What's your Goal?? (Discussion Question)

For me, my Goal is for my pain to be at a level where it doesn't make me think about it every moment. That it doesn't cause me to cry in pain. That I can participate in my normal, daily stuff - with obvious "adaptions", but the pain doesn't cause me to quit living and doing the things that I need/want to do.

For me, I would say that I can achieve all of the above - at about a 5 on the Pain Scale. That's currently where I'm at, by the way. Mostly due to being stable on my medications. I've finally found the right course of treatment re: my meds - being on the right ones; staying as low as possible; rotating my BT meds every 4 to 6 months; etc.

All that said - I still have occasional "spikes" in pain - where I get to a 7 or 8 on the Pain Scale. But FAR LESS frequently than I used to. Nowadays, that maybe happens 3 to 5 times a month, when my migraines are bad or my back is in a big flare. But I usually can get it down w/ modifying what I'm doing and/or meds.

So, I'd say my most Realistic Goal would be to get to a 4 out of 10 on the Pain Scale. But being at a usual 5 means I'm pretty close - so I'll take it!

--Tina

I was fine at my pain being at 5-6 but since I've started my new treatment I'm at a 3.5 most days... Its amazing! My goal is to live my life and be a mom to my kids. Of course I will always need to listen to my body's queues and take it easy (some activities will always be out of the question) but I don't want to raise them from bed like I was before. This year I was able to take NY daughter trick or treating, ice skating (although I was sitting on the sidelines while my sonhelped my daughter skate the majority of the time) and for walks through the woods during the autumn season when the leaves were changing. I was even able to christmas shop this year instead of having to do all my shopping online... Its been wonderful being out in the world!

I always felt that pain robbed me and the kids of so much since I was 30 when I really became bedridden and the kids were 1 and 11. Now we are gettingdome of that back and my eexpectations have been exceeded! I hope all of you are able to reach and sustain your goals!

Linds

You know the worst part about that truck Judy? Is while he's parked he sits there revving the motor and spinning tires!!

Gosh I feel for and hate those days!

Like most everyone else...I just want less pain. Don't expect to be pain free, or no spikes in pain. Right now I average a 7 or 8 most days...the medicine can sometimes bring it down to 5-6....but would love to see a 3-4 :)

Feel like my doctor/PA is not that willing to try new meds...haven't really pushed it too much.

Has anyone ever heard of the song by Simon and Garfunkel "Flowers never bend with the rainfall" Google it for it's lyrics, in some ways I relate my pain to this song, for what it does and how it affects me. Particularly on nights that it is really bad, and nothing seems to help relieve it. Maybe it is the inner "60's/70's hippy hidden in me" but when ever my pain is really high I think of that song? I am not sure that I have a goal when it comes to my chronic pain,......and so "I will continue to continue"

White Beard

Great thread Tina!

I am very blessed to have a wonderful PM who works with me and even asks this question every 3 months when I see him. We discuss my goals.

Right now, it's going back to work. As many know, I applied for disability, and of course got denied like a lot of folks do, but because I waited too long to apply over the years, I really cannot afford to hold out for as long as it takes.

So, we have a goal of making sure that I have a good mixture of pain control but not medicated where it would effect a job.

My pain levels are usually in between a 5-7 and go to an 8 on bad days. But that is with all the modalities I use now and my meds. When I start a job, I'm sure pain levels will rise and we will adjust accordingly to get to at least a 5.

The key for many new folks to chronic pain is to realize that opiates/pain meds are not meant to do all the work to lower your pain levels. Those that we see do this, build up a fast tolerance and question when their pain levels rise in a few months and ask for stronger meds.

I use my maintenance med/ER med as prescribed and then add on daily exercise, (walking 1.4 miles with dog), yoga, stretching, heat, ice, PT at home, TENS unit and then reach for my BT meds if needed. My PM has a good leeway with 5mg pills to use all the way up to 8 a day for the really bad days.

I also do massage, acupuncture, CBT, biofeedback, and even counseling which was crucial in the beginning of my journey to get my mind set with "living" with chronic pain instead of letting it control me and keep me down.

I certainly allow myself a few "pity party" days out of the year where I may cry or wallow but then know that I am very blessed and things could be much worse!

Again, great idea for a thread Tina, thanks for posting:)

Ktk81 -

I hear you about having your little one(s) be the incentive to find the best pain control. I was surprised with twins a few years back (they are 3 now)..... and they are literally what cause me to push through the pain, through my health issues. Because I have to and because I want to.

That said -- I've accepted (for the most part) that I'm not going to be able to do all the things that I once did with my older children. I'm old now, lol..........and DO have extensive health issues and pain issues. That said, I've found a happy medium between being in bed.... and doing everything possible.

Even tonight, I danced in the living room with the girls..... and it wore me out and spiked my pain. But the 15 minutes of giggles and smiles was worth it. :)

--Tina

awesome question, thanks for sharing... well i first started having my pains back in nov. of 2004 and as the months went by the pain got more and more worse off. pain scale was in the 9-10 range so any kinda of relief would have been great. not sure of what was really causing the pain til aug. 2005 with a herniated disc. L-4/L-5 . well to make a long story short at first i had unrealistic goals were to be how i was before i got hurt and throught the years and surgeries i develpoed patients and came to terms with my disablities and more realistic goals. that would be to feel as good as i could. if i'm 5-6 on the pain scale. i guess i can tolorate that.

This thread hits me really hard...I've debated on whether or not to post...

I've never experienced life without a chronic condition/pain. I'll always have Cerebral Palsy and everything that goes with it.

For a long time my goal was just to live life as normally as possible. To live my life like I DON'T have Cerebral Palsy...and just adapt as necessary when I had to.

But as time goes on and the effects of having Cerebral Palsy are taking their toll on me...I have no clue what my goals are or where I want to end up...the reality of my situation and what it means has really been hitting me like a ton of bricks lately.

It's one thing when you're in control of your condition, when you can still function within your realm of "normal" and the side effects of said condition are just a nuisance to be dealt with periodically. It's another thing entirely when you wake up and all the sudden your whole life revolves around pain, sickness, and inability.

I dealt with having Cerebral Palsy by overcoming it. I found a way to do what I wanted or needed to do..despite the pain, limitations, and problems. I was stronger than it was...or so I told myself, and therefore...I could handle it...no matter what.

But now it's all piling up, one thing after another...now...the pain isnt something I can push through...the spasms are so bad they make it hard to breathe, joints are being pulled much further than they were...the tendonitis isn't transient anymore...it's all catching up to me.

And I'm terrified. And all the goals and everything have flown right out the window.

So how do I get past this place? How do I regain confidence in myself? How does a person in my position- who knows there isn't a cure...or really even a treatment- redefine the goals of "treatment" etc.

Sorry if this wasn't the place to post this...

Just wanted to chime in,...

Lexi, this is a great place to post what you did. Many of us look forward to knowing we do have that safe place to post our feelings, whether they're happy and triumphant, whether they're mired in confusion, and especially when we feel scared and uncertain.

Not every day can be roses, and that's okay too. And if posting here helps you to feel better, to get out some feelings that are clogged up inside, then I say: Please do!

There's something healing in knowing other people read what we write, and that we're touching other people's lives too!



M.