This post is going to be scattered, just like my brain today. We've had a mild bug for several days now, and any illness for me, no matter how mild, seems to cause the neurological aspects of my chronic illness to flare up. This post about "brain fog" from the site ButYouDon'tLookSick really sums up my day, sort of like a demented game of pinball where I wander from thing to thing while accomplishing nothing, because I can't remember why I wandered in that direction in the first place. This post, which discusses a recently published study regarding the fatigue in Fibromyalgia (the same fatigue that I have), has a great description of this debilitating symptom which the author describes so well:
"I've described the fatigue of FM as feeling like someone has pulled my plug. It's as if my source of power and energy has been cut off. Another analogy might be made to power steering in a car. Have you ever tried to steer a car when the power steering wasn't working? It takes every bit of strength you can muster just to turn the steering wheel a couple of inches. When I am having a flare and the fatigue is at its worst, it takes every bit of energy I can muster just to do the simplest task, like take a shower or make a sandwich."
Not sure if it's coincidence or the fact that I've been sitting in front of the computer more thee last few days as I am too scattered to do much else, but at the same time that I am experiencing a disconcerting increase in my symptoms, I've been reading much more about the illness that I have- ME/CFIDS. For those who don't know, that stands for Myalgic Encephalomyelitis/Chronic Fatigue Immune Deficiency Syndrome. People with the illness tend to hate the term "Chronic Fatigue Syndrome" for many reasons, but mostly because (as one site says) "the tiredness we have is to fatigue what a nuclear bomb is to a match".
Ironically for me, ME/CFIDS is about as political as autism is. The CDC has been nothing but a roadblock in getting the illness researched or taken seriously. It has seemed to me from the beginning that these two groups- the CFS world and the autism world- have so much in common, they are like twins separated at birth that have grown up now knowing of each other, yet who have led parallel lives. I came across this fantastic post on Osler's Web today in which the two worlds have collided, and it seems that the "warrior" mentality of many autism parents may be inspiring a new activism among the CFS world. This post is also a wonderful dressing-down of "quackery exposing" journalism focused on that nemesis of truth in the autism world, Trine Tsouderos of the Chicago Baboon.. I mean.. Tribune.
Why exactly does this matter? Well, for starters, lots and lots of people have been very very sick for a long long time. Many have died. Some of us are less sick, but this still has a major impact on how we can live our lives day in and day out. With the poor quality of journalism mentioned above, and the CDC digging in it's heals and impeding progress, it can be hard to get information necessary to know what to think of this illness or how to get better. Several days ago, I came across a list on one of the big CFS sites of how people diagnosed with ME/CFS have died. This is in direct response to a claim from the CDC that no one dies of CFS. It was sobering. Not only that so many people have died of complications of the disease (usually lymphoma, heart problems, or brain tumors), but also that so many have committed suicide to escape the disease. Mainstream journalists love to say that the "anti-vaccine" movement (read "safe vaccine movement") has blood on it's hands from any person who dies of a supposedly vaccine-preventable disease, yet they themselves have spread misinformation and obstructed progress in understanding this illness and bringing hope to so many people who suffer, and yes die, of this illness.
I'm sick of the double standard-literally.
