Don’t let living with sarcoidosis keep you off balance

“Life is like riding a bicycle. To keep your balance, you must keep moving.” — Albert Einstein

I was diagnosed with pulmonary sarcoidosis a year after my mother passed away. That was over 20 years ago. Afterward, I didn’t give a lot of critical thought to living with this illness. I didn’t know much about the condition or how it might affect my ongoing health. I kept doing what I used to do and not overthinking my illness.

That year, I also lost my job because of restructuring. It was sudden and unexpected, like my mother’s passing. Since I had more time on my hands, I swam almost every day and rode my bike along the trails close to my home. I kept moving. I was afraid that if I stopped moving, my life would come to a standstill.

As the years have progressed, my health has changed. I have difficulty acknowledging my limitations, but I’m learning to live with them. I have to take my time doing things, but I manage to get them done. Sometimes my family, which is now my caregiving team, gets frustrated with me, to which I say, “How do you think I feel?”

My daily routine now consists of gym visits to keep me strong enough to carry my 6-foot frame. I also take part in a water rehab program twice a week. I told my pulmonologist I’d benefit from working out in the water, so he enrolled me in a program for it.

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Every day I think that I can do more. Although sarcoidosis has left me partly disabled physically, it hasn’t disabled me emotionally. Still, I know from firsthand experience that the emotional component of sarcoidosis can paralyze those who have it. The more I overthink my condition, the less I try to do better.

I have to keep moving forward.

Like Einstein’s advice about riding a bike, I have to move forward to remain balanced. When I think back on how I did that before I got sick, I believe I was unconsciously preparing myself to handle the obstacles I face now. I was keeping myself strong and giving my lungs a good workout. If I hadn’t been continuing to move forward all along, my condition could be worse. One thing I’ve learned throughout this journey is that the human body can be forgiving.

My pulmonologist loves my ethics of personal rehab, which keep me balanced, just as similar efforts did for my old self.

After my first spontaneous pneumothorax, an occupational therapist visited me a few times at home. One of the exercises I did was to stand on one foot while holding on to a chair. She told me that most folks with pulmonary issues can only manage a few seconds before losing their balance. When I need to challenge myself, I’ll do this exercise at the gym. If I can stand and keep my balance for more than a few seconds, that means I’ve made some progress.

No matter how small the reward is, I’ll take it. It’s the simple things in life you appreciate the most.

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.