My Mother's Love Inspired My Scleroderma Wellness Reboot

In August, my mother passed away. She was diagnosed as terminal and died less than three months later. As she slipped away, one of her last searches on her phone was looking up the symptoms of scleroderma and how to manage them. In other words, my mother was worrying about me until the end.

That’s incredibly powerful. As well as motivating. It forced me to think about how I am managing scleroderma. My verdict? A solid “C” was it. I decided I needed a reboot, if for no other reason, but to honor her memory and channel my grief.

Rethinking What Wellness Really Means

Living with scleroderma, we focus on the immediacy of coping with our symptoms. Dealing with the day-to-day issues, we can easily forget that part of managing this illness is to focus on our overall wellness.

What do I mean by wellness? Taking care of your physical, mental, and emotional health. It means being proactive and recognizing that, because of scleroderma, we must invest in our health in a different way than others.

Wellness means we care for our bodies as we nurture ourselves. Even though I can’t do all the things I used to do, I am pushing back and being kinder to myself. Because as hard as living with this illness can be, I want to do my utmost to improve my quality of life.

Rebuilding Strength Through Gentle Movement

I am unable to exercise as I did previously, so I created a routine that combines gentle movement, including yoga, stretching, and balance exercises. I added in the latter because I was noticing difficulties with my balance. That frightened me. I also began tracking my steps and walking more. I can’t do these every day, but I track my progress weekly. And all of it is helping, especially regarding my balance issues. I have seen genuine improvement, and that’s incredibly gratifying.

I bought a yoga mat and found some resources on YouTube and Pinterest to guide me. I printed out yoga and balance routines, put them into a planner, and incorporated equipment such as stretching bands, dumbbells, and an inflatable ball for balance. While I can no longer do a standard pushup, I can use a large inflatable ball to do them. It’s about finding ways to work with your body. All of these ways of exercising can add a lot of benefit to your wellness routine. And once you have even the minimum equipment, you can find free routines to follow.

Redefining What “Exercise” Looks Like

Exercise does not have to be hard, driven, or leave you in a sweat. It can be gentle, such as Tai-Chi, soft yoga, and stretching. Movement is good, and there are even such things as chair and bedtime yoga, as well as other forms of less strenuous ways to move. I never push myself too hard, but I am consistent.

A popular mantra is “Movement is life,” and it’s true. Work with your body and check with your doctor. Know that even with scleroderma, I am making good progress. That’s a win and a mental boost, in addition to the physical benefits.

Nourishing My Body in a New Way

In addition to exercise, I have been working on my diet and eating habits. I hate that the word diet has negative connotations largely focused on weight.

Scleroderma impacts my digestive system. For years, I focused on eating “soft foods” and still struggled. I decided to change how I eat, focusing on protein, especially in the morning, and smaller meals. I began to reintroduce foods that had become problematic, including salads. I proceeded slowly, gradually.

Although I will never erase the digestive problems caused by scleroderma, I’m working to find a better balance that helps me to feel and function better. So far, so good. I see that actively working with my system and trying to improve how I eat is a huge boost. I confess that eating a small salad at meals now is a joy, small as that may seem. I had avoided them for years, so for me this is both a physical and emotional victory.

Check with your physician regarding any dietary changes. But just as with keeping your body moving, fueling it with the best foods helps it function better.

Reclaiming Joy and Mental Wellness

The third aspect of my wellness routine is focused on my mental and emotional health. Mindful time spent away from technology and pursuing the things you love is important. As odd as it may sound, I feel as if scleroderma took away my joy in creativity and hobbies. When you have to invest so much time and energy into living with an illness, fun seems to go by the wayside.

I decided to include this as part of my wellness and take back my hobbies. I’m creating and having fun. I’m reading more and journaling. I get outside more for walking, and it’s freeing. I even took part in an “Analog Challenge” in February, and it was incredibly helpful. Every day, I charted some type of activity that did not involve technology. The idea is to scroll less on your phone or tablet and live more.

All of this has been a huge mental and emotional boost. So often, we feel that scleroderma has not only changed us, but it has also robbed us of who we once were. I am learning that although I’m not who I was, scleroderma does not have to overtake every aspect of my life. I can still grow, progress, and enjoy myself.

A Legacy of Love and a Call to Care for Yourself

While I miss my mother terribly, I’m grateful she was reminding me to the end that I need to care for myself. Please be kind to yourself and invest time in wellness. Your body and mind will thank you.

Resource: Yoga for Scleroderma

Dolores Pfeuffer-Scherer, is a historian and a content creator.  Find her on Youtube and other social media under the username One Crafty Dolo. See my Pinterest page for exercise routines.

Pinterest: https://www.pinterest.com/doloresp/

YouTube: https://www.youtube.com/@onecraftydolo

Medium: https://medium.com/@doloresps