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I’ve mentioned it a couple of times over the past couple of months, but I’ve tried hard to not make it much of an issue. I suffer from CFS or Chronic Fatigue Syndrome.
I bring this up because of a Yahoo news article that came across my laptop this weekend. The article says in part:
Chronic fatigue syndrome, once thought by some doctors to be a psychological problem or even a excuse for malingerers, is a real disease that affects more than a million Americans, the U.S. Centers for Disease Control and Prevention said on Friday. [...]
Up to 80 percent of people with chronic fatigue do not know they have it, the CDC said. Its causes are unknown but it can cause profound exhaustion, sleep difficulties, and problems concentrating and remembering.*
Flu-like symptoms, including pain in the joints and muscles, tender lymph nodes, sore throat and headaches are also common. “A distinctive characteristic of the illness is a worsening of symptoms following physical or mental exertion,” the CDC said in a statement.
I was diagnosed with CFS seven years ago, and I can assure you that at the time the condition was viewed by most people, even those within the medical community, as a “mental condition” or the “disease of the hypochondriac.” Mostly because this diagnosis is one of exclusion… meaning that you aren’t labeled as having CFS until you have proven to not have anything else.
The diagnosis came after having nearly every conceivable test done. I had multiple blood tests, cat scans, even a spinal tap after spending nearly two full weeks unable to get out of bed. My tonsils were swollen to the point that in order to eat anything larger than a pea, I had to physically push the food past them with my finger. I was completely exhausted all the time, despite not doing much more than moving from my bed to the toilet, to my desk, to the bed again. Despite the time in bed, I was suffering from maddening insomnia.
I don’t know how long before the diagnosis I had been suffering, but I know that my doctors would test me for Mononucleosis at least twice a year, since high school. I never tested positive for Mono, and the symptoms would clear on their own, usually within a month, and I would forget about it until the next onset would knock me on my ass.
With the help of the internet, I learned some tricks to help manage the symptoms, mostly I dabble in yoga** and learned some biofeedback techniques to help manage stress. I have learned to accept my physical limitations, in that I can’t dance for hours at clubs, I can’t spend forever at the gym trying to lose this weight that I will never lose. I have changed my eating habits to avoid as many headache-inducing chemicals like Monosodium Glutamate, and tannic acids like those in red wines, as I can.
I have been on several anti-depressants over the years, Prozac, Well-butrin, Elavil, none of which relieved my symptoms, and instead added the side effect complications that made life dull and non-sexual. The only prescription that I can say helped alleviate any of my symptoms was Ambien. If I couldn’t have any energy, I could at least sleep.
The past couple of years I have been working way too hard, I could feel my stress level getting out of control, as you may know, being (for all intents and purposes) self-employed doesn’t allow for much down time. Even when I am not physically on site, my brain is constantly on work related tasks. This took it’s toll, until finally this past August, the CFS Monster reared its ugly head and bit me on the ass.
I have no insurance, and really can not afford the prescriptions that my doctor wanted to give me. So I’m left to rest and wait out this particular run.
I am still recovering. I spent the three weeks before UMB and I left for the midwest the first time in bed, and near comatose on the couch. UMB would work for me at the Chabot Space and Science Center cafe which we are contracted to operate. I would stay at home, not eating because of nausea and diarrhea, and getting winded walking the 15 feet from the living room to the bathroom.
Most of my friends are probably only peripherally aware that I have been sick. I try very hard to hide the illness when possible. I still make it to band rehearsal, but require at least a day or two to recover from it. We took our first trip to the midwest where I spent most of the time sitting in a car, or resting out at my parent’s farm.
We went out a couple of nights with Toby, but again, that usually entailed my staying seated and drinking*** while everyone else danced.
I can feel my strength beginning to return, albeit slowly. I’ve taken a very hands-off position with the cafe, which now leaves my career (if you can call the cafe a career) in question**** and causes stress that does nothing to help my recovery.
So when I saw this news article, I became quite excited that perhaps finally there is some hope for some research, and if nothing else a bit of understanding from the medical community and family and friends who may still harbor the idea that CFS is nothing more than a lame excuse for laziness.
For more information on Chronic Fatigue Syndrome, see the new Centers for Disease Control Website (just published this past week).
* This is perhaps the most frustrating symptom. I can deal with the dizziness, the headaches and nausea… but I used to pride myself on my near-photographic memory. Now I often have a hard time coming up with the right word when speaking to people, and my short term memory is shot.
** Dabble: meaning I don’t let anyone see me do this. Not even UMB. Trust me, you don’t want to walk in on me holding the Downward Facing Dog.
*** Yes I know, I really shouldn’t drink alcohol, as it may worsen symptoms. But come on, I can’t eat MSG, you gotta give me something!
**** A story for another day.
