hypermobile Ehler Danlos Syndrome and the broken robot

I don’t want to be defective.  I want to ignore it.  I’ve lived with it so long without knowing what it was - ignoring all the ways I was 'weird' and 'broken robot waiting to be fixed', that I want it to actually be the normal way bodies work and I’m just the one having trouble dealing with it.  But I know it is not how normal bodies work, just how mine works and it is not going to get better unless I stop doing the damaging activities or at least reduce them.   I need to find a happy medium where I am not moving thousands of pounds of product every day, but but not a sit down all day job either, as that stiffens and atrophies the muscles and will cause other problems.

And it is a personality issue that I get frustrated with the delayed work-pain response and instead of taking it easy for the day I get angry at the pain itself -  and then enter some adrenaline stress mode where I do physical things even a normal person has trouble doing – out of the sheer will to do it and extra-stretchy ligaments and some sort of stubborn death wish – and pay for that even harder than my normal days.  On a normal day I feel the pain response about 10 to 12 hours later.  When I've overworked and stretched beyond physical limits it can come on even sooner.  But then at least, I feel like I’ve earned those hours of pain and fever and crashing asleep for ten hours at a time.  And I’m tearing myself apart, bit by bit.  Now that I’ve come to that mountain where I’m looking down and saying ‘I can’t do this to myself anymore’ is where the real hard part begins.  So, what am I going to do instead?  And why do I always feel unworthy unless I have beat myself right to the edge of tolerance?  And the other scary part is, where will I be in ten more years if I keep doing this?