I'm not sure where to start, so I'll go back to where this thing may have started.
It was a virus that lasted two weeks but felt infinite. The basic symptoms subsided (digestive issues, stuffy nose, coughing, chest congestion). But I couldn't shake the feeling that my weight had changed...each of my limbs felt like they weighed a ton. I never felt fully rested. Then it began to get worse. I began to fall asleep at the wheel on the way TO work. I drive 45 minutes each way to get to my job.
This is a job with wonderful benefits and pay I'm lucky to have. I can't afford to lose it. One morning, I regained consciousness, and I was still at the wheel, no idea where I was. I did manage to get back home, reached my driveway, and my husband found me unconscious in the car.
I began seeing my doctor, and the circus of test began.
Dozens of different blood tests, MRI, EEG, sleep study; the works. Two minute indications of mini-strokes and MS, but hardly worth mentioning. Another MRI in 6 months will rule that out.
These tests went on for a month. I waited to hear my doctor say the words before telling my family. I'm not sure if he means to, but I feel that my husband sometimes wants me to "buck up", or "get moving, you'll feel better". I can't tell him often enough that this makes it sooo much worse.
Some days are fabulous, which means I stay awake the entire day. These are rare. Most days, I pass out at least once for about 2 hours. My body says, "lay down or I'll MAKE you lay down". If I force it, my world goes fuzzy, I get dizzy, and my limbs become like heavy jelly.
I need my husband to read Linda's story, she put into words how I feel better than I seem to be able to.
Thank you Linda, for the first time I feel that I'm not alone; and that I'm not a lazy freak.
Here's hoping for better understanding of this condition, and for better days for all of us.
Added: 14th July 2008