Monthly Archives: March 2010

Weekend sendoff: Limitations

Posted on March 19, 2010 by Joey| 2 Comments

As of yesterday, my new exercise program has lasted 11 days in a row. So far so good, or at least I’ll have to hope so, because it’s sucking the life out of me. I still enjoy the pleasure of appropriately sore muscles the next day, that knowledge that I’m working what I need to work, and when it’s too nasty hot to walk outside during the day, Paul and I can go for a nice evening stroll. It’s a lovely time in L.A. for blooming flowers, especially jasmine, which has perfumed my entire neighborhood (including my own backyard).

"Downward-facing dog, my ass."

Post-exertional malaise is like a non-sparkly vampire that’s serious about things and doesn’t only want to glare longingly at you. It’s not just about falling asleep for five hours after a 20-minute walk, or feeling like every day is the first day of the flu. It also sucks away my creativity, which is something I take very personally. I’d rather give blood, especially when I’m currently in the middle of several writing projects about which I am seriously excited. My body doesn’t care that I’m excited, though; it’s too busy punishing me for going out in the sunlight. It doesn’t care that I love writing, and that I’m immeasurably frustrated when I can’t get my brain in gear because I did three Wii Fit exercises the day before.

I try to stay positive and I am so, so lucky to have Paul as well as collaborators who are wonderfully patient and understanding about my situation. I am grateful for that every day. Sometimes the physical stuff just overwhelms everything else.

Zen is a pretty good yoga teacher, but I’m sending you off with an even more impressively stretchy, not to mention giant, Burmese.

Post to Twitter Post to Delicious Post to Digg Post to Facebook Post to Reddit Post to StumbleUpon

→ 2 Comments

Posted in CFS, Health, Life

Tagged , , , , , , , , ,

Memories of an assistant pig-keeper

Posted on March 16, 2010 by Joey| Comments Off

This weekend I found out that Lloyd Alexander died almost three years ago. I don’t know how I managed to miss that bit of news when it happened. Belatedly, I’m very sad to learn of his death. Alexander was probably best known for his five-book Chronicles of Prydain, a young-adult fantasy series based on Welsh mythology that follows Taran, an assistant pig-keeper, all the way to the Newbery Medal-winning The High King. But it wasn’t only Alexander’s books that made him special to me.

I read voraciously and without much discrimination as a kid: fiction and nonfiction in every genre, off my own bookshelf as well as my parents’. Many of my favorites from then I still revisit once a year or so, like the Chronicles of Narnia, The Phantom Tollbooth, and A Wrinkle in Time. After the last time I reread the Prydain series, I decided to force my husband to read The Book of Three. I love these wonderful works of “children’s literature” that have continued to enrapture me to this day.

The year I was 13 was probably the most difficult year of my life, for the usual reasons as well as some unusual ones. At the time I was enjoying the Xanth series by Piers Anthony, who always wrote in his author’s notes about how much time he spent responding to fan mail. And yet, for some reason, I was moved to write to Lloyd Alexander and pour out my heart to him. I still don’t know why I chose him, out of all the many authors I venerated.

Every time I wrote to Lloyd Alexander, he wrote back. They were never long letters, just typewritten notes. But they were written by him personally, and they weren’t form letters. He always responded thoughtfully, kindly, and respectfully to my probably ridiculous missives, with gentle optimism and understanding. Those letters meant the world to me at a time when my world was falling apart in some ways. Although they were brief, they displayed his true generosity of spirit, in taking the time to give a little solace to a kid who had wandered into his worlds and loved them more than her own.

I wish now that I had thought to write to him as an adult, and let him know how much our correspondence meant to me. I doubt he would have remembered me; I was probably just one of a zillion faceless fans. But I would like to have told him how very much I appreciated the time he took to connect with me.

The night after I learned about Lloyd Alexander’s death, I dreamed that a faceless someone handed me a brand new copy of Westmark, the first book in another trilogy by him. It was shiny, and had the same cover of the edition I had as a kid. In the dream, I looked down at the book, and then up at the person who gave it to me, and I smiled happily. I will always be grateful for that gift of his books, as well as for the gift of his kind compassion.

Post to Twitter Post to Delicious Post to Digg Post to Facebook Post to Reddit Post to StumbleUpon

Comments Off

Posted in Life

Tagged , , , , , , , , ,

Weekend sendoff: More bad advocacy

Posted on March 12, 2010 by Joey| 3 Comments

No, I’m not going off about the CFIDS Association of America again. This time my sights are set on the ME Association in the U.K. If you click that link, you’ll see a survey — with, as of this writing, sadly equal “Yes” and “No” responses — concerning the coverage of homeopathy by the National Health Service. (I don’t have the power to Pharyngulate a poll, obviously, but maybe with your help we can “nerf” it a little.)

Taken by itself, this poll isn’t too worrying, since this is a hot topic at the moment. But once you learn more about the MEA, as I have thanks to Margaret Nelson, it’s extremely irksome. Margaret wrote a letter in response to an article in the MEA’s publication ME Essential. The part she quotes in her letter is bad enough:

If you are thinking of choosing homeopathy as a complementary form of treatment for ME/CFS/PVFS, it is vital that you find a qualified practitioner who understands the need for a gentle approach when treating ME/CFS/PVFS.

What would constitute a non-gentle homeopathic approach? Waterboarding?

While I don’t have the original article, the very first sentence (as can be seen in Margaret’s link) is telling enough:

Within the scientific and medical press and popular media there is continued debate for and against homeopathy, particularly its continued provision within the NHS.

Equating science with popular media in this “debate” is misleading to say the least. There is no information in this sentence to dissuade the perception that science is just as much perpetuating this debate as popular media. The fact is, of course, that scientific disciplines of all kinds have completely closed the book on homeopathy. There is absolutely no reputable science to support it. Meanwhile, the popular media has no interest whatsoever in promoting reputable science, unless that just happens to intersect with their goal to grab as many eyeballs as possible. (Not, I hope, literally.) For a perfect example, see Time magazine’s decision to go to Jenny McCarthy for their autism report.

I maintain that providing patients with information about how to get tested for XMRV right now is bad advocacy. However, this goes well beyond that. Shame on the MEA for the same kind of wishy-washy attitude towards poor alternative medicine that I’ve reported about on chronic illness “support” forums. A group that’s supposed to advocate for very sick patients should not be entertaining the notion that homeopathy is an acceptable form of treatment. It should be promoting valid medical treatments, and any alternative ones discussed for its members’ edification should not include those that have been roundly proven to be garbage. They could redeem themselves by providing information as to why the NHS should not be paying for homeopathy, once this poll closes…but does anyone want to lay odds on that happening?

Otherwise, I want to thank everyone for the support I’ve gotten on my new exercise plan. Since Monday, I’m four for four. Hopefully I’ll keep it up and have a more impressive number next Friday. For now, I send you off with a hilarious video that demonstrates what a homeopathic emergency room might look like.

Post to Twitter Post to Delicious Post to Digg Post to Facebook Post to Reddit Post to StumbleUpon

→ 3 Comments

Posted in CFS, science

Tagged , , , , , , , , ,