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.
Love your hat, SP. Here's hoping all the rest & lying down are promoting healing. xoxo
ReplyDeleteWell I know what it's like having to spend most of life lying down. Hard. Good novels can be a boon, though you may not have the energy to read. Would you like some ten minute MP3 meditations and body scans?
ReplyDeleteYou are a great inspiration but I guess you already know that (I hope) and you always look so cool even with needles stuck in your face and other adornments. Big love xx