When I was initially injured on my job as a nurse in 1986, I continued to work, only giving my low back pain any recognition when spasms hit at the end of the day.  Two more injuries followed, six months apart, affecting my upper back and shoulders.  But, I continued to work another six months after the last shoulder injury, until I was no longer able to lift a pen or write/type.  

While off-work, I still pushed myself to do the normal, regular activities that needed done every day.  My low back pain progressed: Once able to walk an entire store (every aisle) to do grocery shopping, little by little my back got worse, until I could measure a grocery trip by only going down one aisle of the store.  Then a medical condition affected my legs, forcing me to be in bed an entire year -- until a different medication was found to control some of the increased pain.  

The day after starting the new medicine, I thought "Well, let me get back to my life now."  I knew I'd have to exercise and strengthen weaken muscles that hadn't been used in over 12 months, but I also thought I could simply resume my normal life.  However, my body's message was 'enough is enough, no more!'   

Determined to get well though, I cut back the amount of activity, thinking I'd start slower than I had tried initially.  I planned to do only 30 minutes of activity at a time, rather than trying to do it all without stopping.  But, my body kept saying 'no way' -- until I was reduced to only exercising a few minutes at a time!  That was ALL my body could do.  I got an exercise video that is used for stoke patients, but found I could not even sit for 2 minutes to do those very "easy" exercises.  (Well, they had been "easy" things to do a year ago!  No longer were the "easy things" easy for me though.)

The new pain (that had no diagnosis) at first was barely covered up by the new medicine.  The pain was finally diagnosed as "polyneuropathy" (poly=many + nerve pain; See  peripheral neuropathy), one of the most baffling, frustrating, indescribable pains I've ever experienced!  

Neuropathy is common in diabetic patients, or for amputees or after a nerve injury.   Mine might be from my back or from ischemia (decreased oxygen+blood flow; See DVT; see peripheral neuropathy) in my legs  --  but from whatever cause, it is just as painful.   

Part of the difficulty with neuropathies is that it is felt in many different ways - there is not one way to describe it, and each person describes it differently.  My own favorite description is this: Imagine putting your hand in a high, hot flame (like a camp fire) and simply leaving it there - forever....  But this pain type is also these things at various times: shooting, stabbing, light touch feels like electricity or a sharp pain, tingling, twinge-ing, reversed hot-cold sensation...and much, much more.   In addition, I developed leg tremors and now have a difficult time walking or doing much activity at all.  (See Movement Disorders.  Funny, one of the pictures on that website "looks like" me.)  Later I was diagnosed with tonic-clonic myoclonic tremors (without Seizures), but no one knows if it is a medication side effect or from some other cause (like my low back injuries or ischemia from DVTs).  A simple over-view of myoclonic tremors and other spastic movement disorders can be found here.

After months of pushing myself to do "just one more minute" of any activity (including simply sitting normally in a chair with my feet on the floor), I hit my first of many stages in my headlong introduction to being substantially disabled, bedridden, and needing physical assistance every day.  The past 7 years have been a series of adjustments and it's been an uphill fight against this downhill progression.  Once very active, I'm one who has not easily and gracefully accepted becoming disabled.

Added to the difficulty of adjusting to my disability is how others simply do not understand what living like this is like - for me.  The biggest thing others do not understand about my situation is the way my body responds NOW, and how my body is so off from "normal."  I've explained to doctor's offices that "I cannot sit, stand or walk more than a few minutes" and their response is either "take a seat in the waiting room" or "we'll get you a wheelchair" !!  Sitting is sitting - regardless of whether in a regular chair or a wheelchair!  Or, they don't understand that for me, walking even a few steps is better than standing in one spot; standing or walking is better than sitting, but all those cause extreme pain and it is least painful if I can lie down.  They see me walking and conclude I CAN walk (no need to lie down immediately); or see me sitting a few minutes and conclude I COULD stay sitting (no need to lie down immediately).   No one understands that walking a short way non-stop from point A to point B is better than stopping and re-starting to walk.  No one understands that if my walking is interrupted, my foot will not move sometimes, regardless of my will or effort.   No one understands I need my low back, pelvis and thighs to be flat, not bent at all (like bent when sitting or reclining).   No one understands that every second that I walk or sit increases my pain symptoms 100-fold, and that after walking or sitting I will not even be able to stand for 3 to 7 days afterward.   [When I first became ill with DVTs, doctors told me they cause no pain -- but this just is NOT true!  Pain is part of post-thrombotic syndrome, a complication caused by DVTs.  It is a poorly understood complication.]

As hard as it is to make the adjustments I've had to make, other people's lack of understanding of my physical, emotional and psychological being has made any adjustments 100% harder than they needed to be.