Planning Ahead: The Vagaries of Chronic Illness

“I am well enough to do some of the things that make life worthwhile from day to day, but few of the things that make life worthwhile from year to year.”

— Matt Lazelle-Fairman

The sound of the leaves falling from the walnut tree, shades of chartreuse: green and yellow, is the same sound the rain makes as it drips off the trees and onto the ground. The autumn colours and weather are finally here – we are no longer in such dire straits with watering the garden, though we’ve still had less rain than normal this month.

As I write this, we should be pulling into Jasper, Alberta, for a week-long stay to do some of our favourite hikes along the Icefields Parkway. We booked our trip this summer, including ferries, accommodations, and food planning. We were pulling out our outdoor gear: hiking boots, hiking poles, dog harness, looking forward to a leisurely week in the mountains. I let my editors know I would be away. We were all set.

Then my bipolar disorder intruded on our well-laid plans. In late August I switched into a high phase. By September I was pinging off the ceiling with new writing ideas, and having trouble sleeping at night with all the great plans I was making in my head. A high is thrilling when you’re used to being depressed most of the time. It’s hard to tell yourself that you have to tamp it down, that it will be worse in the end if you let it go too long, that you will fall into a deep depression as you come down again.

I waited it out a few weeks then decided it was time to increase my medication, which turned me into a zombie. I wasn’t flying high anymore, instead I felt like I was moving through molasses. My thoughts were just as thick, like syrup had messed up the gears in my mind. I saw my psychiatrist near the end of September, and he suggested I start tapering the extra meds and just increase my bedtime dose by 30%.

I spent the end of September and early October working hard to function like a regular human being. I slept a lot but still tried to force my mind and body to do the things I wanted them to do. I pushed myself out of bed every morning, trying to be functional even though my body wasn’t cooperating. I took the dog for a walk and felt like a robot, moving awkwardly and slowly, lightheaded and half asleep.

We had a week before our arrival date in Jasper to cancel our accommodation without penalty. On that day, as I struggled once again to get out of bed, I admitted that there was no way I could function in the Rockies. It would be a waste of a trip to drive that far and then spend all my time sleeping. How could I hike if I could barely walk the dog 3 km up and down the road?

I pulled the plug on our trip and we rebooked for December. I love being in the mountains, which make me feel small in a good way, and hiking into our favourite spots reminds me of all the trips we’ve made there before. But I don’t regret cancelling, as I knew there was no choice. Instead, I feel let down again by my mental illness.

I posted the Matt Lazelle-Fairman quote at the start because I know exactly what he means. Many people are able to plan a year or more in advance, for career development or saving up for a trip or for planning a long-term physical fitness routine. But those of us with chronic illness don’t have that luxury.

Planning in advance is difficult because there’s no way to know if I’ll be able to function or not. Even though we’ve rebooked our Rockies trip for December, we’re prepared to cancel again if I just can’t do it.

This uncertainty also makes it difficult to set life goals—I have to be prepared to bail on them. But maybe that’s the key. Instead of not planning in advance because things could go wrong, I should plan anyway and have contingencies in place in case I can’t do it. This only works for personal things, though, where I’m responsible only to myself. Like wanting to walk a marathon, or learning to run again.

Things that involve other people are more difficult. A few weeks ago, I was invited to the Arctic in April of 2024 to do fieldwork with one of my former PhD colleagues and write about the experience. All I had to do was get myself to Resolute Bay and the rest was covered. But as excited as I was about the opportunity, I realized I couldn’t take my illness into the field, as I had no idea how I’d feel at that time. I’d be completely off my regular schedule, but would still have to function normally for several weeks in an extreme environment. Other people depended on me, and I couldn’t take the risk of letting them down. I reluctantly declined, even though going back to the Arctic would have been amazing.

These are the types of opportunities that I can’t capitalize on because who knows how I’ll feel next year. I have to manage my illness carefully by following my daily routine. That can make it hard to see beyond a week or a few months. As Annie Dillard writes: “What we do with this hour, and that one, is what we are doing. A schedule defends from chaos and whim. It is a net for catching days.”

I’m using my week not in the Rockies to try and recover, and am crossing my fingers that things will be more manageable in December. I’m taking it slowly, sometimes hour by hour, catching days in my net and trying not to think too hard about the years to come.