I ran into 2 people in one day! who I thought were friends, that I thought understood the degree of pain and suffering I've been in these past 15 years. I've been in a wheelchair for 10 years now, first a manual chair for 4 years that I tried so hard to be able to push myself but after having carpaltunnel surgery on both hands had to admit I just couldn't push it, then a power chair for 6 years. It used to be that I would have good summers - have several months wherei could walk in the house and even a bit outside and do some gardening. These summers really helped me keep muscle and muscle tone and stretch those muscles out! 4 years ago I had an encephalopathy - my brain decided not to breath for me for a week, so I was on a ventilator and the fight back from this time was very, very long and my good summers ended. Now I've been getting around my home pretty much by myself in the mornings, the rest of the time in my chair and believe you me! I cherish those hours in the morning being able to walk on my own. I did just get my SCS 2 weeks ago and it is working well! but, while I shall fight mightily not to need a wheelchair in the future, I have to accept that I very well might and hopefully just for distance (which I look at as Wonderful!). My primary care dr has started the paperwork for a new power chair as mine is getting old and once I CAN walk in my home I will no longer be eligible for one (and that are around $10,000). I told one friend about it this weekend and her response was Why did you have the SCS surgery if you still will need a Wheelchair? Uh - hello! What about ALL the time out of the chair, walking, using my body again, gaining muscle tone, getting healthy, preventing blood clots- the list goes on and on! Another "friend" was amazed I am still on pain meds. (Wed will be 2 weeks since my SCS implant and I am on 70 mgs of Methadone with Oxycodone daily for breakthrough meds. I have taken only 1 Oxycodone in the past week - hooray! She couldn't believe that it will take 6 months to a year to decrease on the Methadone - why would I even have the surgery if I would still need the meds? Because it takes time to decrease on that much Methadone in the best way so my brain has the best shot at making the right chemicals again after 15 years! on pain meds. Now these two people have known me for many years - it's hard to imagine how oblivious people can be to those of us who live in pain! Once again - dealing with other people's expectations! I think it is FANTASTIC that I might someday only need my wheelchair to go to the mall, etc and not need it everywhere - and the battle to get off the Methadone for the chronic pain has so many good points along the way in that my body will have to deal with less and less problems and other meds as I decrease. It just boggles the mind that people can't understand these things - I have to continuously tell myself that they just don't understand and I don't need for them to understand - because I don't want to have them deal with chronic pain. No one would wish this on a stranger, let alone a friend! Well, thanks for letting me vent! I'm up at 4 am dealing with muscle spasms from my implant surgery - so I've been stewing about this in the middle of the night. Tis true, many of my friends live here in my computer!

For years those who did not listen I categorized as the "how's the back friends. Those who did not listen regarding my injuries were all over my body. Who thought everything was about back surgery.... even though there have been many of them, the resulting nerve injury was from waist to legs.... and in my right arm.

"How's the back?" Yeah.

Wishing they would listen,
Mark56

Oh how I can relate to this!

Actually, I gave up trying to explain within a year of my 'situation'. Heck, even I didn't understand what was going on! Try to explain pain to someone who can't possibly comprehend, because they don't see you bleeding or writhing around on the floor. They look at you like a cow staring at a new gate

....not to mention the 'good' friends that I've lost because of this. I admit, part of this was due to 'me' seperating myself because I didn't want to be seen this way, especially since I used to be a hard worker and full of life. Your 'chosen few' in life will stick by you and somehow understand.....or at least they try and understand that they don't understand..........but nonetheless they stick with you.
Yes, this is where you find out who are the superficial ones.

That's why this forum is so important to so many people. I think I would be curled up in a fetal position somewhere if I didn't have this place to come to.
Rant all you want, Eliza! We've all done it and still do....
We're all in this together....

Rae

To talk about our pain and lose friends, or not to talk about pain and hopefully keep them - THAT is the QUESTION!
Whether 'tis Nobler in the mind to Suffer in Silence,
or to take Umbrage against a Sea of Ignorance,
and by doing So End Social Interaction....
(or something like that....)

Don't mind me; I'm experiencing a bout of cerebral flatulence.

Deja vu - Have we been through this movie before? I can be a slow learner at times. I drove away a lot of folks by mistakenly thinking that when they asked how I was doing, they really meant it, and I answered candidly. Eventually I wised up and now confine my pain-palavering to pain-pals, support groups (like here) and those oh-so-few who, after I tell them I'd rather not talk about it, convince me that they really DO want to know...

I'm at peace with this situation now. I think I'm happier for not having/wanting to talk about my pain/medical conditions at every opportunity/social event. I thought about handing/sending some folks one of those letters floating around the net telling them what it's like to be us, with the list of umpteen things they should/shouldn't ask/say.... but that seems kinda... weird (to me, anyway - not my style, I guess).

I can't blame people for acting, feeling, and/or talking the way they do. Insensitive as they may seem, they're being very human. Like the doctor who admits to being afraid of us because he can't help us
http://www.medpagetoday.com/Blogs/21266?
I think many of our friends/family/acquaintances are scared silly of us - knowing there's nothing they can do, and terrified that they could wind up in the same situation.

I am thinking about printing up some kind of awareness card though... a business/calling card - sized thing with some talking points about chronic/intractable pain - maybe individualized. Maybe (to cut the tension) put one of those lists of "Things NOT to Say..." on the back. It's smaller/handier/friendlier than a letter, anyway.

Whaddaya think?

ElizaJane, from where I'm sitting/reading, you've got a lot more to feel good about there than not. Keep on Ventin', and Illegitimi non carborundum!

Doc

Well, I say 'good idea'...... Let's just hope we have font small enuf to fit all this onto the card....

Thank you for that link. The letter from the doctor's perspective is the perfect way to 'step into the other's shoes'.
Why can't all doctors be so candid and humble at the same time.
I especially like the remark he made regarding how we have long forgotten what 'normal' feels like. Boy ain't that the truth!

Oh, you know.... it is splashed all over these pages. People often truly do not want to know of the pain we feel. They want to feel good they asked, and quickly move on.

I now bowl EVERYONE OVER WITH THIS "I feel blessed, how about you?" It starts a conversation every single time. Every time. So I hurt, and do not delude yourself my success with stim has meant I no longer experience pain, for I do, it is just managed with the stim, which I control up or down or switch programs depending upon need.

Realizing my mental state could be dramatically improvied as Miss Eva from the Blessings thread so eloquently demonstrates almost daily [even yesterday as she departed for surgery], I have control over recognition of the good things in life, and they ARE HERE. Switching the response to inquirers as I have has brightened my days, brightened their days [for they realize despite pain I recognize blessings], and if they were tempted to do the quick getaway, my retort stops them all dead in their tracks.

Come here to vent, for we understand. Share blessings with others and the world will be brighter all around. Realize WE ALL CARE, SOME OF YOUR FAMILY CARE, VERY CLOSE FRIENDS CARE and ALL will cheer at the brightened outlook you present with "I feel blessed, how about you?"

Always come here ready to receive a recharge of the batteries when the pain is hardest and you need understanding people alongside. Also know, recognizing blessings will..... IT WILL capture the attention of people and they will stop and regard you. Your caregivers will pay better attention to you... I promise, they do me.

Praying for ya,
Blessed too,
Mark56

Isn't that the truth? Thanks for posting that article - it will be bookmarked for much more use, as it does help us understand our providers, which is something I've never considered before. I lumped doctors into a couple of groups but never before considered how they felt about me!

Today I woke up feeling very sad. It's been two weeks since my implant
and I'm having to deal with knowing that my legs just aren't going to get any better or improve any more than this. I'm going to have to live with this sensation in my legs the rest of my life. No one ever promised that it would be better but I had just kind of hoped that somehow with this implant my legs would feel normal again, but that's not to be. No matter how many times I've thought that I'd accepted that, it rears it's ugly head from time to time. That's a tough pill to swallow. I would give a lot to feel "normal" just once more, so I could appreciate it.

I do feel this stimulator will help but there is a lot of stimulation to adjust to. Somebody I thought it would be different, or less, or something. So here I go again. But thank you all for your thoughts, and especially for the letter from Dr Rob - it helps!

I like that blog post too; had it bookmarked for years, and pull it out often. And I feel fortunate that I DO have a couple of doctors like Dr Rob!

Wanna see some other great blogs from medical professionals?
Google: angry doctor
Google: angry physician
Google: angry pharmacist
and similar; there are lots out there - enlightening and entertaining!

I often suggest to people new (I'm sure everyone here knows this) to chronic pain/disease to bone up on the stages of grief, because whatever the cause, this... thing thrust upon us is not an event; it's a journey - a process, and we go through those exact same stages. I think it helps to be aware of and understand what we're going through and why. We read through the stages, checking off which ones we've been through (there is no order) thinking (hoping?) that once we've been through them, we're done, but something we (I, anyway) often forget is that those stages can be recursive - we can revisit any/all of them several times along our journeys. Hopefully we don't get stuck on any one or several (though it can & does happen).

I get the same feelings (that you express about your legs) about my neck, or back, (or legs/feet) and the skills and abilities I've lost that I won't ever get back. But then I have to remind myself that eventually I may have lost them anyway through age, and what's really bugging me is the abruptness and accelerated timeline - how RUDE! (I have an aunt in her late eighties who's throwing fits because she's losing her sight to macular degeneration) I can't dwell on the past, it wastes too much valuable time, and I'm on the high side of 50 anyway; I only have what is and what I can still do, and I cussed well better cram everything in while I still can before I lose anything else lest I lose it whilst revisiting some stage or other...
(There was that incident at the Grand Canyon....)

Mark has an excellent point; there are still good things all around us, but sometimes we have to kick ourselves in the butt to wake up, see, and appreciate them. I'm glad we have community, so we can help kick each others butts when we can't kick our own!

Doc

I think I'm still in the 'DENIAL' phase.......I keep wishing/hoping I'll wake up from this bad dream!

I wonder what doctors really say about us on THEIR forums! I accidentally landed on one awhile back, so I think I have a pretty good idea.......There are plenty of @$#%^& doctors who are convinced we all are drug seeking malingerers! Seems we have to go thru the seventh circle of HADES just to prove we aren't!

I think most of us really do appreciate life and all that we've been blessed with. We enjoy our families and do things to the best of our capabilities....it's just that when we come *here* , it's mostly for support and understanding and that's why more times than not the conversations are more on the negative side.

Despite all the blessings, etc.....there are certain people in our lives that we want to talk 'on the level' with. I have a friend who asks me how I am (she's in the medical field and I've known her for 30 yrs) and if I say anything on the negative side she rebukes me saying "Tah Tah! Now we get what we confess you know!". Ok, I get where that is coming from, but for somebody who really truly knows us, wouldn't you think we could talk 'reality' for a bit? Especially since she's in healthcare, you'd think she'd want to delve into the medical reality of what this is all about. I call that a pretty shallow relationship imo.
No, I dont' go whining to everybody who will lend an ear....I'm a positive person (as much as I can be - there's always room for improvement tho). I praise God aLOT and am thankful for so many things, but....

I dont' mean to sound negative . I'm just thinking that if one of 'my' friends were faced with RSD/PN or any disease for that matter - that I would want to know the reality of what this is like for them.
I completely see the logic in responding to the casual person that I am blessed and doing good - heck ya.

...................help me out someone, I feel like I'm digging my own grave here ....

Lotta that going around. (i.e. me too, ditto...)

We have a friend in the medical field who actually pumps me for more information on how I am after I've said, "I'd rather not talk about it and keep things light & positive."

You're a better man than I, Charlie Brown! I think I get a good sense of that (as much as one can get) from reading posts here and elsewhere, involvement in face-to-face support groups, reading blogs.... Myself, I guess I'm more interested/concerned with how people (find ways to) cope. I feel I can't help the next guy/gal by knowing what it's like - I don't think I CAN really know what it's like - can anyone really? Knowing how they cope - what works - is something I can pass on. So I try to pass on what works for me. If I can reach/help one other person, it makes my day.

But that's me.

Doc