There are some very complicated aspects to scleroderma, such as: the myriad of overlapping symptoms and constant side effects, together with secondary conditions created by the many medications I must take. Revolting tests are another thing I must endure. One of the worst has to be the manometry studies, which are not my favorite. I even had to have six months of hypnotherapy just to get me in the hospital door to have that one procedure done.
However, there is a paradox about all these complications. In short, scleroderma has simplified my life — and it’s come about through an unexpected kind of purification process.
In science, things become purified in many ways, such as evaporation, crystallization and smelting. All these methods filter out contaminating substances and isolate the desired product. In my case, I think some kind of filtration system has occurred, kind of like a series of “scleroderma sieves,” causing my life to become more clean and simple.
Initially the fatigue was the first “sieve” that removed all unessential social busyness. It is so difficult to shower and even present myself as vaguely human-looking most days, so achieving anything extra went straight through the sieve. Goodbye unnecessary social events, telephone calls and shopping expeditions.
Following this was the “friends list” sieve. I have found that only my most loyal, loving friends have not fallen through the holes. They are the ones who are interested enough in me to listen to my daily medical updates, the ones who understand the many times I am unable to visit, accept visitors or go out for impromptu coffees, and who realize I’m no longer the party animal I used to be. Most of the others weren’t interested in sticking around if I was unable to meet their needs in some way, so through the sieve they went! Goodbye to the self-centered people in my life. I now have a very small group of friends who are like gold.
Another part of my life has also been simplified and refined because of scleroderma. The optional extras in the day that most people take for granted have been sieved completely away. Gone are the full days of housework, cramming in multiple visits to the supermarket, after-school activities for my son, daily workouts at the gym, pool or simply walking around the block. They have slipped through the holes, slowly but surely, and so now the “basics” are mostly all that happen in my day. Get up, get dressed, eat and rest.
This whole refinement process was brought to my attention this morning. It was pretty exciting because I woke up feeling reasonable, and even felt well enough to make jam. There were leftover apricots that needed to be used so I set to work. There I was, in the kitchen, stereo cranked up, doing a peculiar kind of dance to Bob Marley’s Jammin (it seemed a highly appropriate song at the time). I’m unsure if “dance” would be the correct term. It was a kind of bobbing up and down as much as my knees would allow, with some occasional and slightly unusual lurching movements involving my arms and shoulders, all done in between stirring apricots. But I gained so much pleasure from such a simple enterprise — an unusual extra in the middle of the usual minimalist type of day I often experience with this disease.
This is the joy that scleroderma’s refining process has brought about. The pleasure gained from simple amusements and experiences is now amplified. Extra accomplishments these days are something I never take for granted. I now savor and gain so much more from these times — days like today where I simply have enough energy to crank up Bob, and make some jam.
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.