Jody: Your words provoked such emotion in me; I have tears streaming down my face - thank you - I find it important to feel anger and sadness...housebound and mostly bedridden after 20 years of symptoms, my group of friends faded away long ago)...
With a successful high-profile career I was very much a people-person "before" and the almost total isolation I have experienced for over a decade would most assuredly be unimaginable for most people; however, I have grown so much emotionally - when one has no one else to rely on, self-sufficiency is imperative, and actually quite empowering - ironic, for sure.
The worst part for me is realizing how much antipathy society feels toward the most vulnerable among us - I can live with it myself because I feel that my spirit is strong enough to sustain me, but when I think of all of the suffering in such a harsh environment, well, my heart just aches.
Even though I would love to go outside and see the deer in my yard or go for a swim or go out for a nice meal, I fantasize mostly about social issues and trying to make a difference in the lives of those even less fortunate.
I must go rest now, but I'm proud that I'm not the kind of person who would drop another human being because they've 'inconvenienced' me with their illness. That acknowledgement makes the fatigue and pain worth it for me - more irony I suppose.
I have a feeling people in this forum would understand that.