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A friend is researching fr a blog post and asked...
I feel like a bit of an imposter answering this because my limitations are trivial compared to those of so many people I know. OTOH I just had a day spent largely in bed where just deciding to do something about dinner was almost too much effort; let alone deciding what to have when it turned out I didn't have the ingredients for plan a.
As I said I know many people who while very intelligent, very full of potential, often very skilled and productive in their own ways are prevented from either making the contributions they would like to society or (and this is the greater shame) being seen to be of value and included as such simply because their illnesses or their ways of thinking or both mean they cannot cannot reliably stick to a set schedule - at least not the schedule society demands of us.
I am fortunate to have a job which works around my illness (slowly recovering from depressions/burnout); employers who accept (even if they may not understand) that I can't drag myself out of bed to be there at a certain time each morning and that if I am there early chances are my brain is gong to shut off equally early, and who consider my skills bring sufficient value to the company to pay me a generous amount for the time I do spend there.
Being nowhere near as certain of this as they are, I often find myself pondering what life might be like should they decide I could be better replaced. I have no answer for that question. If in that situation I could find (or start) another business with a similar mindset I would certainly work. My hobbies such as they are alas don't really translate into a potential income stream (I've thought long on that) although coding could from some angles certainly be considered a "hobby" for me.
On the silver lining side going through this has given me reason to consider society's current expectations about how a life should be lived and what makes a person a "valuable contributing member of society" and come tot he conclusion that they are a chamberpot full of shit (chamberpot: rendered obsolete by modern technology in most situations and shit: stinks).
So for me / in my case the frustration lies not so much in not being able to hold down a job but in that holding down that job (which even part time takes most of my available energy, and suffers when circumstances lead to prioritising eg the Hall higher for a bit) leaves me not being able to do the other things in life which take similar energies - like housekeeping, like using those skills on my own projects (I rarely code for my own purposes any more), like reading for pleasure, like the game prep my players deserve, like (much needed frankly) exercise.
As my recovery (which I have gradually come to accept may never be "complete") continues; if more things can be stacked favourably; those are the things I want to bring back into my life.
I'm particularly interested in people's input on the difficulties of trying to hold down a job while maintaining your illness. And the frustrations of not being able to work not so much because you CAN'T but because you cannot reliably stick to a set schedule. Also what things do you do to keep busy if you are not able to work? Are the hobbies you pick up able to be translated into a potential source of income? Would you be willing to work if there was something that could be worked around your illness? If there was a business that understood that some days you can't do anything and there will more often than not be no warning for those days. You know the stuff - you're not totally broken but sometimes it feels like you might as well be because so many things are stacked up in a way that just doesn't work for us.
Have you ever thought about what you would like to do if the illness was the ONLY thing in your way? You're stuck with it, but if all the other variables were stacked favourably - what would you want to do, what COULD you do?
I feel like a bit of an imposter answering this because my limitations are trivial compared to those of so many people I know. OTOH I just had a day spent largely in bed where just deciding to do something about dinner was almost too much effort; let alone deciding what to have when it turned out I didn't have the ingredients for plan a.
As I said I know many people who while very intelligent, very full of potential, often very skilled and productive in their own ways are prevented from either making the contributions they would like to society or (and this is the greater shame) being seen to be of value and included as such simply because their illnesses or their ways of thinking or both mean they cannot cannot reliably stick to a set schedule - at least not the schedule society demands of us.
I am fortunate to have a job which works around my illness (slowly recovering from depressions/burnout); employers who accept (even if they may not understand) that I can't drag myself out of bed to be there at a certain time each morning and that if I am there early chances are my brain is gong to shut off equally early, and who consider my skills bring sufficient value to the company to pay me a generous amount for the time I do spend there.
Being nowhere near as certain of this as they are, I often find myself pondering what life might be like should they decide I could be better replaced. I have no answer for that question. If in that situation I could find (or start) another business with a similar mindset I would certainly work. My hobbies such as they are alas don't really translate into a potential income stream (I've thought long on that) although coding could from some angles certainly be considered a "hobby" for me.
On the silver lining side going through this has given me reason to consider society's current expectations about how a life should be lived and what makes a person a "valuable contributing member of society" and come tot he conclusion that they are a chamberpot full of shit (chamberpot: rendered obsolete by modern technology in most situations and shit: stinks).
So for me / in my case the frustration lies not so much in not being able to hold down a job but in that holding down that job (which even part time takes most of my available energy, and suffers when circumstances lead to prioritising eg the Hall higher for a bit) leaves me not being able to do the other things in life which take similar energies - like housekeeping, like using those skills on my own projects (I rarely code for my own purposes any more), like reading for pleasure, like the game prep my players deserve, like (much needed frankly) exercise.
As my recovery (which I have gradually come to accept may never be "complete") continues; if more things can be stacked favourably; those are the things I want to bring back into my life.
