I’ve got notes for blog posts everywhere, but I’ve been too busy living life to document how. The important lessons I’ve mulled for years around self care, managing self and managing care team, relationships via electronics (not a new concept for connected spoonies, but now we have more & better tools!), balancing everything against rest rest rest, and soaking up the healing power of having a safe and accessible home… have all been revisited and integrated in many ways. (Boy, the effort that goes into developing a good care team really pays off!)

I’m also getting older. I’m unarguably at least middle aged (despite the opinion of my inner 17-yr-old), my local second-hand shop finally gives me a senior discount, and after 20 years of central pain and multi-system comorbidities & sequelae, the relentless work to get “better” (whatever that means) has become more tiring than it is rewarding.

But that’s okay! When one thing stops working for us, and repairs don’t help or aren’t available, then we sit & listen and wait for that inner voice or inner nudge that leads us in a new direction, right?

Sometimes going forward simply means going a different way.

While I still manage my care team and my patient role with courteous diligence, my overall focus has shifted from “how can we get Isy a bit better” to “how can Isy enjoy what’s left as much as possible with minimal harm.” (No harm is a bit silly as a goal. This is real life, not a nice fiction, so everything is a cost/benefit calculation.)

The focus is different, but the behaviors are very much alike. It’s just that this new perspective is so freeing! At this age and at this stage of apparently-inchoate decrepitude, enjoyment is a powerful motivator, and besides, the decades of diligence for its own sake have worn out a lot of spark plugs and gaskets in the engine of my soul. I’m happy to replace that engine with something a bit zippier.

Having the underlying personality that I do, part of enjoyment is working (obviously); at this time of life, I’m deeply interested in putting together some kind of lifework (also, obviously.) Putting out good work is extremely enjoyable, so, this mingling of motivations is right on target!

It’s good to feel a positive sense of direction. I wonder if it’ll take me where I expect it to?

Horse & woman laughing hysterically

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