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        New Message Board Archives >> 2004 Posts >> How do you do it?
        
(Message started by: crazy_mj on Sep 3^rd, 2004, 10:44pm)

Title: How do you do it?
Post by crazy_mj on Sep 3^rd, 2004, 10:44pm

Okay, I don't know how you people do it. How you continue to fight the fight day in, day out.
I personally just feel like crawling in a hole and giving up. It's like I am in two places right now. My life and the pain life, and the pain life is taking over mine. More and more of my day is devoted to this hideous shit, and the rest of the time is spent trying to repair the damage and complete the things that I had to put on the backburner while the evil thing was attacking me. I have a two year old and I am fighting with all my being to be there and be at least halfway coherent for her. If it wasn't for her, I honestly don't know were I would be at this point.
I don't know...I have no were to turn but here, no one understands and it feels good to get it out. So thank you. thank you for just being here and available when no one else is.
amanda jane

Title: Re: How do you do it?
Post by vig on Sep 3^rd, 2004, 10:50pm

We just do.

and you have a lot to teach her about showing strength in the face of adversity.
Hang tough!
You're not alone...

Title: Re: How do you do it?
Post by don on Sep 3^rd, 2004, 10:57pm

I have always felt that those who continue to survive and live despite immense adversity are true spiritual teachers.

CH is about as adversly immense as you can get.

As CSN&Y once said "teach your children well".

Title: Re: How do you do it?
Post by Jonny on Sep 3^rd, 2004, 11:17pm

Lean on us......thats why we are here!

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

Title: Re: How do you do it?
Post by alleyoop on Sep 3^rd, 2004, 11:25pm

on 09/03/04 at 23:17:02, Jonny wrote:

Lean on us......thats why we are here!

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

AMEN!

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

Title: Re: How do you do it?
Post by Redd715 on Sep 3^rd, 2004, 11:32pm

Amanda my dear,

First of all, you are not alone. We are all here for you.

Now, lets cut to the chase. I'm a single parent too, mine are teens now, but they have watched me all their lives deal with this beast.

They have been drug to the ER when I was still married as my ex husband would take me in when we were still married. They have seen me writhe in pain after the divorce when an ER trip was no longer an option. You are a lesson to you child in the depths of what a human can endure.

Do you have anyone to support you in this time? Friends, a family member? Anyone? I only have the wonderful folks here to vent to when it gets overwhelming....but if you need us...we are here...but I think you already know that.

You can't give up dear! Just know that the strenght you show your child every damn day you battle, will be learned and that will influence the rest of your dear child's life! Imagine the strenght that will be learned. The ability to be compassionate too. Oh the blessings that can be gained!

Don't you give up or give in..... PM me if you need to...

Redd

Title: Re: How do you do it?
Post by Gator on Sep 3^rd, 2004, 11:40pm

You just take it one day or one hour or one minute (if you need to) at a time. Treasure the pain free moments and try not to stress about the next hit. It's going to come or not come (unpredictable bastard) whether you worry about it or not.

I know you've probably answered this before, but what meds are you taking right now? Are they working at all? Which one(s) is making you incoherent? Maybe it's time for dosage or med change.

I pray for strength for you and that you find your answer, soon. In the mean time, vent your frustrations here. Maybe all we can do is listen, but sometimes that's enough.

Gator

Title: Re: How do you do it?
Post by lionsound on Sep 3^rd, 2004, 11:44pm

Amanda Jane,

I'm a mom too, and I understand exactly what you are saying.

We all are here for you.

Your daughter loves you. You are doing a great job.

-Lionsound

Title: Re: How do you do it?
Post by Charlie on Sep 4^th, 2004, 12:35am

The fact that you're reading and posting is probably a good sign that you're not giving in. I know you've been here but keep looking around. Good ideas are to be found.

One thing that I read, and it makes sense, is that young children usually handle parents' pain better than you'd expect. I guess to them it's just another item they have to get used to. I thought you might like to hear this.

I hope you stick around and let us know how you're doing.

Charlie

Title: Re: How do you do it?
Post by IndianaJohn on Sep 4^th, 2004, 7:19am

I know this sucks. My kids have seen me at my worst too. But you have to keep going. Keep trying. It will get better. Lean on us all you want. We have some pretty broad shoulders around here.

Hope you catch a break soon!

John

Title: Re: How do you do it?
Post by BobG on Sep 4^th, 2004, 7:41am

Kids, including 2 year olds, are a lot smarter than most adults will give them credit for. Maybe they can't communicate as well as older kids but it is amazing what they can feel and understand.

When you are not in pain explain to the little one what is going on, what hurts and what she can do to "help".

My children were very young and my grandson was 2 when they first saw me in pain. By explaining in simple language, believe me, they will understand.

Give her a 'job' to do while your are in pain. My kids were given the job of turning the TV down and playing quietly until it was over. A thanks and a hug afterwards is a big reward for them for doing their 'job and they are proud to do it each time.

Title: Re: How do you do it?
Post by synergy on Sep 4^th, 2004, 9:08am

Hang on in there hun - me and the rest of the CH gang are thinking of you. My 7month daughter doesnt even batter an eyelid when her dad has an attack - its normal to her.

I know its hard - but you have a lot of support here and a lot of friends and we will pull you through the tough times and laugh with you through the good times.

You are not alone - ever.

sarah xx

Title: Re: How do you do it?
Post by kimh on Sep 4^th, 2004, 9:10am

Sendin ya a hug!

I've been exactly where you are at and know how it feels. The worst thing you can do to yourself is isolate. Unfortunately, with clusters not being widely known or understood, isolating is all to easy for us sufferers to do....and that is a real danger for us.

The best thing you can do for yourself is continue to share here - it will help you to cope. :) You are strong!!!! Better days are ahead!!!!!!

Give that toddler a hug and a sqeeze and know that you are not alone***

PF wishes headed your way :)

Title: Re: How do you do it?
Post by Woobie on Sep 5^th, 2004, 5:43pm

[smiley=hug.gif]

Title: Re: How do you do it?
Post by ShariRae on Sep 5^th, 2004, 7:36pm

jonny said it best..and I can tell you that if I didnt have my family here at ch.com.. I would indeed be lost..or dead :(
Hang in there...and know we are here for you..
HUggs
Shari

Title: Re: How do you do it?
Post by Kevin_M on Sep 5^th, 2004, 8:33pm

There is a lot of sharing of medication advice to help, see how your doctor can deliver as much as you need to help.
There is more though needed, the tyranny of clusters is an adversary that the good words of those who also suffer can understand and also lend a hand to you. Sometimes a hand that can be the one to grab and hold onto.
As long as you keep reaching when you need to, there are words that know how you feel, and to help. Keep the fight up and lean here, you will become stronger, but this site and good meds are essential resources.

Kevin M

edit to add...advise after medication.

Title: Re: How do you do it?
Post by crazy_mj on Sep 6^th, 2004, 11:38am

I thank all of you for the kind words and the great advice. Just knowing that you are all there for me, available at any hour of the day makes it easier to deal at times. Sorry it took me so long to get back with you all it has been a long and hellish weekend. I think the beast got the beast of me Saturday and I just went into myself all day. I was hurting so bad, depressed, angry, and so on. All the normal feelings the beast can bring out in person at their worst.
I think what is causing the most stress at this point is knowing I will have to go a month without the meds I need. We are in between insurances and I cannot afford to fill all my scripts. All I have is my Verapamil and Fioricet. I hate using the Fioricet but at this point I am willing to use anything to numb the pain a little. (which is all that crap does)
I am just hoping that I will hit a break soon and maybe I can coast through the rest of the month. I am grasping straws here but I am putting all my hope into this idea.
Thanks again for all of your support right now, if it wasn't for all of you I have no idea where I would be right now.

amanda jane

Title: Re: How do you do it?
Post by Kevin_M on Sep 6^th, 2004, 9:14pm

Amanda,

If all you have is fiorcit, then keep a couple icepacks in the freezer. You can make them with some alcohol in them in a ziplock freezer bag.
Other possible option is welder's oxygen, but you gotta know what you're doing first.

Hope your in between month can go well for you.

Kevin M