After reading Robin Dix’s recent column “A Day in the Life of This Fibromyalgia Patient,” I was reminded that although we all suffer through the complexities of this illness, we experience the symptoms in different ways and to different degrees. With that in mind, I am providing insight into what my life is like.
For me, pain and fatigue act on one another to varying degrees. When the fatigue is heightened, not only is my energy drained, but also my muscles feel like lead. With escalated pain, it causes other forms of pain to emerge (usually more spasms or burning sensations), and while fatigue is present, it doesn’t dominate. It is only after the pain lessens that the fatigue turns to sheer exhaustion, and I usually end up sleeping.
If you have read my columns, you know that weather practically rules my life, much more so in the past few years. Because every day can take a 360-degree turn, I do not have a set schedule, but I try to begin and end my day at the same time to provide some structure.
Good days are defined as having some energy and my pain is in its regular state, like a motor humming in the background. Other symptoms, like fibro fog, headache, gastrointestinal irritability, are mild or non-existent.
A bad day is when the symptoms limit my functioning considerably, or worsen to the point that I must take to bed for most of the day. Again, there are many degrees of variability in good and bad days, but to avoid overcomplicating, I’ll follow my basic ebb and flow.
Since mid-November, my days have started at 5 a.m,. thanks to a bouncy Labrador puppy who requests breakfast at this hour. (Before her our other loving Labrador began her day at 6:30 a.m.) I spend my days playing with her and tending to her needs, which consumes most of my energy. In addition to her care, she “supervises” as I integrate various household tasks.
I wish I could say that I dedicate certain days to certain tasks. But more often, what needs the most attention and what I am up to doing dictate what gets done. On good days, I am able to accomplish a few tasks; bad days I spend mainly on the couch, with the puppy bringing me toys.
I learned the hard way never to combine certain tasks in the same day, like vacuuming and laundry. When my husband returns from work, I lie down for a couple hours. Meals are easy to prepare (garden salad, spaghetti) or microwavable for the most part. Cooking from scratch is rare. My husband’s two days off are my respite days, when I don’t get up until mid-afternoon. On a bad day, I will sleep until evening.
Just as I am certain to arise every morning at 5 a.m., there are a few other activities I try to do on a regular basis as a source of enjoyment. I enjoy reading research articles and autobiographies, as well as doing crosswords and memory-testing puzzles.
For companionship, in addition to my puppy, I rely on regular contact with friends. Aside from some neighbors, I rely on Facebook to keep in touch with close friends. Radio and television also are a major source of entertainment. I thrive on classic movies, British comedies and old sitcoms. Most evenings, I try to spend quality time with my husband, perhaps with light-hearted competition watching Jeopardy or a sporting event.
Before bedtime, I look forward to the pulsating massage of a hot shower. But during extreme flares, I am too exhausted, and end up going straight to bed. Perry Mason reruns are the last event of the night, and with the aid of Neurontin (gabapentin), I am guaranteed 3.5 hours of sleep. But if I have irritable pain, a flare or a headache, insomnia becomes my friend for the night.
Over the years, I have learned to expect the unexpected and getting upset about bad days only makes matters worse. Even more so, I know that when I am in a flare, a good day is somewhere around the corner.
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.