Improving my quality of life with sarcoidosis means no days off

[Joachim]

I was recently admitted to the hospital twice in one week. Apparently, I had started to develop subcutaneous emphysema, which occurs when air gets trapped under the skin. This can cause crepitus, a crackling sound produced by pushing on the air-filled tissue.

In my case, it’s a result of my damaged lungs from pulmonary sarcoidosis and spontaneous pneumothoraces. The subcutaneous emphysema caused my throat, jaw, and cheeks to swell with air, and the pressure in my throat changed my voice. When I pressed on the inflamed area, it sounded like Rice Krispies.

I was hospitalized in 2018 for the same problem, and doctors intubated me because they thought my airway might be compromised. Thankfully, this time wasn’t as critical. The air didn’t spread any further, and I was only admitted for observation.

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During my hospitalization, I had time to think about what my next steps would be in terms of rehabilitation. My gym routine and diet would continue to be my foundation, but I knew I had to do better in other areas of my life. So where do I begin?

After being discharged, I went to the gym and talked with another member I see often. He works out regularly and walks twice a day when the weather permits. He told me that he admires me for coming to the gym with my oxygen tank and working out as much as I can.

During our conversation, we agreed on one simple thought: If you’re not careful, your mindset can dictate how you spend the rest of your life. It became frighteningly clear to me how easy it is to do nothing.

While I was in the hospital, all I did was watch television. It was convenient because there was no charge for its use. It was easy to lie in bed and do nothing but watch TV all day.

As the man and I kept talking, he made the point that if criminals never take a day off, why should we? It made perfect sense. Each day I did nothing but watch television was a day off from caring for my health.

When you’re living with chronic illness, stress, or mental health issues, it can be easy to simply accept the condition. That mindset can paralyze us and prevent us from taking action. If you think your illness dictates your life, then it will. Sometimes you have to challenge your thinking to become a better version of yourself.

The man at the gym told me his main reason for working out was to get out of the house, to do something. I agreed.

My family and friends often tease me about being unable to sit still. Even with my health conditions, I just can’t sit around and let the four walls close in on me. I fell into this trap at the hospital, but typically, I’d rather be outside doing something — otherwise, I remain focused on my health issues and not on improving my quality of life.

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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.

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