Is Having Fun with Scleroderma Possible?

Those with scleroderma will tell you that the disease is many things, but fun is certainly not one of them.

Lately, I have been struggling with the effects of medication changes to address my secondary adrenal insufficiency. Weaning off hydrocortisone is part of the plan to check whether my adrenal glands are beginning to function normally again. I will be tested in due course.

My suspicion at this point is that they most certainly are not working properly, as the drop in medication has brought about fatigue, muscle pain, and nausea. This, in turn, has left me confined to my recliner for much of the day. Frustration is building up, together with copious amounts of boredom. To say I envy those who are able to work is an understatement.

Melancholy has begun to set in. Keeping myself enjoyably occupied as I sit here has become tedious — there are only so many rounds of online bingo a girl can take.

In desperation, I decided to be proactive and make a list of all the fun things I wanted to do, with the determined notion of working through them. However, my determination quickly turned to dismay when I read back over my list. Everything from “walking along the beach” to “attending vegetarian cooking classes” all required amounts of energy and a physically fit body that I simply don’t have. My list, despite suiting me when I didn’t have scleroderma, was now sadly outdated and far too ambitious.

These days, completing a full clean of the bathroom is a proud moment, and something I look forward to being able to achieve on the days I feel well enough. In short, housework has actually become fun. I felt kind of sad when I realized this.

How can it be that my fun-o-meter has changed so drastically over the past few years? Where are the days of activity-laden holidays, walking for miles with my ’70s music blaring through my headphones, and energetic board games with friends? All this in addition to working full time!

It would seem that I will need to make a paradigm shift in order to introduce the fun back into my life. It is time to change my assumptions of what enjoyable amusement means for me now, and how it can work.

Being chronically unwell does change things drastically. Despite the challenges, I simply don’t believe that having scleroderma means that fun is a thing of the past — it just means fun will be different. I think this updated belief is the foundation for success. So, with this in mind, I have set to work to produce a new list.

It hasn’t been easy, but it has certainly cultivated my skills in compromise. There is a bridge to be built between having fun and what my body is capable of. Yoga for Scleroderma holds great promise, and I am confident Pinterest will offer some craft options that won’t hurt my fingers as much as crochet has started to do. A new electric bike of my very own could be an option.

Finally, I have my writing. It is something I love to do and can be undertaken while sitting in my recliner. I now have plans to write a novel and a self-help book. Exciting times. Although scleroderma has stolen many things, it can’t steal my fun.

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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.