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        New Message Board Archives >> Oct-Dec 2003 >> Not Gonna believe this one
        
(Message started by: atwitsend on Oct 13^th, 2003, 9:50pm)

Title: Not Gonna believe this one
Post by atwitsend on Oct 13^th, 2003, 9:50pm

Hey - Ya know a while ago I was venting about how my family didn't understand this "bastard" completely??

People would always ask me - "Doesn't Kevin know he has to go to work??" (I always loved that question)

Well my parents have a hard time understanding things unless it happens directly to them. SO today my Mom comes over & tells me & Kev that she is taking a few days off from work to help with our 2 little boys while the surgery takes place on Oct 27th.

So a co-worker over hears her talking about the procedure they are gonna try on Kev & she speaks up & starts shedding tears to my mom about her husband that has been suffering with this condition for many years?? And wants to know how Kev makes out & if it works??

Do you believe it ? Who knew someone was so close to home with ths same thing??- so now after all this time of trying to explain to my Mom & Dad - she seems more concerned today than she has ever been. Almost like it "real" now?????????

Makes me upset to think my parents think Kevin is "faking" the pain. No one knows - except all the people out here.

Sorry to vent - but no one around here understands.

No PF days in this house!!!

Just nightmare after nightmare......

Again I say AT WITS END!!!!

CHeryl :'(

Title: Re: Not Gonna believe this one
Post by Patrick_A on Oct 13^th, 2003, 11:24pm

Yup, My mom was a registered nurse. But she couldnt ever accept that my pain was that intense. She always thought i was exaggerating it or that my pain thresh hold was very low. I have news for those people, People who suffer with CH's have a very HIGH thresh-hold for pain. In fact i never take anything for a regular headache because i dont think its worth the effort.LOL!!

Patrick ;D

Title: Re: Not Gonna believe this one
Post by oringkid on Oct 14^th, 2003, 12:17am

Quote:

In fact i never take anything for a regular headache because i dont think its worth the effort.LOL!!

So true!

Sherry

Title: Re: Not Gonna believe this one
Post by Turts on Oct 14^th, 2003, 5:31am

Quote:

She always thought i was exaggerating it or that my pain thresh hold was very low. I have news for those people, People who suffer with CH's have a very HIGH thresh-hold for pain. In fact i never take anything for a regular headache because i dont think its worth the effort.LOL!!

My mun thought the samething, no threshold for pain. Thought I was just whinging about a "headache".

Then 1 night she caught me operating on an ingrown toenail myself with no anethestic : accept a coupla beers!!hehe.
I was mid cycle and that changed her mind about the pain threshold. Now I take her to neuro appointments with me to hear whats going on. I guess she how has an "appreciation" of the pain.

Title: Re: Not Gonna believe this one
Post by sandie99 on Oct 14^th, 2003, 5:48am

I certainly do believe it. :o
My mum didn't believe that I could have ha so many times during on day, but luckily for me, she does now. :)

But I have faced over and over again people who just don't get it and that includes many of my friends.
Ch isn't something to joke about. These days what I do is give this site's address and let them read all about ch. That'll teach them! ;)

Anyways,
pain-free days to everyone!

Wishes,
sandie99

Title: Re: Not Gonna believe this one
Post by nancyc on Oct 14^th, 2003, 10:34am

My mum did not take my chs seriously until i was trapped in a room with her one nite and got hit..funny thing was, i had never let her see me get hit...so ofcourse she did not know..Now, she knows what i go thru....she went to my new neuro/pain management doctor's appointment...she cried and begged the doctor to help me...she hugged the neck of this giant Nigarian doctor when he did...Only problem now is my mum is miles away when i get hit which is probably good cause she gets very emotional.....hard for her to be a supporter when she is not around...but she does her best and i love her for it...My son gets angry...and then tries to hug me when i get hit, this is definetly the wrong thing to do..As a kid, he handled it better..Used to give me imitrex shots and run to the drugstore to get them..But the older he gets, the harder it is for him...So, I isolate and push them away...then i reach out to you guys that know exactly what to do with me ...As far as friends here in S.C., I have pushed them all away...I built a big wall up so noone here would know what i go thru...I have found in the time I have been a clusterhead , that most folks who dont have chs think if you lay down and take an aspirin, you will be ok...In other words, they dont truly understand..and for me, this makes it worse.. ;Dnancyc PS. My dog, Toby is a great supporter..he just lays beside me and doesnt bark..

Title: Re: Not Gonna believe this one
Post by Hirvimaki on Oct 14^th, 2003, 10:59am

I've been blessed with a family (parents, siblings and spouse) who are not only empathetic and sympathetic of my CH, they are quite vocal in defense of me if anyone questions it. I guess because I have never let pain or discomfort dictate my life (I never stayed home sick from school, did not miss more than a week from work when I had abdominal surgery, et cetera) that when the CH started incapacitating me, they knew it was serious. When I told them it was the worst pain I have ever experienced, it gave them a perspective on CH (as I've said elsewhere, CH is worse than snake bites, gun shot wounds and high speed car wrecks).

I'm sorry there are folks out there that have trouble getting others to understand the seriousness of this disorder. I guess that is one of the reasons we are all here, to give that support that seems to be sorely missing from some people's lives.

Hugs to you and yours.

Hirvimaki

Title: Re: Not Gonna believe this one
Post by Cerberus on Oct 14^th, 2003, 7:52pm

When I tell my relatives about my CH I do get votes of sympathy, however, I still think they really don't understand how bad it really is. Sometimes I wonder if even Woobie gets it, yeah she has seen my fits and helped me a great deal with coping, but sometimes it still just seems to go in one ear and out the other as if its just a routine that spouses and loved ones go through to cope themselves. kinda like the horror of 9-11, it was so surreal that it was like watching a movie or wasn't really happening. Dunno........no real way to explain it to anyone that they would understand, without them actually feeling it for themselves. Even when medical personnel explain it, it is still so clinical that somehow it gets watered down when medically expressed. All the why's and how's get in the way of the reality of the pain............

there has got to be a better way ???

Ramon