I did stop taking the steroids, and life is much better without them, tho' they probably help me have energy that's more similar to other people. Itchy ear canals have stopped, and fore/head much less burnt. However, so far I seem to have around 1-3 hours available per day of non-lying-down-activities. For example, today I was NOT lying down or asleep from 5-8:30pm.
It is a huge mental adjustment, realizing that I am able to do almost nothing but lie in bed.