The absolute MOST frustrating aspect of Fibromyalgia for me has been the roller coaster of energy. I have been known to crash out of virtually nowhere. Randomly, I awake completely exhausted and immediately fall back to sleep for hours. Even after the extra hours of sleep, my body will feel like a load of bricks.Other days (like today), I know I've earned it. (In other words, please excuse writing quality today! lol). I planned an epic end of summer fun day for my kids and their friends yesterday before we start homeschooling next Tuesday and I'm paying for it today. It was just too much activity and a long day. I don't regret it, though. I WANT to be able to give my kids a really awesome day occasionally, even if that means I have to pay for it later. The alternative is missing out on life and I refuse to give Fibro that power over my life or my kids' childhood!
I've learned over the years to plan accordingly. Active days must be followed by a clear day on the calendar. I have to be careful on days I feel particularly energetic, because if I overdo it with activities or chores, I will have to pay the next day. I have become adept at monitoring my energy bank account being very careful not to overdraw when I can't afford to replenish the next day.
There is a really great explanation of this concept in an essay called The Spoon Theory written by Christine Miserandino on her blog But You Don't Look Sick. The general concept is that energy is like currency. Those who don't suffer issues like ours have a nearly unlimited supply of "spoons", but those of us with chronic illness have a wildly varying number available depending on the day. On some days, it can take almost all of our spoons just to get dressed, making us have to ration the remaining spoons carefully over the rest of the day. Today my remaining spoons were used to take care of my kids, meaning I haven't even eaten. I don't even have enough spoons to think about what I want to eat, let alone make it happen.Extreme fatigue was one of the very first symptoms. It began when I was 14 years old and a freshman in high school. Starting in early December, I was so tired that I could barely go to school. My doctors were convinced I had mono and put me on bed rest. I didn't go to school the entire month of December. My parents pulled out the sofa bed in the family room so I could rest and watch TV. Prior to that month, I was a very active kid who was always on the go. Staying in bed for the entire day was very out of character for me. Over the next 3-4 months, I attended school when I could, but usually required 18 hours of sleep the next day to recover. We saw specialist after specialist (all of whom tested me for mono), but they never figured out the issue. The following April, it went away as quickly as it appeared.
In the years since, my energy has had periodic drops in energy. It got pretty bad after the birth of my first child and it took me several years to heal, which was just in time for me to have another child. My energy has become progressively more consistent in the 7 years since then. There was a time in my life where I was in a constant state of fatigue. I'm so grateful that the drastic drops only come occasionally these days.
But when they happen, I feel utterly and completely empty...
