Why I Said Goodbye to Routines: An IBD Perspective

The phone rings at 8:00 a.m. It’s my doctor’s office. They want to let me know that my appointment at 2:00 p.m. that day will need to be rescheduled. I’m tired. I’m frustrated while I try to explain that I don’t want to see a different doctor that same day and would rather talk to my doctor, but anything before 11:00 a.m. is hard for me to get to. She sets my appointment for 10:15 a.m. the next day and hangs up the phone. It’s only 8:30 a.m. but I’m already going to have to prepare and plan my day around waking up early tomorrow and navigating bus schedules.

Whenever someone writes about routines, I always see the same stuff: “I have Crohn’s so I do yoga in the morning every chance I get!” or “I eat two containers of yogurt and a banana for breakfast to help with stomach cramps and regularity.”

OK, I’m really happy that works for you (if it actually works for you), but let’s get real for a second – how many other people will that work for? If you have a life that’s very linear and very rarely deviates, I’m sure that works great. But I don’t know one chronically ill person whose life is like that.

My life with Crohn’s consists of a lot of routines that don’t flow together – morning rituals and things that live in my brain as fragments that I do occasionally, but not daily enough to say “daily.” My rituals are more “often” than “daily.” The problem with a “daily routine” is that it relies on the idea that I will wake up with the same issues every morning.

I do not.

Like today: I’m awake now and can’t get back to sleep. I’ve been sitting on this toilet for about 35 minutes.  My joints hurt and I have a few options for pain, but it’s too early to be nonfunctioning, so I have to go the more holistic route and take a bath with epsom salts. That’s going to cut into my make-up/hair routine for the millionth time. So I won’t do it. I haven’t worn make-up in almost three months anyway (honestly, I don’t even think my foundation matches the tan of my skin anymore). I can’t eat, but I know I’m going to have a stomachache if I don’t because of the medicines I have to take before noon, or I’ll be up all night long.

I have to plan for the pain I wake up with, and I can’t predict that. So I scrapped the idea of a daily routine in favor of another system that may be very familiar with other chronic illness warriors: The Algorithm.

My day changes quickly, and my symptoms vary on a constant basis, so I use an algorithm to help me manage my day. If something happens or comes up, I start asking myself a series of questions in order to find out how to manage what’s happening.

Example: I wake up at 5:00 a.m. and I’m in pain – what do I do? I ask myself some questions like: Do I need to go anywhere today? If not, take a pain reliever that will put me back to sleep. If I do, and I need to be cognitively functional, I need to find something else that will work long enough for me to get ready. If I get stuck on the toilet for more than 20-35 minutes, I start evaluating the importance of leaving the house today and planning for accidents. If I lay through three alarms, I start trimming the fat on my routine and go with “barely presentable” as my look of the day.

Look, we deal with a lot of shame, but this is something that we need to move past. Some of us are going to try and quell the chaos of our diagnosis by trying things like schedules, and when we can’t stick to them, we beat ourselves up. Then we’ll read about another schedule idea, dry, rinse, repeat.

Enough.

I try really hard not to make high-stake plans any more than a week in advance, because I can’t tell you how I’m going to feel tomorrow, let alone what’s going to happen in three months.  I also use the “how long can I delay treatment on this until it gets bad?” algorithm when confronted with a bad day that lands on the day of an appointment or something important, like a wedding.

The reality is that most of us with chronic illness can’t be on a routine, and that’s OK. It’s OK. It has to be OK. While the world demands that some of us follow some kind of clock when it comes to work and school, our own personal lives are a blow-by-blow. No Judy, I can’t tell you if I can come to your BBQ for sure. I want to, but I don’t know where I’m going to be in two weeks. I can’t promise you Carla that I can watch the kids on the 17th because I don’t know if I’ll be able to get out of bed that day.

And that needs to be OK.

Our health is our first job. We owe it to ourselves and each other to stop constantly pining over the newest schedule or get-organized-quick schemes everyone is trying to sell. It’s OK to say “I don’t know.” It’s time to give ourselves permission to be more open to outcome and reject that rat race.

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Thinkstock photo via Darunechka.