Fits & Starts of an Invisible Disease

I'm a "list" person. Figure it out. Write it down. Do it. Cross it off. Move on to the the next list, the next plan. I used to have my days planned out in writing in 15-minute intervals. Well, that's not the way it happens with recovery from Lyme. Not only is each day full of new challenges, each hour can be full of new challenges. Some days and hours are full of hurdles I thought I already surmounted! All this forces someone like me to contrive a new plan. But I'm learning: Soon it becomes evident that that plan won't work, either. So I make a new one. And then another new one.

But what I need to learn is this: Although I'm in control of decisions around how my Lyme will be treated and how I will handle my disease, I'm not in control of how my body is going to react to those decisions. I'm not in control of that in general—not for twenty-four hours, not for one second. So I change my mind, make new plans, write new lists, and recover from Lyme in fits and starts.

With my heat intolerance, I can't predict whether five minutes—or thirty minutes—in the sun (and I don't mean tanning!—I mean just being outside for whatever reasons normal people go outside) will do me in. I can't predict the temperature at which five minutes (or thirty minutes) in the sun will do me in. Two days ago, it seemed that at 73 degrees, just five minutes in the sun (walking at a normal pace) did me in. For thirty-six hours. I had symptom flare-ups (extreme stabbing/burning/grabbing pains) and the Great Wall of Exhaustion. My digestive system went haywire. Today, I seem (she says with great caution) to be snapping out of it. Two months ago, it may have taken a week for me to snap out of it. Six months ago, it may have taken a month.

So, overall, I am still getting better. BUT the danger is in the temptation to make a prediction based on my experience of two days ago—solely because what happened two days ago may not happen again. Or, I may go back into the "funk" later on today. Or next week. And one day, maybe not at all (she says with great optimism). But in the meantime, I am one of hundreds of thousands of individuals with an invisible illness (and some have more than one invisible illness). I don't look sick (only those who know me very, very well can look at me and see visually-minute changes and guess that I might be feeling badly on a given day). If one does not look sick, how can they actually BE sick? So (with all good intentions) reason the masses.

And so, I continue on, strong in the faith that my chosen treatment plan is working and will continue to work. If it stops working, I switch to another plan. And now, it's time to load myself up with my medicine and my morning vitamins. A rather daunting regimen as you can see, but for the moment, it's the best plan I've got. Upper left, moving clockwise: morning vitamins; 2.4 million units of Bicillin L-A with equipment* needed to inject said med into my thigh muscles; Lidocaine ointment to numb said thigh muscle; Lidoderm patch to stick to thigh after injection. Middle: assorted Band-Aids as needed; alcohol swabs for sterilizing injection site. Invisible illness made real. On "break" days my nurse-neighbor comes over and injects my med into another (unmentionable) muscle to give my legs a break. She is teaching my hero-husband to give me my injections but he's not quite there yet. He's going to practice on an orange first.

After my taking my medicine and vitamins: I'll get to my daily list of tasks—the one I still can't help but write—even though how much of it gets done is completely dependent on what my body has to say.



*All injection equipment is immediately medically and irrevocably disposed of after use.