(Originally written on 2015-05-08 as /archives/7136)
Here is an image of Eno L. Camino getting FAWDOT. I am in “good company”, apparently.
Last week I was totally FAWDOT (falling asleep while doing other things). I cannot drive when I get this way:
- I fell asleep while sitting: repeatedly.
- I fell asleep while standing.
- I fell asleep while playing video games.
Gary gets totally FAWDOT here. Yes, I actually fell asleep there. (And yes, I realize that the comic is actually a restroom pun, but I find my humor where I find it.)
I have systemic exertion intolerance disorder/ myalgic encephalomyelitis / chronic fatigue syndrome (pick a name, pick an abbreviation: SEID/ME/CFS).
This is a rebuttal to some myths:
- Please don’t say, “At least you get to sleep.” I am just as tired when I wake up. Do you want to know what I really want to do? I want to be a computer programmer. I did that for 20 years, but I can no longer do that.
- Some people don’t believe that it exists, because they can’t see it. People can’t see headaches either, but they believe in them, because headaches are so common that most of us have had one. “I can’t see it, so it doesn’t exist” is a misuse of Occam’s Razor.
- It is not only fatigue. Imagine having the flu, while being drunk, and staying awake for two days, and you will have an idea of what this is like. Yes, there are good days, and there are bad days, but my good days still require 16 hours of sleep. The bad days require twenty hours.
- It is serious: “CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions.”
- It is not, or not only, caused by mononucleosis. A person with ME/CFS can usually tell you exactly what viral infection preceded their condition. The answer is different for different people.
- It is not depression. A person with ME will tell you what they would be doing (kayaking, photography, riding motorcycles) if they could. People that are depressed don’t have that “positive” (for lack of a better word) outlook. That said: a person can have both.
- It is not only seen in women. 20% of people with ME/CFS are men.
- There is no known cure.
- It is not the “yuppie disease”. “This term was popularized in a November 1990 Newsweek cover story… It reflects a stereotype that CFS mainly affects yuppies, and implies that it is a form of burnout. The phrase is considered offensive by patients and clinicians.“
- It is not a new, made-up, diagnosis. It has also been known as (from here, here, and here.):
- Neurasthenia (as early as 1829)
- Chronic Epstein-Barr virus syndrome
- Chronic mononucleosis
- Low natural killer syndrome
- Atypical poliomyelitis
- Tapanui flu
- Royal Free disease
- Epidemic neuromyasthenia
- Post-viral illness
- Florence Nightingale disease
- Chronic fatigue and immune dysfunction syndrome (CFIDS)
- Neuroendocrineimmune disorder
- Myalgic encephalopathy.
My spouse bought me a t-shirt that says, “Regrettably, all the good paying jobs start before I wake up.”
Republished by Blog Post Promoter