Certain balances are hard to find

[serene]

[posted to my journal and to 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?

Comments

[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 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 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 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 :)

[jeshyr]

PS
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 :)