As wonderful as it was to reach my first remission, there was one serious drawback. As long as I’d been actively, frequently, painfully sick, it had been easy to take my health seriously. But once I was in remission, amnesia set in.
For the year-and-a-half that I’d been sick, I thought I would never again take my health for granted. And yet, now that I was well, the months slipped by and the novelty of good health wore off. My memories of being sick receded into the distance, and with them went the importance of self-care.
This amnesia was to have devastating consequences.
My ulcerative colitis had felt like imprisonment for its first year-and-a-half. Life had continued for the people around me, but I was stuck at home, often curled up in pain or tethered to the toilet, forced to put career and life plans largely on hold. Now I finally felt well again and my symptoms had mostly disappeared. I felt overcome with elation and drive.
I’d lost much of the last year. I wanted to make up for lost time. And so I did, scrambling to finish a new draft of my book, plunging into a new full-time job, and working hard even in my spare time to finish projects in my husband’s and my new home.
It was as though I’d been in a cave for a year-and-a-half and was finally emerging. Looking around, my life was drastically different from the way it had been the last time I’d been well. We now lived in Portland, not Madison. Ron had a full-time teaching job, and I was working a new conservation job. And we were homeowners.
I reveled in the new feeling of security and settledness. We had entered a new life stage, with health, jobs, and a house. We could move forward at last.
We’d put off trying for a baby while I was sick, but now we began talking about it again. We decided to give ourselves a breather—we’d been ready a year-and-a-half ago, but my year of illness had destabilized everything. We needed to get used to this new stability and rhythm and to save some money.
We’d settle in a bit more, we thought. I’d make sure my health was fully stable. Then we’d check in after one more year, and we’d probably try then.
At first, in remission, I stayed diligent about my health. I exercised most days, walking or even jogging around my neighborhood, thrilled at my body’s return to strength. I stuck to my healthy diet, though not religiously. My fare was mainly whole grains, legumes, and vegetables; I mostly avoided sugar, gluten, and dairy; I strictly avoided alcohol and caffeine. Sauerkraut and kefir were daily staples.
When a coworker made a cake for my birthday, I thanked her profusely but only ate a couple bites, explaining about my illness.
But I let myself live a little, too. Ron and I finally began to explore local restaurants. Once, I even let myself have a frozen yogurt sundae. Tears brimmed in my eyes as I took the first incredible bite—this was a food I’d thought I might never eat again.
My gut held fairly steady through all this. My stools weren’t always firm, but by and large, remission continued. That made me feel that I had conquered colitis. Each morning I dutifully took my small blue Apriso pill with breakfast, but other than that and my diet, there were few reminders of illness.
I must have healed my microbiome, I thought joyfully. That meant I could expand my diet sometimes, as long as I stuck mainly to healthy foods.
I emailed a friend from Madison: It feels amazing to be able to eat whatever I want. Losing my health was really scary. I really think I’ll never take it for granted again.
A small flare arose in October of 2015, a few months after remission began and a couple months after I’d started my job. Now I discovered the fatigue, stress, and social anxiety of working full time while navigating frequent trips to the bathroom. I’d never been sick while working full time before.
It was rough, but the flare quickly died down after a couple weeks of Proctofoam. The return of remission boosted my confidence. I figured I was still on the right track.
The following spring was intense. At work, each day was a whirlwind. My job was at a local watershed council, a small nonprofit working to restore an urban stream. I had eleven projects to manage, including several stream restoration projects, data compilation for three volunteer-based annual stream surveys, and a revamp of our organization’s website. I oversaw various interns, wrote articles for the quarterly newsletter, reported to grantors, and applied for permits.
Our little organization was always stretched to its limits, so mine was a fast-paced, demanding job. It required constant multitasking and detail management. Often, at the end of the workday, I couldn’t remember much of the day except a blur of activity and a general feeling of constant stress.
And home was no different.
Rather than giving myself a reprieve from my job’s whirlwind, on evenings and weekends I was racing to get us more fully settled into our house.
The home we’d bought nearly two years ago had turned out to need many minor repairs. I’d slowly done many of the fixes myself while I nursed my illness and Ron worked—with the help of YouTube, I’d replaced all our door locks, hung outdoor security lights, rewired outlets, patched drywall, hung shelves, and done a myriad of other little tasks. And in the summer of 2015, just after my remission had set in, Ron and I had remodeled our kitchen and dining room by hand.
Now, in the spring of 2016, the house was almost how we wanted it to be. But a few projects remained, and I hoped to finish them before getting pregnant.
Ron was often too tired on weekends to do much, but I had my old, exuberant energy back. When I’d been healthy, I’d always had more energy than him. It felt great to have that back now, and I tackled the projects with gusto.
I painted walls, decluttered the garage, pruned bushes, and added decor I’d found at thrift stores. Room by room, our house was beginning to really look like the home I wanted it to be. That was exciting. It eased something in me, an anxiousness that came from not having a nest that felt like home.
Eager to be all-the-way done with my list of projects, on Saturdays and Sundays I often worked ten or twelve hours on the house. Most Sunday nights, I fell into bed exhausted.
In the back of my mind, I knew this pace of life was unhealthy. My self-care was slipping. Too harried to cook much, I was starting to let myself eat processed food again. Even, sometimes, boxed mac n’ cheese. It contained refined wheat and unhealthy chemicals and dairy, but I rationalized that I could relax my diet now and then. After all, my gut had more or less healed.
Summer was approaching, and that was my light at the end of the tunnel. By summer, I thought I’d be done with our home. I told myself I could put off being healthier till then.
As the months passed, I began eating mac n’ cheese more often. By May 2016, I was back to my old habits from before I got sick: I ate pasta most days. I still also ate sauerkraut and kefir daily, which I saw as my backstop—they would keep my microbiome humming along so I didn’t get sick, I told myself.
I’d stopped exercising very much, either. But I rationalized this, too, deciding that my house projects were physically active and sort of counted.
We had better health care this year than we’d had since living in Madison. Ron had gotten a new teaching job with better benefits, and for the first time in years, therapy was well covered. I had returned to counseling for chronic anxiety, something I’d been working on off and on in Madison.
My new counselor’s name was Louise. Along with my anxiety, she and I talked about my workaholism. It was obvious, by now, that that’s what this was. I could not seem to slow down and relax.
I had always been like this, I confessed. There’d been many periods in my life that resembled this one, in which my days were saturated with ambitious projects and no rest. I just kept going, going, going. The only long period when that hadn’t been true was during my year-and-a-half of illness.
As the spring wore on, week after week I returned sheepishly to Louise and said I’d let it happen again: another week had slipped by without slowing down or eating well, except my sauerkraut and kefir. I was aiming to slow down in summer, I insisted. Just not yet.
But summer didn’t come soon enough. By late May I was flaring again. This wasn’t unexpected, and at first, I wasn’t alarmed. My self-imposed deadline was almost here anyway, I thought. I’d gotten most projects done at home. I figured I could endure a little couple-week flare while I waited for Proctofoam to kick in.
I contritely returned to a more conservative, whole-grain diet, stopped eating mac n’ cheese and the dark chocolate I’d also begun eating daily at work, upped my intake of sauerkraut and kefir, and asked Ron to do all the cooking in the evenings so I could rest. I ordered my Proctofoam, confident it would soon kick in.
But when I started to take it, nothing improved.
In fact, my symptoms continued to worsen. The pain with my bowel movements was becoming more intense, often making me gasp. The BMs came every hour, and every couple hours at night, and I was quickly becoming exhausted from lack of sleep. I developed a fever.
By the end of the second week of flaring, I knew this was different from ever before. This flare was worse, and the meds weren’t working at all.
Now I was alarmed.
I was also dismayed at my own behavior. There was a good chance I’d brought this flare on myself.
I saw now that I’d been in denial: even after my long struggle with illness, I had never completely let go of my image of myself as a Healthy Person. Once my health had returned, I had somehow slowly convinced myself that I didn’t really have a chronic disease, or at least, not one that needed to be taken seriously anymore. I’d forgotten about possibilities that had worried me before: the chance that my colitis might progress, or that I might develop a second serious autoimmune disease.
Now I remembered such concerns, but I feared it was too late.
For the first time, I could also see the clear connection between my chronic anxiety and my ulcerative colitis. Anxiety led me to overwork, which made me prone to illness, because when I overworked myself I ate poorly and didn’t exercise.
Therapy with Louise was helping me understand that my anxiety related to my childhood and my father’s alcoholism, which was insightful. But so far, understanding my compulsion hadn’t been enough to change my behavior.
Over the past year, I’d been thinking of my sessions with Louise as a bit of an extra—a back-burner affair, not a high priority. Now I saw that they were vitally important. The only time I’d ever treated myself well, physically, was when sick. That was self-destructive. I needed to make some kind of deep-down change in myself, so that in the future, even in health, I would behave differently.
But in the meantime, my focus had to be just getting out of this flare.
Remission had given me one full year of relative health. That year had been an incredible blessing, but I’d responded in the wrong way. Now I was in a terrible flare.
This flare was to be the beginning of a crisis that would threaten my life before summer was over.
Only months later, after the worst of my crisis had passed, would I come to understand that good health isn’t a signal to slack off on self-care. It’s a signal, instead, that your self-care has been working. It’s a sign that it needs to continue.
