Post Soundtrack: Changes by Yes
I'm finding it difficult to have any sort of standard by which to measure my good days and bad days. It sounds like it should be a no-brainer, I know. However, Lupus is odd in that it nearly forces you into living in the moment. Sure, there's a lot of positive in that, but it makes gauging progress as a whole fairly impossible. For example, today is going pretty well thus far. I have very close to no pain, no stiffness, no swollen feet, no flushed face. All is well, and it feels like all has been well and will be well, which is patently untrue.
Perhaps this is what leads some to go off their meds sometimes? It isn't something I've been able to relate to, as I am desperate to achieve and retain a pain-free existence. The idea of stopping my meds because I feel so much better seems counter-intuitive. However, when looked at with the perspective of being "in the now," it makes a little more sense.
I have my suspicions that my symptoms are worsening, but I have no proof, nothing to point my finger at and say, "Look, there is why I feel I am worse!" So, to remedy this, I intend to keep a sort of journal. It won't be anything fancy or complicated. It'll just be a day planner with simple notations. Each day will be assigned an up arrow or a down arrow. If I can do everything I want to do that day without pain, then it gets an up arrow. Anything else gets a down arrow. I will note if the day was busy, as that is quite relevant to the success or failure of my meds. I will also note the kind of problem I had that day in the simplest term possible.
The real issue here is how varied my days can be. In a single day I can go from energetic, painless, and happy.... then a few hours later end up feeling feverish, weak, exhausted, and pain-wracked. Up and down, down and up. Some days are steadily in between. Some are steadily bad or steadily good. I never know how the next day will be, or even the next hour. It's highly frustrating sometimes, and makes planning for anything problematic. But it's something I can't change about Lupus.
There is a lot I'm having to accept about having this disease, and very little of it is anything I care to be content with. That being said, I don't have much choice. I might as well make the best I can of these changes.