I Can’t Just Pick Up and Go, but I Still Control My Life With Scleroderma

Planning and self-motivation are important life strategies for columnist Amy Gietzen

Amy Gietzen avatar

by Amy Gietzen |

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I would venture to guess that most people wake up every morning feeling refreshed after a good night’s sleep. They are probably bright-eyed and bushy-tailed, reenergized, and ready to take on the new day.

Unfortunately for me, waking up every morning seems more like the movie “Groundhog Day” than anything else. Instead of being well rested and recharged, I awake each day feeling exhausted and drained. Scleroderma will do that to your body.

Each morning, I open my eyes and confront stiffness, sore joints, muscle pain, and chronic fatigue. If I didn’t push myself to get up and go on, I’d likely roll over and immediately fall back to sleep for the rest of the day. But I refuse to waste time. I have learned through years of living with scleroderma each moment is precious and memorable. So, instead, I force myself to get up and move, no matter how much staying in bed might appeal to me.

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Coming to terms with life with scleroderma

Since being diagnosed with scleroderma over two decades ago, I have come to terms with the way my body acts and reacts to the things I do each day. If I know I will be doing a lot of standing or walking that day, I recognize that the next morning, my body will feel sore and tight, and I’ll probably need the day to recuperate from the previous day’s stress.

I also know that if I push myself and do more than I should, I will pay for my choice the next day. It’s just the way life works with scleroderma.

At first, it was difficult to accept the consequences of living with scleroderma and the havoc it wreaks on the body. I just wanted to be like everyone else. I wanted to sleep when I needed to, eat what I wanted, wake up feeling ready to go, and live on my own terms, with no worries, restrictions, or anything else holding me back. I learned early on that scleroderma does not work that way. It was something I had to accept and move past pretty quickly to get on with my life.

Nowadays, my life is less sporadic and 100% managed. If I want to go on a trip, I must thoroughly plan it out. I must make sure I can do the amount of walking involved or make arrangements for a motorized scooter. I need to bring my medications and have drinks with me at all times in case of dry mouth or dehydration. I check the weather and dress accordingly, and bring appropriate additional clothing with me.

While I can’t just pick up and go anymore, it doesn’t mean my life must stop — it just means it takes more time and effort to get to where I want to go.

Are there restrictions here and there? Yes, such as being unable to walk long distances independently. Or I may be unable to withstand cold temperatures for a prolonged period. It may even take me quite a bit longer to get going each day. But over time, planning ahead has become second nature to me. I have learned what is needed to enjoy my life as much as possible.

I refuse to let limitations control my life and the way I want to live it. I might have to do things differently, but by no means will I ever give up on doing the things I enjoy. I abide by the saying, “Where there’s a will, there’s a way.”

I may not have chosen scleroderma, but how we choose to endure it and maintain the quality of our lives is completely within our power.


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, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Kathy Blankenbecklor avatar

Kathy Blankenbecklor

Sometimes I forget others are walking this road too.
I shared with family to let them know just a tip of the iceberg that
is our daily lives.
Thank you for sharing, be blessed

Reply
Dinah watkins avatar

Dinah watkins

Another great heartfelt article Amy! Keep them coming

Reply
Amy Gietzen avatar

Amy Gietzen

Thank you so much Dinah

Reply
Janalyn Patterson avatar

Janalyn Patterson

Thank you for your encouraging and insightful articles. I was diagnosed with Scleroderma in 2016 (but I'm fairly certain I was having symptoms several years prior to that), and I started feeling the chronic fatigue last fall. It was just a day here and there back then, but now it is every day. I am having to rethink the things I want to do, and manage my expectations better. It helps knowing other people are going through the same things, and it isn't all in my head!

Thank you,
Janalyn Patterson

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Amy Gietzen avatar

Amy Gietzen

I am grateful to be able to help other people with this disease through my writing!

Reply
Ilene Wax avatar

Ilene Wax

Amy, another great article. Thank you sooo much for sharing your journey. You are an inspiration! I look forward to your writings. Thank you. And thank you for being you.

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