New CH.com Forum
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Supporter's Corner >> Supporter's Corner >> As a victim of the Beast.... I offered myself.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1212549668

Message started by NazTee on Jun 3rd, 2008 at 11:21pm

Title: As a victim of the Beast.... I offered myself.
Post by NazTee on Jun 3rd, 2008 at 11:21pm
THIS IS PART ONE OF TWO AS I CAN'T FIT ALL CHARACTERS IN ONE POSTING...


I shared this post (for the first time in 10 yrs) to my friends & family.
I welcome input/advice on dealing with the response that might be generated from same..... as a "sufferer" to a "supporter".  What is the best way to respond to the support offerings that are unwanted???
==== SERIOUS POST.... TO ALL MY FAMILY & FRIENDS.  
Body:  As those closest to me know (and some I've still hidden it from) I suffer from Cluster Headaches (affectionately known as "suicide headaches") It is one of the most intense pains known to man and less then 1% of the WORLD'S population suffers from them so little is known about the rhyme or reason of them.  The jist of my post is simply this - I'm in my tenth year of suffering from these beastly cycles and I am rapidly approaching another one. I am taking this forum to tell you beg for your forgiviness in advance. As many of you know I try to be the "strong - steadfast - bitchy [insert sister, daughter, wife, mother or friend as needed] but I decided that this is the year that I am finally HONEST to those that I care about the most.
During the next couple of weeks or even months I am gonna be hit with the most intense pain that I can not control. I am going to roll on the floor in the corner by myself (most importantly to save you from the pain of knowing there is nothing you can do to help me [which in a twisted way helps me deal with it better knowing I am not causing pain to someone else] and literally beg God to just let me die. PLEASE, do not mis-read this statement, it isn't a cry for help and there isn't anything anyone can do...... only those that live with me on a daily basis truly know the impact of what I am saying.

I am simply begging for your forgiviness now because I won't return your calls, I won't meet you for family picnics and I won't really talk to you because I don't want to subject you to the pain of having to cope with the fact there is NOTHING you can do to help me, you can't make me laugh, you can't make me feel better, you can't take me out to get me drunk, you can't hug me, you can't tell me how much you love me, you can't do a damn thing - because by trying and by you hopeless efforts to make it all okay for me - will make me feel 110% times worse because I exposed you to this demon that I've been battling for so long and you know so little about.

That being said, I'd decided to disclose my situation to you, to try to educate you - and though I can't make you truly understand as I won't expose you to a first hand experience if I can help it - but rather, I beg of you your understanding, your compasion and your love. I hate the fact I am going to be rendered so helpless and so weak by something that I cannot myself control - the thought of exposing those that I hold dearest to my suffering and my anger and my pity literally makes me feel sick......


Title: Re: As a victim of the Beast.... I offered myself.
Post by NazTee on Jun 3rd, 2008 at 11:21pm
PART TWO.....

My ofference to you in exchange for your respect of my post is education to my situation..... there is an organization that I have been a member of for going on 10yrs now and I offer it to you as a support/education/understanding of what I am saying.



http://www. clusterheadaches. com/newvisitors. html
I BEG of you to please check out the message board & to please look at the supporters' corner.



I LOVE you guys with all of my being and the only thing that hurts me above the pain I know I am facing is the fact I cannot shield those that mean the most to me - from me once this hell starts.



~ Aimee ~

I also offer to you that which I won't expose you to one on one.... this is a series of clips from attacks - simply given to show you what it looks like as black and white words just sometimes don't get the msg across....
[I am sorry for that which I've become and that which I cannot change as I have no control of the Beast]
http://www. youtube. com/watch?v=lJxB_8G-73g&feature=related
http://www. youtube. com/watch?v=v9FMaozTgTM&feature=related

Title: Re: As a victim of the Beast.... I offered myself.
Post by Cathi_Pierce on Jun 4th, 2008 at 11:06am
OMG, Aimee! You've kept this for 10 yrs from your family and friends?

You are a CH sufferer- you even say so.........soo, why would you NOT want those you care for  to understand.........I didn't say 'subject them"..I said understand......
YES, it hurts to be standing by, useless, watching someone you care for writhe in pain. YES, it is hard to see the terror in their eyes, the exhaustion, the fight drain out of them, but, it's far better than ignorance.
A supporter can be there, watching, on the sidelines, or invisible, ready to bring you what you might need......and, most of all, to greet you when the beast loosens his grip, to remind you life is good!
I'm glad you have chosen to let your loved ones in on this..........CH's are no fun at all, and they create havoc in life, but you are NOT defined by these, nor will it be a death sentence. Your supporters should know these things and, though we will NEVER fathom the pain of a hit, we promise to always understand that ANY pain you experience is worthy of our understanding.

Bring your supporters/loved ones here, Aimee............we'll tell them the story............and I encourage YOU to find new ways to keep the beast at bay.

I wish you a brief cycle and MORE PF days, Aimee..........

Cathi :-*

edited...by just one word............

Title: Re: As a victim of the Beast.... I offered myself.
Post by starlight on Jun 4th, 2008 at 12:20pm
NazTee,

If you will forgive me for maybe being too psychoanalytical here, it sounds from this letter that the beast has made you feel very alone.  It sounds like you feel like there is no way that anyone CAN help you.  It is always amazing to me how people hide this affliction from others--(I can't tell you how many people I have hid it from or never gone into any detail to those who do know I get "cluster headaches").  Don't isolate yourself--take a risk to trust someone maybe they can help--they will never totally understand--but they can still be there for you.  That's the human condition--noone really understands exactly what someone else is going through--sucks when you're in that much pain--but don't let the beast make you feel like you're not human.  Anyway, least we understand on here...PF wishes.

Title: Re: As a victim of the Beast.... I offered myself.
Post by just-squiggles on Jun 4th, 2008 at 1:57pm
Another tool to help others understand- START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
"  The Ball Peen Hammer
« on: Sep 17th, 2003, 9:54am
--------------------------------------------------------------------------------
One of the difficulties we face as sufferes is trying to explain what CH is like. The word headache seems to sap the understanding of what it really is.  

My husband, a non-sufferer, was in an office with a rather out-of-touch, arrogant pain management Doctor once, and he was able to place the intensity of the pain into perspective in practical, everyday language that got immediate understanding, and results.  

I was floored by how much my husband had observed, and was able to relate.

"THE BALL PEEN HAMMER" analogy.  

Imagine what it would be like if some big guy were to hit you with a hammer, hard. For the sake of argument, it doesn't even have to be your head, you can pick the body part where you want to be struck (your thumb, or knee). Not hard enough to break, just very, very, hard.

Now, you have just been hit with that hammer. Using your choice of pain management skills, don't scream, don't writhe, just go to a happy place! Tell yourself that you can handle the pain. Now, you can't take any pain medicine for it , because you might have to worry about addiction, and that would be bad, wouldn't it?  

Now about an hour later, your eyes have finally quit streaming, the snot dries up in your nose, and the pain starts to dwindle to only a significant throb, and you think you might live through this experience. But now, the big dude is going to walk out of the corner and smack you in the same place yet again. Meanwhile, try to keep working, taking care of the kids, doing laundry.

You will get hit with this hammer up to six, eight times a day in the same place. This guy will be your constant companion, all day and all night, for weeks, months, years even. Sometimes you will see the dude coming, sometimes he will just hit you from behind. Either way, it will happen in public, in front of your loved ones, co-workers. Now, try not to be depressed! Try massage if things REALLY get bad.

Now, you have lived with this hammer for a month or so...(question to Doc) how far would you go to make him quit hitting you? When would enough be enough? One month, One year? How about six years? If this were a wife, son or daughter, would you sit by and watch them go through it, offering moral support when you could, or would you ask some hard questions about why people have to COPE with pain rather than TREAT it?


I hope this helps you as it helped me.  
« Last Edit: Sep 17th, 2003, 10:06am by hdbngr » "



Title: Re: As a victim of the Beast.... I offered myself.
Post by Linda_Howell on Jun 4th, 2008 at 11:58pm
I just want to add one thing here and then I will shut up.

I HATE the word victim.  You are only one if you let yourself be one.

21 years chronic and after my initial  PITY-PARTY,  I swore I would be in charge,  not the beast.  I cannot change having CH anymore than I can change being left-handed.  It's a part of my life, but it does not control me.  I live between the hits as many have said here and will never ever consider myself a victim of anything but my own stinkin-thinkin.

Title: Re: As a victim of the Beast.... I offered myself.
Post by Cathi_Pierce on Jun 5th, 2008 at 11:14am
I have removed the word victim from my post here.

I think Linda is right, if you consider yourelf a victim of CH, you relinquish your power over the beast...........and that's not right!

NEVER let the beast win....keep reading, asking, trying.........to find a way that YOU can keep the beast away!

Cathi

Title: Re: As a victim of the Beast.... I offered myself.
Post by TxBasslady on Jun 6th, 2008 at 10:48am

Linda_Howell wrote on Jun 4th, 2008 at 11:58pm:
21 years chronic and after my initial  PITY-PARTY,  I swore I would be in charge,  not the beast.  I cannot change having CH anymore than I can change being left-handed.  It's a part of my life, but it does not control me.  I live between the hits as many have said here and will never ever consider myself a victim of anything but my own stinkin-thinkin.


Linda's right.  Never give up...never give in.

Most of all....never "doom" yourself before the hits start....sheesh.

Get on with your life...CH is just a small hurdle...it won't kill ya.   Take a look around...at the folks w/ life threatening diseases/disorders.   Then consider yourself lucky that all you have is CH every couple years.

Jean

Title: Re: As a victim of the Beast.... I offered myself.
Post by Jonny on Jun 8th, 2008 at 2:28am

wrote on Jun 4th, 2008 at 1:57pm:
Another tool to help others understand- START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
"  The Ball Peen Hammer
« on: Sep 17th, 2003, 9:54am
--------------------------------------------------------------------------------

"THE BALL PEEN HAMMER" analogy.  

Imagine what it would be like if some big guy were to hit you with a hammer, hard. For the sake of argument, it doesn't even have to be your head, you can pick the body part where you want to be struck (your thumb, or knee). Not hard enough to break, just very, very, hard.

Now, you have just been hit with that hammer. Using your choice of pain management skills, don't scream, don't writhe, just go to a happy place! Tell yourself that you can handle the pain. Now, you can't take any pain medicine for it , because you might have to worry about addiction, and that would be bad, wouldn't it?  

Now about an hour later, your eyes have finally quit streaming, the snot dries up in your nose, and the pain starts to dwindle to only a significant throb, and you think you might live through this experience. But now, the big dude is going to walk out of the corner and smack you in the same place yet again. Meanwhile, try to keep working, taking care of the kids, doing laundry.

You will get hit with this hammer up to six, eight times a day in the same place. This guy will be your constant companion, all day and all night, for weeks, months, years even. Sometimes you will see the dude coming, sometimes he will just hit you from behind. Either way, it will happen in public, in front of your loved ones, co-workers. Now, try not to be depressed! Try massage if things REALLY get bad.

Now, you have lived with this hammer for a month or so...(question to Doc) how far would you go to make him quit hitting you? When would enough be enough? One month, One year? How about six years? If this were a wife, son or daughter, would you sit by and watch them go through it, offering moral support when you could, or would you ask some hard questions about why people have to COPE with pain rather than TREAT it?


WOW, Thats dead on!!!!

Title: Re: As a victim of the Beast.... I offered myself.
Post by tuck on Jun 13th, 2008 at 8:27pm
i have to agree with Linda, DONT consider yourself a victim! that makes the beast the winner. i have been battling the beast for over twenty years now, and i kind of look at it in many different ways. one way i look at it is like this, I have won EVERY battle we have ever fought!!!!! i am still here, my wife is still here, kids still here, granted, many times i begged to die, but i didnt, and the pain left, and that IS ANOTHER BATTLE WON BY ME!!!!!!! everyone of us here should pat himself or herself on the back. you are TOUGH and you ARE WINNING! it may not feel like it all the time, and you may get wounded and have a few battle scars, but in the long run, the BEAST ALWAYS retreats!!!   he may come back, and probably will, and YOU WILL WIN that battle too!!!!! it wont be easy, but you WILL win.  i gave up a long time ago,,, not fighting, but i gave up thinking he wouldnt come back, i have accepted that he WILL come back, and it will be another TOUGH fight, he will hit and hit hard, but,,,,,, I SHALL WIN!!! with the help of a great supporter, AND THIS WEB SITE, we can ALL beat him, EVERY TIMES HE COMES TO FIGHT!!!!!!

Title: Re: As a victim of the Beast.... I offered myself.
Post by NazTee on Jun 16th, 2008 at 6:41pm
To date I have taken a silent path in response to the opinions that "victim" is not the right word to describe myself in that I do not agree.  In my opinion a "victim" is someone who is subjected to something of which they cannot prevent, stop, or otherwise control.  I have not admitted defeat in my battle against the Beast, but damn it all, I am a victim of its wrath.

I appreciate the supporting words, thoughts and suggestions and in no way have I given up my battle with the Beast nor have I laid in silence.  I have, yes, shielded many of my family members that don't have to see me when I am subjected to the full wrath of the Beast in that it is in my nature to protect those that I love from exposure to something like this - and as well - I am a staple in my family that others seek in their time of need - so perhaps there is some vain selfishness in hiding my lack of control of what others don't understand.

But I stand my ground that I am a victim - and as a victim I will fight back against that which attacks me - and NO I will not be defeated for I am strong, but I am still a victim of the Beast that cannot be tamed - but I am not doomed by this struggle - merely scared, tired, confused and hurting.

~ Aimee ~

Title: Re: As a victim of the Beast.... I offered myself.
Post by tuck on Jun 16th, 2008 at 7:00pm
Well said , well said, point taken and understood COMPLETELY!!!!! may God bless you and your family!  

Title: Re: As a victim of the Beast.... I offered myself.
Post by Jonny on Jun 18th, 2008 at 8:32pm
If I was not a "Victim", why would I be screaming "Why me"....."God, just kill me"

Sounds like something a victim of Torture would say!....Just MHO.

Title: Re: As a victim of the Beast.... I offered myself.
Post by blawrence on Jun 28th, 2008 at 12:12pm
Aimee - rest assured that you did the right thing by letting your most important people in, they love you and they will be a big help.  My husband Bobby is a sufferer and i have a very realistic understanding of  the intense sick pain that you guys go thru, i don't pretend to understand this pain but his doctor told me "it's like cutting a limb off with no anthesia" so i don't want to.  But understand this i love him as they love you and they will realize after days, weeks, years even of research what they need to do. Please feel free to have them meet me here and i will do what i can for them and more imporantly you.  You see I've been at the dinner table and realized that this demon walked straight thru my back door undetected even from Bob himself, I've rushed him thru dinner, handed him kleenex, put him in the shower w/ the hottest water you ever have touched, stuck the needle in his leg and you believe me when i tell you i will continue to do this for him as long as this demon lives in this house, as will your family.  Good luck and please we're here if you need us.

Brooke

Title: Re: As a victim of the Beast.... I offered myself.
Post by johnny_with_an_h on Jul 5th, 2008 at 3:07pm

NazTee wrote on Jun 16th, 2008 at 6:41pm:
- and NO I will not be defeated for I am strong, but I am still a victim of the Beast that cannot be tamed - but I am not doomed by this struggle - merely scared, tired, confused and hurting.

~ Aimee ~

thats the attitude you need to have.

I AM STRONG
I WILL NOT BE DEFEATED
I AM NOT DOOMED BY THIS AFFLICTION
I WILL NOT LET THIS KICK MY ASS


as far as hiding ch, i've had this condition since i was 10 or 11, so everybody pretty much already knows. i'm am very reclusive when i'm in cycle and i do tend to hide but i don't lie about it. my attitude is that if somebody else doesn't care to understand what i'm going through then piss on 'em.  >:(

New CH.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.