hell a sufferer has!
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sandie99 CH.com Hall of Famer Offline Wish it, dream it, do it - inspite the pain! Posts: 11975 Finland Gender:	Re: From an Anonymous Sufferer Reply #8 - Feb 7^th, 2005 at 12:48pm I don't know which is worse... a bad supporter or no supporter at all. My mum is a bad supporter, but my friends have been great. I know it's not that simple... I just wish that when my dad was battling against the brain cancer, I managed to be a good one. I'll never know....
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Ellick

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ET found here.

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Re: From an Anonymous Sufferer
Reply #9 - Feb 27^th, 2005 at 1:55pm

I think saying what you think to each other when the emotions are NOT tight is the best way.

I think it is just as tough for any supporter. My wife was saying earlier today that when I am in a cycle it feels like there is sickness in the house and everything just stops. She feels like throwing all the windows open and letting fresh air back in again.

I look at it this way. The strain is on both of us. We have to work on that as well.

To anyone that supports BLESS YOU xxx

Ellick

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Jerome_Ebel

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Re: From an Anonymous Sufferer
Reply #10 - Apr 24^th, 2005 at 2:21am

From a new supporter.
Why are there CH sufferers on this earth? So the rest of us quit whining and realize how good we have it!! I know there are other reasons that I will learn about later but this explanation will have to do for now! I'm new to this forum so forgive me if I'm out of line in any way. "Show me a guy who reads the owners manual BEFORE he takes the new car for a drive and I'll show you a liar!"

« Last Edit: Apr 24^th, 2005 at 2:23am by Jerome_Ebel »

When the student is ready the teacher will arrive.

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don

Ex Member

Re: From an Anonymous Sufferer
Reply #11 - Apr 24^th, 2005 at 8:47am

Quote:

From a new supporter.
Why are there CH sufferers on this earth? So the rest of us quit whining and realize how good we have it!!

You will be the supporter everyone wishes they had my friend.

Remember that supporters have to occasionally whine and vent to. This is the place for you. Dont hesitate.

P.S. I'm a sufferer who who supports supporters.

« Last Edit: Apr 24^th, 2005 at 8:49am by N/A »

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Redd715 Ex Member Gender:	Re: From an Anonymous Sufferer Reply #12 - Apr 24^th, 2005 at 12:19pm Don wrote on Apr 24^th, 2005 at 8:47am: You will be the supporter everyone wishes they had my friend. You know what Don? I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but.... I'm a lucky woman....
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don Ex Member	Re: From an Anonymous Sufferer Reply #13 - Apr 24^th, 2005 at 1:06pm Love, if its real, over rules all pain and disability.
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zebb37

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God damn the pain

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Re: From an Anonymous Sufferer
Reply #14 - May 13^th, 2005 at 3:41pm

ClstrHeadSupport wrote on Jan 12^th, 2005 at 3:09pm:

I agree Vig.

My fiancee's ex (doesn't that just say it all! LOL) used to tell him that he got them on purpose just to screw up her plans or her day. Selfish B!

Those kinds of people are the ones who deserve the kind of hell a sufferer has!

I can identify with that point of view - my wife is apt to re\ct that way. Sometimes it does seem that all life kind of stops for my episodes.

3 months or more is a long time out of a well person's year to be sat around, impotantely watching someone suffer.

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Erin

Ex Member

Re: From an Anonymous Sufferer
Reply #15 - Jul 13^th, 2005 at 7:41am

[quote author=Redd715 link=board=supporters;num=1100616917;start=0#12 date=04/24/05 at 12:19:23]

"You know what Don? I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but....

I'm a lucky woman...."

Oh God yes... I just want to use this pain-free moment to say thank you to Arno for being the most special man any woman could ever hope to know. To be fair, he didn't walk into the CH part of my life knowingly - I had not had them for 13 years, until 3 weeks ago when they returned with a vengeance, so neither of us knew that we would have to be dealing with this hell now... but like the angel he is, he rose to the challenge without hesitation or complaint, and I appreciate his innate *good-man-ness* all the more for his being here for me "through the fire." I love you, Arno!

E.

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Redd715

Ex Member

Gender:

Re: From an Anonymous Sufferer
Reply #16 - Jul 13^th, 2005 at 1:17pm

Quote:

"You know what Don? I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but....

I'm a lucky woman...."

Update on this...He sort of walked right back out again.. Not due to the HA's... he has personal issues that made the attempt at building anything just a (tad bit?) premature.

"The goal of life living in agreement with Nature." ~Zeno

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ClstrHeadSupport CH.com Junior Offline Supporter of my Cluster Head, Stephen Pope. Posts: 51 x1\|Fremont\|USA\|usa\|23\|161\|CA,California Gender:	Re: From an Anonymous Sufferer Reply #17 - Oct 24^th, 2005 at 9:18am Sorry to hear that Redd, but I'm a firm believer that everything happens for a reason. And I myself have learned that sometimes it takes years and years for those reasons to come to light, but when they do everything else falls into place.
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Guiseppi

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Re: From an Anonymous Sufferer
Reply #18 - Jan 5^th, 2006 at 6:53pm

I need to get my wife to start posting here. She's put up with these once to twice a year visitors for 25 years and has never bitched. When she'd see me drag out the 02 she'd pour me a glass of ice water, put the cafergot on the coffee table, dump a couple of ice packs by the chair, grab the kids and head out for an hour. Those of you who do this alone, I keep on the same pedestal I reserve for single parents. I'm not sure I could face this alone, my prayers and thoughts to all of you who have to.

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Lietuvos CH.com Newbie Offline AHHH...AAHHHH.. .AAAHHHHHH Posts: 17 x0\|Bolingbrook\|USA\|\|0\|0\|IL,Illinois	Re: From an Anonymous Sufferer Reply #19 - Jan 29^th, 2006 at 12:24pm i've always said: I no longer fear Hell, for there in no pain worse than a cluster. p.s. are you the same redd that skins for morrowind?
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rapunzel

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'sometimes you just need
to howl"

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Re: From an Anonymous Sufferer
Reply #20 - Mar 14^th, 2006 at 10:30pm

I have been on all ends of the supporter-no supporter- great supporter scale-
my exhusband was a very cruel person who used to tell me that he hoped it was a brain tumor-and wouldnt help me at all during attacks. He called me a baby when I would cry and pace with the pain.
I also went through it all as a single mom with three little kids, after my divorce- and during one episode- kids were awake and I got hit by a ch- I had the kids go next door to the neighbors (didnt want them to be scared), she called my mom to come help me. She was scared because she didnt know what was going on, and called an ambulance after she called my moms house. But she kept my kids for me until I returned and had gotten thru that particular episode. I managed to keep it away from the kids as much as possible other times, because they were so young, they couldnt have handled my episodes without being scared.

My now husband is a God-send, he is very supportive, even if he doesnt understand, and he is a great help with the kids/house/willingness to help me even though there really is nothing that can be done during an attack (except get OUT OF MY WAY

)

I just wanted to add that a bad supporter is worse than no supporter at all, however I wish all CH sufferers a good supporter at some point. It makes it so much easier to have someone to talk to about it, who doesnt judge you or think you are faking it or a whimp, someone who can just pat you on the back and love you-- pain and all.

My thanks to all the good supporters out there. We appreciate you.

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tedski CH.com Newbie Offline Ooh-Rah!!! Posts: 22 x0\|Madison\|USA\|usa\|\|\|WI,Wisconsin Gender:	Re: From an Anonymous Sufferer Reply #21 - Jul 20^th, 2006 at 9:02pm Amen, I think the poem is great. I also don't think you can be a bad supporter because if you care at all about what the person is going through and how the beast is destroying their life, you're a good supporter. If you don't care or care more about yourself then them you're not a supporter at all.
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Daddys_Devil

Ex Member

Re: From an Anonymous Sufferer
Reply #22 - Sep 7^th, 2006 at 9:34pm

Here's a poem from the point of veiw of a supporter. I just made it up so bare with me. Hope everyone likes it.

Hello. I'm a supporter
Hello. I'm a suviver.
I support, and I live.
Giving the best gift
I know how to give.
I do my best,
of I think's what right.
Getting with your pain,
in the dead of the night.
I live might be your love,
I might be a friend,
I might be a stranger,
but I'm here 'till the end.
Hello. I'm a surviver.
I support, and I live.
Giving the best gift,
I know how to give.

Always,
Felicia 8)

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pingu1981 CH.com Newbie Offline The world was my oyster, but I used the wrong fork Posts: 8 x0\|Llanelli\|Wales\|\|0\|0\| Gender:	Re: From an Anonymous Sufferer Reply #23 - Feb 23^rd, 2007 at 4:13pm Like it! Absolutly true! Don't know where I'd be if it wasn't for my parents!!!!!!!!!!!
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sldrswyfe

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Re: From an Anonymous Sufferer
Reply #24 - Jul 10^th, 2007 at 3:28pm

With the utmost respect to everyone and their personal reasons for their opinions...I think, speaking only for myself, that no supporter beats a bad supporter.

Somehow, being mocked, degraded, belittled, made to feel guiltier than I already do...someone rolling their eyes while Im in agony...I could do without...at least I have peace alone.

I have a good supporter at this time in my life...but know both sides...had bad supporter for a long time.

Just speaking for myself...

But, in reality, whether a human being is there or not...we always have a supporter...and ultimately, we face the pain alone. Just us and the beast in the ring...

"Great spirits have always found violent && opposition from the mediocrities." -Einstein&&&&"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot&&&&"Oh, say does that star spangled banner yet wave?"....Your damn right it does.

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