Clinical Trial #15: Day 7

Nobody tells you that having a chronic illness is like taking on a part-time job. The first provider who typed “chronic” into my chart didn’t warn me I’d become a one-woman drug trial for years.

Hey, I get it. Everyone fixated on me getting better. The possibility that might not happen was never mentioned, and it never occurred to me. I’d had migraines for 23 years. They hadn’t limited me for more than a few hours, maybe a couple days. So I simply believed “chronic” was a setback. The months of increasing disability were a temporary problem we’d find a workaround for.

As a writer and language teacher, I should have known better.

What Chronic Means

English inherited the word “chronic”—like all our chron- words in English (chronology, chronicle)—from Greek. Merriam-Webster presents the original form as chronikós meaning “of time, temporal, in order by time.” And this word in turn comes from chrónos, which simply means “time.” The dictionary includes a further note that medical writers in ancient Greece were already using their word for “chronic” to characterize certain medical conditions that occurred and re-occurred over and over again. So, at least in the West, as long as medicine has been a field of study, we have had conditions that resisted treatment even by the most vigilant, knowledgeable physicians.

Photo of Black woman patient gazing out window by Klaus Nielsen from Pexels

At 31, I experienced my first attack of vertigo. Later that summer, after two assaults, the migraines became more aggressive and frequent. And the journey began.

As my diagnosis has shifted, from BPPV and episodic migraines to chronic migraines, to chronic vestibular migraines, so too have the treatments. Now that I’ve built a new healthcare team, the treatments are shifting again. In the nine years since my first chronic symptoms, providers have prescribed or recommended, and subsequently supervised, 15 treatments so far:

  • Sumatriptan
  • Epley maneuver (for BPPV)
  • A short course of corticosteroids (after recognizing episodic migraine had transitioned into chronic migraine)
  • Physical therapy (to restore some of the mobility impaired by vertigo)
  • Magnesium supplements
  • Fish oil supplements
  • Verapamil (for chronic vestibular migraines)
  • Tart cherry juice
  • Anti-inflammatory diet
  • Acupuncture
  • Massage therapy
  • Ajovy (anti-CGRP)
  • CoQ10 and riboflavin supplements
  • Vegetarian, low-fat diet
  • Nortriptyline and rizatriptan

When doing trials on yourself with your medical team, data becomes queen. So paralleling this journey has been a separate expedition, hacking through the jungle with a machete to find the most useful, reliable apps for logging treatments and symptoms.

As a result, my phone and laptop are stuffed with bar graphs of monthly attacks and symptoms as well as medications taken, pie charts revealing what time of day migraines most often occur, bar graphs of exercise, line graphs tracking my weight, charts of menstrual cycles, tables of calories consumed and sorted by nutrient. Tables running over 60 lines tick off symptoms, potential triggers, and acute treatments that I’ve marked as giving the most relief. And then, I have to wade through all that data looking for correlations, clues, anything that might explain the gradual worsening of my condition—all on the slender hope that such a clue might help turn back the clock, or at least slow it down. For someone who dropped out of college statistics class, it’s a lot.

Bar graph produced from my data via Migraine Buddy

Most treatments I have tried for at least two to three months, as directed by researchers and my providers. Nothing has had a lasting effect, except for verapamil in lessening the disability caused by vertigo. We have tried treatments at different doses and frequencies.

It can be hard to know what to look for because “chronic” does not mean constant. A couple months ago, I had three weeks without a migraine. Then, I had migraines almost every day for two months. Research has found that for those with chronic migraines, most treatments offer a 50% reduction at best. But what does that mean? Is that a 50% reduction of the every-single-day migraine season? Taking the average over a year or even six months is unhelpful because no month actually has the “average” number of migraine hours.

This uncertainty baked into one-person trials without a control group, without controlling for other factors, means that you don’t stop a helpful treatment and replace it. The verapamil controls my vertigo well enough that I can work half-time. So I keep that. Possibly for life. Which is fine. I remember life before the verapamil, and that is not a place I want ever to revisit.

Despite what ableists will tell you, side effects and multiple prescriptions are not what made me sick. My sickness made me sick, and I’m grateful for the treatments we have, as imperfect as they are. For an incurable disease, I am happy for any improvement in functionality.

Photo of a handful of pills by Anna Shvets from Pexels

The Next Leg of My Treatment Journey

Four months ago, I tried 90 days of CoQ10 and riboflavin and got zero effect (that my new doctor and I could see in the data). So I quit those supplements; after all, each new pill is another expense. And being sick is expensive.

Now, we’re adding nortriptyline and rizatriptan to the cocktail. I’m on day 7 of this trial. It got off to a rough start, so my new neurologist and I dropped down the dosage. Now? I wake up dizzy and with a slight headache. No effect on the migraines yet, but it’s too soon to tell. I’ll let you know in 83 more days.

Swimming through an ocean of numbers on a daily basis has taught me some things.

The main lesson I’ve learned is what “chronic” actually means. Chronic illness is a reminder that the body is encased in time. We are born into it, and we die in it. And there is no turning back the clock. There is a before chronic illness, and there is an after. Now, for the rest of my life, I live in the after. And that’s okay. Only ableism terrifies us into the belief that we have no worth, that we make no contributions, if we are sick.

My life is still beautiful. Of course not the hours I spend huddled in a chair, my eyes shut against the light, trying not to puke and too weak to move to the bed. Of course not. But the other times, the times cuddled on the couch with my husband who has miraculously survived a pulmonary embolism. The times our cat Apollo and I chase each other from room to room. The times when I help a shy student burst into a grin and tell me what they really think.

There is a kind of mercy in having a chronic illness where each day is logged as a record of symptoms and medications, where a chart glows a confirmation that yes, you are getting older and sicker, that time does not heal all wounds, that one day there’s no more data to enter because the journey has ended. In most cases of chronic illness, there is no outcome, at least not the outcome that pop culture encourages us to believe in of magical, sudden healing. There is no return to the “before.” Time doesn’t flow that way. One day we die, and that is the end.

For me, this vantage of chronic illness gives life a different hue. The body looks different. Time looks different. It’s not necessarily a bad thing to remember that everything is finite.

Photo of a hand holding a candle by George Becker from Pexels

Making Peace with Death and Illness Means Making Peace with Time

The moments when I forget that time surrounds my body are rare. This used to make me angry. When “chronic” first crash-landed in my life, I was outraged. How rude. The body is here for me to use, not to be confined by.

What I have come to learn is that the body is not what confines me. Back when I could still do a grand jeté en tournant, my body could resist gravity itself. And sometimes, in my dreams at night, it still does.

It is not the body that is confining.

It is time.

We can invite time, defiantly, to do its worst. And it always, always will.

But time is not just the assurance of cells dying, of synapses misfiring, of our precious myelin sheaths crumbling away from our nerve cells. It does all this. But it also makes children grow and flowers bloom and sentences cascade across the page.

“Chronic” means happening again and again, and again.

Illness and death are the chronic conditions of humanity. But so is birth. So is spring. So is literature being written, films unreeling across screens, and children laughing at the adults who try to make them laugh. In spite of everything—or perhaps because of it—we just want to hear children laugh. I’m grateful I’m still here for that.

So if this is the deal that time brokers with us, I’m not sorry for it. I’ll take chronic illness so long as, too, we can have chronic art and joy and possibility.

***

Photo of a white woman at dusk holding an umbrella decorated with fairy lights by Matheus Bertelli from Pexels

Featured Photo by Karolina Grabowska from Pexels

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