Author Archives: Jocelyn

The Lace of Life

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

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

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 , , , , , , , , , , | 16 Comments

Histamine Sensitivity and ME/CFS: A Plan of Attack

When I realized I was dealing with a histamine intolerance, and started looking around on the web about how to treat it, I felt totally bewildered and overwhelmed. There is an enormous amount of conflicting information, and I felt bad … Continue reading

Posted in ME/CFS | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 11 Comments

Prandial Problems

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 , , , , , , , , , , , , , , , | 32 Comments

My Worst Year: Theda and Thomas and Me

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 , , , , , , , , , , , , , , | 66 Comments

Inch by Inch

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)

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 , , , , | 27 Comments

The Post-Appointment Post, 2013, Part II

Part I is here. Nasal VIP wasn’t the only thing that Dr. Cheney and I talked about this year. I’m sharing this grab bag of questions and answers because I know I always learn from what other patients ask him. … Continue reading

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

The Post-Appointment Post, 2013, Part I

It’s taken me much longer than usual to write this post because I got the idea of transcribing the recording we made of the appointment as a way to help me write. We’ve made a recording every year, but this … Continue reading

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