What a 'Bad Day' With Chronic Illness Looks Like

Some folks have bad days when things don’t go their way; I have bad days when my body completely betrays me.

A few times a month, I experience a 12-48 hour period of excruciating pain where everything but my hair hurts. It’s like a full-body migraine. I spend my day screaming in pain inside my own head. Often I can push through for enough hours to get past dinnertime. Then I can take pain meds, drop into a drugged sleep and hope the next day is better. Sadly, it often isn’t.

Last week, I woke up in a pain episode that wouldn’t allow me to push through. By early afternoon, I was planning my escape. “What is the least amount I have to accomplish before I go to bed?” After I threw laundry in the dryer and cancelled an evening work presentation, I told my husband good night. He was slightly confused since it was the middle of the afternoon, but I had already warned him that the day was not going to turn out well. After 18 hours in bed and a few doses of pain medication, I woke up to scores of worried emails. Apparently, I never canceled work plans. Folks noticed and figured I must be pretty sick. Well, I was and I wasn’t.

It’s so hard to explain to those who don’t live this pain-filled life. I am in pain every day. A few days each month are pretty good. Most days are just OK. Many days are hard but I muddle through. Other days are just “bad days” and need to end by any means necessary.

This is my life. I rejoice in the good days. I celebrate the “just OK” days. I appreciate the hard days because I can at least keep going. And I try to get through the bad days the best way I know how.

I appreciate the care and concern that folks showed me when I had to cancel my work obligation, but I’m afraid they will treat me like I’m fragile now. While my body is weak, I am very strong and I will keep on living this life as long as I have the power to do so.

I hope they see this, too.