“One day you’ll wake up and feel normal,” my doctor said. I was diagnosed with Chronic Fatigue Syndrome (CFS) in 2005. I didn’t believe him. I hadn’t felt normal physically for years. Every morning I felt as if I hand’t slept at all or worse, as if I had been up for thirty-six hours straight. My joints aches. My muscles felt as if I had run a 50K. And to top that off, the world was always foggy. I felt as is I were moving through quick sand instead of air. If I walked up the steps, I was out of breath, my muscles screamed for oxygen. Then one day, not out of the blue. One day, after months of following doctor’s orders, taking supplements, a strict diet with green smoothies and healthy whole foods (that’s another post), I woke up feeling normal.
I had dreamed about this feeling. I dreamt that I had gotten up and gone downstairs to make coffee. In the dream, I felt great. No aches. No pain. No brain fog. No exhaustion. Then I woke up. This time it was real. I felt okay. I couldn’t believe it. So, guess what I wanted to do? EVERYTHING. Clean the house. Write. Paint. Refinish a piece of furniture.
I was reminded of this feeling when friend and CFS sister texted me the other morning. t She awoke feeling normal after two years of the opposite. She was so excited, ready to get back to regular life, to pull her camera out, to edit photos. “Take it easy, don’t overdo it,” I said, “enjoy feeling well.”
It’s so durn tempting to conquer the world that first day of feeling ‘normal’ when coming out of a major crash. We Chronic Fatigue suffers can spend years sitting on the sidelines watching people do normal stuff such as cleaning their houses, going out for coffee, going to church, painting, writing or fill in the blank. Often, in the middle of the crash, I wanted to hit people over the head with a rubber mallet and say, “don’t complain about having to do normal stuff! Enjoy it.” Post major crash, I am more thankful. When I can go out with my sister for coffee, I write it about it in my journal and put it on my thankful list. I also keep track of my activity to avert another crash. It’s so tempting to run forward at break neck speed on the first normal feeling day. Don’t. Just don’t. You will pay the piper later.
- Keep some energy in the tank. Last month, I rented a RAV4 to drive to visit my brother and family. Brother Jess and I drove the RAV4 to downtown Charleston, S.C. to do some sight seeing on foot. Neither of us payed any attention to the gas gauge. We were more focused finding parking and then the time on the meter. When we got back to the car (with six minutes to spare) to leave the city, the car began a loud annoying beep. Turns out, we were dangerously low on fuel and this was the cars way of telling us. It beeped until we found a gas station. When you have CFS, often your body is beeping loudly and if you are like me, you ignore it, at least until you wise up. Then comes the crash. The body is so out of fuel, it can’t move forward. It sometimes takes days for our bodies to recycle or produce energy while non CFSers can do it in hours. So, we can’t drain the tank. We have to keep some energy. Think of it as refilling your tank as soon as it gets down to a fourth. I love Christine Miserandino’s explanation of this in the Spoon Theory. I recommend you read it and keep in mind, at the end of the day, you should have a few spoons left. It’s like keeping a bit of gas in the tank. If you don’t, you may wake the next morning feeling depleted. What does this look like? Sit down and rest when you aren’t exhausted. It’s 8:00pm and you still have a load of laundry to fold or some other tasks. You feel okay. Don’t do them. Sit down and rest. Rest when you aren’t exhausted. Weird. I know.
This past week, I ignored my own advice. I didn’t keep any energy in the tank. I drained it and dipped into the next day’s supply. I’ve been busy, getting up between five and six to write, filling the rest of my day with activity and exercise. I had a mini crash the other day. I felt dizzy, foggy and boom, I hit that brick wall. When this happens, I have to rest and usually take a day or two off of exercise (it used to be a week). I pull out my calendar and go over it. I make it a habit to write down everything I do, including exercise. This helps me assess where I need to cut back. Which leads into the second practice I will share on Monday.