Wednesday, April 27, 2016

Strategery: Finding the Breaking Point (Part 1)





I’ve been remiss in posting the past couple weeks. Mea Culpa.

In truth, there are about 15 versions of this post sitting in drafts, from different angles, with different tangents – it turns out that how I’ve been tracking activities and setting goals easily touches all aspects of the entire history of This Crazy Illness.

So the back-story is -- I've developed a system to better understand the new framework I'm living with. Unfortunately, Life isn't using a 24-hour base anymore, and even more unfortunately, I have no idea (and no-one seems able to tell me) the limits I should be working with now.

Astonishingly, exactly zero medical professionals have mentioned "pacing" to me, much less the steps to accomplish it. The closest is when someone mentions "start small -- you know, walk to the mailboxes and back, and then build from there".


And I tried that. The trouble is that both they and I have been overestimating what "small" is. I thought an hour of Senior Restorative Yoga at the Y would be a perfectly reasonable starting point. Not so much. Especially if I'm not taking into account all the other activity that happens that day and week.


And actually, anything on my feet (standing yoga, walking...) comes at a much higher cost and causes a lot of leg pain. (I still say there's a circulation issue going on....)


So after trying and failing at so many goals, I finally sat down to find the breaking point. Are these goals failing because they are too big at the moment, or is it because of everything else that is getting in the way. And exactly how much 'life' stuff has to happen each week that I need to work around.


What I wound up with is still a work in progress, but the in-progress part is actually one of its best features. Looking at it now, there's a heavy influence from both Ben Franklin and Agile Software Development, and it's basically an iterative process for narrowing in on Life.


A little more background on why I needed it... next week I'll explain the system:


- To understand my limits

I am very bad at understanding cause and effect when the effect might occur hours or days after the cause. I've always had a fuzzy sense that a big day comes at a cost from the day before and the day after. But how much of a cost. And how much is too much?

I have a terrible habit of blowing past my physical limits and winding up in trouble the next day, with all of life de-railed. I need to feel more in control of life. And that starts with knowing the size of the box I'm dealing with. The box is no longer '24 hours in a day' to fill up as I wish. Knowing the boundaries is a big step in wresting control back from This Crazy Illness.


- To plan achievable goals

More than one person has looked at the chart and worried that I might be boxing myself in, putting unnecessary limits on life, becoming too wrapped up in the details of tracking, or 'giving in'. Au Contraire.

You know what's demoralizing? Setting goals and failing at them over and over again. There are So Many things that I want to do. From big long-term accomplishments, to get-through-the-day tasks. And again, if the basic framework is no longer '24 hours minus sleep', I need to know what it is, so that I can fill it well, set good priorities, build momentum, and make progress, however small.


- To anticipate crashes before they happen

Another point to 'morale': being able to avoid crashing into a wall, sacrificing 'lost' days to something that might not have been that important, or could have been avoided.

If I can see the week ahead and see that there is a busy day full of good things that will put me over the limit, I'm able to choose for myself where the balance will come from, ask for help (in theory -- in practice, I'm terrible at this), and feel much more in control because I've decided for myself that the activity is worth the cost.


- To give myself permission to stop

There are many things I both want and should do more of, and it is hard to keep myself from pushing through them. I may feel like I can pick up the house for another half an hour, but if I know exactly what the rest of the week looks like, I can give myself permission to stop because I know I'm saving energy that I'll need the next day.


- To communicate better with doctors and, well, everyone

I am notoriously terrible at communicating with everyone, especially doctors, and equally notorious for giving the impression that I have my act together. I start every conversation with medical professionals with the warning: "you really can't trust what I'm saying". But then I launch into my well-prepared, well-rehearsed appointment agenda, and it's easy to think I might actually have my act together.

It's one thing to say "if I have a big day, I have to stay home the day before or the day after" -- It's another to have the data that shows exactly what the activity limit for the week is, and the consequences when I went over it.

Equally, there is a big difference between 'how I am' one day to the next, and even just morning vs evening. For a variety of reasons, some because of the illness itself, some because of medicine and side effects. But this means that a doctor only sees one day out of three months and tries to gauge 'how I am' overall, and is probably not getting a very good picture of Life As It Stands.



"Know Thyself"

I am living in a land of unknowns. We don't know what's causing this, and even more -- we don't know if it's going to get better. I have felt for awhile that I have hit a long-term plateau in terms of physical healing. But I am getting better at managing all of this, which gives the appearance of improvement.

Which is both good and bad -- very good that I'm getting better at Life, and able to have more good days that go the way I hoped they would. Bad in the sense that it gives the impression that I am improving, and belies the giant cliff looming just off-screen that I could trip over with one wrong turn.

If I was 'Well', it would probably seem a little bit ridiculous, and even with this illness, sometimes seems like overkill. But knowing exactly what the bank-balance on activity is, is probably the most empowering thing to have come out of the past two years. I want it to be a way to communicate with others exactly what Life looks like, and the reasons I can seem okay while still being very not okay.

But even if that doesn't quite happen, it is a huge step forward to put actual numbers on things and foresee the consequences of taking on too much... it means getting back the power to make my own priorities and build exactly the life that I want within these new boundaries.


More Strategery

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