Class and the Spoon Death Spiral
One of the biggest problems with being Not An Able-Bodied Person is that managing a disability is more or less a part-time job. Maybe even a full-time job. It's actually a lot like a consulting job. The hours are erratic -- you might be working very hard to manage your disability for several days at a stretch, and then have a couple weeks of fairly good days; the payoffs can vary, and you never know what might be coming up next. Some days, just managing a physical disability takes more spoons than other days.
I'm going to be slightly perverse here and state the obvious: That is a problem. Many of us already have full- or part-time jobs, relationships, families, household obligations, and maybe even social lives and hobbies. (*gasp*) My experience is of always feeling pressed for time. There are so many things I feel I should do in a day, and there's never enough time, or enough energy to do them in. Added to that persistent feeling (aggravated no doubt by my equally perverse ambition) is the objective observation that it takes me measurably longer to do many, many things, compared to an able-bodied person. I have confirmation of this objective observation: I recently applied for a disability pension in the jolly old Province of Ontario (aka the Beneficent State), and my panel of doctors and experts and qualified medical personnel repeat the damning charge over and over again. Physically, I'm just slower than average. (We will leave speculation on the state of my cognition to the trolls, thanks.)
Not to put too fine a point on it, but that sucks.
It's especially bad when combined with my income level. Amazingly enough, she said, as though armed with a Flit gun full of irony, having money actually helps mitigate some of the effects of having a phyisical impairment and just not having the spoons to do things.
Where I notice it the most, at least for me, is in my physical surroundings. Lately, I've been working so much that I've basically worked myself into a physical crash. I haven't been sleeping right, I haven't been eating right, and I haven't been taking enough care of my environment. Consequently, there's a mountain of dirty dishes accumulated in the kitchen, my bedroom looks like the result of an explosion in a building housing both a laundromat and a library*, my office is just scary, and the space behind the toilet is growing a carpet of cat hair. (My cat enjoys making the U-shaped circuit between the toilet, the bathtub, the bathroom cabinet, and the back wall of the house. Don't ask.) I'm scared to even look at some of the stuff in the fridge, because I'm terribly allergic to mould.
Now, if I were richer, I wouldn't have so much of a problem with what you might call "physical plant issues." First of all, I could probably afford some better drugs to help me sleep. Secondly, I would be able to either pay to have people prepare food for me (at a restaurant or for take-out/delivery), or I would be able to buy more ready-made convenience foods (what few of them I can eat) that provide adequate nutrition with minimal energy expenditure. (I realise that living on tins of stew, President's Choice frozen dinners, boxed meat, and stir-fry in a bag isn't an optimal diet, but it beats what I had for dinner the other night.) I'd also, and this is a big one, be able to hire someone to come in and help me keep up with the cleaning. I'd probably still have to do most of the tidying (that is to say, restoration of articles to their rightful storage spaces), but the floors would get mopped, the carpet vacuumed, and the toilet scrubbed far more often than I can manage it myself.
Being able to do that would raise my quality of life significantly.
Even at my soon-to-be improved rate of pay and average hours of work, implementing the strategies listed above would still be a huge financial burden. I can probably do some of it, but most of it is still out of reach. So where I'm at right now is what you might call the Spoon Death Spiral: I've had no spoons to speak of for the last week or so. Therefore, the dishes have piled up, there are books and clothes all over the floor, and the house needs a really good scrubbing. Unfortunately, in order to do that, I need to have spoons. However, even assuming I get sufficient spoons to do all that (and it seems like I never do have enough spoons to finish everything completely), doing it would probably leave me so spoonless that I wouldn't be able to maintain the order I've (artificially) imposed on my (hyperentropic) existence...and the dishes would pile up, the floor would go unswept, and I'd still be living on microwaved prefabricated perogies and dried fruit.
I'm not just throwing out wild surmises, here -- I've lived through this, over and over again. Yes, when I'm having a good period, I do try to keep up with stuff by doing a few minutes here and a few minutes there, but that doesn't help me a lot when I am trying to cope with fatigue that has me sleeping 18h a day one day and none the next, or a four-day vascular headache. And even if I do have the spoons when I'm only feeling slightly crummy, I'm as predictably human as you, and I'd much rather spend those spoons reading than doing dishes and scrubbing toilets. I'm not going to lie; I'm just not capable of being a Responsible Adult™ (New! Self-Martyring Model!) all the time. I like my fun just as much as anyone else. If you find someone who thinks that washing dishes and scrubbing toilets is actually fun, can you send them to my house?
The only bit of abstract wisdom I can add here is that contrary to that old saw, usually trotted out by smug conservatives of one stripe or another, actually, there are lots of problems you can solve (or, if not solve, at least diminish to a great degree) by throwing money at them.
* Blame the cat for his delightful tactic of systematically pulling books off my bookcases in the morning so I'll hear it and get up to feed him.