Exercising with Scleroderma My Way

Exercising with Scleroderma My Way

Scleroderma and the Ordinary Girl

The medical police, aka my cardiologist team, have advised me to do no more than very gentle walks. I am not permitted to do anything more intense because we are waiting for cardiology test results. No weight training, no cycling, no strenuous kickboxing sessions.

That is of great relief to me, as I wasn’t going to attempt any of the aforementioned types of exercise anyway, since doing so would necessitate squeezing myself into my Lycra pants. 

The thing is, I used to be a gym bunny. Clearly, this was in the past, but my claim to fame is that I entered a body-shaping contest and gained a fairly respectable third place. (Disclosure: This was about 20 years ago.)

The point is that I actually loved exercising, but those days are gone. Having scleroderma has somehow affected my heart (the jury is still out on exactly how), which means any sort of physical exertion renders me breathless and terribly lightheaded. It isn’t very pleasant and certainly has not inspired me to do any type of exercise at all.

Very slow, sedate, and short walks are all I can manage now, and those are few and far between. Not only do I carry around an increased body weight due to lack of conditioning, but I also carry the burden of guilt. I know I should be doing more physical activity and I desperately want to. I’m not afraid of a full-on workout or power walk for an hour or so, but I am scared of how it would make me feel and what might happen, thanks to scleroderma. The fear is real!

I am not alone in my anxiety about getting back into exercise again. It seems to be a problem for many scleroderma patients because of fatigue, pain, or shortness of breath, among many other issues this disease introduces.

I’m not afraid of the feeling I used to get after pushing myself hard at the gym when I was well. The only way I can describe that particular physical experience is to say it feels like a “healthy” type of exhaustion and breathlessness. But these days, even taking a shower makes me feel as if I will pass out. I am eager for my cardiologist to get to the bottom of how scleroderma is affecting my heart.

I am looking forward to the results of my recent cardiac tests because I hope that once they know exactly what is wrong, I can begin physical rehabilitation. I have an optimistic belief that one day I may get back into the gym.

When I worked as a counselor, my philosophy and resulting practice were to always remember that each client was a unique individual. While I was trained primarily in one main therapeutic approach, I decided early in my career to take an eclectic methodology with each person. I noticed after many years of working with clients that rather than trying to force each one to use the type of therapy that suited me, it was much more helpful to invent a novel therapeutic approach that suited each individual.

This principle could apply to scleroderma patients trying to begin an exercise program. I am hopeful that once we know what is wrong with my heart, there will be a kind-hearted, skilled physical therapist who might just be able to rehabilitate me. It will be someone who appreciates my struggles and can figure out a tailor-made plan.

Although I may never compete in a body-shaping contest again, I am certain I still have my Lycra gym pants tucked away in the murky depth of my wardrobe somewhere. Now to muster up the energy to find them.

I will keep you all posted on my exercise journey because, believe me, if I can do it, anyone can.

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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.

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.
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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.

3 comments

  1. Timothy Lee Coffey says:

    I started having worse symptoms overall when I exercised, weakness in muscles all the time. not to mention the heart issue’s and Fibrosis. So I am limited to same type work out as you now. I have tried to maintain same weight and not worry as much about losing weight anymore.Male/235,6′. I would love to be at 200 for my spine is in bad shape, from bones becoming weaker. Well why I am dreaming I would love to be at 175, but when in Military worked out often and ran around 16 miles a day for two years, and still was at 195. It is a complicated disease to work around for sure.

  2. Heather Milligan says:

    Hello Kim, Hope your heart gets sorted out… soon! I do not suffer from exhaustion, but muscle weakness in my legs and arms. Physio didn’t help much, my lovely Rhuemtologist is investigating more. I do lots of walking down our driveway and along the street at a gentle pace. I can get back home easily to collapse in a heap when I get overwhelmed. Impressed you were a body-shaper, lots of work involved in that. Best wishes Heather

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