Project #fuckpots progress

I had one of those mental clarity moments last month that went something like this: nothing I did to make POTS go away so I felt consistently better was doing much good, so I decided, that being the case, that I had to figure out how to have a life anyway. My motto has been “If you’re tired, do it anyway.” (First modification: “If you’re tired, try it anyway, but it’s OK to rest if it really is too much”!)

I really don’t think there’s much help for my POTS except symptom control and daily lifestyle maintenance. I’ve tried all the obvious meds without much success, or at least none that is worth the side effects. That leaves me with salt, hydration, exercise, and rest.

In other words, waiting until I feel better to do anything will result in nothing ever getting done.

I happened to get a new planner (Passion Planner), coincidentally, which builds on overall goals and has you break them down to monthly and weekly goals. Goals to a chronically ill person are a tricky thing to fathom because largely your goals get really short-term (“get out of bed, don’t fall over all day, and then be able to get back into bed” has summed up my goals for some years now). I had completely lost track of actually accomplishing anything and didn’t have any concept of it. I literally could not think of much that I wanted to do other than not feel sick all the time, which, as we have established, is an unreachable goal.

But the planner inspired me to at least think about it, and it took a couple of weeks, but I did ferret out some things I’d like to work toward. It’s painful to realize that you can’t do anything full steam ahead, and planning anything is not a normal process when you have an illness to contend with, so I’m gradually experimenting and figuring that out: notably, you can make all the plans you want, but there’s no point expecting the plans to go the way you think they will, because they absolutely will not.

Lessons learned so far:

  • Slow progress is still progress.
  • If it doesn’t fit into my daily planner space, I’m not going to have the energy to do it anyway.
  • More important than crashing through to finish a goal is being upright and having a little energy at the end of the process.
  • Many things turn out to not take as much time or energy as I think they’re going to.
  • It’s worth attempting a thing I think I’m too tired to do, because often I can still do it or at least do part of it. (Again: slow progress is still progress.)
  • I absolutely have to build in resting contingencies. This is key. With my POTS at least, once my fatigue reaches a certain point I just can’t get up anymore, for DAYS, which I hate, so I just can’t do anything for very long without resting. And by “resting” I mean “lying down flat and not doing anything for a while, sleeping for a bit if possible.”
  • I shouldn’t use all my unexpected good days to check things off a list, although that’s tempting; good days should sometimes be spent just enjoying feeling well!

It is a bitter pill to swallow when you start accepting on a gut level that you really aren’t going to be able to do what you want to do (if you have the energy to want to do anything to begin with) without a lot of modification. At least I am now in the trial-and-error process of learning how to LIVE with POTS, instead of just exist with it.

Freaking out…carcinoid?

I got a call yesterday on a test I forgot I had, a 24-hour urine test for 5-HIAA. My doctor ordered it after she found out I turn bright red before I fall over. It came back high, but I’m waiting to TALK to the doctor about WTF that means and what to do now. The Internet reveals that this is a pretty sensitive and specific test for cancer so I’m really anxious. And of course it’s a weird and exotic rare cancer, my specialty.

Of course I called everyone I knew so they could commiserate with me, and I discovered that this turning red thing is a known thing to everyone but me: I obviously am never looking at myself when I start to pass out. My coworkers were all like oh yeah, your ears get red and then your cheekbones turn red and if you still don’t sit down you turn pale as a ghost. Well…good to know, I guess. I did ask if they had any OTHER helpful information for me. (No.)

I feel tortured waiting to hear from my doctor about this.