It is hard not to despair with this long rash of inadequate doctors.
My father turned 60 earlier this year. He asked me, "What's the treatment plan and what's the prognosis?" I said caustically, "There is no treatment plan. And I don't know the prognosis."
I have obediently done seven rounds of physical therapy. Some aquatic, some on land, some with more emphasis on machines, some with more emphasis on isometrics. Accordingly, I've become quite toned, but no less lax. In fact, my laxity has steadily increased. I get the impression that it would be worse if I was not physically active. But physical activity has by no means stopped it. And it certainly hasn't cured me.
But if I raise my voice even slightly–if I make the slightest complaint about this laxity and the subluxations and pain it causes, suddenly I'm not motivated. I'm not working hard enough. That's it. Just, I'm not trying hard enough, because obvious if I were, I would be fine. Oh, and I'd have a job. I think it's just rich that these doctors think the standard of care they provide is enough for even day to day living, let alone employment.
I mean, if all they intend to do is watch and take notes while EDS steamrolls me then they can let me know so I can stop paying for it! I'm just so sick of it all. I'm sick of them, I'm sick of the disease, I'm sick of myself and my helplessness in the matter.