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How, When and Why I Sometimes Take Risks With Chronic Illness

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I’m sitting on the couch trying to patiently wait as antibiotics fight off the strep infection my immune system is incapable of handling. There is nothing left on Netflix to tickle my interest. I am so bored.

To alleviate the boredom, I reach for my phone to check out social media and see what’s going on in the lives of family and friends. Mistake. My neighbors have posted pictures of their fun in Vegas. Great. Now I’m bored and jealous. Wonderful combination.

I’m not just jealous of my neighbors. Nope. My daughter is out on a hike with her friends enjoying the sunshine and working on her photography skills. My husband is in another state for a job he loves and making plans to see our grandchild without me. (Raspberry!)

You might be thinking that I shouldn’t be jealous of him and his job. I get to sit on the couch and relax. Except, after this strep infection passes, I still hardly get off the couch or get out of bed. The most activity I get on your average day is a gentle walk. On a good day I can make dinner too.

You see, I’m also jealous of average people who can do things without having to weigh all the risks and benefits like going to the beach without worrying about the sun, or spending a couple hours at the mall shopping without wondering if they’ll have the energy to get ready for bed later. Thanks to chronic illnesses and chronic pain, I can’t do anything without very careful consideration. And I mean anything.

But sometimes life demands living. Sometimes risk assessments must be pushed aside and something else must be experienced. But this must be planned very carefully.

For example, last fall for my birthday my husband and my daughter decided that for the sake of my emotional well-being I needed a day off from being sick. We all planned carefully for my carefree day. I went out without a hat. I took the time to feel the sun on my face. After a gentle massage at a spa, my husband took me to a nice restaurant on the coast. We were there on the patio for hours. We ordered what we wanted from the menu and had alcoholic drinks. We had dessert.

photos of a man and woman sitting at a table overlooking the ocean

Those things are risky? Yes. The sun easily triggers flares for me. Alcoholic beverages cause me intestinal problems and are a no-no because of my meds and already scarred liver thanks to lupus. Being out for hours can mean being in bed for days. For my birthday, I was throwing caution to the wind.

However, we prepared. We planned what meds I would and would not take that day for safety and to alleviate pain. We planned extra sleep the night before and extra quiet days following. We made sure food in the days leading up to my birthday and after were extra gentle on my system. Making and carrying out such plans are a nuisance. So what did I gain?

I gained a day where I truly felt alive. A simple day for most is an amazing experience for me. I sat there on that patio overlooking the ocean, observing a bee investigating the flowers before me, feeling the sun set to my right, enjoying the company of my love to my left, and knowing every sight, every sound, every smell, and every taste was more vibrant to me than most of the other people there.

That’s living…

When was the last time the world around you was vibrant? Was it in Vegas? Was it at the beach? Was it in a garden? What risks did you take to experience it? Was it worth it?

I’m still sitting here on the couch waiting for this strep to pass. I’m not bored and I’m not jealous. I’m grateful for past days and days to come.

Originally published: April 6, 2018
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