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!