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!

My brain HAS been out to lunch of late!

I found a solution (response to people asking about my pain/condition) that my wife & I have both been using for the past year or two, and it just slipped my mind in previous posts....

Friends, etc.: "How are you?"/"How're you doing?"

Me: "Good days & bad." (or something along those lines).

It works as a social convention, and if people are truly interested/concerned, it doesn't slam the door on them.

Doc