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        New Message Board Archives >> 2004 Posts >> Psychological Repercussions & You, CH.
        
(Message started by: notseinfeld on Jul 8^th, 2004, 12:06am)

Title: Psychological Repercussions & You, CH.
Post by notseinfeld on Jul 8^th, 2004, 12:06am

I rememeber as a boy the strange impulse to point a finger at someone with a visible handicap. (For the record I only actually did it once!) Almost to let dad/mom know that they were there as if only children could see handicapped people. (I see handicapped people)

Now, as an assumed adult, though our condition not exactly visible, I wonder what the influence is of our perceived perception of how others' view us. Taking a sporting guess I'd say my inner child :) prefers tighter spaces. This disease has changed me. How bout you?

Title: Re: Psychological Repercussions & You, CH.
Post by alleyoop on Jul 8^th, 2004, 12:45am

Damn good question, although I'm not sure I know how to answer it. The short answer is 'yes', it's changed me. Although wheather for better or worse, I'm not really sure. I'd hope and like to think for the better. Although you could probably find people that would disagree, I believe this disease has given me more humility if nothing else.

As far as what others percieve of me goes, I'm not really sure. Although I try not to tell any more people than necessary, that has gotten to be a fairly large group(family, friends, people at work). I feel pretty confident that family and close friends understand, at least for the most part. I am sure there are those though who say(behind my back), "I wouldn't let a headache slow me down."

I think that's about as far as I can get with it right now (can I get up off the couch now ;;D). Like I said, that's a damn good question. You've got me thinking!

................................alley [smiley=huh.gif]

Title: Re: Psychological Repercussions & You, CH.
Post by Lizzie2 on Jul 8^th, 2004, 7:40am

I do tend to let other people know because of the nature of my work. I'm a nursing student, and I feel other students should really learn about headache conditions, especially CH.

That being said, I do run into some problems. I was wearing sunglasses during our clinical postconference one day because my headache (migraine) was very bad (yes i know, the M word!). Well one girl asked me what was going on and I said I had a bad headache. Then another girl who I had become friends with pretty early on in the program rolled her eyes and looked at the other girl as if to say, "Figures" or "What a pain" or whatever..........

At any rate, I can read looks like that! They're not very uncommon. I know people think this is crap half the time, but it's not them who has to live with it. Some days that is hard to deal with because I don't have a whole lot of friends in the real world who can understand, but I've kinda learned just to ignore it as best I can.

Yeah it's definately changed me. In some ways for the better and some ways for the worst. I'd love it to go away, but I'm fine with who I am as a person. I don't think it is a handicapped personality as much as a handicapped brain!!

Lizzie :)

Title: Re: Psychological Repercussions & You, CH.
Post by alleyoop on Jul 8^th, 2004, 8:02am

on 07/08/04 at 07:40:44, Lizzie2 wrote:

Yeah it's definately changed me. In some ways for the better and some ways for the worst. I'd love it to go away, but I'm fine with who I am as a person. I don't think it is a handicapped personality as much as a handicapped brain!!

Lizzie :)

Well said Liz! [smiley=thumb.gif]

...................alley

Title: Re: Psychological Repercussions & You, CH.
Post by notseinfeld on Jul 8^th, 2004, 9:28am

Thanks you 2 brave posting souls: these were just the kind of well thought-out responses I was hoping for! Yeah.

It's not easy to admit being mainipulated by a power(s) greater than yourself-- especially one as ruinous as ours. Thanks.

nots

Title: Re: Psychological Repercussions & You, CH.
Post by alleyoop on Jul 8^th, 2004, 10:21am

Hey nots,

You're more than welcome. Why don't we get together sometime, neighbor. We could have a real discussion!

...................alley
;)

Title: Re: Psychological Repercussions & You, CH.
Post by nancyc on Jul 8^th, 2004, 10:33am

Do I think this disorder has changed me....definetly....alot of it due to the fact that those around me, especially on the job, dont understand it. I have found that because of this, I started isolating alot...I stopped talking to people about chs where I work because of the "eyerolling". THe funny part is that I am a Nurse. IF people in the Health care profession, especially the Mental Health part where I work, don't understand, that is scary.
But then I found ch.com and that has helped me in so many ways. Here I found out that I could talk about the pain and YOU would understand and not judge me or roll your eyes at me. I felt compassion here and knew if I needed you that you would be there for me. I also, began to understand this demon. When I get depressed , I have friends here that see it, and reach out to me. I was not going to be able to make the convention this year until some angels here made sure I was going to get to come. Most of it was financial, some of it was depression...IT seems like sometimes I wake up everyday wanting to get all of my medications out of my system...but I know what happens to me when I do..I still fight breakthrus and am constantly adjusting meds just to be able to work....So I fight the depression that comes with the medications now.....Has this disease changed me...Hell YES....I found you guys and I am so grateful for that but I also have found that at home I have built a tiny little space for myself to hide because of it. I fight for my freedom everyday from this because I know I am the only one that can take control ot that. Unfortunately all the folks that do understand about chs, do not live near me, family or chs buds.
Thanks for this post. I cant wait to see all of you guys in Nashville to get some well overdue HUGS! smiles,nancyc

Title: Re: Psychological Repercussions & You, CH.
Post by thomas on Jul 8^th, 2004, 10:39am

Yes, it has changed me as well, I now know what fear is, I know the meaning of having no hope, isolation, sheer terror, uncertainty, despair, terms I'd never known before. It has expanded my emotional range. Gift, I think not.

Title: Re: Psychological Repercussions & You, CH.
Post by Samantha_Smith on Jul 8^th, 2004, 10:52am

If it weren't for cluster headaches I never would have bent my knee before the Lord and called out His name. Because of cluster headaches I was saved. Of course CH has changed my life in other ways, but they pale in comparison to my salvation. Flamers to the right. Supporters to the left please. Thank you. Great topic.
Samantha

Title: Re: Psychological Repercussions & You, CH.
Post by Tiannia on Jul 8^th, 2004, 12:04pm

Cant answer this in a short way.

I have delt with a lot of physical pain in my life. I will not bore anyone with details, but share a little bit of one issue. (Although it is a short life compared to some of almost 33 years this Sept). But there where times when I was still up in Reno and my arthritis was out of control, that I would lie in bed screaming at the pain and asking why me. There where many times when I just asked that this end, begg that I be allowed to move on and not have to feel the constant burning unstoppable pain.

It was to the point of being almost disfiguring. I spent almost 3 years in braces for my hands because it was the only way that I could function on a daily basis. My College final exams my Senior Year where mostly hand written essays. At the time, I had to set with a TA from each class and read my essays to them as the writting was so bad that they could not read my work. I had children start and point, hell I Had adults stare and point. I remember once going grocery shopping and dropping a half gallon of milk on the floor because my fingers could not hold it. It broke open and flooded the entrire area. At the age of 23 it was very embarrasing and sad.

Now you all know one of the big reasons I moved to Las Vegas, it only acts up maybe once or twice a year and is just more painful that incapacitating.

But to the point. There where many times when I wondered what I had done in a past life to deserve this or that. That I ask and try to make amends for what I have done. That is is not by my own actions that I have brought this upon myself.

But the bottom line is, I know that the strength that I have now, part from what I gained dealing with arthrisits, other physical illnesses and injuries, Motherhood ;), and now CH, is all for a reason. Do I feel that it is a blessing, no. Do I still want to strangle someone everytime I see their eyes roll because they see me with my sunglasses on, or they come over to my desk and I am covered in sweat and preparing for a fight with the beast? No. But I have learned that there is a great dam, wall, fortress, whatever it is that you want to call it that I can withstand anything.

Like Thomas said, I have felt alone in a way that I never throught possible. It is a totally different type of pain and ways to deal with it, when it is constant verses coming and going. But at least I KNOW that each and every HA will stop.

That all was even longer then I planned, but there it is.

Title: Re: Psychological Repercussions & You, CH.
Post by vig on Jul 8^th, 2004, 2:35pm

I would say it has definitely changed me.

First, because I have to adapt to using different brain skills. (Since many have left, like memory.)

Second, I'm hoping it helps me be more compassionate and empathetic (empathic?). Now I can look at a handicapped person and say to myself.... Could I live with that? Often the answer is no! I'd rather have this. It's mostly concealable. But that's why most people don't understand our condition, because we're normal most of the time.

I've also come to expect that those around me will not understand what we go through, and I can't be aggravated about it anymore. It's our job to teach others about our condition and how to 'manage' with us.

....and lastly, it made me largely fatalistic. I can't mold the world to fit in with me. I have to change to fit it and go with the flow.

Oh, and my tolerance for conventional pain has skyrocketed!

...and finally... to quote Lisa Simpson:
"I no longer fear hell."

Title: Re: Psychological Repercussions & You, CH.
Post by Big Dan on Jul 8^th, 2004, 2:42pm

on 07/08/04 at 14:35:14, vig wrote:

I can't mold the world to fit in with me. I have to change to fit it and go with the flow.

On the flipside, you can always go against the flow, and tell the people that don't like it to get over it.

.... That's what I do... and I does it quite well....

-Big Dan

Title: Re: Psychological Repercussions & You, CH.
Post by vig on Jul 8^th, 2004, 2:44pm

or maybe I'll just make the mold work for me!

(psilocybin joke, get it?)

Title: Re: Psychological Repercussions & You, CH.
Post by stuey on Jul 8^th, 2004, 2:49pm

I can't imagine anyone not bein changed by clusterheadaches. Although I also cried to God on High I was shouting curses. As Thomas said earlier I learned what despair, hopelessness and isolation, true isolation was. Isolated because others can't really truly understand what you are dealing with so you feel like Rudolph on the Island of Misfit Toys. You can't very well place your hand on others and let them experience your pain although you would like to just so they will realize this isn't a quick fix a tylenol or aspirin will cure. I hear others say they have a headahces and I'm thinking to myself - no you don't - you have no clue what a headache is. I have been blessed in that my clusterheadaches started in the age of tryptans. I can't imagine what it was like without imitrex injections. I won't go on and on, but I tend to sympathize with others more when I hear they have certain types of physical pain (herniated disc pain, etc.), but I do have to say I scoff at these "headaches" I hear others complain about. I know migraines are awful but these so-called terrible headaches you hear people walk around saying they're having I just have no tolerance for.

Title: Re: Psychological Repercussions & You, CH.
Post by echo on Jul 8^th, 2004, 3:04pm

I can see various ways that the SOB has changed me over the years.

I can work on a car, slip a wrench, and take chunks out of three knuckles and think nothing of it. Last year I had a the procedure where they run the camera from your thigh to inside the heart without any drugs. Hurt alittle going in, and a whole hell of a lot coming out, but I was the first person, according to the head recovery nurse that was able to sign myself out. Everyone else wants to be put under.

I have little time for kids whimpering about a sliver which can probably seem heartless to the little ones.

I can play hockey with knees that are shot, joints that are sore from getting older and still get up and move the next day.

I can handle a 10 -- but prefer not to.

Don't know what the rest of my life will be like. But if this is it -- it wasn't worth the ride.