The Power of Predictability: How Routine Helps Manage My Rare Diseases

Through trial and error over the years, I've learned that my body functions best on a routine schedule, regardless of what I have planned for the day—whether it's a busy day outside my home or a relaxed day just spent on the couch.

While I do not require a strict routine, I see a tremendous difference in how my body responds to the day without a set schedule.

First and foremost, this entails waking up around a specific, set time and getting ready for the day—even if that only means hygienically so. I've come to realize that my body needs time to prepare itself for the day, and if it is not allowed adequate time, it revolts, especially if I stray from my routine for several consecutive days.

When plans change: A real-life example

Recently, my father and I had plans for an outing in the country with lunch afterward. While my normal waking time is between 6:30 and 7 a.m., our day wasn't starting until 10 a.m. I planned to sleep in until 8 a.m., which then became 9 a.m. because I felt too tired to get up at 8 a.m. By 9:15 a.m., I was calling my father to ask to reschedule our plans, as my stomach wasn't up for a country outing without any restrooms in sight.

We rescheduled for the next day, and I made sure to awaken by 7:30 a.m. and be fully up and getting ready for the day by 7:45 a.m. I was able to relax, unwind, and enjoy my coffee, allowing my body to adjust to being awake and beginning its activity for the day. We had an enjoyable outing without the need to change plans to accommodate my GI-related rare diseases.

Finding homeostasis through pacing

There are days when I keep my usual routine and, nevertheless, my gut is not having it, but, for the most part, I feel better physically and mentally with a routine. Otherwise, my fatigue and gut symptoms worsen, and my gut's routine becomes altered while my body is fighting to achieve homeostasis again. These changes often result in a pendulum swing of symptoms moving from moderate to extreme, requiring at least a week to slow the overly erratic reactions of my body to change.

Factoring in rest and recovery

Part of knowing what my body needs includes pacing. I work this into my normal waking routine by considering what I did the day before and what I have planned for the current and following days. A late start to the day by four to five hours is all right for my body periodically, but not on a daily basis. Some weeks I've been more active and truly benefit from a day of sleeping in, but I must keep these days to a minimum, as the more frequently and the later I start my day, the worse my symptoms will become.

Medication timing and sleep

I've even noticed the need for a set routine with my bedtime medications, particularly my preventive migraine medication. Although this medication doesn't cause me drowsiness, I've been able to sleep well since starting it. However, I must be mindful of when I take this medication—I have a forty-five-minute window to take it and get a good night's sleep. If I take it too early, I go to bed well but can't sleep for the second half of the night; and if I take it too late, then I don't sleep until the second half of the night.