Scleroderma is a pretty “random” disease. I think the word “random” sums it up nicely for me at the moment.
Currently, my symptoms are haphazard, ranging from heart palpitations and low oxygen levels one day to spending the next day in bed with raging stomach cramps and gastrointestinal motility issues. The delightful surprises that greet me each morning never end.
And it’s not just the day-to-day symptoms and challenges that are difficult but also the entire nature of the disease.
First of all, scleroderma is rare. We don’t have specialized scleroderma hospitals or clinics in New Zealand where I live. This means that there are random levels of understanding among the medical personnel who treat me. While most medical professionals I meet have heard of scleroderma at some point in their training and practice, it’s unusual to come across someone with a comprehensive understanding of the disease.
The haphazard nature of scleroderma means that no two patients’ presentations of the disease are exactly the same. While there are some basic commonalities, there are differences in each person’s symptoms. For example, my hands are only slightly bent, but many of my fellow warriors present with severe contractures. My heart issues affect me severely, while others have very little heart involvement.
Some days I feel OK to meet friends for coffee, but the next day I may be too exhausted to leave the house. It’s difficult to predict what each day will bring, and as a result, my social life can be hit and miss.
I’m not a random kind of a girl. I like my life to be ordered; it gives me a sense of control. And who doesn’t want to feel in control of their own lives? So what is this Scleroderma Warrior to do?
I have figured out a survival plan for myself. I have created routines that I stick to every single day, no matter what. My routines include a positive self-care element and can be carried out from my recliner or bed if necessary. These simple habits which happen around the same time each day include having my special cereal at breakfast time, applying my anti-inflammatory lotions after showering, and meditating for at least 30 minutes every night before sleep.
These small regular acts of service to myself help me to stay grounded. They give me a sense of certainty in knowing that they will happen each day regardless of how I’m feeling.
I didn’t choose to have scleroderma, but I can choose how I deal with it. When I am disciplined and keep to my special routines, I gain a sense of certainty amid the random nature of the disease. I know that these things will occur daily despite the chaos my body may present to me upon waking.
These routines give me a sense of pride and confidence that scleroderma cannot disconnect me from myself despite its best efforts.
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.
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