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        New Message Board Archives >> Jan-Mar 2003 >> How to keep on going
        
(Message started by: oringkid on Feb 18^th, 2003, 2:00pm)

Title: How to keep on going
Post by oringkid on Feb 18^th, 2003, 2:00pm

Been trying to catch up on the board lately and have noticed a few "how do I cope?" "Why go on?" "How can I live with this" type posts.

Here is the answer:

You learn to live for the moment. Don't look for the next hit before it hits. Don't worry about when your next cycle is going to hit. Know that the pain will go away, even if it is only gone for 20 minutes...that 20 minutes is what counts! If you dwell on the pain and anticipate it and fear it, your good times, your pain free times are at least tainted and at worst ruined. This living for the moment works not only for episodics but for chronics as well. (Betcha Jonny would agree)
If you are spending your pain free times worrying about or fearing the next hit, you are missing out on life.
When the pain comes...deal with it with the tools you have. When it goes, put it behind you, forget it and live your life. When it comes again, you deal with it again.

Don't let fear take over your life. I have been dealing and living with CH for almost 30 years. Live for the moment.

Sherry

Title: Re: How to keep on going
Post by echo on Feb 18^th, 2003, 2:03pm

Nicely put sherry. I does get difficult to see the light at the end of the tunnel from time to time, and a positive attitude tends to help improve the tunnel vision.

Title: Re: How to keep on going
Post by jonny on Feb 18^th, 2003, 2:06pm

Great post, Kid!!!

...................jonny

Title: Re: How to keep on going
Post by JDH on Feb 18^th, 2003, 2:09pm

Read it, know it, live it! ;)

Great advice although not always easy to do.

Nice post Sherry.

Jim

Title: Re: How to keep on going
Post by Ann on Feb 18^th, 2003, 2:09pm

Can I hear a "HELL YEAH"?

HELL YEAH!

Excellent post Sherry!

hugs
Ann

Title: Re: How to keep on going
Post by Mark C on Feb 18^th, 2003, 3:48pm

http://www.animationonline.com/gifs/bRqENs.gif

Title: Re: How to keep on going
Post by Jarvis on Feb 19^th, 2003, 12:50am

There is the answer........ "AMEN"...... 27 years and the only definate I know for dealing with clusters is the gospel according to sherry. ......... mj .......

Title: Re: How to keep on going
Post by jmorgan52 on Feb 19^th, 2003, 9:17am

Nicely put Sherry

But I guess those like me and you (and all the regular posters) who still visit this site every day even when pain free are always a bit concerned (if not worried) about when the next CH is going to hit. It is sad to say but after 30 odd years of CH this bastard plays a big part in my life and is always near the surface of my thoughts at some time during the day. I am slightly obssesed by this affliction. I hoard imigran injections. I never go anywhere without them. How can we forget the pain?

John

Title: Re: How to keep on going
Post by Roxy on Feb 19^th, 2003, 9:46am

Sherry,

Mark said it best....... ;D

FUCKENEH

John: You can't live your life worrying about when the pain is going to return. If you do that....it will consume you. You want to control the beast....not let it control you. And you can control it. We all hoard imitrex....yes, we never go anywhere without it. I would trade my firstborn for a shot at times (well, I'd probably trade him for a lot less, but.... ;)). But, I try really hard, when I'm PF....to not ever dwell on it. If I get hit.....I get hit....oh well.

The pain is uncontrolable.......but, how we let if affect the lives we lead...that is up to us.

PFDAN

Tracey

Title: Re: How to keep on going
Post by Jill on Feb 19^th, 2003, 10:08am

Hey there.....

I havent been posting much lately and I am sure that all can guess at why....the damn beast. >:(

However, I read this thread this morning and so many thoughts ran through my head. It seems so much easier to say to live for the moment, take in the times that you are painfree but that is not easy to do....it is almost impossible for me.

How do you enjoy an hour of time when not being hit hard, spiking, and enjoy it?

How do you not fear the next hit when you are almost certain that it is going to be a Kip 10 or so?

How do you not ask the questions, "what is the point," "Is life really worth it," and "How in the world can I withstand another hit?"

What life is there when there is all of this pain and it comes so sudden, so frequent, and so hard? My life, this may just be me, revolves around this pain...it controls me....what else can it do?

Everyone seems to agree with this, takes in stride and they are able to do it. Why cant I? I am so exhausted right now that to even post takes energy.....is that a life to have?

Not to worry, this post may sound bad, I hold onto everyone here for support and for hope. I lean you all more than you know, that is what gets me through. If I relied on my mindset, well, that would be bad.

This has become longer than I could have imagined, sorry for that but I really needed to say this and maybe this wasnt the best way but it was here..... :-/

Thanks for everything,

Jill

Title: Re: How to keep on going
Post by cootie on Feb 19^th, 2003, 11:00am

Hi Jill.........am hopein your cycle just ENDS and you can be totally PF.......sounds ta me like it's long over due for ya and well deserved.....good luck.....fingers crossed ! Pam-da-honk-master

Title: Re: How to keep on going
Post by oringkid on Feb 19^th, 2003, 11:34am

Jill, it is NOT easy. It is something that you have to work on all the time. It may come easier to some than others. But it is a mindset. One you have to conciously and conscienciously adopt. You basically have to "cop an attitude" with this.

You have to say DAMNIT! I will NOT let this ruin me or run me. As soon as the pain BEGINS to recede you say "FUCK YOU!! I'm taking over now." Do something you want to do. When the pain comes back, you deal with it with the tools you have and when it starts to recede...you pick up your life where you left off and go with it. When the beast finally hands a pf moment to you, pick it up and run with it!!

Worrying, fearing, and spending your pf moments just waiting for the next attack will NOT STOP THE PAIN FROM COMING. It is only ruining the pain free time you do have.

You have to make a concious effort to say...THIS IS MY TIME!!

It is hard. VERY hard. And you have to reach down to that thin core of steel that IS in you, below the exhaustion, below the frustration, the fear and desparation. Find that core of strength and USE it to take back your life EACH and EVERY time the beast lets go. The more you do it the easier it gets...the stronger you get.

We all have this core of strength, sometimes it is hard to find it, but it is there and you can draw on it. Takes practice and work. But, the rewards are well worth the struggle.

To quote a line from Galaxy Quest (lol) :

NEVER GIVE UP, NEVER SURRENDER

Make it your motto, make it your mantra.

And remember...we are here for you.

Sherry

Title: Re: How to keep on going
Post by Jill on Feb 19^th, 2003, 2:30pm

Hey........

It is noon here and I am out of abortives for the day, no more pain meds that dont work but make me feel dopey and gets me through and the beast wont leave me alone.......been a hell of a day already.... >:(

Just wanted to add one more post on this thread and then I will leave it alone. ::)

Thanks for the words both Pam and Sherry......they help.

As for how to survive with this beast, I hear what you are saying and they are powerful words. For many, this idea or mental state is easy.....for them, they should be grateful.

I dont want you to think that I am a quitter or that I dont want to beat this beast and get my life back to some better form cause I do....more than anything. It is just that everyday that I have to fight, every battle that I have to engage in, well, it gets harder.

In the beginning, I was stronger and I fought the battles such as you say and was able to look the beast in the eye and say, "Damn you!" and carry on with what I was doing, fight the next one when it came. But it almost been a year now (not long compared to many but I have been hit hard) and I am drained. That "damn you" just doesnt come anymore and now it is a matter of waiting for the next one....... ???

I understand that this waiting wont make the pain stop, wont help me at all but fighting the exhaustion, the desperation, the fear and all of that is more than I can handle. Guess that that is just me...... :-/

That is all, I wish that I had the strength that others show and that I could fight as others have. You all are a true inspiration to me and those that have fought for so long, with no breaks......I wish I had your power.....

Thanks for everything....

Trying and fighting hard,

Jill

Title: Re: How to keep on going
Post by CathiP on Feb 19^th, 2003, 3:27pm

Jill- Please reread what Sherry & Roxy have said- YOU CAN DO THIS!
If the question is really WHY....I can answer that one- you have goals- aspirations, and all the intelligence to reach your goals...you also have proven to me you have the strength and the fire inside you to get through....so, you need not ask "what's the use"- it's for your LIFE. We can all stand beside you, we can support you totally, and, in exchange, all anyone asks is that you stay strong!
Jill, I want you to redirect your mind for awhile. In between hits, go walk in the sunshine, watch a movie, grab a deck of cards, or , better yet, WRITE, or get out your camera. If it's only for 5 minutes, it's 5 mins. the beast is NOT stealing from you. It's not about making the hits go away....it's about dealing every day. Focus on the PF times.....you can, darlin'- just know that.

Oh, and Jill? You DO have the strength!
You know how to reach me.
Cathi

Title: Re: How to keep on going
Post by Ann on Feb 20^th, 2003, 9:39pm

Jill,

I understand what you are saying and trust me, a lot of us have been there. Reread Sherry and Cathi's posts over and over again. They are dead on!!
When the beast lets go of you, no matter how long the bastard leaves, take advantage of that time. Do something for you..something that will bring a smile to your face, something that will bring on a big belly laugh and remember that feeling. Keep it with you until you get hit again. When it's over...start the whole process over again. Eventually it will become easier and you won't even realize that you're doing it. Your mood will improve, you won't feel so depressed and scared all the time. You will feel better mentally in not physically. But give yourself time. This does not happen overnight. And lastly, don't be so damn hard on yourself! God, we all feel like shit...it comes with the territory, but to survice this damn afflication, we have to move beyond that.
I'm sending you positive vibes, accompanied with a huge belly laugh. I hope you feel it all the way down South!

hugs
Ann

Title: Re: How to keep on going
Post by kim on Feb 20^th, 2003, 10:11pm

ThanKs Sherry,

Good Post. :) :) :)

Title: Re: How to keep on going
Post by fubar on Feb 21^st, 2003, 12:09am

Jill,

Before this started, if someone had asked you if you could survive the hell you've been through already, you would have laughed at them. Everyday you go farther into territory that you've never seen before and it seems like the 'most' you can take. Well, guess what? It is. You raise that bar everyday. You prove to yourself, everyday, that you are tougher than you ever imagined.

I know you can't be convinced it will end, and I'm surprised that everybody here is trying to convince you it will end. Truth is, you've reached a point I'm familiar with where the only proof you can accept is the actual 'end' of the pain. So, forget about that.

Every time the beast attacks you, and you survive, you've gained strength and character that never leaves you. It actually raises the bar for you and it can never come down. Imagine the empowerment, KNOWING you are tougher than 99% of the people on the planet! You have the mental fortitude to withstand inhuman punishment and ungodly torture. If you can see this and know it's true, you might be able to cope a little better. That's the best you can hope for until it ends or give you a solid break. Simply wishing, begging, pleading for it to end somehow is simply useless (I'm not saying that's what you do, btw)

-Fu

Title: Re: How to keep on going
Post by tanner on Feb 21^st, 2003, 2:29am

3:00 am, spikes about half an hour apart, o2s not working :(

but a greatly needed and accepted post "kid" with a # of good followups...... tim

Title: Re: How to keep on going
Post by catlind on Feb 21^st, 2003, 8:19am

Jill,

I hear you, loud and clear I hear you. I can't tell you how many times I've cried and said I can't do this anymore. The number of times I've said that's it, I give up. Actually had a foolproof plan in place. But the pain does end, never soon enough, never long enough, but it does end. Everything said so far is wonderful words of wisdom. Heed them as best you are able. The exhaustion makes it near impossible to continue the battle. Your will has been tested and taxed and you are at the end of the rope....do what Charlie says, tie a knot and hold tight to it. We are the knot in your rope. And with our support and your strength, you'll win the battle, and together, we will all win the war.

Easier said than done for sure. But we all have the strength, if we didn't, we wouldn't be here, fighting and helping each other, and continuing on the search for a brighter future for all CH'ers.

You are in my thoughts Jill, it is a difficult and desperate road you are on at this time. Me telling you it will get easier doesn't make it feel any easier, and it's difficult to believe, but even if you get the slightest victory at this point, take it and reward yourself for being the victor and not the victim. I know the victories are few and far between right now, but look deep inside, and you will find them. Each time you awake to a new day, you won a victory. Make yourself a trophy for each day if need be, so you can physically see, just how many battles you have fought and WON!!!!

Hang tough - we'll all win
Cat

Title: Re: How to keep on going
Post by domm on Feb 21^st, 2003, 11:16am

What a truly inspiring series of posts ;D

Title: Re: How to keep on going
Post by Jill on Feb 21^st, 2003, 3:18pm

Wow.....

Just wanted to add yet another post to this thread, how could I not? :-/

Thanks for all of the encouraging words and all of what is said could not be anymore true. I remember when I was told how well I could write but, geesh, so you can you all.

I cant imagine how I made this far but for right now I am not going to argue with that. It may be strength as some say or it may be luck or something like it (that is what I bet on). But who really knows..... ???

Everyday I may raise that bar but how high can it really go? My body is so weak right now, getting hit takes a tremendous toll on it each time and now the clusters have changed (and not for the better). But, I keep fighting, just as everyone else and I keep saying that in part to convince myself too..... :-/

And I think that Fubar said it best when he was talking about seeing an end in sight, that light at the end of the tunnel. There is no way right now that I could be convinced that it will end (sorry) and that light for me is a train heading right towards me..... ::)

Thanks to everyone for this thread and I am sorry that it turned to me. It truly is inspirational and one that may be saved (will be) so that it can be referred to when that push or that support is needed . That should go for everyone.....

Jill

Title: Re: How to keep on going
Post by brain_cramps on Feb 21^st, 2003, 3:55pm

on 02/21/03 at 15:18:22, Jill wrote:

I remember when I was told how well I could write...

I'm sure you still have it in you. Maybe its the distraction you need in those few pain free moments.

on 02/21/03 at 15:18:22, Jill wrote:

It may be strength as some say...

Absolutely. IT IS!!!

on 02/21/03 at 15:18:22, Jill wrote:

or it may be luck or something like it (that is what I bet on).

LUCK? I don't think anyone beats this with LUCK! >:(

on 02/21/03 at 15:18:22, Jill wrote:

Everyday I may raise that bar but how high can it really go?

The sky's the limit.

on 02/21/03 at 15:18:22, Jill wrote:

There is no way right now that I could be convinced that it will end (sorry) and that light for me is a train heading right towards me..... ::)

It may seem like that right now, but remember what was said about enjoying the PF time (belly laughs, etc...). It can't hurt to try (any more than it already is). Give it a try, just for a few days and see if you feel any different. I'm sure you will!

on 02/21/03 at 15:18:22, Jill wrote:

It truly is inspirational and one that may be saved (will be) so that it can be referred to when that push or that support is needed .

I agree 100%, so don't let that inspiration go to waste. USE IT! ;)

Hoping and praying for some pain-free time for you
grant 8)

(freezing my ass off, but smiling whenever possible :D )

Title: Re: How to keep on going
Post by das on Feb 21^st, 2003, 4:19pm

I once read somewhere that one should never be envious of things that one cannot have . In other words, being envious of anything (ie. in our case people without CHs) will only make you feel worse. The same applies to material things or your social status in life.

When you think about how hard CH can be to deal with, try thinking about people that are in the hospital suffering illnesses that are much worse or terminal. Think about people that don't have food to eat, people that live on the streets, or people that live without freedom.

No one can go through life without suffering, and it just so happens that we get a lot more practice in general than most...in the west anyway.

When in the midst of a cycle, it is hard to stay positive, but being negative about it will only draw you further into despair.

When I am not in a cycle, the last thing on my mind is CH. I usually don't spend much time here when I am feeling well, although recently I've decided to stick around regardless.

Title: Re: How to keep on going
Post by fubar on Feb 21^st, 2003, 4:38pm

Jill, I know it seems like the bar can't go any higher, but that's the whole point.

I was watching a show on Navy Seal training, and I saw a lot of parallels in what we go through, comparing it to their training. They go through unreasonable and 'impossible' training excercises that test their limits to the extreme. A lot of the tasks they must complete seems utterly impossible. For example, they had to swim some ungodly length under water, no matter what. A good 50% of the recruits failed the task and flunked out. The ones who passed were practically dead by the time they surfaced, many past out completely and had to be revived. Sounds fucking horrible to me (drowning phobia here, sorry).

The point here is, absolutely none of them believed it was possible, but by actually overcoming their idiotic self-imposed limitations on themselves, they achieved more than they thought possible. More to the point, they go away from that excercise with a new concept of what their limits are, and might even begin to realize there are no limits, only mental obstacles that can be suppressed or ignored, given enough motivation.

We face the same thing, many of us. We endure pain that is described as the purest, most intense form of pain a human can experience. Well, fuckin-A. I know *that's* true, so I know I'm one tough SOB. Every time the beast knocks me down, and I get back up, I win a battle. And I know I'm stronger than this beast, because I'm pretty sure I've had the worst it can through at me, it's all about endurance now. Even if it never goes away, I find strength in the fact that I know I'm going to live through it and the beast ain't gonna win.

Jill, the only thing I can say now is turn your pain into strength. It's not easy, but letting the pain drain your strength is easy, and you have to make yourself stop going down that path. Unfortunately, you are smack dab in the middle of basic training for clusterhead elite squad, and I know it sucks. You'll make it through cause you have to.

-Fu

Title: Re: How to keep on going
Post by oringkid on Feb 21^st, 2003, 8:39pm

Others can only give you encouragement and support. They cannot change your mind, change your mindset or change your life. The only one, the ONLY one who can do that is YOU. The only way you can do that is to quit finding reasons why you can't do something and figure out ways that you can. Now this sounds fairly simple doesn't it? It's not. It's not if you are used to finding those reasons why you can't. This may sound harsh, but sometimes you have to just take yourself in hand and take inventory. Save what works, throw out what doesn't and come up with new ideas, attitudes or outlooks and try again.

A good exercise would be to come up with one way you can do something for every 3 reasons you can't. Then 2 for every 3 and act on 1 of the 2.

But advice, no matter how good, is worthless if not taken, analyzed for relevance and acted upon.

You have to want this...we can't want it for you. The ball is in your court. Life is not easy even in the best of circumstances, but, it is beautiful, amazing, breathtaking, fulfilling, joyful, full of wonders and experiences that are well worth the hardships and pain. You never know what is just around the corner........

Sherry

Title: Re: How to keep on going
Post by kim on Feb 21^st, 2003, 9:06pm

All the bad stuff, and there's plenty of it for all of us in all sort of form and nature.....

That is the stuff that makes up who we are. You survive and then laugh your ass off at the sheer joy of passing through and moving on - this is how we acquire empathy -it's demands are not without a price.

Pain goes away. You must wait it out. If pain does not go away (EVER), you die..........

I only know all of you by the puter. It's hard to say everything in simple and boxed in terms. All I can honestly tell you is that each of us has a resovoir inside us that will meet any obstacle. It's evolutionary and elementary ;)

LIVE THE LIFE! Be happy and never give up!

PFDAN