When you’re diagnosed with a chronic illness, it’s difficult to wrap your brain around the word “chronic.” Over and over again, you are confronted with a new meaning, a new symptom or complication, a new thing you can no longer do. When that happens, you have to adjust your definition and your mental picture of yourself.
And sometimes you feel pretty good. Your treatments are working, and you’re able to (mostly) live the way you want. And, since you can’t worry about your illness all the time or you’d go crazy, you forget about the shoe dangling over your head.
Then it falls.
Each time this has happened to me, I grieved for a time then did everything I could to get healthy enough to go back to work. My greatest fear was the possibility that I wouldn’t be able to work anymore. My job was how I identified myself and my worth.
Over the last nine months, it became clear that the severe fatigue I experience as part of my Crohn’s disease was making it impossible to work full time and have any kind of quality of life. I worked 40 hours a week, and I had to rest the remainder of the week. Eventually, that wasn’t enough, and I began to struggle to stay awake at work and during my commute. Then I fell asleep in bumper-to-bumper traffic and tapped the car in front of me.
During this time, I began to see myself in a new light. I am not just a computer programmer. I am not my disease. I am a child of God, and my pain can serve a higher purpose.
So my husband and I decided it was time for me to leave full-time work. At first, we were scared witless. To lose half our household income is no small event. At some point, though, you have to decide what is important. As the saying goes, you don’t die wishing you’d worked more.
This is not to say I won’t work at all. I LOVE creating websites (yes, in caps even). I want to do that again, and it’s something that I can easily do from home and to rest when I need to. I can take on a project and work on it on my timeline. Insomnia? I can work when I can’t sleep. Exhausted? I can sleep in without worrying about sick leave or vacation. Doctor appointment or infusion? I don’t have to clear it with anyone.
So, this website will be a place where I can talk about how I navigate this new season in my life. I’ll talk about what works and what doesn’t, and maybe my experience can help someone else get through a similar change in life.