Using a Timetable to Keep My Sanity During Scleroderma’s Changes

“So, have they given you any indication about your prognosis regarding longevity?”

I wasn’t really prepared for that question. After all, I was just at the podiatrist getting my feet looked at. (It seems the hardening of my plantar fascia has been making walking difficult.) My limited lifespan wasn’t something I had considered would be up for discussion that day.

I had to think for a bit before giving my answer, which consisted of some babble about “no one knows because outcomes for every scleroderma patient vary.” But I have to say, both the nature of the question and my answer got me thinking.

Systemic scleroderma is not entirely predictable. There are many things we don’t know about it, and each individual’s experience with the disease is unique, as is their prognosis.

The volume and variety of surprises that scleroderma has hit me with are quite overwhelming, particularly lately. When I refer to surprises, I’m not talking about the kind you find under the Christmas tree. I continually experience new clusters of progressive changes and symptoms, each group requiring medical investigations and treatment, and therefore, adjustments to my everyday life.

Currently, my doctor is seeking second opinions on some new symptoms, and so I’ve been offered additional diagnoses resulting in adjusted treatment plans. Consequently, there are unexpected appointments and procedures to deal with.

Changing boundaries

The problem with the constant changes brought about by the progression of my disease is that my boundaries for everything in life are always changing. There are things I must stop doing, and others I must begin.

Before scleroderma, I learned to cope with change as I went along, but the changes these days are coming thick and fast, and are both disrupting and a little bit scary. Life doesn’t feel as secure anymore, and I’ve lost my sense of safety.

Feeling safe in the world is paramount to functioning. A third day of feeling like I wanted to stay curled up at the bottom of my bed and remain there for the perceivable future clued me in that all was definitely not well. Something had to be done.

Creating security

The issue is that I simply cannot escape my disease altogether with its constant changes, so I concluded that I need to create my own security. The secret was to find those basic things I could do. Once I’d figured those things out, I managed to use them to create a stable routine. 

I know I can eat breakfast as well as get showered and dressed every day. I can also manage to aqua jog three times a week. Despite needing to rest for at least an hour after showering and napping the rest of my day after aqua jogging, those are still things I can manage.

There are no other planned activities on aqua jog days, and ensuring the dreaded shower happens every morning is my fundamental event. While basic, the timetable I have constructed is my haven; its predictability and boredom is the antidote to the disruptive changeability of scleroderma.

The power of my routine is that I make scleroderma and everything it contributes (including doctor’s appointments, tests, procedures, and treatment plans) ALL fit in around it. The feeling of making this disease dance to my tune gives me a sense of mastery over it despite its progression. Its unpredictability now fits into my surety, and not the other way around.

I really do feel predictability has been given bad press. People seem to think that repeating things is tedious and boring. Being impulsive and adventurous is fashionable. However, for me, although “repetitive and unexciting” is not how I originally envisioned my life, those characteristics may well be just the things I need.

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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.