Chronically Ill People Spend a Lot of Time at Home — This Is How They Make It Comfortable

by FORTESA LATIFI: For Entire Post, Click Here…

Before Tori Saylor was diagnosed with multiple sclerosis, she didn’t put much thought into her apartment. She had just two plates, two forks, and two spoons in the kitchen; her bed sat on a collapsible frame without a headboard. Tori describes her pre-illness living style as “bare bones bachelor pad” without pictures, decor, or even chairs — but after she became sick two years ago, her apartment became something other than just the place she slept at night.

Post-diagnosis, Saylor’s reprioritized. Aesthetically pleasing objects like her “gorgeous dusty blue couch” help her feel better about being at home, and anything that makes her life a little bit more pleasurable (like her coffee frother) or a little easier (like her shower chair) have value. Yet it was the latter detail that took a while for her to accept: Heat can be a trigger for her symptoms, and if she took a hot shower while standing, she would get so tired afterwards that she needed a nap. At first, her pride stood in the way of purchasing the chair, and she had to work through complicated ideas about disability and assistance.

“Once you give up this stigma related to aids, your life gets so much better,” Saylor said. “I don’t dread taking showers anymore. I can enjoy hot showers.”

Not all of the changes have been strictly practical. Next to her coffee machine, Saylor has a sign that says, “I like my coffee hot, just like I like my wife.” The sign makes her laugh and that’s its entire purpose. “Everyday joy is a little bit harder to find,” she said. “So I’m a lot more purposeful about creating little moments of joy that I can experience at home that I used to experience out in the world.”

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