With Scleroderma, Exercise Comes at a Cost

With Scleroderma, Exercise Comes at a Cost

My cardiologist has given me the OK to go back to the gym. I’ve been waiting for his clearance for a long time. Working out at the gym was how I stayed healthy and in shape before being diagnosed with scleroderma.

Since becoming ill, I have spent what seems like years in my recliner, medicated with prednisone and opiates, and feeling hungry, sluggish, fatigued, and in pain. The weight has piled on. My body has become something that does not represent my inner self.

My medical team is all smiles and encouragement. They want to see me get fit and lose weight. But while listening to their motivational talk designed to get me going, I got a whiff of a “used car salesman.” Notions of “let’s get this old bomb off the lot” came to mind. I dismissed these as my own defenses.   

Returning to the gym was daunting. My bright pink leotard and leg warmers from the 1980s weren’t going to cut it. But squeezing myself into a modern pair of Lycra workout tights was an experience. By the time I got them on, I was out of breath and felt like I’d completed my first workout.

Over the past four months, I’ve made small steps as I’ve gotten into the swing of things. I can now manage 30 minutes on the recumbent bike, and another 30 minutes using machines to work out various muscle groups.

Everyone is encouraging, which is lovely, but here’s the thing: I have found that the cost for chronically ill patients to exercise is high. And I’m not referring to gym membership fees.

Health professionals enthusiastically tell me that working out three times a week is best. They remind me of the benefits and spur me on with positive affirmations. They know I can achieve it. I also know this to be true, but it has cost me in other areas of my life.

When I go to the gym, it costs me an entire day. That leaves me four weekdays to achieve everything else, including light housework, catching up with friends, writing my column, spending time with family, and having time for myself. Those are the basics of life, and are difficult enough to balance without scleroderma. 

After working out, I experience extreme fatigue and increased pain. No matter what adjustments I make in the gym, it is always the same. Once I am home, I can manage a shower before falling asleep for at least two hours. Often, I am still fatigued when I wake up and I need extra pain relief.

To reach my healthy weight, keep my ligaments and muscles oxygenated, and increase my circulation, I have to stop my life three days a week. The personal cost is high. And while my body is beginning to get a new shape inside and out (in a good way), so is my life (in not such a good way). 

Don’t get me wrong. Exercise is important for chronically ill patients. The benefits are proven and worth the effort.  

But do enthusiastic health professionals understand the high cost of exercise for chronically ill and immunocompromised patients? I don’t usually sign up for something unless I know the real cost before parting with my money.

Would I have started exercising had I known my cost? Definitely. But honest disclosure about the reality would have been best. At least I would have been able to prepare mentally. It’s only fair.

***

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.

I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.
×
I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

7 comments

  1. willistine pritchett says:

    Thanks for all your info, on scleroderma .And my new Voice has helped me so much.Just getting better from [SIBO],took several months to find it lost a lot of weight also.The Voice what’s up Doc was great. I wonder if I’ll be having this often? I also have Raynaud’s, which is really bad in cold weather.Please keep the good info coming.I’ve been living with scleroderma for over 16 years.Thanks willistine

  2. Summer Perry says:

    Sister I hear ya! I’m a former Division 1 college volleyball player and since I’ve been sick the best I can do with a work out is a vigorous walk around Balboa Island (I live in Newport Beach). It’s very disheartening. I watch so many people take for granted the opportunity to sweat and push themselves with a good run on the beach or squats at the gym all the time and find my self say dreaming of that intense feeling that used to file my days. Every now and again the competitor in me comes out and I “Just Do It” but seriously every time it sets me back a week. Extreme exhaustion, difficulty breathing, heart palpitations—I freak out and feel my skin getting tight (which I know doesn’t happen over night) and then the depression sets in. Like you I need to stick with baby steps. 30 minutes a few times a week and be full of gratitude my body let me do it. It’s nuts thinking I’m thankful for a walk in the part when i used to get forced to run times miles every morning during preseason, but life changes. You take the good with the bad and honestly get really excellent at making lemonade outta all the lemons you get tossed. 😉 I love your columns, thanks so much for being an excellent voice to so many of us that can relate. It’s nice to know we are not doing this alone.

  3. Thank you for this article! It confirms my own experience. Also to strengthen one area makes other health concerns worse. Or I start and then I have heart arrhythmias or something which stops me from even doing PT. Bless you for helping us feel understood. I also was a counselor so thank you for what you are doing!

  4. Elizabeth Levy says:

    Thank You So Much, Kim!
    Yes, health professionals do not seem to understand what we go through. Everyone wants us to do things we simply cannot do…it’s either have a conversation with someone in the morning, OR get out to do some food-shopping.
    Either take a shower and wash my hair OR go out.
    Once having gone out, I am in bed and unable to wash my dishes and/or vacuum and/or do laundry and/or change the sheets on my bed…etc. for days. I need days to recuperate from packing my cooler with blue ice, driving to a market, walking through the store, loading my cart, unloading my cart, packing refrigerated items in my cooler, taking the cart back, driving home, unloading everything (going back and forth up and down stairs), moving my car, then putting everything away and then lying down.

    Everything is a process and there is always a reaction to every action, and most people don’t seem to be able to comprehend this. Maybe they don’t care or don’t want to know, but whatever it is, it simply makes our lives more complicated than they already are.

  5. Margie says:

    Kim and Elizabeth.
    Thank you for validating my pain and experience. Symptoms began about three plus years ago, then diagnosed just over two years ago. The experience has been humbling and awful. Thus far I have been essentially alone in the process. I am 62, by choice and by chance not married and no children.
    I ache to get in contact with others, so I appreciate your validation. I recently moved to southwestern Arizona and look forward to being seen by Rheumatologists who specialize in Scleroderma. Hopefully I will be able to find a group of others to connect with.
    Meanwhile, thank you. I too struggle daily to manage and keep up with daily living and survival through the pain and exhaustion. Thank you.

  6. Christel Goetsch says:

    Wow. I also am doing my best to continue the regular exercise we need for so many different reasons. So, the dilemma is: should I expend my precious energy for exercise or making dinner, cleaning, shopping, seeing friends, etc? There sure isn’t enough energy in the bank for all of the above. Sure, I feel invigorated and proud of myself after a workout, but am not good for much else after it is done!

    It’s good to hear from others who ‘get it’!!

  7. Nicola blackmore says:

    Thanks for sharing your stories I still am trying to find a balance being diagnosed 3 years ago having 3 children 15, 14 and 5 struggling day to day is a task and missing my former self 🙁

Leave a Comment

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