I haven’t written many blog posts since the shutdown last spring. In fact, I’ve been doing less of many things since the shutdown last spring. Until very recently, I thought I knew the whys and the wherefores.
Let me take us back to, oh, say late April of 2020. The school year was nearing a close, and I was working from home. I was still running regularly with my husband, training to complete the local half-marathon that had been cancelled, along with everything else in America. I was teaching remotely and editing music videos for my drama and chorus classes, so the sudden blurred vision seemed reasonable--screentime is notorious for hurting vision. The masking debate was still raging, and running outdoors was a little stressful—any time we approached another human, slight panic took over: run in the street? Pull on my mask? Will they be mad if I do either or neither or both? I assumed that my battling emotions were making the sport less fun, and that’s why running was feeling so hard lately. Once we completed our 13.1 very slow miles (which felt rather harder than any 13 miles I had run before), I decided I needed to take a break from running, and I turned to asana (yoga) practice for my physical activity.
In June, my teaching job came to an end (no contract was made for the following year) and I managed to enjoy approximately 10 days of unemployment before I was (thankfully!) hired at a local grocery store, offering a truly decent hourly wage and an incredible health care package (starting in November). The job is physically demanding, and I was understandably sore and tired after the first week. And after the second week. And after the third week. And so on. I made it through the first 4 months working 5 days a week, averaging well over the minimum requirement for health care, and I began scheduling appointments for doctor and dental visits.
I kept expecting to build more endurance at work, but my energy continued to wane. Depression started to creep and my brain seemed to cloud a little more each day. I’d put pantry food in the fridge and fridge food in the pantry. I'd have to check my schedule three times before I could remember what time I was starting work each day. I could barely focus on a television show to follow the plot. But there were explanations for all of this: I’m aging and under some stress. I’m working in a physically demanding profession while figuring out my career future for next year. My husband had a kidney stone. Elections were contentious. The humans of planet earth are all experiencing a mass trauma of unparalleled proportions. The burgeoning arthritis in hands and knees seemed like a normal part of being in my 40s. Perimenopause explained the hot flashes, night sweats, and dizziness. The headaches and fatigue and general slowing of me all seemed attributable to logical causes, and Occam’s razor always points to the simplest explanation(s).
Except when the simplest explanation isn’t so obvious.
I had cut back my hours to the bare minimum at work. I had cut back my recreational fitness to gentle asana practice twice a week. I had stopped cleaning the apartment. I bought enough masks so that I only had to do laundry once every three weeks. I was buying more prepared food to avoid the strain of cooking. I was sleeping fitfully, taking naps when possible. I was dropping things and stumbling through my days, telling that classic bold-faced falsehood chronically ill people have learned so well to recite when asked “how are you today?”. And herein lies the problem with having acquired the skill of pretending to be okay when you are not okay: you start to believe it yourself. You believe that if you just say "I'm okay" enough times, it will become true. And it becomes true enough to fool an onlooker or even yourself for a while, but not enough to fool a medical exam.
When my annual checkup came around, and my blood pressure, pulse, and hemoglobin were all suspiciously low, my doctor suggested I switch from nightly Benadryl to daily Allegra and take more iron until the blood tests were complete. She asked me how I’d been feeling and I told her: “honestly, I’m just exhausted all the time.” While we both agreed that, compared to how I’d been feeling the last time we saw one another (in December of 2019, I was busy working full-time through a 2-month bout of pneumonia shortly after having an emotional meltdown triggered by career-related stress) I was doing far better. Still, “exhausted all the time” is sub-optimal. I took her advice to switch allergy meds and take more iron, and I went back to my shadow existence of working as little as I could while still keeping my health insurance, and resting as much as possible so that I could go back to work again.
Several days later, I get a call from the doctor’s office to discuss my blood work: “Are you having symptoms?” asks the physician on the line (not my doctor, but one of her colleagues). “I’m always tired” I say. I tell her I’ve changed allergy meds and am taking more iron. It does seem to help. “Well, you tested positive for Lyme” she tells me.
LYME. LYME DISEASE. I grew up literally 20 minutes away from LITERAL LYME, CONNECTICUT and spent every summer of my youth rolling around in the deep woods. Everyone I know from that region has someone in their family who’s gotten Lyme at least once. (Honestly, I was surprised it took me this long to catch it.) We all know the look of the tick and the classic bulls-eye rash that sends New Englanders to the doctor for immediate treatment.
Did I see any of these telltale signs? Of course not. This, of all summers, the one where I spent the LEAST amount of time outdoors, would be the one where a sneaky rash-less tick would bite me. And of course the symptoms should be so subtle and slow to develop that I would explain away each one of them with some other rationale.
One time I was bitten by a spider and *that* gave me a bullseye rash. No superpowers, though. It’s never superpowers.
So I got the antibiotics and I started the treatment. But, apparently with Lyme, (and also with Syphilis), when the bacteria die off, they make a really big fuss on the way out. For about the first 4 days, I felt like I was living through a nasty hangover: all lights were too bright. All noises were too loud. Headache and nausea were a baseline sensation, and my legs were baby-deer wobbly. Random pains moved around my body: one minute, my teeth hurt. The next minute, my ears hurt. Then one vertebrae would light on fire, and just as quickly, extinguish itself. The skin on my hips felt bruised when my hand brushed past. I managed to drag my sorry self to work each day, though, because as long as I’m not contagious or barfing, I’m not about to lose any hours that might cost me access to my health care. If I hadn’t had a lapse in employer-based insurance, would I maybe have visited the doctor sooner? I guess we’ll never know. But my Hot Take on American health care is a Whole Nother Story altogether.
Then one day, for a few hours, the fog lifted. Most of my pain seemed to just…disappear (I suspect the arthritis might be part of the New Dianna for…well, maybe ever, but that’s okay). My head didn’t hurt. My stomach didn’t spin. The lights were just the right amount of bright. And I had ENERGY. I moved about the grocery store with all the spryness of a 41-year-old! I found myself nearly in tears with happiness—is this what *healthy* people feel like? I had been sick (truly more so than I even realized) for so long I didn’t even know what wellness felt like anymore.
Yes, I am aware that many people experience symptoms long after treatment with Lyme, and I might become one of those people. Yes, I know I went an awfully long time prior to diagnosis, and that doesn’t bode well. Yes, I know what some of the long-term repercussions might be with this illness. But I’m choosing optimism, because I already feel SO. MUCH. BETTER. I got to experience wellness again, and I know I can access that feeling again and still. If this is as good as it gets, I will be grateful, because until I had this diagnosis, I thought my new normal was so much worse. And at least I have the grim satisfaction of knowing I'll probably outlive the tick that bit me.
Hold on to your health care (and fight for better access to health care for everybody! Again, though, that's another blog post altogether). Go for checkups. Don’t ignore symptoms, because you never know when the difference between an existence half-lived and a thriving life might be as simple as a blood test and 28 little* pills.
*Okay, they're actually kind of big, but that doesn't sound as pithy.
Be well, friends.
image sources:
https://www.cdc.gov/media/releases/2016/p0208-lyme-disease.html
https://globallymealliance.org/about-lyme/diagnosis/stages/
https://www.producemarketguide.com/produce/limes
