Category Archives: ME/CFS

To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

Posted on November 30, 2011 by Jocelyn

I hit a nerve with my “Nothing” post about what I did (and mostly what I didn’t do) after I was diagnosed. And many of the reactions I heard from others touched on the number one, most important, know-this-if-nothing-else piece … Continue reading →

Posted in ME/CFS | Tagged , , , , | 83 Comments

Nothing

Posted on November 12, 2011 by Jocelyn

For every ailment under the sun There is a remedy, or there is none; If there be one, try to find it; If there be none, never mind it. -Mother Goose Rhyme What do you do when you’re diagnosed with … Continue reading →

Posted in ME/CFS | 52 Comments

A Rant About the Illness Narrative

Posted on October 13, 2011 by Jocelyn

Over the past seven years, I have had various people tell me, here and there, that they find me “brave” or “inspirational.” And it seems like the sicker I’ve gotten, the more I’ve heard it. I don’t want to sound … Continue reading →

Posted in Chimp, ME/CFS | Tagged , , , , , | 44 Comments

Further Adventures in IRIS

Posted on September 22, 2011 by Jocelyn

My first entry on this subject, “Everybody Gets Through IRIS,” is here, and a third, “The End of IRIS,” is here. My immune system is still freaking out for fun and profit. Yes, it’s true, we’ve reached the six-week mark … Continue reading →

Posted in ME/CFS | Tagged , , | 18 Comments

The Lightning Bug and The Lightning

Posted on August 31, 2011 by Jocelyn

“The difference between the almost right word & the right word is really a large matter–it’s the difference between the lightning bug and the lightning.” -Mark Twain A while back, I came across the ad at right via the Vintage … Continue reading →

Posted in ME/CFS | 19 Comments

“Everybody Gets Through IRIS.”

Posted on August 18, 2011 by Jocelyn

There’s a second entry on this topic, “Further Adventures in IRIS,” here, and a third, “The End of IRIS,” here. That’s what Dr. Cheney told me at my appointment in April. IRIS, approximately, is what happens when your immune system … Continue reading →

Posted in ME/CFS | Tagged , , , | 16 Comments

Managing the Quotidian

Posted on August 8, 2011 by Jocelyn

A few people have asked me what I do all day. What I do, of course, is tightly limited by my small store of energy. “Bedridden” describes me pretty well in general, but I do shift between bedroom and dayroom, … Continue reading →

Posted in ME/CFS | Tagged | 12 Comments

Thin Thighs in 35 Years

Posted on July 1, 2011 by Jocelyn

I always wanted to have great legs. The picture at right is of my mom (center), her sisters, and me, in 1993. As you can see, my mom has great legs. Her three sisters have great legs. Their older brother … Continue reading →

Posted in ME/CFS | Tagged , , , , , | 29 Comments

My Weapons-Grade Insomnia, Part II

Posted on June 22, 2011 by Jocelyn

So…where were we? Ah, yes. Before the editorial expression of concern and the Chase debacle, we were talking about sleep. For years and years now, I’ve been progressively increasing the number and amount of drugs I take for sleep. Frankly, … Continue reading →

Posted in ME/CFS | Tagged , , | 33 Comments

I’m Concerned About the Editorial Expression of Concern

Posted on June 10, 2011 by Jocelyn

A serious hat tip here to Danny Ze-Dog, whose scientific savvy was enormously helpful in putting this entry together. So since the triumph that was the October 2009 announcement of Lombardi, et al., which found XMRV in people with ME/CFS, … Continue reading →

Posted in ME/CFS | Tagged , , , , , , , | 2 Comments