All too often in my management of sarcoidosis, I find myself falling into survival mode and living moment to moment, just trying to stave off the worst.
Various factors will nudge me there. The arrival of a new symptom, worsening of an existing one, or a new obligation. Since April, I’ve been juggling all three, which pushed my life into a survival cycle. Weekends weren’t for fun; they were for resting, working when possible to stay ahead of my workload, and making changes to medications so I’d have time to iron out any side effects before Monday.
My self-imposed survival modes always begin with the best of intentions, but left unchecked they will push everything else out of my life until all that remains is me and my battle with sarcoidosis. With a weekend getaway this month, I broke the cycle.
For the first time in months, I was spontaneous. I didn’t bombard my mind with “what-ifs.” I booked a flight to Boston on a Monday and boarded four days later for a weekend without work or worries with my sister, Antonia.
We lived in the moment for nearly 48 hours, deciding plans as we went along. That is why after waking up to the breathtaking view of the city skyline and harbor from our beds at the Hyatt Regency Boston Harbor, we ditched plans to stay just one night and made it two.
In sunset dinners overlooking the harbor, water taxi rides to explore Quincy Market, leisurely harbor walks, sisterly chats, and round-the-clock breathtaking views from our room, I rediscovered the beauty of living — not just surviving.
Learning to let go
When carrying the weight of having a rare disease without a cure, it’s easy to get caught up in our day-to-day management of symptoms and efforts to prevent its progression. With the unpredictability of our days, we may feel compelled to use our better health days to tackle life’s responsibilities, such as work, cleaning or running errands. Which is why I resolved to be more social this year. Spending time with friends and family is good for health, but upon returning home I found myself falling right back into my rut of survival mode. My weekend away allowed me to finally break that habit by putting distance between me and my burdens at home.
Health issues and finances do not have to stand in the way of vacations. Microbreaks, one- or two-night getaways like mine, are gaining in popularity because they don’t require a lot of money or planning. They also mean you don’t have to return to an unwieldy amount of work and responsibilities that have accumulated in your absence.
The benefits of vacation don’t have to always come at a cost. UCLA Anderson researchers found that those who treated their weekend as a vacation instead of engaging in usual routines returned to work much happier on Mondays. So, go explore free sites in your area, engage in a guilty pleasure, television binge, wine-and-dine yourself with recipes you usually reserve for special occasions — whatever relaxes you.
Spontaneity helped me to manage my fatigue, pain and other symptoms during my trip because I did what I felt up to instead of being a slave to a stuffed schedule. As my sister wisely pointed out, “You don’t have to see and do everything in one trip. You can return.” Remember moderation is key. The aim is to return refreshed, not exhausted. I achieved this by not going overboard with activities and keeping my schedule light on my travel days, which always wear me out.
Whether you decide to travel or vacation at home, disconnect and live in the moment. Turn off your cellphone or mute messages and calls with “Do Not Disturb” mode. Don’t check emails or social media. Get outdoors, it will make you feel better. Trading Philadelphia’s humid weekend of 80-degree temperatures for East Boston’s comfortable 70s made that possible for me, even with my heat intolerance.
While departing Boston for my flight home, the Transportation Security Administration agent checking my identification asked what my “Warrior” T-shirt stood for. “Sarcoidosis,” I told her. After looking at my driver’s license and then back at me she replied, “You are a warrior.” For the first time in months, I felt like one.
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 sarcoidosis.