Any Decent Pain Groups?

[limey]

When my brother was housebound for several years due to illness his computer was his source of entertainment, his means of socialising, his sounding board, his research library, his distraction and his focus. It helped him greatly through a very difficult time, and I hope that your computer can do the same for you, rk.

[xoxoxoBruce]

It's hard to imagine myself in rkzenrage's position...think I would have given up by now. I'm glad he's got that chair to relieve the strain of carrying those large balls around.

But trying to imagine being in that position before cable TV, internet, electronic gizmos, broad range of talking books, etc, when the ability to read comfortably slips away....is incomprehensible.

With the pain, it is very hard to read now. My concentration is not what it used to be.
Bad spasms yesterday, tore up some muscle. Sucks, it is really beautiful out now and my son is at the park with my wife.

[limey]

Still listening rk. Still sending you whatever good vibes I can. Are audio books an option, or has this been discussed before?

I do some, but can't afford or am annoyed by most of the audio book clubs. So, my selections are limited. They are really pricey around here.

[limey]

I googled online audio books and got, amongst others http://www.audiobooks.org/... which claims to offer free online audiobooks, plus a number of other paid sites .... Hope this helps (or maybe I'm teaching my grandmother to suck eggs?).
All the best

They are not all free, some are good, checked them out over a year ago. Thanks a lot for the heads-up though.

Ok, I can walk with some help, a cane or walker, for short distances. So, sometimes, I go to a store or my local tobacco lounge without my chair.
Yesterday I went out to a couple of places after leaving my chair at home; I was having a “good day”… I am not now.
The last couple of tests I have gotten back from my Dr. for some of my conditions have not been good. I am getting worse and know it, but have not been acting like it.
The days of going out, or even doing much around here, out of the chair are over.
I knew this day was coming, we have talked about it, my Drs. and I, my wife and I, my parents and I… why do I feel so numb?
I’m not really upset, not in disbelief, but it is all happening much faster than I thought… all of it.
I guess this means I have to deal with other aspects of my illness, things I normally don’t deal with… I’m not sure.

[limey]

I suppose you feel numb because imagining it, and talking about it, is not the same as having to live it?
I wish you ample fortitude and humour, and the continued love and support of your family and friends, to help you through.

The amount of pain I'm dealing with from it, I'm sure has a lot to do with it.
I'll deal, just like I always have, I'm sure.
Thanks Limey, for your kindness and support.

[WabUfvot5]

It's not only the physical pain that can be harmful but the effect being in pain has on the mind.

[CaliforniaMama]

Originally Posted by Jebediah

It's not only the physical pain that can be harmful but the effect being in pain has on the mind.

I'll give an Amen to that!

I have the dubious pleasure of being one of those "back problem" people, but that is only one of my incredibly insane list of issues. Like my doctor likes to say, I've got a lot going on, but none of it life-threatening . . . she doesn't add the "yet" yet . . .

While I can't yet totally relate to the intensity, I have days when I'm consumed by the worry of just how bad it will get. I'm just starting to comprehend what it means to have a connective tissue disease . . .

I admit that I want to stop and watch everyone in a motorized chair. Not out of some perverse curiosity, but because I want to know how to do it when I get there. I guess in my mind it's not an "if" but a "when."

You would not believe how triumphant I felt when I did a kiddie amusement park with my kids without my chair. Don't underestimate the level of pain some of "back problem" people deal with. The pain is invisible to all but the closest and I feel like a poser in my chair, but most of the time it is the only way to be able to endure an outing . . .

God, why don't they get this pain thing figured out? It's only science . . .

Edit~okay, so now I have read the whole thread. There's so much here, so much going on, so much to say. I think those of us in advanced levels of pain have a lot to say to the medical community and to the community at large. Why isn't there more talk about it? Not just the bitch sessions, but the real constructive nuts and bolts and dynamics of pain itself. Sure we can spend our entire waking life focusing on our health, on the foods, on the exercise, on the mental and self-healing, but that seems almost narcissitic to me.

There's more to pain than the living with it, enduring it, accepting it. I get a little consumed by it. I want to talk about it ad nauseum. There are so many different types of pain that come from different places ~ there are a lot of nuances and the doctors just don't get it.

I think a lot of friends disappear because they just don't know how to act, what to say, what is needed, what helps, what is invasive or offensive. I go to a place to assemble meals for the month (they go home, to the freezer, and I have food for a month) with another friend in chronic pain. We chuckle because we are both too young to be in this situation and we call ourselves the disabled brigade. The staff are sweet and help us out as much as they can . . . it helps having the company. I get too tired of asking for help when I'm by myself. With the two of us the staff are more attentive. It's nice.

It seems like people get embarrassed asking about what's going on with the all the medical issues. There are too many and they don't really understand all the complexities. They really only want the bottom line and I don't blame them, but since it is my life (and yours), I do want to focus on the intricacies of it all.

It is good to talk ~ not just to vent, but to compare notes, see what crops up. It has been good reading this thread and learn that I'm not the only one who has trouble with the pain meds . . . if I'm not the only one, then why won't the doc listen???? It drives me nuts. Worse than the rude people . . .

I have not problem, personally, with those with fibro, they just shun me.
They just like to bitch, constantly, about how others don't believe they are sick. Since I don't have that problem, I guess they could care less about all else we have in common. It has happened at every pain group that was a fibro, exhausted disease, in disguise.
The same happens with SCI groups. Since I was born with my problem, I don't spend a lot of time complaining about "the good ol' days", "what if", "why" or any other fixation on the fact that I am sick and I can do nothing about it.... though I have had spinal injuries and they have contributed to my condition and being in the chair.
I complain some, kinda' why this thread is here. But, I also want to talk about chair accessories, canes, cooking, stem cell research, ADA improvements and how we can lobby/get better representation, etc, etc, etc.
Just sitting around and dwelling on being sick and what put you there is really counter-productive. I thought these were support groups?

The pain does do a lot to my concentration, mood, etc... but it has physical manifestations as well.

BTW, my wrist is probably broken, it is certainly badly sprained and I have six kidney stones... happy Halloween.

[xoxoxoBruce]

Do you have a sword cane? Might be just the ticket for prodding assholes.

I know you said you won't be going out without the chair anymore, but there might be occasions where you are just going to one place and can get comfortable there, then home.
My Mom had trouble with her cane when she started using it full time. She didn't know what to do with it in a restaurant or where ever she was going. Hanging it on the chair back, people would knock it off going by and anywhere else, they can trip over it.
I got her a sectional cane with an elastic cord up the middle. It's called a collapsible cane but that name makes me nervous. She could fold it up and put it out of the way, but still handy. Unlike hinged canes, this has tubular sections and the elastic cord just keeps all the sections in one place when you break it down...very strong and stable.

No, I do not have one. Most of them are not practical... the one I want is very expensive. I just like it... when I feel I may need something like that, I conceal carry.
I always have a cane for bathrooms that don't fit my chair.
I am patenting a cane holder for wheelchairs. I have a lawyer doing a pre-patent search for it now.
I have a collapsible cane in my car, for just-in-case... thanks so much for your concern and thinking this through for me.