Personal Coaching Makes a Big Difference When Exercising With Sarcoidosis

Athena Merritt avatar

by Athena Merritt |

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Seeing actor Will Smith post that he was in the worst shape of his life made me smile. Because grinning in short shorts with his paunch on display, he shamelessly owned something I’ve often felt.  

Getting and staying fit is tough. Sarcoidosis and other chronic illnesses don’t make it any easier. Ditching exercise happens. Sometimes it’s because we are struggling with symptoms, or maybe the desire just isn’t there.

That’s why the way Smith paraded his fall from fitness made me feel better. Because, like him, we need to smile at ourselves; there is no shame. We pick up and start again. If you need a nudge, May is National Physical Fitness and Sports Month in the U.S.

Battling back from fitness lows

I didn’t pack on unwanted pounds during the pandemic like Smith. But I’ve had plenty of low points that would put me in the running for “lazy lockdowner” awards, if they existed. Three imaginary categories I might win are:

  • The Gluteus Maximus: Sitting until your butt cheeks hurt. The gold medal, which I found out the hard way, is a prescription for physical therapy to treat sciatica.  
  • One and Done: Carrying a seemingly impossible number of shopping bags inside all at once, just to avoid a second trip. Your shoulders and back will hate you, but your legs will applaud the effort.
  • The Push-off: Claiming this procrastination prize is easy when you are tired, hurting, or feeling lousy. Just keep telling yourself you’ll do things tomorrow, when you feel better. 

Smith parlayed his midnight muffin eating into a YouTube series about getting back into shape. I renewed my efforts in late February for the same reason he gave: “I wanna FEEL better.” 

The prescription we need

I won’t be watching Smith sculpt his abs back to jaw-dropping glory because it won’t inspire me. What I’d love to see instead are videos showing our rare disease community how to overcome challenges in our quests. 

Guidance is so often what we are missing when our physicians push us to become more active. Receiving personal coaching, especially when coupled with wearing an activity tracker, clearly benefits those with sarcoidosis.

It helps reduce our fatigue and increase our exercise capacity, according to the study “Benefit of Wearing an Activity Tracker in Sarcoidosis,” published last year in the Journal of Personalized Medicine. A study published in March found that a short, supervised exercise program in a hospital setting also improved the physical health of sarcoidosis patients, Sarcoidosis News‘ Vanda Pinto reported.

I achieved my post-diagnosis physical best after participating in a cardiac rehabilitation program. Before it, exercise made me feel worse. But having a doctor map out a specific plan, monitor my progress, and make adjustments as needed due to symptoms or injuries changed that. 

I’ve struggled ever since without that ongoing feedback, especially in the last year. Like so many others, I’ll probably stumble again going forward. But that’s OK. Because as long as we keep trying, we can succeed. And there’s no shame in that. 

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Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.

  • Cuts for charity: Skipped haircuts during the pandemic have resulted in a spike of donations to hair charities, according to The Washington Post. Donations climbed about 230% at Long Island-based Hair We Share over the last year. Monetary donations to charitable organizations making wigs for those in need are also up, thanks in part to stimulus checks. 

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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

Maureen Butler avatar

Maureen Butler

Thanks so much for the information. I really needed to hear from you. I'm seventy one years of age. I was diagnosed with sarcoidosis, at the age of twenty three. Sarcoidosis, has attacked. My lungs, liver and linning of my intestines. But im still here. I only took prednisone, when I was first diagnosed.
In 1973 never took it again. So far! So good. I'm very grateful. I also had both hips replaced in 2015,and both knees replaced in 2017. Our God Jehovah! Is a merciful and loving God! He has helped me through all my trials!
Like you. I can no longer exercise. Only because of the replacements! Hope all goes well for you. And everyone, who suffers with sarcoidosis. Keeping you all in prayer.

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Athena Merritt avatar

Athena Merritt

Your positive attitude is so uplifting, Maureen. Thank you for commenting. Wishing you all the best going forward!

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Jeanne A Benedict avatar

Jeanne A Benedict

Thank you for sharing this very uplifting and humorous article Athena. I am one of those people who has said all her life to get up and get walking. I have actually started this at least 10 times over the last 20 years. COVID allowed me to actually get to the level and now I can't stop walking every day.

I started the COVID isolation sitting daily at my computer. Helping sarc people on Inspire and playing computer games. Then I started feeling too fat and closed in. In April 2020 started to get some exercise, walking back and forth in my small apartment for 5 minutes a couple of times a day. Then I added another minute or 2 for each walk. By July I was walking outside in the evenings just before sunset plus my apartment walk in the mornings. My time has now increased to 20 or more minutes twice a day. I also added some 2# weights to life over my head. Starting with 5 times and now up to almost 100 reps of 4 different kinds of lifts.

I will be 79 in a month and I am feeling like 30 in spite of my sarcoidosis. If someone wants my coaching advice. start small, really small, and just make a small increase each day. Two minutes twice a day, and then 3 times etc.

I really pushed it in April and walked a total of 73 miles in Steps $ Sarc.

Jeanne

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Athena Merritt avatar

Athena Merritt

That’s incredible, Jeanne! You are amazing, and have inspired me. Thank you! Athena

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Tammie Jones avatar

Tammie Jones

Hello Athena and everyone here. I’m so glad I came across your article. I was recently diagnosed with Pulmonary Sarcoidosis in November 2020. I’ll be 50 on June 5th. I’m taking methotrexate once a week. I started out taking prednisone, but the spikes in my blood pressure was insane. I did some research and found a few Ayurvedic treatments. Bromelain… which comes from the pineapple and another one called Cats Claw. Sounds weird I know. Bromelain is known to be a great lung cleaner. I’m just sick and tired of being sick and tired. Any who I hope you all are well. And keep up the great humor.

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Tina avatar

Tina

I was diagnose 3 years ago. I am tire the hole time, nobode belief i am sick, becaues you dont look ill. Thank for all the artikels that we get about the illness i dont feel alone any more,

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