Being chronically ill is exhausting. Stating the obvious, right? Not only is it a constant weight on the mind, but it’s also – most definitely – a weight on the body. Just when you think you’ve found the perfect combination of coping mechanisms and foods, something goes awry, and your entire system is in flux again. I guess it’s kind of like having a newborn, right? That’s the only thing I can compare it to right now, being a new mom to a 2-month-old. You finally find a groove for the current state of your life, then something changes, and you start all over.
It. Is. Exhausting. And when you live with ulcerative colitis (UC), like I do, a flare-up literally means your body is being drained of its energy by way of bloody diarrhea and/or vomiting. The life of a chronically ill person often feels like a constant guessing game of trying to predict the unpredictable future. I know for me, just the “flare fear” in itself – constantly waiting for the next streak of sickness to come – is already too much most days. Toss in symptom management, “colitis math” as I call it (constantly calculating outings around a bathroom), food testing, lack of sleep, seeking support, scheduling appointments, ordering new medication, going to procedures – the list truly goes on – and one day can feel like a whole marathon.
Fortunately, living with UC for 20 years has also afforded me the opportunity to discover productive ways to manage the unavoidable fatigue … and make it feel somewhat avoidable. Here are my best tips for walking through life with UC without always feeling like a zombie:
- Prioritize sleep. What does this mean for you? Does it mean skipping that party for an earlier bedtime? Napping when the baby naps? Passing on that coffee date to sleep in? Spending an extra weekend in bed? Build more sleep into your routine, no matter what.
- Eat healthy foods. I get it; when you’re feeling crappy, it’s easier (and more soothing in the moment) to eat crappy foods. However, our insides and energy levels do depend on green things and nutrient-packed meals. I’ll never be the one to poo-poo the occasional splurge (love me a pizza!), but it’s key to find vitamin-filled options that work for you. My tip? Green smoothies!
- Drink the water. I carry a large water bottle with me everywhere I go, and I like to make it a game. Before that coffee, you have to finish one bottle. Before that afternoon snack, drink another. Finish whatever is left from the night before, before you get up. Drink a full one before bed. “Habit stack” the water bottle on top of another habit to ensure you’re actually gulping enough water.
- Exercise, but start slow. Running a 5K right off the bat will leave you feeling more fatigued than before. My suggestion (and personal approach)? Start small – with 15 minutes. Allow your body to adjust to that new habit, then increase it by 5 minutes. Integrating activity into your life can not only support a good immune system, but it can also help you feel more awake and lively over time. At least it does for me! However, always consult your doctor before trying anything new.
- Be realistic. There have been so many days where I felt like I had to “rally” and make it out no matter what. Sometimes it was for a close family member, other times I simply felt flaky if I skipped. Thankfully, I’ve learned to be more realistic over the years. If I have to pass, I pass. I missed my uncle’s ordination to be a deacon because of UC, and it was arguably the biggest day of his life. I felt bad for missing it, sure, but I didn’t feel bad for doing what was best for me.
- Don’t do it alone. Whether it’s a partner, parent, friend, colleague, fellow IBDer, or some combination of all of them, a supportive person is key. Let someone else know how you’re feeling. If you’re especially fatigued, delegate some tasks to them. Ask for help. Be honest. Oftentimes people living with UC live in the dark, feeling too embarrassed to share their experience with others. And I totally understand that feeling. But I also know that once I started sharing my journey with others, I slowly felt more confident in my own skin and less ashamed of doing what I needed for myself.
- Build in buffer days and hours. Rather than scheduling activities on back-to-back days, or even on back-to-back hours, toss in “buffers” to make sure you have time to recharge. These have been key for me. One rule in our house is we never have visitors stay with us two weekends in a row. This is especially hard with a newborn, since everyone wants to meet him! However, I need space to recharge and feel comfortable to be myself in my house.
- Find your go-to shows. Seriously! When a day feels really, really difficult, watching some brainless TV can help pass the time and truly soothe the soul.
- Don’t fight the emotions. Honestly, the fatigue brings and has brought a lot of tears for me, and fighting those tears only fatigues me more. Try this one day: Let yourself cry it out … hard. It will feel draining in the moment, but once you’re done, I promise you’ll feel at least a little bit lighter.
- Accept. At the end of the day, there’s no real way to totally eliminate fatigue (and if you find a way, let me know!). So part of living with it is accepting it. When you feel yourself extra tired, remind yourself that it’s simply your body alerting you to slow down. That’s all it is. It’s a signal to remind you to take it easy and prioritize rest.
Of course, these are all easier said than done. It took me 20 years of practice to integrate and discover them all, and I still don’t consider myself a master! If you lead with gentleness and patience with yourself, it makes a big difference in the long run. Now go take a nap, because you deserve it!