Living With CFIDS

Those "Old Me" Days
By Nadine Goranson

I’m starting to forget what it was like. I used to put in a full day’s work at my job, run home to prepare dinner, then spend time on a project or an evening of entertainment. After six years of living with chronic fatigue and immune dysfunction syndrome (CFIDS), it is hard to remember this “old me.”

I was reminded of those “old-me” days when my friend and I held a garage sale. To prepare, I sorted through a plastic storage unit that held my children’s childhood treasures. Here, I found a dream-catcher necklace my son and I had made for his second-grade Thanksgiving costume. I remembered purchasing supplies and the many hours we spent in the evenings—after work—making that necklace together. There were a lot of memories and reminders of the old me, the me before I became the person I am now—the one who no longer goes to work or works on projects.

My husband and I relocated all of our stuff into the garage, and I began the slow tedious work of sorting, the type of work a healthy person can tackle in a night or two. But it took me more than two weeks to complete.

My friend was also preparing for the sale. She works full-time and has an active social life. The weekend before our sale, she drove a van full of kids to a youth program where she hiked and helped supervise 30 kids. She then went back to work on Monday. In the midst of all this, she prepared for the sale.

When I’m with my friend, I have some very conflicting emotions. It’s great to be with her, but I can’t help but feel envious of her energy. Before CFIDS, I did more on my lunch hour than I now do in a day. When I’m with my friend, I sometimes get a flash back to those “old-me” days.  

The day of the sale, I woke at 6:00 a.m. and thought, “I can’t do this.” But my sense of duty propelled me on. So, with my husband’s help, we got the sale started. With questions to be answered and people to chat with—a parade of colors, sounds, and sights—my brain on CFIDS was on overload.  I began to feel waves of aches and hot flashes and my insides felt like Jello, but I took my pain meds and carried on.

At 4:00 p.m., we closed up shop and vowed to find the items that had eluded us during the previous two weeks for the next day of the sale, but first I needed to eat. As I was deciding what to fix, I noticed I was not really picking up my feet. I hurt all over. I went to check on my son, but when I tried to talk to him, I couldn’t remember words like “pizza” or “trash.” “Mom,” he said, “you need to rest.”

Darn if that sense of duty didn’t pop up again. I ordered takeout—I had things to do. But I never made it to those things. In bed, exhausted but unable to sleep, my frustration bottled up inside me. I just wanted to be like my friend. My husband listened (again) as I vented my frustrations.

The next day didn’t bring as many customers and my brain didn’t get as clouded. I was tired and ached, but I wasn’t getting worse. I talked to my friend about the challenges of living with CFIDS and what the garage sale had cost me. She was sympathetic, but I worried that she would think of me as a complainer.

I learned a lot from this experience. I am no longer the “old me.” The more I overdo things, the worse I feel. It is tough to pace myself and accept that I can no longer do the things I once did. But I must keep trying to find my place in the world as the “new me.” 

Nadine Goranson spends her time caring for her family, reading, writing, and resting with dogs Sammy and Floyd near the Rocky Mountains of Colorado.