I agree, it is very hard to find the right way to balance living with this illness and leading a reasonably productive life.

You also depend (more than healthy people) on the good will of those that work with you.

At the same time it gives you the opportunity to do things differently. To find the way to make them good willed. To find in yourself talents and abilities you didn't know could exist which compensate for those you have lost.

There is an inevitable phase of mourning about the loss of the kind of life you had before. But, then there is the phase of picking up the pieces and building something new from it.

It is like learning to walk all over again. It takes time, energy, motivation and a lot of frustration, but it is also quite rewarding. You have to learn to view your life from a new angle. And only you can do it because it is your life.