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        New Message Board Archives >> 2007 General Board Posts >> am i gonna have this forever?
        
(Message started by: schaan on Nov 14^th, 2007, 12:46pm)

Title: am i gonna have this forever?
Post by schaan on Nov 14^th, 2007, 12:46pm

is there an approximate age that ch goes away?

is there an end in sight?

im 40 now and have been having these since about 33

is there an age they subside?

just want to know when life will be worth a shit again.

im not even the same person when these things hit.

i read my posts and im just a whiney punk in pain, and thats just not me......

id even be happy if the subsided by 70.

at least id know its only 30 years away.

Title: Re: am i gonna have this forever?
Post by Rosybabe on Nov 14^th, 2007, 12:52pm

I have had this for 24 years...I don't want to think what the future holds, I rather live day by day and enjoy the most I can out of it instead of worrying about something that is not in my hands to change.

be positive, stay positive and just positive things will be in your way...

Hang on Schann, you are not alone...

Hugs

Rosy.

Title: Re: am i gonna have this forever?
Post by George_J on Nov 14^th, 2007, 12:58pm

I'm not sure that anyone can answer this question.

Personally, I'm episodic, and I've had these since I was 13. The cycles have gotten farther and farther apart as I've gotten older (I'm 53 now). I've gone from cycling twice a year to once every three years the last three times. I'm a year and a half into remission right now. So--are they winding down? They seem to be. Do I believe they're gone for good? Don't know.

I think the key thing is--do you have an effective means to control them? If so, you are fighting this thing to the best of your ability.

Thinking about what may happen in the future is useless. You may always have them, or you may have had your last one. No way to know, and nothing to do about it. I know you've heard this before--but one day at a time, one hit at a time. It's not just the best way to deal with them, it's the only way.

Best wishes,

George

Title: Re: am i gonna have this forever?
Post by seasonalboomer on Nov 14^th, 2007, 1:04pm

the question you really have to ask is, "how can I be a less of a whiny punk in pain? Or, what can I do in preparation of CH returning to retain more of the me that I and those around me know and love?"

That puts a goal in front of you - something to achieve in spite of these damn things.

They might never go away, but your approach to dealing with them and how much of you you retian throguh them can.

Scott

Title: Re: am i gonna have this forever?
Post by echo on Nov 14^th, 2007, 1:22pm

With the mutant bastard that is CH who knows. Anyones guess or hope is as good as anothers. I've been hanging on for 35 years and the beast he keeps changing on me. Eposodic to chronic and back and forth several times over the three decades. Live life while you can and don't spend too much time looking over your shoulder. That's what "ole fuckstick" wants you to do so I can always mess with your mind.

Hang in there.

The only alternative is a dirt nap.

Title: Re: am i gonna have this forever?
Post by Tiannia on Nov 14^th, 2007, 3:17pm

I have not had them as long as other. Mine only started 5 1/2years ago, I was 31, and I started out chronic. There where times when I did not recognize myself at times over the next 3 or so years years. But in between the hits, when I was sane again, I knew that I had everything I could want, and I was not going to let some f'ing bastard thing take that away from me.

I have lost a job because of these things, I have taken some meds to try and help that made me a totally different person, and sicker then shit on top of them not stopping the hits. Let one doc do an out-patent surgery to strip my occipital nerve to see if it might give me some relief., which I am not sure why in the F was I ever dumb enough to let him do that, but at the time I would have done anything to get a break. .

I would cry and hate myself because of how much it affected my husband and kids. There was a time when I thought we might split because of them, and I hated the fact that my son only knew a mom that got these f’ing things. That he would sit in my lap and rock with me, while I was getting hit and my daughter would immediately know what was happening and go get the ice packs and the imitrex shots. That at the age of 7 she knew how to set them up for me if I did not have one already to go. What kind of a mother does that to her kids? But then I realized that my kids and my husband are what gets me thru these. That if it was not for them, I might have given up a long time ago, but I didn’t

But CH did not win. I have found a preventative that works for me. There has been 1 time that I did not get it filled on time and have run out. And 1 other time that I did not get it picked up cause I was working late and the pharmacy closed. And I got hit for 3 days of k9’s and 10’s and I am right back in his clutches. There are still times that I get hit randomly. Usually not a k10 (but I do still get them every now and then as well), but enough to let me that he is still there and ready to f’ck with me if I let him. So when he does climb on and go for a ride, I fight him. And when the hit is over, I can look at myself in the mirror and see my sagging eye, the running nose, the swollen face and know that he lost again.

I am a harder person now. Much more cynical then I used to be. But this place, these people here, have helped me in more ways then I could have ever hoped when I first came here. From just telling me that I am not a bad mom or wife, that they will send vibes, that they understand, to kicking me in the ass when I was sitting on the god damn pity pot and needed to wake up and take control of my life.

I know that this does not answer your questions, but I hope that you can see that “Life is worth a shit.” Because you are stronger then the beast, demon, f’er or whatever you want to call him, her or, it.

I hope that you find a good doctor that will help you find something that will allow you to fight him.

To be extremely honest with you. Not one person cares if your posts when you are getting hit sound like a whinny punk. We all understand. That is the wonderful thing about this place.

PF Wishes,
Tia

Title: Re: am i gonna have this forever?
Post by E-Double on Nov 14^th, 2007, 3:22pm

Life is what you make it so regardless of clusters, live it well.
Period. End of sentence ;)

Title: Re: am i gonna have this forever?
Post by schaan on Nov 14^th, 2007, 3:27pm

thanks sooooo much to all

a dirt nap as you say is something i decided against many years ago before ch.

im starting to get control on this and i feel the recent rounds of meds have actually been keepiongit at bay and ive been careless as of late.

once i get this oxy thing going and take my meds regularly instead of during episodes it might help

really i appreciate it and ill try and keep it in perspective, just having folks around who dont think im full of it and a wimp help alot.

schaan

Title: Re: am i gonna have this forever?
Post by Guiseppi on Nov 14^th, 2007, 3:30pm

We understand, which is why we'll kick you in the butt if you go pity party on us!!! ;;D Even though we all do it once or twice a cycle. Edouble put it best, it is what it is, stay ready for it, enjoy the pain free time and always be ready to do battle. The best part about staying armed with my 02, trex, and my prevents, is I am not afraid of it like i used to be, it's definitely a fair fight now!!!!

Guiseppi

Title: Re: am i gonna have this forever?
Post by aprilbee on Nov 14^th, 2007, 3:34pm

I've had them since I was 12, I turned 33 this year, and this is the first time I went an ENTIRE year without CH, it has been wonderful and I have taken advantage of every moment waiting for the day it comes back, waiting for that dull achey shadow that is a sign of terrible things to come.....AND my last two cycles lasted twice as long, one right after another, so I got a dose of what chronics go through (bless your hearts)....I'll just echo what everyone said here.

if you are thinking about the future you'll miss the present, and that is the BEST place to be....I hope you get some relief soon....just enjoy your PF time as best you can!

Title: Re: am i gonna have this forever?
Post by purpleydog on Nov 14^th, 2007, 4:13pm

As Eric said, life is what you make of it. Live for the good moments, the pain free time and in the present. Fight the beast with your arsenal when the times roll around, then move on with the rest of your life.

Try to keep a positive attitude. And yes, eventually, some people go into remission, but the ages vary, so it's not something you can plan on. My grandmother is 85, and she still gets them. They are very rare now, but every once in a great while, she gets one. Then there is someone on this board who is not too much older than you who hasn't got hit in years.

It's all in how you deal. :)

Title: Re: am i gonna have this forever?
Post by DennisM1045 on Nov 14^th, 2007, 4:23pm

Hi Schann,

I’m sorry the beast has you at wits end. We’ve all been there at some point or another. No one can tell you when or if the hits will stop coming. But you knew that. All you can do is to keep looking for your magic bullet and venting here. That’s what we’re all here for.

Eventually you want to get to the point where you can deal with the beast and live ‘in spite of him’. Every time I do something normal I’m saying, up your ass beast. I’m still here, I’m still living, you haven’t taken it all from me yet. Then, when my cycle peaks, I’m crying and dancing like the rest of us. Those are the darkest days. I just hang on to the knowledge that it won’t kill me and, because I’m episodic, I know PF days are somewhere just ahead. I just never know how far ahead though

The key is to keep looking under every rock for the magic potion that’ll knock the intensity down to something you can live with. Don’t ever give up because, while we’re never PF for long enough, there is magic in what PF time we get.

I hope you get it soon my friend.

-Dennis-

Title: Re: am i gonna have this forever?
Post by BarbaraD on Nov 14^th, 2007, 4:44pm

I don't think we can pin-point an age. If so, I'm older than dirt and should be thru with them..... Now tell that to the DEMON!!!

We all get on a pity party every once in a while. Why me? What did I do to deserve this? But then we get over it and life goes on.

I've been doing good for several months (I'm chronic) and then Mr. Demon decided I was just having too much fun and decided to put a halt to some of it. He started messin' with the weather (a good trigger for me - the barometer). The last couple of weeks I've been feeling real sorry for myself (I've also had pneumonia which didn't help my feelings any at all). But now I've about had all the pity (if you'd call it that) from my family I'm gonna get so life goes on.

What I do when I get really down is try to start a feud on this MB. There's a political debate going on in a different thread if you wanna join in. Doesn't matter which side you're on - just get an opinion in - (don't take anything said personally - just argue). Right now I think I'm arguing both sides, but it cheers me up and is something fun to do. Might try that to get out of the dumps.

Hope Mr. Demon leaves you real soon and you're back to your cheerful self.

Hugs BD

Title: Re: am i gonna have this forever?
Post by schaan on Nov 14^th, 2007, 5:52pm

hey now theres an idea argue with someone else than my wife, she might appreciate it. dont know about politics though...... im always right lol.

good day today btw

better than this am

thanks

Title: Re: am i gonna have this forever?
Post by KingOfPain on Nov 14^th, 2007, 5:55pm

Possibly.

Title: Re: am i gonna have this forever?
Post by PollyPocket on Nov 14^th, 2007, 6:16pm

on 11/14/07 at 12:46:22, schaan wrote:

is there an approximate age that ch goes away?
22 years episodic. I'm 44. Not looking likely at this point

just want to know when life will be worth a shit again.
It'll be worth a shit again when you make it worth a shit again.

im not even the same person when these things hit.
nope, you can't be. You got a beast in your head. But you're not the same person you were before ch. Now you're stronger.

i read my posts and im just a whiney punk in pain, and thats just not me......
we've all been whiney punks. It runs in the family

id even be happy if the subsided by 70.
Be happy, even if they don't subside by 80.

at least id know its only 30 years away.
So why wait 30 years? Live life now.

All said with gentle love,
Jen

Title: Re: am i gonna have this forever?
Post by ski2k on Nov 14^th, 2007, 6:29pm

Yup... You're a whiney puke! But guess what??? So are the rest of us !!!!!!!! ;;D ;;D

That's what we do. We vent, we pray, we send positive vibes, we bitch about how bad things have gotten, we brag about how good we have it, we learn from our own and others experiences, we learn from our own and others mistakes, we support, we help, we love!!!

Here's something to look forward to: Sometimes the beast just goes away!!!!! There have been people who have gone into "permanant" remission! If you don't stick it through the rough times, you'll never find out if there's an end in sight for you!

Best wishes,
Adam

P.S. Keep working on getting that O2!! ;)

Title: Re: am i gonna have this forever?
Post by Annette on Nov 14^th, 2007, 6:46pm

We supporters are also going to have this forever, if we decide to stay with our CHers.

CH doesnt just affect the life of the CHers, it affects the lives of people living in the same household too.

We as supporters dont feel the physical pain in our heads, but we get the same pain in our hearts and its hard to say which one is harder to bear at times.

I am committed to my husband who has CH. That means I have to come to term with and accept that I will have this forever too, at least as long and as often as he has it. I also have to learn to live my life with it, making whatever adjustments necessary to do so.

I need to learn to be more patient, more understanding and most of all to put my own needs aside when he is in cycle. I will need to learn to run the household mostly on my own when he gets hit often and hard. I need to learn how to cope with my own pain and sense of helplessness. I have to learn to live my life and our lives to the fullest when he is painfree too.

Even our children are going to have this forever. They need to learn to accept that daddy will not be able to go play soccer with them when he has a headache. They need to learn to not bother him when he is pacing the room sucking on oxygen. They need to learn to go to their rooms and play quietly when they can hear dad crying in the bedroom. They also need to learn to go give him a hug and a kiss once his headache is gone, because it helps him feel better.

We are all in it together. We must all learn to go on with life the best we can with whatever weapons, techniques that we have.

Together we fight. Our lives are worth it!

Title: Re: am i gonna have this forever?
Post by Charlie on Nov 14^th, 2007, 10:21pm

I know how you feel. We all do. >:(

I can't help but believe in an age factor. I got mine in 1969 and it disappeared at the end of 1991 so after about 23 years, the beast lost me and so far he hasn't found his way back. I was 45 at the time and it's going 16 years. I still can't believe it.

Hold on. You never know.

Charlie

Title: Re: am i gonna have this forever?
Post by artonio7 on Nov 15^th, 2007, 2:03am

I hope it leaves as quickly as it appeared.

with warm regards,
Tony

Title: Re: am i gonna have this forever?
Post by Mosaicwench on Nov 15^th, 2007, 8:34am

LIFE happens between hits.

Minimize the hits with whatever works and maximize the "between" times.

This is my supporter's mantra.

Title: Re: am i gonna have this forever?
Post by chewy on Nov 15^th, 2007, 8:37am

Read my tag line.

Title: Re: am i gonna have this forever?
Post by schaan on Nov 15^th, 2007, 6:18pm

thanks to all the gentle love thing helped me understand that the stern words are merely the right ones that hurt a little.

so its not just about the attacks its also the time inbetween

right on
schaan

Title: Re: am i gonna have this forever?
Post by Witches Brew on Nov 15^th, 2007, 7:47pm

on 11/15/07 at 18:18:05, schaan wrote:

so its not just about the attacks its also the time inbetween

This board exists because of the 'between times." Many posters here can help you manage, outsmart, and hopefully tame the beast. Many can empathize, sympathize and whatever-ize to keep you going.

We supporters gently remind of the importance of "between times." . . . cuz that's what most of us live for.