"If you really wanted to spend time with me, you would find a way to get off of the couch." My heart sinks whenever my wife, whom I adore, says that to me during a bad stretch of fatigue. I live for the "good" days, when I have energy and don't feel like my body is a giant blob of inflammation. The "good days" are predictably eroded by first a sore throat, followed in a day by ulcers on my tongue, and then a crippling fatigue made worse by intractable joint and muscle pain.
How do I explain that my fatigue is not an issue about self will? How do I get a loved one to understand that I am not choosing to sleep 12 hours in order to have 3 or 4 good hours in a day?
I have been following the B12 thread closely and am on my second day of taking supplements to bolster the health of my mitochondria. I suffer from chronic PMS: Punky Mitochondria Syndrome. At least I try to find the humor in this. I am hopeful that these vitamins will turn things around. However, in the mean time, any insights on helping those I care most about understand the "bad days" would be terrifically helpful.
I agree with what someone on this site wrote: unless one has experienced it themselves, no one can understand the fatigue we suffer.
I hate feeling misunderstood.