serene: fuck cancer (fuck cancer)
[personal profile] serene posting in [community profile] no_pity
[posted to my journal and to [community profile] 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 subject)

Date: 2009-05-25 01:50 am (UTC)
recessional: a small blue-paisley teapot with a blue mug (Default)
From: [personal profile] recessional
I tend to have this issue with depression, rather than pain, but if I anticipate it to be an ongoing on-again-off-again thing, what I tend to do is keep absolute commitments (things that other people depend on me for, job things, etc) to around about what I can handle if I have a string of really bad days.

But then on top of that, I have things that can be picked up and put down, or that are just for me, or that otherwise aren't time dependent, to pick up and do when I have a string of good days. Short-term projects, that kind of thing.

Re: Thank you!

Date: 2009-05-25 03:18 am (UTC)
recessional: a small blue-paisley teapot with a blue mug (personal; a fortress)
From: [personal profile] recessional
Hey, the whole abled world is based on the idea that "bad days" are really short and fleeting - a cold, the flu, something else quick and simple to get over.

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. :)
Edited Date: 2009-05-25 03:18 am (UTC)

Re: Thank you!

Date: 2009-05-25 03:45 am (UTC)
staranise: A star anise floating in a cup of mint tea (Default)
From: [personal profile] staranise
I plan things the way [personal profile] recessional does on a school basis: if I won't be able to do it the month before finals, I don't sign up for it. I think regarding the Y and Z extra activities as "goodies"--extra things I get to do when I can--would definitely help me think more positively (even if it's a "goody" that I can walk to the bus instead of taking my car, or do laundry in the first time for forever.

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!

Date: 2009-05-25 03:47 am (UTC)
From: [personal profile] axelrod
Huh. I think I do this: "Even on a bad day, I can read my flist and reading list, and go to work [my part-time job is a lot less stressful and overwhelming than classes and classwork]" - and if I can't, then I'm having a really bad day and just getting out of bed, showering, and eating is enough.

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!

Date: 2009-05-25 03:49 am (UTC)
staranise: A star anise floating in a cup of mint tea (Default)
From: [personal profile] staranise
Some days, a good piece of writing is impressive. Others, not killing myself is.

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!

Date: 2009-05-25 10:54 am (UTC)
jeshyr: Blessed are the broken. Harry Potter. (Default)
From: [personal profile] jeshyr
Me too. And it totally IS an accomplishment!

Hey, I bet there's tons of people in [community profile] no_pity who don't know about the Monday Pride Thread and how wonderful it is. It'd be great if you wanted to write about it and post here! (I'm subtle like a sledgehammer - feel free to say no or just ignore me :)).

Re: Thank you!

Date: 2009-05-25 02:39 pm (UTC)
recessional: a small blue-paisley teapot with a blue mug (Default)
From: [personal profile] recessional
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"

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!

Date: 2009-05-25 10:52 am (UTC)
jeshyr: Blessed are the broken. Harry Potter. (Default)
From: [personal profile] jeshyr
This is so true and so wise! The whole world does encourage us to plan around a least-disabled or least-sick scenario in lots of ways, and it can sabotage people in really subtle forms.

(no subject)

Date: 2009-05-25 02:46 pm (UTC)
recessional: a small blue-paisley teapot with a blue mug (Default)
From: [personal profile] recessional
I sort of thought about it, and I guess it comes down to a different stable position of "normal". I can look at that one from the ASD perspective: it's "normal" for someone to be able to handle, say, a full day of moving without a complete mental meltdown*. Because it's "normal", normal people plan around it. And we get so fixated on that "normal" that we try to plan around it.

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.

(no subject)

Date: 2009-05-25 03:41 am (UTC)
From: [personal profile] axelrod
Coming at it from a mental illness perspective - and I have 'up' moods, when I get really optimistic and enthusiastic and creative, and then later even if I haven't made a commitment to those new projects I feel so overwhelmed because I want to do them (or want to want to do them, sometimes) but don't feel capable.

I play it by ear, and sometimes I say, "Sorry, I can't do this in the time I said I would" or "I can't do this at all" - either to others or to myself. There's usually a sense of shame, and so sometimes I don't admit that I can't do something in a timely manner. But sometimes I just have to give up, a little bit. I used to force myself on more, driven by fear of failure and will power. But I'm much less afraid now and it's rarely worth it to me to work through emotional pain.

It's frustrating, because I wish I could make commitments (whether to myself or others) and stick to them more reliably. Still, it can be useful for figuring out what really matters to me - when I only have so many spoons, what do I do with them? I'm esp interested now that I'm (nearly) done with college (aside from my thesis). What will I read, what will I write?

I guess my goal isn't to keep things even, because I can't do that (though things should continue leveling out for me). My goal is to learn how to shift my weight as skillfully as I can.

More practically, the big thing for me has been getting extensions for academic work - mostly I just need more time to get things done, because depression is time-consuming. I don't know what your job and activities and commitments outside of work are, but committing to things that aren't time-sensitive whenever possible could be one tactic.

(no subject)

Date: 2009-05-25 11:03 am (UTC)
jeshyr: I'm disabled, not dead! (Disabled not dead!)
From: [personal profile] jeshyr
I don't have issues with school and work because I can't manage either, so I have more freedom to pick my own tasks than most people but what I do is fairly similar to what [personal profile] recessional posted.

I have three types of things on my "to do" list:
  1. Things that have to be done on a certain date. School example: sitting an exam.

  2. Things that have a final "must be done by" date but can be done at my own pace as long as they're finished on that date. School example: An assignment.

  3. Things that have no date requirement, they're just things I want to do. Currently one of these is "read all the posts and comments in [community profile] no_pity" for example. If it never gets done there's no problem, but I really want to do it.

I make sure that I know which item is which type, at least in my head. Writing a letter to my Nana is something I do regularly but there's no specific penalty if I don't do it so it's a type 3, whereas writing to the electricity company about my repayments of the bill is definitely a type 2!

Then the trick is that I don't take on type 1 and 2 jobs unless they could be accomplished at my worst health status or they're things that I could re-negotiate or delegate to somebody else if I had to.

As I said, I've got no school or work commitments which helps a lot because "worst health status" for me means no functioning at all and not accomplishing anything except survival. So I try to make all my commitments type 3 commitments - ones that can be done when I can manage them but can also be put off if I can't manage them. So what do I do? Well I look after this community and [site community profile] dw_accessibility, I run other non-DW blogs, I design T-shirts for No Pity City ... they're all things that will be OK if I suddenly have to spend a month being partially or totally non-functional (compared to my "average").

And, actually, I have just spent about 6 weeks being non-functional most of the time so if you take a look at ATMac there's a message there saying "no new posts for a while!" and I've just been doing 5 minute bits and pieces when I can manage them. And the world has failed to end, so I guess I've done an OK job :)

(no subject)

Date: 2009-05-25 11:11 am (UTC)
jeshyr: Blessed are the broken. Harry Potter. (Default)
From: [personal profile] jeshyr
I have no idea what your diagnosis is, so this may be totally irrelevant but I thought I'd toss it in just in case! Another thing that helped me was Bruce Cambell's CFIDS/Fibro Self Help Course. I did the online version of the course and I think it's relevant to a much wider range of diseases that CFIDS/Fibro. The course talks about "envelope theory" which is the idea that if you do too much stuff (you're "outside the envelope") then you end up crashing and having a really bad patch, and that to NOT do too much but figure out how much you can do without making yourself worse ("staying inside the envelope") means you can generally avoid having so many self-caused bad flare ups and that the flare ups won't be so severe.

There's lots of other things in the course too, but I really think that it could be useful to anybody who's got a disease where your behavior affects your health.

No financial interest, by the way - just a happy customer :)


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