New frustrations. Just maybe. And treadmills.

I am shocked to find that the potassium blocker prescribed does, actually, help keep my blood pressure even. It's a POTASSIUM blocker. Like milk and dairy shit. No idea it could help your heart work better. So go the mysteries of science.

Jesse and I had an illuminating conversation on recovery from chronic illnesses. He asked how far I could go on the treadmill when I first started exercising. "Uhhh, about a quarter mile," I said. "And even that wiped me out." He then asked how far I was going right before lupus jumped up and went Hey, Lupus! "Two and a half miles, five days a week."

Then he asked me how long it took to get there. I remember it taking almost a month. Then, as a final question, he asked if there were any times that I was too sore, too tired, or too ill to work out.

"Plenty of times. It always set back my endurance, too. But I also always managed to work back up to those two and a half miles", I said, beginning to understand the connection. While this is a hell of a lot more severe than the ability to climb on a treadmill, it helped me realize that (1) it's okay to have setbacks that actually set you back and (2) that I can work back up after that.

Not that I'll ever likely be able to run another two and a half miles, five days a week (metaphorically, at least), but it was a good analogy to ease some of the rage I have about this whole thing.

I like metaphors and analogies.

A new resentment that I am only now beginning to recognize: The insistence that sick people focus on "the small joys of life." I've never had a problem finding or treasuring those moments before. My journals over the last 20 years are littered with records of small moments of delight. The relaxation of a cup of coffee and a good friend. An astounding sunrise. Watching a squirrel dash about on an emerald green lawn.

It's just that before I used to also have BIG moments. A full life, an active life. I do not consider what I have at this time much of a life at all. To be told that I now have to focus on "the small things" feels like I'm being told, yet AGAIN, "to make do with less."

I don't want less. Hell, I don't even want MORE. I just want what I used to have.

It makes me wonder if constantly touting the small moments is simply something that sick people say to make themselves feel better. As if being ill gives us some kind of superpower to enjoy life on kibble instead of the full meals that normal people eat. As if our illness gives us a special sense of inspiration and focus that normal people don't have.

And that, my friends, is just total fucking bullshit.

Idk. Maybe there's merit to the idea. On my good days, I DO notice the sunrise. I DO see the squirrels. I DO have coffee with friends. It's just with so many bad days that stretch into weeks, it gets hard to remember them.

But maybe today is the day Jesse and I can go to the park and just sit on a bench for half an hour. Granted, I'll have to put on, like, a MILLION coats of sunscreen to avoid a flare, but just maybe.

That's where it feels like my life is right now. "Just maybe."

Well, wearisome as it might be, here's to "just maybe."

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1071751.html
It's little comfort sometimes. But fostering a greater appreciation for the small things did help me at least.

And maybe it's just that your big things will require more pre-planning and organisation to fit in around your illness.

I dunno. it just fucking sucks really.
I think, in the end run, you're going to be right about how the big things will simply have to be pre-planned instead of the spontaneity they used to occur in. And maybe that isn't such a bad thing. I'd have to learn that as I age anyways, right?

Maybe. I hope at least.

You always post things that remind me of small moments, the things to notice and keep hold of. Especially the pictures you've posted. You just don't get that kind of country here in the US. It helps remind me that sometimes noticing the outdoors can be, well, helpful.
Yeah, all of the big things do take more planning as one gets older. You lose energy, you get a busier life, you have other commitments, you get an illness or become infirm or disabled, you have kids, or whatnot. I mean your case is at the extreme end of the bell curve for this, but it is still a skill we all have to learn.

Hopefully, at some point, you'll find some sort of balance.

Do you have any interesting outdoors around you at all? Or is it all just city as far as the eye can see?
Never count that in "small joys". It's rather "worked" or "worked not". And this state of "worked" can vary with the days. (Sometimes maddening often "worked not", and other days "worked like it was wished at best".)
A lot of it is neuroplasticity. The idea is that you have stay in the habit of being happy -- by "training" your brain to enjoy the little things that you have, you retain the ability to enjoy big things. And to some extent, the emotional fortitude to plan and expend effort for bigger things.