How does one measure progress during the treatment of Lyme Disease and associated tick-borne illnesses?
Good question, but not easy to answer.
What I mean is, it’s not an easy thing to do because progress can be so subtle, to the point where you don’t even realize you’ve made progress until you really sit down and think about how you felt 6 months ago compared to how you feel today. At least, that’s my experience.
For me, it’s a lot easier to quantify my progress when it comes to the obviously physical manifestations of the disease(s), such as pain, dizziness, nausea, ability to tolerate and integrate external sensory stimuli, ability to drive, ability to go out into the world by myself without fear of falling down or becoming too confused/overwhelmed/SICK to negotiate my way solo.
I can definitively say that, since beginning treatment over a year ago, my pain has lessened, as has the nausea, dizziness, and even my cognitive symptoms. I still can’t drive, but I have less trouble expressing myself orally, less trouble with verbal comprehension, less trouble simply thinking. That’s not to say these problems have vanished, but they have lessened in severity and duration.
I find what is most difficult for me to gauge is the progress with symptoms that manifest psychiatrically. I can ask myself, “How do I feel today?” The answer may be: I FEEL HORRIBLE; my anxiety is through the roof, I have no motivation, and I wouldn’t mind going to sleep and never waking up.
I think “horrible” is a pretty apt descriptor for such a state of mind/feeling. But if I step back and consider the anxiety I experience now as compared to the anxiety I experienced, say, 6 or so months ago, there’s no comparison. Six or 8 months ago, it was all-consuming. I dealt with severe anxiety practically every moment of every day. A lot of the nausea I felt was undoubtedly due, in part, to the intense anxiety I experienced. So, while I may say that today I feel “horrible,” I mean it, but today’s “horrible” was last year’s status quo, which definitely signifies progress.
As for feeling as though I wouldn’t mind going to sleep and never waking up, well, I don’t truly mean it -- though there was a time when I did. When this thought pops up now, I recognize it for what it is: exhaustion, frustration, and usually a result of die-off. And so I acknowledge it, but don’t let it push me toward acting out with self-destructive behavior.
Sometimes I feel as though I’ve lost some of the progress I’d thought I made, which is upsetting, but all part of the process of healing. I have trouble remembering that the path to health is not a straight line, but an upward spiral; each revolution uncovers a new layer of health. Though the improvements may be subtle, they do exist. The key in maintaining a good perspective is in remembering that they do indeed exist.
