A columnist describes one of the many ways the disease changed her life by Amy Gietzen
As 2022 comes to an end, I’m reflecting on the year and trying to look forward to all 2023 might offer.
Many adults are probably excited to ring in the new year in style by going out on the town or enjoying a few drinks with friends. Sometimes I envy people who can spend a fortune on lavish outfits and expensive bottles of Champagne, and eat filet mignon and lobster tail in celebration. I long for the days when my only problem was deciding what to wear when I went out at night.
The last time I went out for New Year’s Eve, I was 20 years old. At that point, I had recently been diagnosed with scleroderma and was in denial about my disease. So I behaved as if I were unaffected by symptoms, brushing aside the pain and discomfort and forcing my body to continue as normal.
I made plans to go out with close friends to celebrate at a local bar. Sounds normal, right? Unfortunately, my evening was anything but normal. I ended up getting sick after one sip of my cocktail and had to leave immediately. I became sick several times on the drive home and had to pull over to vomit.
I couldn’t understand what was wrong with me. In my mind, I was fine, when in reality, I was having a serious scleroderma flare-up.
It took me several more years to accept that I was no longer healthy and couldn’t do all the things I’d once enjoyed. Giving up things I loved to do was extremely heartbreaking and difficult for me as a 20-something. Although I wanted to continue living life on my own terms, I realized scleroderma wasn’t going to allow me that luxury.
Learning to accept my disease and limitations also taught me that I needed to live differently to keep my body healthy and strong. That required me to change my habits and expectations, such as how I spent New Year’s Eve, which was easier said than done.
A new kind of celebration
I’m now 40, and every aspect of my life has changed drastically. Hitting the local pub isn’t an option for me anymore. I’d never be able to stay out until 4 or 5 in the morning because of how tired I always am. I now spend New Year’s Eve at home in fuzzy pajamas. I watch scary movies and eat healthy snacks.
It’s funny how different my life is from before I got sick.
I think a part of me will always miss being carefree, but that chapter of my life is long gone. My priorities have changed, and I can’t afford to throw caution to the wind anymore.
My New Year’s Eve celebration might not be the most exciting way to say goodbye to 2022. However, for me, it’s a way to appreciate surviving another year. I can leave behind all the difficulties that came with scleroderma this year and begin 2023 with a fresh outlook on my life and illness. A positive attitude will help me fight through another 365 days of living with scleroderma.
Scleroderma Queensland Support Group