Don’t Allow the Anxiety From Sarcoidosis to Limit Your Life

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by Charlton Harris |

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Like many of us dealing with sarcoidosis, I’ve somewhat mastered contentment doing nothing. Over the past six months, we’ve been forced to live our lives at a distance, but how many of us were doing that before everything changed?

My gym recently reopened, and I couldn’t wait to get back to working out. I’m extra careful about returning to such a public venue. The past two weeks have been great! Restarting my somewhat “normal” routine was the pick-me-up I needed at the right time.

Last weekend, my son and I decided at the last minute to head to my brother-in-law’s house, about 40 miles outside of Philadelphia. Going to his house is always a fun time filled with laughter, good music, and different beers, not to mention me cooking or grilling something tasty. I could tell my son needed a short getaway, too, so we checked schedules and hit the road in hopes of relaxing and recharging.

We left on Saturday morning, and with weekend traffic, arrived a little after 1 p.m. It was good to see each other since we hadn’t since March. We typically text each other daily to check in, but it doesn’t compare to seeing someone face-to-face.

My son initially thought it would be a good idea for me to make this short trip. When you live with medical issues, you tend to make your living environment your comfort zone or safe place. I hadn’t realized that within six short months, I had started regressing. I had made my home my comfort space again. I was even feeling the effects of post-traumatic stress disorder. Sheltering safely in place between four walls and a television is no way to live — at least, not for me. But, it happens. 

After a while, being away from my old, familiar surroundings started having an adverse effect on me. I could tell immediately I was getting uncomfortable. I hadn’t been around anyone longer than five to 10 minutes for a few months, and the enormity of the new space had me feeling out of sorts.

Due to some of the mental issues associated with sarcoidosis, smaller, familiar, and confined spaces seem more comfortable and safe. When I was hospitalized, I grew comfortable in my small, safe hospital room. However, when I was released and had to face the real world and the enormity of “space,” anxiety and feelings of “fight-or-flight” kicked in. Unfortunately, it’s an ongoing personal dilemma. 

Time to change the narrative

During our visit, we went to one of my favorite stores in Philly. When we arrived, I started feeling short of breath and panicked. I shouldn’t have. I had plenty of oxygen and was with my family, so I didn’t understand what was happening. I took a step back to get myself together and told them I would wait for them to finish their shopping.

The moment was eerily strange and alarming at the same time. It might have been the enormity of the new “space” that triggered my anxiety. That seems plausible. These past few months, we have all been forced to live differently. We have to find a way to bring some normalcy back to our lives while being cautious and responsible. 

It all starts with initiative

We have to take the first step. We can’t let outside situations influence our stability and self-care. The changing seasons trigger my anxiety. I’ve been hospitalized during each season, so sometimes my anxiety goes from zero to 60 pretty quickly. My takeaway is to stay busy and remember how far I’ve come. It’s not always easy, but it’s a start.

When we left my brother-in-law’s house, I let my son drive home. Sometimes, when he drives, I get nervous because he seems to go faster than I would like and wait to apply the brakes when stopping. Heading back from Philly, we got turned around and ended up in Delaware, but we found the route we needed to take.

Ironically, during the entire trip, I remained calm. My palms weren’t sweaty and I didn’t feel anxious, even with my concerns. He did extremely well and we made it home safely. I realized he is a good driver — and he should be, because I taught him. I guess there is power in patience.

(Courtesy of Charlton Harris)

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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, and are intended to spark discussion about issues pertaining to sarcoidosis.

Comments

Laurie avatar

Laurie

Thanks for sharing your stories Charlton. I find myself identifying most often with your thoughts and feelings. All my best for you and your family.

Laurie (sarcoidosis “warrior” since prior to 2001)

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Charlton Harris avatar

Charlton Harris

Thanks reading Laurie! Only we know how much of a challenge we live with. Please continue to read and comment- your sentiments keep me inspired. Continued Blessings to you and your family!
-C-

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Beverley Carlson avatar

Beverley Carlson

I really don't know much about sarcoidosis except I was diagnosed with it in my lungs in 2006. I have never taken anything for it and just recently the nodules have enlarged. I just was diagnosed with a PE of the lung in August and now take blood thinner. I also have COPD with everything else. I still have trouble breathing at times of exertion. Is this caused by my sarcoid or just everything. Could sarcoid have caused PE? As you can tell I am a little confused.

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Charlton Harris avatar

Charlton Harris

Hi Beverly! Thanks for reading. I was diagnosed with sarcoid about 17-18 years ago, and for the most part, I've remained healthy with no adverse effects until 2017.I had the lung biopsies and a sleep study before I was even told what it was I had. I'm not sure if sarcoid would cause a PE, I'd ask my pulmonologist or primary care physician to be certain. I actually had a cousin and a niece that experienced a PE. It's important to keep moving- PHYSICALLY! Something as easy as walking can make a huge difference and a help. My sarcoid has caused me to develop pulmonary hypertension, and we're working on that. Continued Blessings to you and of I Cam be a source of help or inspiration, please reach out!🙏🏽

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Gail Knight avatar

Gail Knight

Thank You!

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Charlton Harris avatar

Charlton Harris

🙏🏽💪🏾👍🏽💯

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Becky Eliz Anderson avatar

Becky Eliz Anderson

Keep on with the fight... it is not always easy, but worth it

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Charlton Harris avatar

Charlton Harris

Hey Becky, you are so right- thanks!👍🏽💪🏾

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