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......

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............

Another tool to help others understand- Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
"  The Ball Peen Hammer
« on: Sep 17th, 2003, 9:54am
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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 » "

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

Quote:


WOW, Thats dead on!!!!

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 ~

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.

NazTee wrote on Jun 16^th, 2008 at 6:41pm:

thats the attitude you need to have.



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.