5 Answers to 5 Questions You Didn’t Ask

This last night of 2023 also happens to be my last evening off before returning to work. Three months of medical leave has been the best gift of the year. Because “going out” is no more than a fading memory from a distant land, I’m staying in tonight to answer five questions you haven’t asked yet (but maybe were going to) about Life with the Mystery Sick.

1. How ARE you?

Friends and family have been helping where they can with errands and getting the kiddo where he needs to be. I’ve napped every day, sometimes twice a day. I’ve turned down countless invitations. I’ve canceled plans made in energetic moments when I thought I could do the thing only to find I could most definitely not do the thing. I managed to attend church a couple of times but mostly watched online (and only if I was awake by 10 am for the livestream). I replaced my sofa with a daybed and spent hours there every day. 

My 50th birthday came and went. The holidays came and went. An occasional call or couch visit from a generous friend kept the days from blurring into one another. The loneliness crept in but this greatly diminished social life was all I could handle. I read a lot. I listened to podcasts. For the past two weeks my son has been visiting extended family out of state which means the calendar has been a giant blank space. It’s been luxurious, open, restful, calm.

Oh wait! You asked how I am, not what I’m doing. Sorry, that’s because it’s nicer to lead with the good stuff.

I hate to admit it out loud. But I’m still sick. And somehow, inexplicably, getting even sicker.

It appears that there is near-zero chance I’m going to be okay enough to hold down a full-time job. 

2. Really? Can’t you just work from home?

In case you’re curious what  a mild case of Long COVID-induced ME/CFS looks like, here’s a snapshot of the past 24 hours:

In bed last night, the tremors and electrical currents hammered at me until well past midnight but eventually I conked out. I woke at half past noon having clocked about 10 hours of sleep. Yay! TEN WHOLE HOURS! Some nights, sleep disturbances only allow me a fraction of that so this is a welcome development. 

Such an abundance of rest must mean feeling refreshed, ready to tackle the day (whatever little of it remains), right? I grabbed onto that floating seedpod of optimism and decided to believe sleep had restored me and that energy would flow.

I got up, dressed, checked the mail and my phone, and did a morning meditation. I whirred up avocado, berries, and oat milk in the blender and enjoyed it on the sofa. Soon it was time to walk the dog. As I took the leash off its hook and got the pooch suited up for a stroll, a sensation of utter heaviness descended on me. In the five steps  from couch to door, someone had cranked up the earth’s gravity. The dog in her harness stared at me with her big eyes, looking for a clue about what needed to happen so we could proceed.

“I’m not sure if I’ll make it,” I told her.  

But of course I would make it. I always make it. The question is really this: how sick, dizzy, and foggy will the “making it” make me? How severe will the crash be when it comes as it does, inevitably, every time I push through?

Doggo and I managed the neighborhood stroll. It was sunny out, mild and cool. I noticed exactly one fat squirrel in the greenway, nibbling on whatever yum it clutched in its little squirrel hands. That was all my attention could take in. My gaze stayed otherwise bleary and angled at the concrete spooling out in front of me.

The dog did her business. I did my best to keep from stumbling but it was tricky as my battery indicator (oh, if only) started flashing red as we finished the loop. The moment we returned home, the bed took me.

It was 3:00 pm when the crash came. I’d been up for a total of 2 ½ hours. All I had done was take a few deep breaths, suck down a smoothie, and walk the dog half a mile. Yet my brain was mush, the room was tilting. My bloodstream had turned to concrete. I lay still for the rest of the day. Eventually, sometime after dark, I rose again and plopped into the recliner with some chamomile tea to write to you (hello friend!)

Every day is some version of this. Every single day.

3. That doesn’t make any sense. Isn’t there some kind of treatment?

You’re right. Sense has long since left the building.

Seventeen months into this misery and I’m not seeing any improvement. Even after a three-month leave from work. Even with an empty schedule. Even on 10 hours of sleep. The fatigue, cognitive decline, and exercise intolerance are as bad if not worse today than they were six months ago when I was still going into the office on a regular basis. 

Accepting how little say I have in the course of this illness ties me up in knots. This seems to be the experience of many people at the early stages of ME/CFS (and yes, it is likely I’m still in the early stages). I certainly could not have imagined, before I got sick, facing a health crisis over which I had almost no control. I always thought that it would be possible to good-choice my way over any health obstacle. Following a treatment plan and establishing “healthy habits” will give me the power to live well even in the face of illness or disability, right? Tools will surely be available for me to adapt, improve, and thrive.

Oh, yesterday-me. Bless your heart.

Of course I believed in an internal locus of control (and in the medical system to at least provide a road map). There is just no way illness could really be so merciless, so equal-opportunity, so callous. Or that living with a chronic illness is this harrowing and this utterly complicated.

Anyone who hasn’t experienced this kind of debilitation in their own life of that of a close loved one can only get it in theory, not really, you know, “get it.” Even the most compassionate among us may find ourselves wondering what So-and-So did or didn’t do to bring this on. What So-and-So is or isn’t doing to fix it, the things we would certainly do if in their shoes. (Which we are not.)

(Until we are.) 

Bombarded with messages about individual responsibility, we believe, without quite admitting it even to ourselves, that people bring this level of shit on themselves. And so they can get out of it themselves. It’s like believing we can metal-straw our way out of climate collapse. 

How convenient, this erasure of the role of public health and the damaging toll capitalism takes on our bodies and our lived environment. The correlations between health choices and poor health outcomes are so often twisted on their path from research study to media report that the population-level context disappears entirely. Popular understanding has sold us on the pretense that our own diet and lifestyle habits are the main determinants of heart disease, dementia, diabetes, mental health disorders, substance abuse, osteoporosis, cancer. Almost every illness you can name has its complexity chopped down to the One Neat Trick you (yes YOU) can do to prevent it. 

So here I am, having done all of the medically approved treatments available, and as sick as ever. Here we are, all of us who suffer from these mysterious invisible illnesses with criminally low levels of research funding. Healing will not come because a single sufferer does the exact right set of things. Healing only really comes when the mystery finally gets the relentless, well-funded, deeply researched, and committed attention of our collective will.

Okay, rant over!

(Haha, of course not. Scroll down for more rant.)

4. But have you tried…?

Yes, I know about that experimental intervention. And that other one too. Chances are, I’ve tried it. Yoga. Box breathing. Supplements (oh my gosh, the mountain of vitamins that has  passed through this digestive tract could block the sun). Gentle exercise. No exercise. Massage. Antidepressants. Probiotics. Caffeine. No caffeine. Cutting out chocolate, alcohol, gluten, and sugar. Medications. Journaling. Vagus nerve stimulation. 

Yes I’ve already seen the neurologist. And the rheumatologist. And the speech therapist and the physical therapist and the sleep therapist and the OB/GYN. They’ve run the MRIs and drawn enough blood to feed a small army of vampires. “All your tests are normal.” “Try drinking more water.” “I can’t refer you to a specialist in Long COVID or ME/CFS because there aren’t any.” “Maybe try enrolling in a research study?”*

*All actual quotes from my actual doctor.

Okay, yes, you are right. Acupuncture and mitochondrial testing aren’t on my list. The things (as yet?) untried fall outside of my insurance plan. Right now, on the eve of the eve of returning to work, I’m doing what many chronically ill people do: performing an agonizing cost/benefit analysis that weighs spending gobs of money on alternative practitioners of indeterminate efficacy (like integrative medicine) against saving for a possible future without income. 

It’s worth reiterating here: Many of us with ME/CFS and LC have tried to navigate according to that internal locus of control and it hasn’t worked. We have tried just about everything. We are still sick not because we haven’t tried hard enough. We are still sick because this illness is bigger than each of us individually. 

5. And how are you celebrating the New Year?

It looks like 2024 is going to be… something! Just exactly what is anyone’s guess. But at some point in the next few months, I may well have to figure out other options for survival. So I suppose I’ll celebrate by writing across the sky my wishes for a New Year’s miracle.

As for this last night of 2023, I’m curled up in my living room with the dog close at hand. I’m counting blessings while counting down to midnight. That I can be safe here and feel at ease is the biggest of all. The support of my colleagues in respecting my time off is another (the only texts I have gotten in the past three months have been pics of our beaming December graduates!) This leave has provided vital respite in a protected harbor. While I may be no “better” than I was in September, I am certainly lighter. And that’s not nothing.

The quiet comfort of this home is a gift, and for as long as it lasts, I am at peace. Tonight I am basking. Not in fear of what’s coming, but in gratitude for this singular, luxurious moment of rest and healing.

Wishing you good health and many moments of chill in the New Year!