Tag Archives: Chimp

Black Dress Day 2014

Posted on August 8, 2014 by Jocelyn

How to accomplish a Black Dress* Day photo for severe ME if you have severe ME yourself and are 98% bedridden (may not be possible for all such folks): Use a morning’s energy to try on three dresses. Pick one … Continue reading →

Posted in ME/CFS | Tagged , , , , , , , , | 28 Comments

The Lace of Life

Posted on March 31, 2014 by Jocelyn

I was thinking, while we were in Asheville, about Dresden lace figurines. They’re porcelain figurines decorated with very realistic-looking lace, which is created by dipping cotton lace in porcelain and applying it to the figurine. The cloth burns off in … Continue reading →

Posted in ME/CFS | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 17 Comments

Hindsight

Posted on February 28, 2014 by Jocelyn

Living with a disease of unknown etiology is, let’s say, problematic. The lack of a well-defined cause stymies efforts toward a cure, and opens up a gaping void that gets filled, at best, with wide-ranging science, but more prosaically with … Continue reading →

Posted in Life Before, ME/CFS | Tagged , , , , , , , , , , , , , , , , , | 15 Comments

Good Days and Bad Days with ME/CFS

Posted on January 31, 2014 by Jocelyn

Inspired by Change4ME Au’s Good Day/Bad Day series, I thought I would take good day/bad day shots of my own. So here is a little look at each, although as with almost everything in ME/CFS, it’s more complicated than it … Continue reading →

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

Prandial Problems

Posted on November 5, 2013 by Jocelyn

I hated my mother’s bunny jello mold. She bought it before my brother or I were born, thinking that when she had kids, it would be fun to make them bunny-shaped jello. And it probably would have been, for most … Continue reading →

Posted in Life Before, ME/CFS, Uncategorized | Tagged , , , , , , , , , , , , , , , | 33 Comments

My Worst Year: Theda and Thomas and Me

Posted on September 29, 2013 by Jocelyn

Trigger warning for discussion of suicide. This summer, two well-known ME patients, Theda Myint and Thomas Hennessey, took their lives. I didn’t know either of them personally. Theda was well-known through her “Help Theda” facebook page, and was a very … Continue reading →

Posted in ME/CFS | Tagged , , , , , , , , , , , , , , | 65 Comments

Inch by Inch

Posted on August 31, 2013 by Jocelyn

Even though my vocation for more than a dozen years was food, I’m a relative latecomer to vegetable gardening. It wasn’t something my parents did – I remember tomatoes a couple times, I think, and an excellent accidental watermelon one … Continue reading →

Posted in ME/CFS | Tagged , , , , , , | 21 Comments

How to Clean a Bathroom (with Severe ME/CFS)

Posted on July 20, 2013 by Jocelyn

Let’s say you have severe ME/CFS, and you’re married to someone who has a full time job, is your sole caretaker, and because of the severity of your illness, is also chief cook, bottle washer, launderer, yard maintenance guy, and … Continue reading →

Posted in House & Home, ME/CFS | Tagged , , , , | 29 Comments

Losing My Voice

Posted on March 28, 2013 by Jocelyn

A conversation at our house recently: “So when you think of things that the illness has cost me, things that were a big part of my identity, things that I loved to do, what’s the first thing that comes to … Continue reading →

Posted in Life Before, ME/CFS | Tagged , , , , , , , , | 22 Comments

Brain No Go So Good

Posted on February 24, 2013 by Jocelyn

“I’m writing an entry about my cognitive dysfunction, and I thought I’d ask you about whether there’s anything about it you notice. Wait, I asked you this last week, didn’t I?” “Yes. And I suppose that’s an anecdote in itself.” … Continue reading →

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