I left the house yesterday. Please contain your cheers and applause. I went to the grocery store and today I’m sick. Sick as a dog — nose running, chills, sweats, congestion, fever. I’m sick as the “doggiest” of dogs there is.
I work, or worked, from home for the past year. Never mind that I’ve been on medical leave the last seven months of the year. When I got sick last winter and was on medical leave, I realized my job outside the home (managing social services and program development for a local non-profit) was just way too much to handle. While I was off, I found remote work for a home sales job, and when I went back to work at the office, I gave my notice.
I thought this job was going to solve all of my problems, and for a while it did. I loved working from home. I would wake up reluctantly about 10 minutes before my shift would start, warm up some coffee and sit at my desk in my pajamas and log into the computer and phone system. I even had permission to use the bathroom more often than normal throughout the day! What more could a chronically ill girl ask for?
Everything was great until I found out I had staghorn kidney stones in both of my kidneys that would require invasive surgery to treat. I was sent home with a nephrostomy bag and was in so much pain that breathing felt like an Olympic effort. Then I went on medical leave, and due to my pre-existing conditions and complications, I haven’t been back. I made the decision to not work — for my health — and to apply for Social Security Disability.
This means I don’t leave the house much. I really don’t have much of a reason to, and it’s actually a pain to do so. Often times a shower, getting dressed and making myself look presentable to go anywhere zaps my energy, and I end up staying home anyway. I plan ahead for doctor’s appointments and try to do all of that the day before to limit the effort it takes to get ready. I pretty much leave to go to appointments or the grocery store and to visit family maybe once a month if I’m feeling well.
It’s a super exciting life and a life void of not just socialization but also germs. Good bugs, bad bugs, they are all out there, but I’m not. For the most part, I’m limited to my apartment and whatever my girlfriend brings in the house with her. So when I venture out of the house, I’m exposed to all of the bacteria and viruses that I would have otherwise never encountered and have no immunity built up against and I get sick.
When my mother-in-law had neck surgery, I volunteered to spend the day with her at the hospital since I don’t work — no jokes, I love my mother-in-law. We had a great time online shopping and knitting, but wouldn’t you know it, I got sick. I go to an event at the Convention Center and get sick. Go to the ER with a kidney stone and get some other kind of sick. You get the picture.
So, while I sometimes don’t leave because I’m tired, sore, already sick or having a bad day, I also have to weight the risks of picking up something else that I don’t already have. I’ve missed so many things I was so excited for because I was feeling a little under the weather and was afraid of getting even sicker. Some people have fear of missing out, I have fear of getting sick.
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I am a 30 something woman who has been living with multiple physical and mental chronic illness for most of my life. I enjoy reading and researching about my conditions, but especially reading other’s personal stories. It is my hope through writing I can reach other people and help myself sort out what living with chronic illnesses means to me. You can catch my blog, Lilith and the Lotus, at www.lilithandthelotus.com
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