I think part of the problem of how CFS is perceived by people is in its name.
The name "chronic fatigue syndrome" is misleading. It makes it sound as if fatigue is the only symptom, and that couldn't be further from the truth.
Here's a list of symptoms, taken from a fact sheet made by the ME/CFS Association of Victoria:
· Persistent or recurring, unexplained mental and physical fatigue that substantially reduces normal activity levels.
· Post-exertional malaise. Following physical and mental exertion there is a worsening of symptoms that may be delayed 24 hours or more and recovery after activity is slow.
· Dysfunctional sleep. Unrefreshing sleep, inability to fall asleep, excessive sleep, frequent awakenings, restless legs, abnormal sleep rhythms.
· Pain. Burning, aching and shooting pain in muscles and/or joints, headaches of a new type and severity, widespread tenderness.
· Cognitive problems, e.g. brain "fog"; problems with processing and recalling information; difficulty with finding the right word, reading, writing, mathematics and short-term memory; losing track of things; forgetting names; disorientation; inability to concentrate on more than one thing; trouble with decision-making.
· Light-headedness on standing
· Shortness of breath with exertion
· Extreme pallor
· Disturbance of balance and clumsiness
· Muscle twitching
· Sensitivity to light, touch and sound
· Gastrointestinal and urinary problems
· Sore throat
· Tender lymph nodes
· New sensitivities to foods, medications and/or chemicals
· Intolerance to temperature changes
· Cold extremities
· Marked weight change-anorexia or abnormal weight gain
· A worsening of symptoms with stressors, e.g. new infection, travel, anesthetic.
I know. To some of you, that might look like a list of small woes a hypochondriac might have. But together, all those things really do have a profound effect.
And I'm really not making it up. I don't know why anyone would!
I think I'm doing a lot better with reading and writing than most people with CFS. But I'm a student of editing and publishing, so reading and writing is my life. Also, I've been working on my reading and writing in particular for months. It's helped so much in keeping me sane.
At the end of the day, it's up to you whether you believe me or not, but either way, those symptoms are a reality for CFS sufferers.
PS This post is titled "The Black Mamba of chronic conditions" because most people think Black Mambas are black, because of the name. Yes, you got it; they're not black. They're called Black Mambas because the inside of their mouths is black!