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Thank you for bumping this - am reading it bit by bit and digesting it.
I think I am still at 'battling the b*gger' stage (I didn't bother with the why me bit, not a lot of point). Grrr to it.
I found it hard to alter how I dress etc - can't do buttons or buckles so a lot of my gothy clothes don't get worn. I was delighted when I managed to get a pair of black tights on and could wear skirts again! Rings and bracelets don't get worn anymore, but I have many necklaces and earrings.
I had my very long hair cut off so it's easier to style and wash now, that was tough - but it's still bright pink, I refuse to compromise on that!
Sounds trivial, but so long as I can still do my face and eyeliner with bad hands if I need to leave the house then there's still plenty of 'me' left.