Exercise and Staying Active Are Crucial to Sarcoidosis Management

Exercise and Staying Active Are Crucial to Sarcoidosis Management

The last day of pulmonary rehab is upon me. Truth be told, it’s bittersweet.

This will be my third time in the rehab program. A few years ago, my pulmonary nurse practitioner suggested it might be a good program for me. She explained the particulars of the program, and I was sold.

I’ve always been an active person, and I enjoy swimming, walking, and biking, so pulmonary rehab would be a welcome challenge for me, especially given my pulmonary sarcoidosis

Pulmonary sarcoidosis has a way of slowly stealing one’s breath. As it does so, it also steals energy, a little at a time. Sometimes when I’m watching television in the middle of the day, I get really sleepy. That never happened before. Remember, I used to be full of energy. I’m not sure if sleepiness is directly related to pulmonary sarcoidosis, but I leave nothing to chance. 

With everything happening in my life because of sarcoidosis, pulmonary rehab seemed to be the light at the end of the tunnel. I have written about pulmonary rehab several times, and I can’t stress enough how important physical activity is for people with this chronic health issue. We gotta keep moving!

If you’re in a similar situation, remember that no matter what you’re going through, you have to keep moving. It’s not only important for your physical rehabilitation and mental health, but also for managing this illness. You’ll be surprised at what you’ll lose if you don’t move.

I admit I was bummed about the program ending. For the better part of a year, I’ve been confined to my home, with limited interaction with people and few activities that make me feel somewhat normal. Rehab was my “breakout move.” I thought that finally, I would have a taste of normalcy. Although I was being monitored and tested, it was a way out for me. And now it has ended. 

If we don’t keep moving, life will slowly slip away, and we’ll go from living to merely existing within the blink of an eye. I say that because if I’m not physically moving, I’m also not mentally moving. When that happens, I’ll forget to pay a bill or call the plumber, or I’ll put the car repairs on the back burner. It quickly becomes a new normal to “conveniently” forget what’s important to my family and me. 

Sarcoidosis doesn’t play fair, and neither should we. We must be careful about how quickly and comfortably we let things slide. This past year, we’ve been asked to adjust our lives with extraordinary measures, but we must continue to stay on top of the important things, both physically and mentally.

When I came of age, I couldn’t wait to do adult things. I had no issues with paying bills, taking care of my house and my family, and holding down a job. But I can also see how quickly someone can become stagnant when they aren’t doing the necessary things.

That’s a dangerous thing. You gotta keep moving forward, because getting trapped in one place is too easy, and the longer you stay in that place, the more likely you’ll fail to move forward. Then, you’ll feel comfortable failing to make progress, and unfortunately, you might think it’s a waste of time. When you reach that point, you’ve allowed the illness to win.

I was almost at that point when I was sitting in front of the television, eating, drinking, and watching reruns of shows I watched while hospitalized. I almost took my life from a place of living to solely existing. Posture and breathing work hand in hand, and being a couch potato doesn’t help.

Well, I got both of my COVID-19 vaccine shots, and I’m ready to get outdoors in the sun again. I promised my two therapists I would wait two weeks after I received the last shot before I went back to the gym. Now that I’m finished with rehab, I’ll be rolling my portable oxygen tank to the gym for a much-needed workout. I can’t wait.

For an hour and a half a day, I feel like my old self, and it feels great. Slow and steady wins the race, and I’m still running.

If you can relate to this, get back in the game and start living. We need you back in the game!

***

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.

7 comments

  1. Thanks for post I’ve got pulmonary Sarcoid and your so right keep moving.If I sit down for a break I’m asleep I don’t want to.It can be 8.30 am or anytime of the day
    I have dogs to care for and 5 acres
    I get energy from moving doing game shows ( chase)
    I ended up with Sjogren syndrome as well and now Lupus Pernio
    Plenty of protection to go out.I never had lockdown live in Woodstock in Australia luckily me
    Just keep moving I’m 68

  2. Anthony says:

    I’m another Aussie with pulmonary sarcoid – from Daintree, Queensland. Can definitely relate to your post in so many ways. Recently searched the net for ‘getting through bad days’ as I’m having more than I’d care to mention now. I’m sure lack of movement isn’t helping so thanks for your post … gotta go for a walk in the rainforest now. Good luck

  3. Nicole says:

    Thank you for your column, it came just at the right time for me. I am trying a back-to-work programme and it doesn’t go so well. But you are reminding me of the importance to keep trying if I want to make the most of the limited energy I have. So thanks and good luck!

    • Carla Forrest says:

      Thank you for your post. I have pulmonary sarcoid and I’m overweight, suffer with depression and really miss going out and socializing. In addition I need to move more, I feel so much better when I do. But it’s hard getting started. My diabetes doctor suggested chair yoga and I love it. It is so easy to get stuck not moving. I can easily sit all day watching tv, especially since the pandemic. I’ve gotten my vaccine and plan to ease back into socializing and back to the YMCA. So good to see I’m not alone.

  4. Debra says:

    You are absolutely right, Charlton. I would say that staying mobile on my feet, even if only for a short time each day, is critical to my overall health. Particularly breathing. But doing something every day also helps me to emotionally overcome obstacles. I pace myself and no matter how big or small the activity I choose to do, I look at it as a plus. As a positive. I keep going.

  5. John says:

    Hi there,
    I am another fellow Australian living in Melbourne with stage 4 pulmonary sarcoidosis. I am now 47 and was diagnosed at just 21. My journey has a few Twist and turns and I always draw inspiration from Charlton’s stories. Keep them coming. We all can relate to your experiences with your daily challenges and how you relate to others. You have a great way of telling a story.
    The key to this horrible condition is to have a “Can Do” attitude. The old saying is true: “If you don’t move it you lose it!” So keep moving and you will surprise your self what you can achieve. This condition requires us to take take the slow and steady game. No marathons required here.

  6. Lupe Avery Avila says:

    I have Scleroderma, which is a form of Sarcoidosis. As of last year & the end of 2019,I started having breathing problems. Anywho, Congestive Heart Failure, March, Heart operation, & loss of right leg, 4 in from the knee down
    So now, I have to practice breathing, every day, do exercises with my left leg and working with a great Protetic guy, Phy. Therapist, Occupational Therapist, Pulmonologist and dietitian. And of course, my great son, who is my Homemaker aid. So everyone, know that this too shall pas, and if we go on, it’s because we r starting a new adventure, Buena suerte, to all.

Leave a Comment

Your email address will not be published. Required fields are marked *