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What It Means to Care for Myself


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living with sarcoidosis | Banner for "No Tears for Sarcoidosis" by Charlton Harris

Sometimes when I awake in the morning, I’m afraid of what the day may bring. Then, when I retire for the evening, I’ll take my tablet with me to bed to read or listen to jazz. But just when I’m ready to call it a night, a feeling of anxiousness will wash over me as I think about my day or what to expect from tomorrow. After a while, I’ll talk myself into feeling calmer and eventually drift off for the night.

I think I have these feelings because I realize that each day isn’t promised.

The first spontaneous pneumothorax I had awoke me from my sleep one night. I couldn’t breathe. The more deep breaths I tried to take, the more out of breath I felt. A family member called an ambulance.

After I was hospitalized and had a few X-rays, the doctors told me that my right lung had collapsed. At first, I didn’t know what could’ve caused it, but after thinking about it, I figured it was pulmonary sarcoidosis.

Then, nine months later, my left lung collapsed. I immediately knew what was happening because I will never forget that feeling. Here we go again, I thought.

The days turned into weeks, then months, and it’s now been a few years since my pneumothoraces. Since then, I’ve gone through several hospital stays, three rounds of pulmonary rehab, and what felt like a lifetime of testing. I’ve so far accomplished the goal of keeping me here.

Sometimes I start feeling a bit cavalier about my experiences, especially if I’m feeling like my old self. That’s when I’ll tell myself to slow down. My inner voice of caution and reason helps to keeps me out of trouble.

That same inner voice also encourages me to take care of myself. I’ll ask myself: Do I want to be my own caregiver or caretaker? There is a slight difference between the two: A caregiver is someone who provides others with care and support, while a caretaker is in charge of caring for a person, place, or thing. By all accounts, I wear both hats.

Although I need help from time to time, I like to consider myself my primary caregiver because my inner voice offers me support as I attend to most of my needs. I also consider myself my primary caretaker because my biggest priority is taking care of myself. I encourage myself while caring for my body, which helps me to feel independent. And isn’t that what we all want?

Battling sarcoidosis can leave us feeling frustrated, weak, and defeated. When I start to feel this way, I pause and think about everything I’ve been through, how much I’ve gained, and how much further I have to go. I also see how much of my old self still exists, and that’s encouraging.

One thing I know is that I won’t get any better by sitting around doing nothing. Sometimes I have to make myself do things that I know will help me. It’s easy to sit in front of the television, like I did when I was hospitalized, but I have no excuse for that now. The pandemic makes it especially easy (though sometimes necessary) to stay indoors and out of sight, but going outdoors when I can to take a short walk doesn’t cost me anything, and it helps me a great deal.

When I’m at my most defeated and vulnerable, I think about one of my favorite Bible verses: “Greater is He who is in you than He who is in the world” (1 John 4:4).

We all have the ability to be the best versions of ourselves, so it’s important that we try.

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.

The post What It Means to Care for Myself appeared first on Sarcoidosis News.

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