It really is the kind of thinking that goes on in all our minds. Round 'n Round...never ending. How should I try, what should I try, Can I try?
I wish this kind of discussion could be put to neurologists to read, as I believe their training[s] somewhat callouses them to really listening to our challenges.
We truly have to listen to that inner voice that is often telling us conflicting things....but most of all to get the medical world to guide us through these conflicts. I will retell my situation in that my first neuro didn't care, at my GP practice I saw five different docs during a six month follow-up period due to several complications [due to my diagnosis/or not] which were not fully treated at the time that they should have. I was not internet-savvy at the time and got new docs and opinions because the lack of diligence by these doctors, combined with my getting worse - well plain old scared me to death!So, I got second and third opinions and got a diagnosis. I am grateful that I did not give up. I knew inside me that something was horribly wrong, and it was. I do know after finding places such as this board tho, that had I not lived in a metropolitan area things could have been almost impossible. I also learned that my own internal instincts were not far off track at all. Those 'instincts' were right on target about the 'wrongness'.

As for 'pushing yourself'? Well, I had done enough althletic stuff with horses, to have learned and know what limits I have...physically, emotionally and all the rest...Coming down with my version of PN has certainly tested all those limits. When in PT tho, I'd read enough from here and other sources about 'finding that line-and the good and bad to reaching it, then going over it' .

When you are a 'capper, you are often viewed as mentally deficient as well. This is an aspect that we can truly correct. Tho when we get tired- as we definitely can, it does seem as if we are deficient mentally as well? That's cause we have to SLEEP! and now? Ever notice how folks talk to you LOUDER because you are in a scooter chair or using a cane? I do hate that totally!

Dakota? Back to basics tho...No your life is not going to be what you'd expected. But on the flip side? Can, might your life be made more because of all you have gone through? We have learned far more than one would or should need to learn about medical biases, erroneous treatments/diagnoses and about how people act/react to chronic illnesses. Education by us to all around us is the first step, then to those who make the laws/rules locally is the second...on up the food chain. We have to make-take the energy to do so, not only for us, but those who are blessed with the all whatevers we have in subsequent generations. The second step is a little effort deal, write letters or call and talk to area leadership. That works up a whole different set of a 'food-chain' than most folks could ever imagine or appeciate.
I have found that trying to act proactively and fight or work or deal with a situation/condition/illness is a heck of a lot better than letting it dull my mind and my body! The more I learn the better I can articulate my issues and concerns to any who will hear.
Yes, I too, have been suffering in the 'dumps' lately. I think it's the shortening daylight. It all makes me really grumpy? 's to all! - j

Well, it's helped me a lot to know that other people wrestle with this issue. I've been having more pain lately and having to cut back some. Then 3 things happened to throw me off balance. One was that I have quit going to choir practice because I just feel too bad in the evenings, and the choir director started pressuring me to come back. I have told her that if I am not there it is because I don't feel good enough, but I guess she finds it hard to believe. And I feel guilty, because she needs altos. Another is that I read an article on pain on the internet where someone described my lifestyle, then claimed they had gone to an intensive (lasted months) inpatient pain clinic and had gotten off all narcotics (I use a 25 mcg fentanyl patch) and had regained an active life. I'm thinking...how many people have access to that. And third, I went to a new pain clinic doc for another opinion on my meds, and she doesn't believe in using any narcotics at all and tried to tell me all the dire things that would happen to me if I continued to use the patch.. I have made my decision to stay on the fentanyl and the heck with her, but it's kind of bummed me out. Anyway, now, after all of your wonderful input, am going to do what I know feels right for me. I will enjoy my mornings of activity and my afternoons and evenings and nights on the couch. If I start feeling better, I'll do more, if not, I'll be content. I am lucky to have all the stuff like computers and tv and cell phones and all, and a big window with a tree and birds. And those altos in the choir will have to learn to sing out without me. Thanks, everybody. You are the greatest.

I think you are doing fine Dakota....any one who struggles to maintain independence and activity, has nothing to be concerned about.

We are stuck with a physical 'bipolar' existence....one day you can do something, you do do something and the next day or week, you can't do anything.

I know all about consistency, as I used to train for triathlons....well, you can't be consistent if your body just isn't going to do what you want it to do that day. Pain or no pain. It isn't always about pain, it is about how your body functions....that includes energy level.

I agree that the 'hero' worship thing is getting to be a bit too much. I think people with invisible disabilities suffer the most from the hero worship. We often see ourselves as others do, and that functions to our detriment.

No one can comprehend what this feels like and it feels different for all of us. I know this sounds awful, but I often wish I was bald from chemo or missing a limb, then I feel I people would know I was sick....Alas, I probably wouldn't be all that content with that situation either and knowing my luck, that is likely down the road too.

Each and every human being has their own suffering, and their own courage. Just to hear you question if you are doing enough in life, makes me think you are doing more than would be expected in your condtion. So, keep up the good work, do the best you can, and some days, it is OK to curl up in a ball.

I think hibernation is underrated.

I just had one of those laughing jags, imagining myself riding a horse. Now I love creatures, horses included....however, they have always scared me a bit....I could ride a skinny tire bike down a hill at 50mph, but a horse.....well, I would always get an anxiety attack on them....I did it, but usually it took 15 minutes for me to relax enough to let the horse do its thing.

This summer I went to Colorado...myself no less. My daughter and husband are in this conspiracy to make me stretch the envelope. I worry for weeks ahead of time. When I went thru security at the airport the inspector, said, 'You look nervous." I told him I was 'Not a frequent flyer'. Not to mention I had a pharmacy in my ziplock bag going thru the scanning machines....'I'm sick' I chortled.

I got to Denver, at gate 92. If you know the gate systems....well, you know how far away that is from the tram.....it is exactly 4 moving sidewalks, 6 Starbucks, 5 sets of escaltors and about 3/4 of a mile away. Yes, I did check my luggage. And I looked like a pole dancer hanging onto the pole on that tram.....

My daughter found me at baggage claim....this time. Last time, I had to catch her as she drove by passenger pick up....no more I said. We found my bag and then she said maybe we could go horseback riding the next day. I thought I would die. I told her I would paint her new apartment instead. I went thru 2 weeks of painpills doing that rather than ride that horse. All I could picture was my T spine imbedded in my brain!!

We did lots of exciting things (besides paint) such as a drive up Mt. Evans (she biked up it in a race and placed 4th, but she said it was harder to drive up---I never saw her so nervous)...she would not let me go near the edge or walk up the last stoney path to the very top...I guess she thought I looked 'peaked' at the 14,000 ft. mark. Fine....whatever. We got caught in a horrible lightning storm in Nederland shortly after I refused to pay $20 to drive thru Rocky Mtn. National Park....I wanted to hike, but it was getting cloudy, and I was loopy from not adjusting to the altitude. Good thing we didn't or I would have been hit by lightning for the third time in my life...(once my car was hit, and once my house was hit...it wasn't a direct hit.) But at least I was not on a horse.

On the way home, my plane was 'overweight' and we had to fly thru a storm, but at least I was not on a horse. Again, I love horses....just not between my legs...well, you know what I mean.


My daughter had planned all these activities, which were way too much for me, and as it turned out too much for her, a world class athlete. She was overwhelmed with school, her job and her bike racing at that time, and she actually just wanted to spend time with me, and we ended up doing our less 'extreme' activities and having a nice time hanging out together.

So, long story short, sometimes, we can have meaningful times without all the hoopla....and yes, I will likely board a horse sometime, just not right now. But I will never jump out of a perfectly good plane or rappel down a cliff....well, not in the near future anyway.

Dakota, I know for myself when one let down after another happens its hard to stay positive. I think just trying to get through the day and try to hope better times will be ahead. As for the ip place talking about a pain free active life style with no meds. When I was at Cleveland day program they shared stories like that too. These programs in my eyes are about learning to cope through your pain and retrain your brain. I think the support of others there was amazing and learning to push through your pain to some degree. I do feel there was a huge range of people with different pain levels. So for some of them going off meds was an option but for some I feel its not. Do you journal? I really encourage it. It can help you process feelings. Also maybe some things that you and not for others you may want to do. Like I know for me night is a bad time pain wise so if I want to take an art class I need to do it during the day.I'm sorry about your doc but can relate to a bad doc bringing one down mentally. Why do you feel for you it has since you made the choice to stay on them for now? Have you thought more on the stimulator? Ok many hugs.

Thank you so much, Cyclelops. When someone validates me I almost fel a physical rush of warmth or endorphins -- a result of being so hard on myself, I guess.

Daniella, I did a lot of thinking and researching into the spinal cord stimulator. I think for me right now, I am not ready. I am going to first try to lose some weight to see if this will bring my pain level down some, also cutting out sugar and gluten. At least this is non-invasive. Perhaps if this doesn't work for me, I will consider the stimulator. What makes me hesitate the most is that when I researched it on the internet I could only find a success rate of 50% at best (despite the doc telling me it was very successful --who knows?), and I am very fearful of the possible complication of scarring (maybe causing nerve root pain?). I'm not saying I would never try it. Just not until I have tried everything else.... I know some people have found it successful.

Doesn't it feel so wonderful when you feel heard and listened to? I understand and have the same feelings toward the stimulator. I'm still considering it but trying to wait and see what I can do with less invasion as well. I wish docs would be more honest cause I too read about the 50%but then the docs say the opposite. I would rather know the truth and that in itself would make me feel more comfortable and willing. On a side note and I don't mean this as rude or only directed to you but others as well. Have you thought about therapy? I think a place where I have learned that my feelings are valid and that people shoule respect them is in therapy. Its a safe place where I can feel heard and not judged but work on ways to better myself. Just a thought.

Can it be universally stated that we have all: 'BEEN RODE HARD AND PUT UP WET?' That means that if we are not cared for something physically disabling could happen to over 50% of us...
Sue? What you have been doing what they call "hippo [horse] therapy' on are called in horse people talk....'HAIRY SOFAS'...that is not an offensive term by any means...these creatures are wholly the kindest furry huge dogs or cats one could ever find on earth! They KNOW that they gotta be good and they usually LOVE being good to YOU or anyone else they encounter! Give them a carrot or a bananna [w/o skin] or a sugar cube and they will worship you...Kind of like us with our docs? Tho docs arent so easily fed? They can get ya places at times? I owned and rode a NOT sofa...actually one the equivalent of a Porsche with both faulty accelerator and brakes! It was a True adventure, but one I could handle appreciate and respect at that time of my life...I have learned to well, 'scale down' my own physical and performance expectations since then? Such creatures DO tho help you with balance and learning of the finer motor skills. Beleive it or not...tis SO. You have to do lots of 'things' while on a beast to just coordinate getting from point A to B that are safer on that beast than on your own steam. Trust me on this...I KNOW!
I think one aspect of what we deal with is HOW to describe and RATE our pains? My pain THIS year as opposed to last is...well , there are not enough adjectives to properly describe/articulate/whatever it all. Also, because it is THIS time, here and now, as opposed to what I REMEMBER last year to have been...comparison is well, not comparable. All I can try to imagine is a comparison to the possibility of NO pain at all. To expand on that whether there is any sensory input during the 'no pain' time-frame I cannot imagine a time either totally free or merely pain-free? Right now, being any 'pain-free' would probably send me into some sort of sensory OVERLOAD! Deprived is an overload situation, suddenly loaded should be no different? HUMMM....

No answers really from me, maybe more questions? But, IF not only WE ask them, why not hope that RESEARCHERS will ask them as well? Thus get grants that test 'theories' and get answers? Well, we can always HOPE!
Enough of my own blather...others welcome! - j

I admire 'horse people'. I went horseback riding, a long while back, and every one in my family got horses like 'SlowJoe" or 'Molasses'.....I get 'Lightning'. And they give me a stick to whack him with if he gets out of line!!!! Why me? I can't hit a fly with a flyswatter, let alone a horse that is out of control. I survived but required two sports bras for a while.

I have decided that a fall from a horse is three stories higher than I should fall from these days.

I go to a horse show several times per year as I live near a fairgrounds and the admission is free....I like to check out the newest hairstyles. The horses have nicer hairdos than I do....They even have hair extensions!! I have never seen horses with tails that long!!!! I wouldn't mind living in some of those horse trailers either! I get so engrossed in looking at horses, I forget to look where I am walking.

Daniella, I am not at all insulted by the suggestion of therapy. I just don't know that I would ever be able to get anything out of a therapist or group that hadn't experienced pain like this group has. At age 59, I've so little patience with people who think they understand what a life with chronic pain is like. But, I got a lot of help from therapy at several times in my younger life. And you are right, it is great to be in a non-judgemental setting.