This is such a tough one, or at least it has been for me.
I used to temp as a secretary, because it gave me a break every few weeks between jobs, and if I was ill, leaving early was not a problem. Neither was taking a day off. Just so much easier than a regular 9-5 job, so it worked for me for some time. I'd probably still be doing it, but trying to get 35-40 hours a week in for enough income was just tough going. Besides... honest truth? I hated being a secretary!! That, and as time went by, the cognitive side of it was rough. It took me two hours one day to fill out my time sheet for the previous two weeks.
Then I went to massage school, hoping to get some training that would allow me to open my own business and be in charge of my own hours and energy "expense." I can really relate to what Nanou has said here. I did get a business opened and up and running, and then some time later relocated to remarry, so closed it down. It was actually a great relief to do so, because I'd quickly discovered the truth that is taught in marketing: A J-O-B is someone else giving you a job, a self-owned business is you giving you a job, and it's only a matter of time before that job owns you. It was working into that with a brick-and-mortar business with set hours for clients, even as it was growing slowly. I would work on a client for 1-2 hours, take a break, then work on another. Adding a third -- again for income level -- seemed impossible. Adding any chair massages at businesses to build my business was a joke.
My colleague down the hall would watch me in between appointments in total alarm, and ask me why on earth I was working at all. Sad truth is, doing massages like that is far easier and much faster money than working at a desk.
I've looked into adding a sideline or replacement work, like medical transcription or an eBay store with hand-made items, and every time I think it all through, it comes down to keeping what I have and doing the best I can. Every attempt at retraining for something else has met with disaster, mostly because it means I'm trying to do two things at once.
Another aspect of this for me, which I am trying to get over and let go, is dealing with family's anger. Can't say how many times I've been confronted with my apparent loser status in life, and why don't I have health insurance, blah, blah blah... enough said for that piece. Once I recognized that I could separate the in-my-face reality of making it financially from the social pressure I was under to make it by someone else's rules (normal person rules, I suppose), I've had a lot easier time dealing with making it financially. I still do not have health insurance; that can be a waste if not used at all (only need catastrophic), and then if I have to drop it, the money was wasted, money that could have been used for other things like herbal medicine. It just seems like such a fickle little detail sometimes when there are far more pressing issues at hand -- like eating, keeping a roof over my head, you know, the little things.
It's a commentary on the social aspects of this illness that someone honestly pulling their own weight to the best of their ability would have to face any flak whatsoever about making an income.
I have been blessed the last 18 months to make enough of a recovery to go back to work doing massages 4-5 hours a day 5 days a week. Will keep it going as long as I can!!