Here is my first video documentation of a day in the life of. I apologize for the shakiness of the camera and the holes in the continuity, but it’s my first time. And I am bound to get better! The purpose of these is to show what cystic fibrosis patients deal with day in and out because a lot of what we do to take care of ourselves is behind closed doors.
Everyday we wake up we have so much ahead of us. The unpredictable nature behind the 24 hours approaching contains a million rivers, streams and oceans that we can end up swimming in, maybe by happenstance, but I think not. While trying to document a day of my life to show the what is behind each day of a cystic fibrosis patients life, I realized, both, how little I have control in the matter while at the same time how much I do have control in coping.
Before this day was documented, I had just finished 2 weeks of IV antibiotic treatments; I de-accessed my port and was on my way to a doctor appointment in the city. I thought this appointment would be good to document as a celebratory occasion to document, but rather it was a frustrating day. The 2 weeks of IV antibiotics had not made the progress of loosening my lungs and increasing my breathing capacity as we had hoped and I was told to continue IV antibiotics for an additional week (with my consent, of course).
So here’s the thing, I had just spent the last two weeks eating right, resting, drinking lots of water, watching tons of movies, performing IV antibiotics every 6-8 hours and performing additional respiratory therapy (the shaky thing from the video above) 3 times daily. When you do everything that is supposed to make a mathematical equation work, and it doesn’t, you can begin to question it all. But that’s what it is, this disease isn’t a mathematical equation yet, or we’d have a cure. A blanket of that familiar teen angst we all push through as a young adult filters through me. Sometimes I do feel like a 14 year old when I leave the doctors office, when your body was changing and you had no control over it.
After accepting the disappointment, it’s time to show up for life again. I have to remind myself of this and then I surround myself with the people who help that happen, as you can see in the video. Friends and family are key elements to surviving life. Sometimes I think a puppy would help too, but I’m not there yet. And I just have to keep trying. We all have to keep trying and keep showing up for life.
I hope to continue making more video blogs documenting the unpredictable nature of days, with the good and the bad. Thank you for watching and reading Episode Uno...
Vicki Thompson is a 29 year old with cystic fibrosis living in upstate New York. She explores the arts on the daily, takes care of maintaining her health in every moment and searches for the moon when it is missing from the sky. Follow her journey on Instagram at vicki_lynn27.
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