Pain is something personal. No one knows how bad another persons pain is unless
they have dealt with pain themselves and even still we all handle it different.
The true judge of pain is..........can you sleep, do tasks without
stopping......basically real life changing pain stops normal daily living.
Every day at least a handful of times under my breath Im praying "god help me
deal with this", when it get really bad its "god take me out of here". I never
cried at all the first half of my injury, but there are times now that when Im
alone I break down for a couple minutes. That's real pain, when it stops you
like a brick. To do my handcycle now it takes multiple pain pills and I pay for
it for days. I could talk to a person 5 minutes and know if they have life
altering pain by these questions. Doctors use the same technique.
Ron
On Thursday, April 6, 2017 9:05 AM, Jeffrey Gaede <[email protected]> wrote:
I feel like I've been pretty blessed when I hear what you guys have been
through; what you are currently going through. I used to wonder a lot about
phantom pain. I didn't know if I was actually feeling what you're feeling and
I have learned long ago to somehow just ignore what was taking place or that
maybe I'm just not feeling what you are feeling. I am 38 years post injury and
I can stop at any moment in the day and think about what I'm feeling throughout
the paralyzed portion of my body. I can feel, at this moment, an intense
tingling in my left calf, it feels like bumblebees living throughout my left
leg, I've got this weird numb kind of hurt in my right leg, my gut and/or
abdomen is just uncomfortable, both my feet and toes feel weird at the moment,
with a somewhat intense tingling feeling. I could go on and on but I have no
idea if I learned long ago to just ignore this for the most part and deal with
life or if you guys are feeling something completely different. I've started
having this "restless legs" situation just over the past couple months. I
think it's actually been going on longer but it's gotten to the point where it
causes dysreflexia, so that's not good. But I've been having one of my
attendants exercise them some before she leaves and it helps. It didn't help
much last night but it's been helping. I've got the same itchy scalp problem.
In fact I've even got a couple small scabs on the back of my head where I
rubbed it raw at times. I really try to resist but obviously I haven't tried
hard enough. I don't know, Dudes. Obviously, getting older affects everyone,
paralyzed or not. And I agree that those first number of years were much
easier in some ways and yet I went through a whole lot of learning the hard way
about some things that I know to avoid now. No one said it was going to be
easy, but you would think being paralyzed was enough and from there you could
at least not be in pain, deal with sores, just be relaxed instead of stressed
and not knowing which way to turn with what's going on with your body. Nope.
Just doesn't work that way. For those of us who choose to live after becoming
paralyzed, it's a hard road. But we must be getting something out of it to put
up with all this crap! Jeff
From: Bryce Willis <[email protected]>
To: "[email protected]" <[email protected]>
Sent: Thursday, April 6, 2017 6:42 AM
Subject: Fwd: [QUAD-L] Getting Old
Yep,I can identify with you guys. I have that same knife in my shoulder. My
legs are so stiff and spastic I feel like I am planted in concrete. My stomach
hurts like the devil every time I eat. And finally, burning mouth syndrome
makes simple eating an ordeal. Oh, let's not forget the pressure sores on my
hip and butt. I am just tired and wore out. L.Willis, age65, 46 years post.
Sent from my iPad
Begin forwarded message:
Resent-From: <[email protected]>
From: greg <[email protected]>
Date: April 5, 2017 at 11:50:58 PM EDT
To: <[email protected]>
Subject: [QUAD-L] Getting Old
Yeah, I'm going on 35 years as a quad. The last 10 have gotten worse with pain,
tightness, etc. And sometimes it's the stupid little things that make life
harder. My head itching for one. I just got a pet glove brush, I'm cutting it
out and Velcro on my headrest. Can't get the top of my head which is the worst,
but the sides itch too. My “Phantom” pains on my butt are driving me nutz. My
shoulder is my #1 pain now. After every test possible, still can't find the
knife I know is stuck in there somewhere. I think I have a Gremlin playing
games with a knife. He comes and goes, leaving no evidence. Xray, MRI,
CAT-Scan, Nerve Test, Gallstones, Thyroid. Some days I just hold my arm and
rock. Other days you can poke and prod and its perfect. Moving to AZ and
“Bagging” my bowel routine are the 2 best things I ever did to help issues.
Greg ---Yep, Greg all this weird stuff is part of a quads life I think....I'm
going on twenty years as a quad, the 1st 10 years were much better for me, as I
age-i'm now 60 things have slowly seemed to get worse and this rainy up and
down temperatures here in Missouri cause me even more pains. I have a Syrinx
and diabetes also that only makes matters worse....I usually do much better in
Spring and Summer as long as i don't get too over-heated then. Dan H***
