Today the elephant in the room is fatigue. It seems that everyone is tired. Between work, family and personal stresses, we all complain about being tired. Life is chaotic and I think most would agree they don’t get enough sleep. But what does being tired mean when you have Chronic Fatigue Syndrome? What does it look like? Is it like the average healthy person’s tired feeling when they’ve worked too long or been under too much pressure?
In my previous post Symptom Streaks Sinister Significance, I referred to the symptoms outlined below and focused on short-term memory or concentration issues.
Chronic Fatigue Syndrome has a variety of debilitating symptoms outlined on the FM-CFS Canada website (italics added by me), describing it as a
“pathological exhaustion not reversed by rest, no matter how much one has. This situation results in a substantial reduction of previous levels of activity. In order to be clinically diagnosed with CFS, an individual must meet both of the following criteria:
- clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset, is not the result of ongoing exertion, is not substantially alleviated by rest and results in substantial reduction of previous levels of occupational, educational, social or personal activities” (continued in previous post)
According to dictionary.com, tired is an adjective that means a person is “ (n.d.). Dictionary.com Unabridged. Retrieved October 04, 2015, from Dictionary.com website: http://dictionary.reference.com/browse/tired
The main difference from this definition from a CFS patient, is the key phrase “as by exertion”. WebMD, refers to CFS as “a condition that makes you feel so tired that you can’t do all of your normal, daily activities”. At the onset and during relapses, I argue that most days you can’t do any, never mind, all your normal activities. I remember, a few years into the disease when I was sleeping less (approximately 14 – 16 hours a day), the process to get ready to leave the house. Back then, this was how I prepared for an evening out.
- 9 am or 10 am wake up with a plan to go out in the evening for a couple hours.
- 10 am – 10:30 am Breakfast.
- 10:30 am – 12:30 pm Rest for a couple hours (light dozing or simply sitting).
- 12:30 pm – 1 pm lunch.
- 1 pm – 3 pm Repeat resting as above for a couple hours.
- 3 pm – 3:15 pm Shower.
- 3:15 pm – 3:45 pm Sit on bed for about 30 minutes to recover from the shower.
- 3:45 – 3: 50/3:55 Blow dry hair for 5 – 10 minutes (sitting).
- 3:55 – 5 pm Sit on bed recovering. Likely have a sleep.
- 5 pm – 6 pm Dinner with family.
- 6 pm – 6:30 pm Sitting, resting.
- 6:30 – 6:45 pm Makeup and put on clothes to go out.
- 6:45 – 7:15 pm Rest quietly.
- 7:15 pm – 9:15 pm Venture out of the house.
- 9:30 pm Bedtime, exhausted.
The only way I could conceive of getting out of the house, was to phase out my getting ready. Today I get up sometime between 5 and 6 am, shower, dress, etc., complete the entire process in less than an hour. I’ve come a long way from those early days. I know many people are still struggling and living as best they can.
This fatigue can be so overwhelming to our bodies, our psyche, our families. How do you budget your energy? How do you manage the bad days/weeks/months when you still want to have contact with the outside world?