Chronic Fatigue Syndrome is NOT chronic fatigue. It is waking up unrefreshed after sleep, inflammation and pain, weakness and inability to think clearly. It is not being able to process one's own life or what you're hearing. It's random sharp shooting pains, chronic pain, swollen lymphs, sensitive nerves, every system in the body being off its norm in one direction or another. It's feeling feverish constantly when a fever does not register in the doctor's office. It's feeling a sore throat constantly, feeling the constant need for antibiotics. My son says "mom, you don't have an antibiotic deficiency"... and right he is. But I do have ME. Muscle weakness, muscle pain, cognitive impairment that may or may not be obvious. One day is different than another or similar, one moment is different or similar. You can never tell ahead of time or even in the moment. The question "how are you?" was a nightmare at my worst times. I was about to say I have a headache knowing that by the time I said it it would have moved on and I would be dealing with a shooting pain somewhere in my body. The body seems to be shouting 'help me!' but only I can hear it and I don't even know what to do.
Even these words are so few in comparison with the utter helplessness and impact of this disease!!! The fact that it has been minimized and held in contempt is appalling. We live with that too, on top of everything else. I did get halfway better along the way, and yet I still live with the disease, with the nightmare.