5 Tips for Managing Unpredictable Days with Sarcoidosis

The thing that attracted me to a career as a journalist — the unpredictability — is precisely what I despise most about living with a chronic illness. Over my nearly 17 years battling sarcoidosis, I’ve had good and bad days, and others that have fallen somewhere in between.

I never know what’s in store — or for how long. I go to bed every night mentally mapping out plans for the day ahead. But, as boxer Mike Tyson once eloquently put it, “Everyone has a plan until they get punched in the mouth.” Dealing with a chronic illness the best you can do is to learn to roll with the punches and get up to fight another day.

Following are five ways I try to manage the random and unpredictable nature of my day-to-day health.

1. Mapping out goals

I make lists of tasks I need to do such as scheduling doctor’s appointments and medical procedures and paying bills. I add items I want to complete, like finishing a book, cutting expenses, launching a website, and so on. I’ve always been a list-maker, and now writing down everything helps me to keep on track when I’m feeling lousy and have cognitive issues that impact my memory and my ability to focus. I include a combination of easy and difficult tasks on the list so that even on my worst days I can check off something and feel a sense of accomplishment. Ticking off items encourages me that I’m moving toward my goals, albeit slowly. 

2. Learn to say no — without guilt

My sarcoidosis does not give a damn about my plans. I’ve learned this lesson over the years. I’ve committed to attending social gatherings months in advance only to awaken on the day of the event to be told by my sarcoidosis, “Not today!” Merely getting out of bed and taking a shower seem to be Herculean tasks with sarcoidosis wrapping me in fatigue, pain, dizziness, or whatever else it decides to stir up. In the past, I would soldier through because I felt guilty canceling at the last minute. But that was always a big mistake. I would end up feeling terrible while out and even worse in the following days. So now, I apologize and politely bow out, explaining that I’m not feeling well. Likewise, if someone asks me to do something and I don’t feel up to it, I’ll be honest about how I feel and decline. 

3. Ask for help

This should be my top go-to move, but I’m not good at asking for help. It’s something I’m working on. I have no outward signs of my sarcoidosis, so unless I say something, people don’t know that I’m having a tough time managing my symptoms. The exception is my mom, who has an uncanny ability to look at me and immediately see that I’m not well. Don’t suffer in silence. I found that friends and family are more than willing to help. All I have to do is ask.

4. Have a Plan B

I try to have a backup plan in case I need it. For instance, when I have an important appointment scheduled, I make sure someone is available to take me if I wake up unable to drive. Or, I check train schedules or arise early enough if I need to call a ride service. 

5. Sleep

No sleep or a rough night’s sleep is almost always a precursor to bad days, which is why I’ve made sleep a top priority this year. Pain and insomnia often interfere with my goal of seven to eight hours each night. So, I’ve been trying different techniques, such as going to bed and getting up at the same time every day, including weekends, and not using any electronics two hours before bed. Cellphone use and television are included in the ban. I have also set my digital devices to switch to night displays at dusk. I turn down the thermostat to 62 degrees at bedtime so that my bedroom is cool and more conducive to sleep. And I try to avoid mentally stimulating tasks in the evening, such as writing, figuring out bills, or pondering life’s issues.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.