Author Archives: Jocelyn

Black Dress Day 2014

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

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The Body and My Body

If asked to guess what holiday is hardest for me, I don’t think Independence Day would top most people’s lists – but it is. Maybe when I say that, though, it comes into focus – really, you couldn’t design a … Continue reading

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On One Decade In

Note: This entry is pretty much one big whine. When you’ve been sick for ten years, you get a coupon in the mail that entitles you to one 1800-word whine. I usually try to be at least somewhat upbeat and hopeful on … Continue reading

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My Gallery of Dead Possessions

Inspired by Patrick’s post about items he can no longer use because of ME/CFS, for our awareness day, I thought I’d share my own little list. Chimp helped me out enormously by taking most of the photos you’ll see here. … Continue reading

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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

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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

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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

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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

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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

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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

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