![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Certain balances are hard to find
[posted to my journal and to ![[community profile]](https://www.dreamwidth.org/img/silk/identity/community.png)
no_pity]
In theory, I'm all about finding balance in my life (cf. my decision to work at a good part-time job I love, rather than taking "better" offers for full-time work). But then the balance shifts.
Every bad pain day I have makes my available energy and time and mental oomph a moving target. Having three in a row, as I have this weekend, makes me start feeling discouraged and wondering if it'll ever end. But then I'll have a really good week, and I'll feel bullet-proof, and like I could do anything, and I'll start a magazine or something so that all my time is spoken for, well into the future.
The thing to discover is this: How much can I commit to doing in advance, and not risk the crash of having to drop it all if the pain flares up, or if the hormone pills make my legs feel like big slabs of tender meat?
I won't lie and say I'm not discouraged right this moment, but most of the time, I feel pretty good about my choices around this stuff. Most of the time, I let people know that my time and energy are more variable than they used to be, and I have people in my life who get it, and who don't expect me to do more than I can do. But there's so much I *want* to do, and it's hard for me to remember, on a good day, when nothing hurts, that next week, *everything* might hurt, and I might need to spend the whole weekend popping aspirin and sitting in the recliner.
For those of you who deal with varying levels of energy/pain/wellness, what do you do to keep that stuff on a relatively even keel?
no_pity]In theory, I'm all about finding balance in my life (cf. my decision to work at a good part-time job I love, rather than taking "better" offers for full-time work). But then the balance shifts.
Every bad pain day I have makes my available energy and time and mental oomph a moving target. Having three in a row, as I have this weekend, makes me start feeling discouraged and wondering if it'll ever end. But then I'll have a really good week, and I'll feel bullet-proof, and like I could do anything, and I'll start a magazine or something so that all my time is spoken for, well into the future.
The thing to discover is this: How much can I commit to doing in advance, and not risk the crash of having to drop it all if the pain flares up, or if the hormone pills make my legs feel like big slabs of tender meat?
I won't lie and say I'm not discouraged right this moment, but most of the time, I feel pretty good about my choices around this stuff. Most of the time, I let people know that my time and energy are more variable than they used to be, and I have people in my life who get it, and who don't expect me to do more than I can do. But there's so much I *want* to do, and it's hard for me to remember, on a good day, when nothing hurts, that next week, *everything* might hurt, and I might need to spend the whole weekend popping aspirin and sitting in the recliner.
For those of you who deal with varying levels of energy/pain/wellness, what do you do to keep that stuff on a relatively even keel?
Re: Thank you!
And, well, we're taught that planning for the bad weeks is "giving in" to the disability. (Which is bullshit, of course). Or at least I was. But that's wrong.
It just means I make sure I only commit myself to what I know I can follow through with, and then anything else is a bonus - a major bonus, maybe, but a bonus. Pretty much exactly what you said, in fact. I hope it helps for you. :)
Re: Thank you!
It may be a subtle difference, but I'm thinking that my brain likes "Even on a bad day, I can do X" better than "I can do X and Y and Z unless I have a bad day", because it emphasizes what I CAN do rather than what I can't. Maybe that's ableist, too -- I really will have to think about that -- but I like a system that gives me a way to "plan for the worst and expect the best".
Re: Thank you!
It's really hard not to load things onto your plate when you're feeling good now. I can definitely sympathize with that. But I think there are ways to make the good pain day activities things you can do and put down again, and not standing commitments.
Re: Thank you!
Maybe it's about having a flexible set of standards for accomplishment. Some days, a good piece of writing is impressive. Others, not killing myself is.
Re: Thank you!
Oh yeah. There are weeks the only thing I have for the Monday pride thread is, "I survived." And that's an accomplishment in itself.
Re: Thank you!
Hey, I bet there's tons of people in
Re: Thank you!
It definitely works much better for me! The other thing it lets me do is sensibly redirect my energies: if I can get through my "I get paid for this and other people depend on me" job, but it uses up all my spoons . . . . well, it uses up all my spoons (one of the "bonus" things I would do would be to make meals ahead of time, so that on days where work did eat up my whole brain, I could come home and throw soup or stew in the microwave and get on with it). I'm not committed, either in my head or in anyone else's, to doing more than I can.
It helps me to prioritize.
I don't think it's ableist - I mean, if you think about it, it's just readjusting the standard scale for one's own particular circumstances. That tends to strike me more as common sense, but then, I am Pragmatic Girl[tm].
Re: Thank you!
no subject
But that normal is not my normal. It is an amazing day when I can move house without needing to go curl up in the corner and stare blankly at the wall (and I am again not exaggerating or over-stating - people hyperbolize a lot about that and I'm really not). And nobody has amazing days all the time; nobody plans assuming they are going to have three months of consecutive amazing days!
. . . .except us. Because our "amazing" and "normal" are in different positions from most abled peoples' "amazing" and "normal." This, this is, if nothing else, really inefficient. Much better to plan for one's own normal (or, if your worst-case is badly removed from your normal, for somewhere nearer to the worst-case), whatever that is.
*I do not mean "without being cranky and bitchy and unhappy with the world" or "without being tired and stressed" or "without wanting to throw the towel in at the whole thing"; I mean mindlessly and helplessly wandering back and forth between two piles of stuff working myself up into tears and hysterics, because I couldn't even force my brain to give up on the task at hand, but literally could not figure out what to do with a box of clothes when I had no dresser - not even to figure out "leave them in the box and do something else." Could. Not.
Needless to say, I have redesigned all my moving days to avoid doing this again.