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        New Message Board Archives >> Jan-Mar 2003 >> What kind of life is this
        
(Message started by: eileen on Mar 10^th, 2003, 8:49pm)

Title: What kind of life is this
Post by eileen on Mar 10^th, 2003, 8:49pm

How are we suppost to live?
I mean I can't drive because you don't know when it will strike,
I can't leave the house because I can't take the sun.
I can't sleep because well you know why,
My parents came and took my two year old so she doesn't have to witness this, My seven year old doens't ever want to leave my side
My husband is working like a dog to afford all the meds (that don't even work)
What kind of life is this????

Sorry just a little weepy today I can't do this any more I just don't have it in me.

How do CHC live because I am done and I am only 15 days in to a 37 day cycle and I am done.

Thanks for listening Eileen

Title: Re: What kind of life is this
Post by jonny on Mar 10^th, 2003, 9:01pm

HOW?

Because the other choice is out of the question, I have no kids so that makes it easier on me but that dont stop the pain.

You will get through this, I promise.....then you will get to do it all over again and you will get through it, again, I promise.

trust me.

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

Title: Re: What kind of life is this
Post by DeansGirl on Mar 10^th, 2003, 9:05pm

You must fight. You must not give in. You will make it through this. You MUST.

Praying for your PFDAN
DeansGirl

Title: Re: What kind of life is this
Post by farmboy on Mar 10^th, 2003, 9:06pm

Hang in there ! It dose get better. I think that everyone who has this affliction has the same feelings that you have right now. I know i wonder sometime how am i going to make it thru this ....you just have to stay the course. I know about the cost i am in bussiness for myself and when i can't work i don't get paid. I am going thru a divorce at this time and am going to lose my health care to boot. i am not sure if i am going to be able to afford it as the bussness is getting to the point that it pays all of the bills, let alone have days off because i can't work. this is really a pain in the head , eye , cheek , sinus , temple, neck and wallet. Hang in there!

Yes i agree with OPUS be thank full that you have someone who supports you. My girlfriend deansgirl supports me when i am in cycle like now. She has done more for me in the few months that i have know her than my soon to be ex-wife ever did. Support and attitude sure helps.

Title: Re: What kind of life is this
Post by Opus on Mar 10^th, 2003, 9:11pm

Be thankful
That your that your husband cares that you have meds,
That you have someone to watch your child.
If your husband is a supporter.
That you don't have to drive Ch or not

some live with,
No meds,
No one to watch their kids,
No supporter, some even have spouses that get angry
when we get hit.

None of us during a cycle,
Sleep much,
Have a life ,

Sorry but you have many things to be thankful for.
When I am in a CH and my wife is yelling "why isn't the kid in bed" and I have to drive to work the next day so I can buy food to make dinner I will try to find something good that I have.

I don't mean to make light of your situation, no one should have to go through this pain. When things are really bad just know that they could get much worse. Sorry if I offended you or anyone else.
Opus :'(

Title: Re: What kind of life is this
Post by tanner on Mar 10^th, 2003, 9:33pm

eileen, this place is my how. if i had not happened across this site and these people i'm not at all sure i would still be here. i am getting hammered harder than i ever have before! i need to come here and read roxy's and jonny's and i'm sorry guy's, but everyones posts just to get the strength to face the next assault. i have started playing a mental game with myself i call "RAMBO" (which happens to be the way my last name is pronounced) where i challenge myself to endure without "dancing". so far i suck at it, but the challenge is worth something. i'm sorrry that i can't be more supportive or offer better advice just now, but give me a day and i will be back.....stronger... tougher... and with a better understanding of how "WE" live like this. tim.

hang in there please, we need each other!!!!!!

Title: Re: What kind of life is this
Post by Charlie on Mar 10^th, 2003, 11:41pm

I felt the same way Eileen. I can tell you that the things can go away for a long time. I'm pretty sure they are gone for good. Believe me, it does happen.

Han in there and don't be afraid to leave the house or drive.

Charlie

Title: Re: What kind of life is this
Post by Edna on Mar 11^th, 2003, 12:41am

Eileen, hang in there, it does end

AND

it's a life WORTH LIVING!!!!!!!!!! I know, and all YOU have to do to be reminded is look real hard into those loving eyes of your children, and your husband.

THAT, my dear ch sufferer should answer your question in itself.

Hoping it ends soon for you, but if not, we'll still be here for you

EDNA

Title: Re: What kind of life is this
Post by suzy617 on Mar 11^th, 2003, 6:47am

Eileen,
Sorry your going thru so much pain. All I can offer you is to never give up, it DOES go away. Stay strong and dont let the beast win. Life will be good once again.

suzy

Title: Re: What kind of life is this
Post by Janice on Mar 11^th, 2003, 7:35am

Eileen...I know what you mean! During my CH season I cannot function as a person, much less a wife, mother and employee. My husband is great, but misses our intimate lives, my two sons (grown but still live at home) just hide because they feel so helpless, and my job although I do volunteer work they expect me there so I show up in a drunken stooper from all these meds. Just went yesterday and pulled more money out of our savings account to pay for the meds and the doctors. My husband's overtime was cut out about the time these darn things started up again! So to answer your question, no you do not have much of a life during your season, but the bright days are ahead. I promise and it will make you so much more greatful for them! I have learned not to take a pain free day for granted!

Title: Re: What kind of life is this
Post by Leesa on Mar 11^th, 2003, 8:28am

Eileen,
I'm sorry for your pain. You have no choice but to get through it cuz of your family and like Jonny said the other is OUT of the ?. You do what you have to do. Dave has suffered since he was 10 and when he's being hit I dont leave his side except to get the ice pack or grab a towel to put over the wall or floor while he's "head banging" You will make it through this. It's tough but you will. The support you have at home and here makes a world of difference. Hang tough and do what ever you have to. Your bigger and badder then the beast ever dreamed of. You CAN and WILL win the fight! It will end. Just look at your family and say I CAN DO THIS!!!!!

Title: Re: What kind of life is this
Post by Mark C on Mar 11^th, 2003, 8:53am

Sounds like normal Clusterhead shit to me.......vent away....sometimes it's the only thing we have....leave it here. Clusterheadaches SUCK! Shame, guilt, fear.......hang in there girl. I hope the beast exits your head soon! Good luck,
PFDAN's,
Mark

Title: Re: What kind of life is this
Post by maggie_may on Mar 11^th, 2003, 9:50am

Eileen... I'm so sorry you're having such a tough cycle right now.

You know, this CH thing does suck. And I'm sure that we all sit and wonder 'I can't do this anymore' and 'when is it gonna stop'. It messes with your life, but as soon as you're pain free, you've gotta take advantage of it. Live life and don't fear it - you can't be afraid to do normal everyday things - just look at your family and I'm sure you know that's reason enough to go on.

We're all here to listen, because we all understand what you're going through. Wishing that the beast leaves you soon.

pfdans
maggie

Title: Re: What kind of life is this
Post by Roxy on Mar 11^th, 2003, 10:27am

on 03/10/03 at 21:01:44, jonny wrote:

You will get through this, I promise.....then you will get to do it all over again and you will get through it, again, I promise.

My grandmother always stated it as.....'that which does not kill you, makes you stronger'. We do it over, and over, and over, and over....ad nauseum. It is life....it's OUR life. jonny and I, and all the other chronics, we deal with this on a day to day basis.....with no end in sight. Some chronics find a way to abort and somewhat control the SOB's....some don't.

Be thankful for the things you do have, and it sounds like you have a lot. There are worse things out there...believe it or not.

Tracey

Title: Re: What kind of life is this
Post by BruceD on Mar 11^th, 2003, 10:42am

Hey Eileen,

I'm really sorry that you're going through a down time, but you've already mentioned three reasons for a life like this. Namely your 2 year old, your 7 year old, and your husband. I know EXACTLY how you feel right now. My last cycle lasted for almost 5 months and got so I was having 2-5 HA/day. Your body just can't adjust to things like that and then coupled with sleep deprivation things just seem to get worse. Those long months were spend with no meds and only for the last 3-4 weeks did I find O2. (Yeah!!!)

Just try to keep up and rather than lament on the pains from the night before, or be anxious about the next hit, live for that PF moment when one of your kids hugs you and calls you mommy. That's one of the important things that kept me going during that last cycle.

Take care
BruceD

Title: Re: What kind of life is this
Post by kissmyglass on Mar 11^th, 2003, 1:36pm

Hang in there! I'd pay big bucks to have a 37 day cycle, I' going on about 18 months getting hammered every day. My longest break was 2 days. >:(

Heard this this a.m...When going through hell...Keep Going....

Kev C

Title: Re: What kind of life is this
Post by firebrix on Mar 11^th, 2003, 2:43pm

Greetings eileen
I don't think we've met, so welcome.
You've had some really good replies to your post and there's little I can add.
Mopar's chronic so lives with CH every day, every week, every month. His attacks occur two hourly day and night when he is at his worst. No preventatives work for him, only prednisone and Imitrex.
His system for survival is to live one moment at a time. An hour is far too long! Living one minute at a time means that when he is not in pain he can enjoy the good moments.
Hang in there kid. Your children need you, your partner does and it will not always be this bad. There will be a few good moments in every day, but sometimes you've got to look really hard for them.
Thinking of you and wishing you PFDAN
firebrix

Title: Re: What kind of life is this
Post by CathiP on Mar 11^th, 2003, 5:09pm

Eileen, I have a friend who is chronic. As of the last time we talked, he has been hit just about daily- often 2-3 times a day, since, oooh, mid-OCT.! He has a very demanding job, which includes a lot of travel, tons of responsibility, and he can't get these things under control......know what he says?
" I guess I'm just gonna have to get stronger."

It's a constantly changing battle with this beast, but the one thing I have learned while being on this MB is this-
YOU HAVE TO BE STRONGER THAN IT!!!!
It's really tough, coping like you must, but I hope you can focus on gathering the strength you need to deal with this horrendous pain, and each time it subsides, refocus on the joy your 2 yr old gives you, the pleasure of a day in the sunshine.
The people you meet on this site are, by far, the strongest people you will ever meet- and they will all be here for you during the tough times, but they do not live their lives in anticipation of a hit-they live for the great times, and the hits, well, they cope....as will you.
Please keep posting.....rant & rave, then share with us the good times. There will always be someone to listen, and to help you grow stronger.
I hope this cycle ends for you right NOW, Eileen- please keep us posted, and take care of yourself.
Y'know what my friend says, when he's done telling me about this beast? He always says "life is good"- and y'know what? I think he's right.
Wishing you PFDAN
Cathi

Title: Re: What kind of life is this
Post by dizzyd on Mar 11^th, 2003, 5:32pm

Hi Eileen,

Sorry things are so tough for you right now, I understand completely how you are feeling as most clusterheads do........we have all been there.

I am chronic too, 22 years, and sometimes I just can't stand it and that's when I come here and read about everyone else and know that at the very least I do not suffer alone. It eases the heartache and I just found this site in January, only wish I could have found it sooner, better than therapy.

You WILL come through this, stay strong!

Dizzyd

Title: Re: What kind of life is this
Post by Tim_w on Mar 11^th, 2003, 8:24pm

Eileen Hang in there ;)
I have had CH for 23 years Cronic for 3-1/2
I run heavy equipment& drive Truck Every day!
when I fill one coming on I stop until it's over!!
Than its on the road again!
The bad days make the good days look better! :D
I know you can make it through this!
Becouse CLUSTERHEADS are the tuffest people on earth!
HANG TUFF!! >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:(
WISHING YOU PFDAN Tim_w

Title: Re: What kind of life is this
Post by das on Mar 12^th, 2003, 8:41am

Eileen..

Now more than ever is the time for you to stare the beast down and accept the challenge. If your meds are making you broke and not doing much, why are you taking them? I don't know that meds do anything good at all after a while. I have been med free for over a year now. My weapons are 02 and shrooms ( which are not for everyone)

I have only recently accepted my fate and I have been feeling better ever since. If the CHs are gettin the better of you for now, you must realize that you will eventually get over it and then you must enjoy life to the fullest. Your CHs will most likely never go away, so you have no choice to accept them and do your best. Otherwise, the psychological factor will make you feel like a victim.

You did nothing to derserve this, it's not going to kill you and you can handle the pain.. You are stronger than it and you will win!!!! Keep repeating that and you will definitely feel better.

MIND OVER MATTER.

Good Luck.

DAS

Title: Re: What kind of life is this
Post by Lori on Mar 12^th, 2003, 9:44am

Please hang in there. We can only do our best to get through one day at a time, one hour at a time, one minute at a time. You can't give up. It just is not an option. You must fight! If the meds you've tried don't work, then read, read, read on here to see all the different things that have been used for CH and try something else. You just have to fight and be determined to beat this! I finally got to that point that I am not going to sit around being tortured anymore. I am going to fight. And that's what you need to do. I do agree that you have much to be greatful for. Take a moment to think about the blessings in your life. You will come through this. It will pass.