The Drawbacks of Staying Still with Scleroderma

Jessica Massengale avatar

by Jessica Massengale |

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What does the phrase “fighting for my life” mean? Often when someone is going through a struggle, one will hear them say, “I’m fighting for a chance to survive.” Does this mean all the sick people of the world are taking medication by day and karate classes by night? Probably not. We choose to use the word “fight” because our diseases truly can make us feel like we are being beaten physically and emotionally.

Certain ailments can make you feel like everything is a task. So, day in and day out, you’re swimming upstream against a rushing current of problems. You’re fighting against the aches and pains, as soon as you open your eyes. So, it makes sense when you give up the fight. Your brain is overwhelmed and your spirit is drained.

Patients often cocoon in their beds because of fatigue, pain, insomnia, medication side effects, depression, or a combination of all the above. The mind simply shuts down and you feel as if you can’t go on. But staying in bed is where a lot of damage takes place. You cannot sit and wait when it comes to scleroderma, because it is a disease that literally will freeze you in place. I know how hard it can be to even muster  enough effort to take a bath or shower. But the more you move, the easier it will become. Inactivity leads to weight gain, weakening of muscles, and immobility. This damage is difficult to reverse.

According to the University of Michigan, the lungs are involved in about 80 percent of all patients with scleroderma. Lung involvement in all its forms has emerged to be the leading cause of death and disability. But the National Institutes of Health encourages physical activity. But if you have a long-term lung condition, the thought of becoming quickly out of breath can be daunting, and you may not feel motivated to exercise.

It can be tempting to avoid exercise because you think it will make you breathless. But if you do less activity, you become less fit, and daily activities will become even harder. It is best to ask the guidance of a doctor or physiotherapist before you begin exercising to ensure that your exercise plans are in line with your capacity and are safe.

A breath of fresh air

In today’s society, it has become easy to sit at home for days and be full of distractions. The internet, Netflix, Hulu, Facebook, Uber Eats, all allow us to comfortably stay at home and not do much. But staying indoors also can increase your social anxiety. Stepping outside for fresh air can boost your immune system and increase your happiness and energy levels.

As I walk through the park, I feel rejuvenated and strong. I consider it a mental exercise when I leave my house because I have to overcome the number of stares I receive. I have to “fight” the feelings of anger and anxiety. I’m a form of art for the public to feast their eyes on, and that sucks for me sometimes, but I don’t have a choice. I was dealt this hand young and I know I can’t see the world from my bed, even though Google Maps and YouTube convince me otherwise. I want to physically experience these things.

Scleroderma has the ability to be used as an excuse for many to give up. I’m the textbook definition of stubborn when it comes to taking my medications. I see my family and friends allow me to do things I shouldn’t at times because of what I’m dealing with. I appreciate that, but people with an active, life–threatening disease need tough love. I’ve gotten into screaming matches with my cousin because she is worried that I’m not doing what I should to prevent further damage. When this happens, it slaps me out of my denial and back into reality, and I appreciate the raw honesty because I need to hear it. Even though we act sensitive to advice, it pushes us in the opposite direction of death.

I’ve seen friends of the disease pass away because they didn’t follow their doctor’s advice or change their old habits. I understand every situation is different and some people get hit hard and fast, which is devastating. But for those who are idly sitting by, I hope to light a fire of ambition in your heart, whether you’re a patient, friend, or caregiver reading this.

Don’t put scleroderma on the back burner, because the odds may not be in your favor.

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Note: Scleroderma 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 Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Kathryn avatar

Kathryn

Good advice, and well-written. Thank you for sharing!

Reply
Joan Reilly avatar

Joan Reilly

I read the articles here, although I do not have classic SSc.
I have a history of Ltd scleroderma, or Scleroderma features beginning digital ulcers, esophageal narrowing,telangiectasia, livedo reticularis and for 2 + years I could not squat, for fear my thighs would rip. At 10-12 years, some symptoms cleared to be replaced 2 years later with other cutaneous developments: Shiny, swelling, thickening of hands and nose and another similar rash darkening on my thighs.
I've been to more rheumatologists, than I have a right to be and one Scleroderma specialist. I read medical journals to find clues to the methodology of this look alike symptomology, when I have a moderate ANA, and antibodies for Sjogren's. I have been diagnosed with Sjogren's sicca, ssa and ssb. No Scleroderma antibodies. I'm perplexed, not illiterate or ignorant.
I know that Sjogren's and Scleroderma are essentially comorbid: I know that percentage determination is dependent on several key components of antibodies and symptoms. I do have Raynaud's phenomenon or syndrome. I forget the difference between the two. I know about all the essentials. I've been in the Blood Lab rotation for more than 25 years. Please, is this just a come and go scleroderma features roulette wheel, so small that nothing shows up in the test results? A thought, a word? Thank you.

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ConcernedForYou avatar

ConcernedForYou

Joan, perhaps you don't know about this? - http://sclerodermainfo.org/faq/differential-diagnosis/ Go to this site and you will see a 'weighting' for each of your symptoms. You need a total of 9 points to be diagnosed with scleroderma - and a scleroderma-specific antibody does NOT have to be one of them. Good luck!

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John Saul avatar

John Saul

Good article! Sharks are made of cartilage and must keep moving to live and thrive.
Scleroderma turns us into sharks in that regard.
Walk, Jog, Yoga, Easy Weight Lifting, Socializing, and rest in moving water (meditation).

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Janice Hammerling avatar

Janice Hammerling

I love your list of distractions. That is so me. Netflix and M& M Peanuts are two of my favs. Not good for the illness but great when you throw your hands up in the air and say "I've had it!" ??

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Kate thomas avatar

Kate thomas

Just found out. Lung problems already. I'm scared! But to find out at 79 is not too bad.

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Patricia Samms avatar

Patricia Samms

My Sister has Scleraderma and I can see the physical changes in her. I'm becoming more and more concerned as she is a single Mom with a Daughter and Son. I'd love to find some sort of support so she can at least talk to someone. She tends to not like going to Doctors as the medication they give her has too many side effects. So she is doing the bare minimum.

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Joe avatar

Joe

My wife of 21yrs suffers from scleroderma. She was diagnosed at age 17. We meant in our early 20's married a few yrs later and have 1 boy bite 18yrs old.
Just wondering if anybody else with systemic scleroderma has suffered severe weight loss and no matter what or how much you eat, you can not gain any weight? My wife has been fighting this problem for 8 months,if there's anyone else out there dealing with this problem,please let us know what we can do! ? Thank you for reading , sincerely Joe, scleroderma fighter's!!

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