Myalgic encephalomyelitis (ME) manifests in many ways, often different from one person to the next, and even in one individual the symptoms can fluctuate, however; the one constant is PEM or post-exertional malaise. PEM hit me two days after we returned from Sedona.
I had been doing so well. My legs, which usually give me such a hard time, carried me up the mountainside in Sedona with no noticeable strain. I honoured my body by resting it the next day, and felt well enough to accompany Ric to the grocery store the following day. In fact, my legs felt so good that I opted to walk the grocery aisles instead of riding the mobility cart.
I was beginning to believe that I had experienced a miracle, except half way through the grocery store that familiar dizziness set in, and by the time we made it to checkout, I noticed that my heart rate was elevated and my spine was out of charge.
“I need to get home to bed,” I warned Ric. As usual, he ended up bringing all the groceries in. I put away the freezer and refrigerator stuff as quickly as I could, and crashed, spending the rest of the day lying down.
“Do you feel up to doing something today?” Ric asked me the following morning.
Always a trick question. I am always up to “doing something” and not always good at reading my body’s signs. “Sure,” I said.
So, we went for a drive, walked around a nature centre, stopped for lunch and came home. Symptoms were exacerbating. The bright light of the day was too much for my head which felt like it was on fire. I couldn’t stay awake in the car, and my stomach swelled accompanied by pain and nausea. By the time I got home and went to the bathroom, I had started to bleed. (It happens when I’m overtaxed. A side-effect of diverticulosis, I believe.)
The bleeding continued throughout the next day, and I avoided food. By nighttime it had settled down somewhat, but my stomach still felt sore, bruised.
The next day, I couldn’t wake up. Everything I did exhausted me, so I spent most of the day curled up in the foetal position, asleep.
I grew up with a father who spouted Norman Vincent Peale and Dale Carnegie. He believed in mind over matter. He taught us to be tough and that quitter’s never win. Believe me when I tell you that I have overcome some tough stuff in my life – even tougher than this stupid disease – but there are times when you just to have to lay down and throw in the towel. For a day or so.
I haven’t defeated this illness yet, but I’m also not done fighting.
Tomorrow’s a new day.