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Roxy
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Anger vs. Fear
« on: Mar 20th, 2006, 11:19pm » |
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This is about clusterheadaches, and for the longest time I haven’t seen much on this board about clusters….so maybe I should put this on the cluster specific page, if so…..sorry. I know I haven’t posted much in awhile, but I do stop in frequently to read when I can. There seem to be a lot of people posting about fear….fear of the clusters. I can’t even name the number of posts I’ve read where people talk about how scared they are……and maybe I’m fucked up, but I don’t understand this.
Don’t get the wrong idea…..there are plenty of things that I fear, rabid skunks in my front yard, the rattlesnake under my roses, tornados touching down outside my window, grass fires in our fields, drunk idiots behind the wheel of a car…I have three kids, so I know fear. Is the fear not there because I’m chronic? I don't know....don't know what it's like to be episodic. Fear just doesn’t enter the equation…..anger…….now anger enters the equation big time. These things piss me off.
I just worry about those people who are so scared of these damn things. Yeah, they fucking hurt….but we all know that. I just don’t like to see people’s lives paralyzed by fear. Get mad at the damn things…..when you’re mad you fight back. When you fear something….it rules your life. Make the damn things secondary to your life….and then get damn mad when they interrupt.
We have clusters, they are going to come. Treat it like a war….are you prepared? Do you have your ammo lined up? What is new on the horizon that you haven’t tried that you could?
It just breaks my heart to see people post that they are scared to go to sleep. Just look at it as you’re getting a good hour to hour and a half of sleep before you have to get on the 02.
Do these things scare you? Or do they really piss you off?
Roxy
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tanner
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Re: Anger vs. Fear
« Reply #1 on: Mar 20th, 2006, 11:23pm » |
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AMEN
nice to hear from the Texas contingent..........tim
btw I am probably guilty of being part of the pissed off/scared/ and ready to fight group, but i am doing the best I can!
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| « Last Edit: Mar 20th, 2006, 11:28pm by tanner » |
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maffumatt
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I used to be scared, then I got over it, you can't deny the pain, and yes it gets me down. But I don't fear it any more because I know I'll get by. I always do. You get up every day, put your pants on, and get on with your life. I lost my fear when I found you guys, its the unknown that used to scare me.
Matt
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nani
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Re: Anger vs. Fear
« Reply #3 on: Mar 20th, 2006, 11:41pm » |
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I think being chronic helps kill the fear and feed the anger. They used to scare me when I was episodic. I got over it during the 5 years I was chronic. During those years, I just got madder.
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cootie
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Re: Anger vs. Fear
« Reply #4 on: Mar 20th, 2006, 11:50pm » |
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Brad FEARS them cuz nothin ever worked fast on them for him.......he's been pf for quite a while but rarely a day doesn't go by we both don't fear them comeing back. Maybe cuz it's been so long the heart has grown more paranoid.....never fonder Pam
We have trex shots stashed for next time hopein that rainy day never comes..........
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purpleydog
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Re: Anger vs. Feary
« Reply #5 on: Mar 20th, 2006, 11:53pm » |
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They really piss me off. They interrupt my life, and there's not a damn thing I can do about it. But do I fear them? Not anymore. I used to worry all the time about getting hit, and when was my next hit, and oh shit, oh my god, here comes another one. Panic time.
But not anymore. I still have a life to live, and if I let these fuckers take over my life with fear, then where would I be? I would be paralyzed with fear, afraid to do anything or go anywhere.
So I live my life. I usually know about when I'm gonna get hit, and I'm prepared for it. And for the heavy shadows, and hits I get when I'm "in cycle", I deal with it and move on. I'm chronic. And I still get the random ones. It's really an inconvenience. It's a pain in the ass.
Sure, if I let them go, and they get out of control, it's a major problem, but I still have stuff to do. So I get mad. And whip out my trex, and get even. And move on with my day. Sometimes, I have to decompress before I can move on. But, I can't let these things control my life, or I wouldn't have much of one, that's for sure.
Not to say, I don't ocassionally have my momemts. But anger is much better.
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Linda_Howell
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Re: Anger vs. Fear
« Reply #6 on: Mar 21st, 2006, 12:24am » |
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yep Roxy.
It's the episodics who fear it. Not us chronics.
Which goes to prove from some of our posts that chronic is better in some ways.
Chronics don't worry about having a glass of wine with dinner.
Chronics don't fear the next hit because they know when it will come.
Chronics are the Ins. Co's nightmare. I love it when they're scared of us.
Linda
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Cathi04
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Re: Anger vs. Fear
« Reply #7 on: Mar 21st, 2006, 1:21am » |
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AND, Chronics are the ones who are conditioned to get back up and go forward.They have learned to live with the fact that LIFE is what they LIVE beyond the hits.
Episodics get blindsided.....kinda like a Hurricane without warning, or an earthquake. Often lurking.
I have heard it from many. At least a Chronic never gets to a point of indifference, they KNOW the beast will creep up, like the creep it is.
Fear? When it shakes you out of your security....yeahh.I can see how that would be...........Anger?? Yeahh! The spirit and mindset needed to fight! Just remember to direct it toward the beast himself...and remember, whether it's 5 mins or 5 years, the time that REALLY counts is when you're NOT dancing.
Being who I am, I can only say, I wish I were half as strong as my clusterfriends...wish it didnt have to be that way.
Thank you, Roxy, great post.
Cathi
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MJ
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Re: Anger vs. Fear
« Reply #8 on: Mar 21st, 2006, 1:28am » |
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Thanks Roxy.
They dont scare me nor do they piss me off.
In the heat of battle both will cause you to lose.
For me it is more of an acceptance and frustration. Its the hand I have been dealt and I will fight with all the power at my command.
Denial is my best friend when it comes to CH. I have a beast of my own that will wake on a moments notice to fight the one attacking in my head.
We allways win. The battles seldom last more than a couple hours and we are the ones that are allways left standing. The CH has allways turned tail and run, hour after hour, time after time, year after year.
So do not fear an attack, the bastard is a coward but I have to admire his determination and fighting abilities.
War is an art.
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MJ
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Sean_C
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I've been both, chronic and currently episodic, but I always remember fear in the equation. My 10 year being chronic was more difficult for me, because all the uniformed nuero's said all scans were normal no matter how many times I would tell them that something is seriously wrong in my head, they would just close the door. Which basically means your on your own.
Eventually you come to terms with accepting that you ARE going to die, its just a matter of time and somethings gonna explode.
I don't think in my case its a fear of having a cluster, its a fear of having an uncontrollable kip 10. Having a simple cluster in some ways, is controllable, having a kip 10 in my opinion is suicide waiting to happen.
Its the wake ups where you've had 2 hours of broken sleep a night for 3 months, and find that by the time you answer the kip 10 wake up call, its too late to do anything more except beg. Its the feeling of hard, relentless, excruciating pain for hours, that puts you to your knees. Its the thing that makes you verbally abusive, but your the only one in the room. Its the thing that makes your body tremble so that your teeth chatter, but your in a pool of sweat. Its the thing that makes you not be able to get a full breath, but your sucking on 15 lpm of pure oxygen. Its the thing that makes the mirror crack when you take a look, and you see somebody else, because you don't look like that, but it IS you. Its that feeling of fighting not to lose control, when the truth is your just barely hanging on.
I've suffered 2/3 of my life, and I haven't gotten used to the pain yet. Its just a whole lot of hurt if you ask me. You can't control it, it controls you. Like it or not THATS the real truth, and we all know it. We fight to keep from losing control, but the facts are, when you feel that way, and someone from the outside is looking in, you'd see you already have.
I fear nothing, except my beast. I live, I love, I fear. Its my life, I know no other. Its not the fear of having clusters, its the fear of clusters having me 
Sean..................................
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| « Last Edit: Mar 21st, 2006, 2:36am by Sean_C » |
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Jasmyn
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Re: Anger vs. Fear
« Reply #10 on: Mar 21st, 2006, 3:06am » |
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Sean, I could not have said it better! 
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Charlie
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Re: Anger vs. Fear
« Reply #11 on: Mar 21st, 2006, 3:16am » |
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I've been there and you're all right. It's scarier for episodics. I was terrified until I found that I was not unique. I was lucky in that only because I had regular appointments with a neurologist.
It sucks being afraid to go to bed though. It affected my sleep patterns even after they disappeared.
Charlie.
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Barry_T_Coles
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Re: Anger vs. Fear
« Reply #12 on: Mar 21st, 2006, 3:20am » |
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on Mar 20th, 2006, 11:39pm, maffumatt wrote:I used to be scared, then I got over it, you can't deny the pain, and yes it gets me down. But I don't fear it any more because I know I'll get by. I always do. You get up every day, put your pants on, and get on with your life. I lost my fear when I found you guys, its the unknown that used to scare me.
Matt |
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Yep that's me.
Barry
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cardogman
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Although I have had one 6 week run of CH and it was not like most, never got to a 10 pretty much around 7 maybe 8 at the worst I understand somewhat the fear. I too dreaded certain times of the day after I found out what it was and when the pain visited. I think this is a good thread and I have my opinion about this.
I think Fear and anxiety go hand in hand. Anxiety breads fear. I suffer from generalized anxiety sometimes and have some other issues with some OCD for about 20 or more years. It comes and goes. Have spent a long time off and on in therapy.
What I have learned about fear is that it is fueled if you fight it. To actually combat fear the self help treatment for it is to accept it and let it happen and get as anxious as you can and float through it. Another word for it is de-sensitization. It will eventually help.
When you fight you flight. I am sure all of you know what the Fight or Flight Syndrome is. The more you fight it the worse it gets.
Does anyone have concurrent OCD. I thought I read somewhere that some people with CH also have had episodes of Obsessive Compulsive disorder. 2.3% of the population have this abot 2-3 out 100 people. In different forms.
I'm getting off the track a little.
Burt
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karma
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Re: Anger vs. Fear
« Reply #14 on: Mar 21st, 2006, 7:48am » |
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I don't fear it or get angry. It just is what it is and gets dealt with.
I rationalize it by knowing that there are lots of folks way worse off than me and they can smile and enjoy life.
So what justification do I have to let this ruin my life?
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cardogman
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Good Point Karma man I agree.
Burt
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john_d
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Yes, they really do scare me. I am episodic and my cycles are far between, I am not used to the pain and it really scares me. When i am in cycle, everynight I live in dread for the first hit. Dread like I never experience anywhere else in my life. My good friend is chronic and she is not afraid of them like I am as far as I can tell.
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| « Last Edit: Mar 21st, 2006, 7:55am by john_d » |
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pattik
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Re: Anger vs. Fear
« Reply #17 on: Mar 21st, 2006, 8:23am » |
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I'm episodic, and I understand the related fear...you know, just knowing the other shoe will drop eventually. It's hard to forget about that kind of pain. But finally getting the correct diagnosis killed a lot of the fear. I think that the more knowledge you have the more power you have over the fear.
Then there is the arsenal one can build up in advance. It all helps to keep one's mind on the more beautiful parts of life. 
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catlind
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Re: Anger vs. Fear
« Reply #18 on: Mar 21st, 2006, 8:52am » |
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Something from an article in prevention magazine:
"You'll see how choice is the true voice of the heart. Having no choices or options leads to depression, anxiety and the condition called learned helplessness. Anyone can choose the course of their life, but only happy people do it. "
I started off on these boards some 4 years ago now, episodic, and having gone through a multitude of tests and diagnoses before learning the name of what tortured me. I lived in utter fear. I had just lost my father, I had an infant child and two others 6 and 8, my husband was and still is active duty military and when he wasn't deployed to a war zone he was spending 7-10 days in the field on exercises almost every month. Fear of this thing gripped and froze my life. Then I found this place, and Jonny and Slammy gave me a good swift kick in the a$$ and I learned over a few months that this thing, this beast, is only what I let it be.
I am now considered chronic, although my life has been relatively pain free, so I'm one of the lucky ones. I rarely see hits beyond a 6 now, and the ones that do are quick to fade.
Through the help and love and caring of friends I found here, I made the CHOICE to stop allowing this to control me and I began controlling it. Despite not being able to stop it, not ever being able to make the pain non existant, my choice was not to stop having clusters, it was how to deal with them when I did.
I'll stand on this side of the fence any day of the week, and anyone who's witnessed another suffer an attack would agree. If you haven't had the pain of that experience, read this post, it will tell you what the other half has to live with, it's what we witness when another sufferer we love gets hit, it's what stops me from quitting, it's what makes me fight....Jackie's post is what made the world make sense in a twisted angry painful sort of way.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=supporters;a ction=display;num=1063832550
Cat
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rickyshot
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Re: Anger vs. Fear
« Reply #19 on: Mar 21st, 2006, 9:01am » |
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Sean I could have not said it better. I am episodic and tend to get suicidal when in cycle and have to monitor myself closely. That causes fear. I hate feeling like that but this shit actually does something to the chemistry in my brain to the point of changing my behavior. When not in cycle I am not like that at all. All those years of going undiagnosed must have made me appear to be a mental case to the world even my children.
I have had a TIA caused by days of complicated migraines and was paralysed for five days on the right side. I am still weak on that side but not noticibly to the public to this day. After that episode I went in a big fear of not just death but worse to my mind being some type of invalid.
Also missing a lot of work when in cycle caused me fear of losing my livelihood. I am my sole support and get help from no one.
So it is not just the horrible pain of CH but the affects in our daily lives that may cause fear. Many people have lost jobs, mates , friends etc due to this. No one understands. You get comments from at least you are not dying of cancer etc. People do not die from CH unless they commit suicide so the public pooh poohs this. Sigh................
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Dragnlance
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Re: Anger vs. Fear
« Reply #20 on: Mar 21st, 2006, 9:03am » |
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I firmly believe that being chronic for my whole life has killed off my fear. I too have noticed all the posts about the fear of an attack, and actually found it within myself to thank God that if I had to have this damn monster in my head that I was made chronic. I have no fear of the monster, and he does piss me off for runining some of my days and nights. I live by my motto below. Homicide, not Suicide. Kill the damn monster. Why should I be the one to die?
I also know plenty of people worse off than I am. I can function. There is a man I pass to and from work most every day. (I walk) This guy has a walker, and it takes more effort for him to make it to the end of the block than it does for me to go a mile. It is down right painful to watch him try to make it across the street before the light turns. Yet every day, he goes downtown to run his erronds. Even though he could get a ride from some of the services around town for free, he still "walks". I admire him because of this. This is the kind of determination that we as Clusterheads need to adopt.
Just my 2 cents...
Dragn
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Melissa
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I used to always be afraid of my next cycle, especially since I quit smoking. But now I'm not, since my last cycle was a surprise AND I made it through without smoking! 
Nope. I'm not scared. I just deal with it when it comes. It's part of my life.
love ya Roxy,
 mel
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seasonalboomer
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Re: Anger vs. Fear
« Reply #22 on: Mar 21st, 2006, 10:07am » |
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Maybe it's because I'm in cycle. (I can get a little more emotional when in cycle)
But, this damn thread is one of the reasons this place is so incredible.
Sean, as Randy Jackson says on American Idol, "props to you, dog!", "let's hear it for that post, from the dog pound!" "Oooh, Ooooh, Ooooh"
Honestly one of the most moving posts I've read.
And Roxy, what a great start for a thread.
I was just working on something yesterday which was building on a related theme that I'd like to juxtapose here, if you don't mind: (it's not done, but would love to have suggestions).
A sufferer manifesto.
- I will focus my anger at having this condition on the headaches themselves, not on my family members, friends, or work associates.
- I will remember that LIFE is lived in-between the “hits”
- When I say to myself or others, “I would do anything to not have to suffer from these things,” I will look seriously at myself to see if I am or have reasonably tried everything (or anything at all) to not suffer these things in the way I am.
- I accept responsibility for taking my own prescriptive medicine if that is the path I have chosen. If I miss doses that result in me suffering, I own it.
- If alcohol is my trigger, I will either a.) not drink when in cycle, or b.) accept total responsibility for the results if I CHOOSE to drink. I will also accept responsibility for a possible ruined evening if I choose to drink and the result is that my supporter and I have to leave early due to getting hit with a CH.
- I will not blame my parents, my family or my god for Cluster Headache. It simply “is” a part of your truth.
- I will not allow my Cluster Headache condition to define me. I am not (your name here), Cluster Headache sufferer, I am instead, (your name here), someone who happens to suffer from Cluster Headaches.
Any suggestions?
Scott
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seasonal boomer
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maffumatt
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on Mar 21st, 2006, 10:07am, seasonalboomer wrote:
- I will not allow my Cluster Headache condition to define me. I am not (your name here), Cluster Headache sufferer, I am instead, (your name here), someone who happens to suffer from Cluster Headaches.
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This is the most profound statement and best advice I have ever read here. Don't let it define who you are.
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Ghost
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Re: Anger vs. Fear
« Reply #24 on: Mar 21st, 2006, 10:29am » |
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Great point this is a welcomed post. I too was episodis for many many years b4 going to the dark side. Once you cross over as you (all of you ) have said anger works so much better. Fighting is much more preferable than hiding. Yes i was a hider during several episodes and when in cycle did not want to go anywhere or do anything. Again GREAT thread Roxy. Thanks for reminding me why I m here.
Mike
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