13 October, 2009

It's funny what will bring me to tears.

People who are interested in "Chronic Fatigue Syndrome" (or, in the UK, Myalgic Encephalitis) and Fibromyalgia might be aware of the article published last week in Science, reporting findings that a large percentage of people with CFS were infected with a retrovirus (67% in the initial sample, compared to about 3% of healthy controls. Later research showed closer to 95% of people with CFS/ME had the virus or antibodies to it.)

I've had this information rattling around in my brain ever since. It's a vindication--all of these years I've insisted to doctors that yes, this is a real, physical, biological illness, that no, the antidepressants aren't making it go away. I hope that the test becomes widely available, and that I can take it. And then I will at least take it to my current doctor and insist that she accept that the fibromyalgia I'm asking for help with is a real disorder.

At the same time, the news is worrisome. W and I practice safer sex, in the sense that we know our sexual histories, know we didn't have any STDs, and don't have sex with anyone but each other. It's not that we engage in any especially risky behaviors, but DAMN. If I'd thought I had a retrovirus, something that could be passed on to a partner by contact with bodily fluids, I would have been a damn sight more careful. So there's that. I'm worried that I've passed this on to someone I love. I'm terrified of what it would mean for us, if she comes down with it, since right now, her ability to work full time is how we have a roof over our heads. (Yes, I do get SSI. But two times $460 a month doesn't even cover our rent.)

And there's the worry about having kids. See, when I wasn't sure whether or not it was communicable, I might have made choices like not donating blood (just in case, because the last thing someone getting a blood transfusion needs is this!). But I was still willing to risk giving birth. Because who knows, maybe it *is* triggered in part by child abuse, and that's preventable. But if it's a virus, it's a whole 'nother thing. I'm not completely ruling out having my own biological kids, but it's one more concern.

Then there's the hope, which I am more fighting against than embracing. I just don't have the energy to be disappointed, so I'm not telling myself "if they can find the cause, then they can find the cure!" Instead, I'm remembering that they discovered HIV in the early '80s, and there is still neither a cure nor a vaccine for AIDS.

So, with all of that as background, I come to the point of my post. I was reading an article about the virus in the New York Times. It's not that the article had any new information--I've been reading and re-reading the articles all weekend. But in a discussion over the controversy around whether CFS/ME is biological or psychological, they had this quotation in defense of a biological origin:
“There is a group who are young, healthy, active and engaged, and all of a sudden they are laid low by something,” Dr. Schaffner said. “Everyone tells the physicians these are people who are functional and productive, and this is totally out of character. They are frustrated and often quite disheartened. You feel that medical science hasn’t caught up with their illness yet.”
As I read it, it was like being smacked. All of a sudden, for maybe 3 seconds, I could remember. I could remember how my body felt twelve, thirteen, fifteen, twenty years ago. I could remember that strength, the activity. I could remember deciding to bike 5 miles out of my way, on a whim, because I felt like it. I could remember volunteering, and building fences, and hiking. I could remember standing up on a moving bus, without clinging to a pole in the hope of not falling down. I could remember going out dancing, spending time with friends, just doing things because they are fun, without worrying that the fun I have today will lead to intense pain and fatigue tomorrow.

Just for a few seconds, I remembered who I used to be. I could only handle it for a few seconds. One of the basic realities of my life is that some things are just too much to handle, and I can either live the life I have, or I can spend time thinking about the one I used to have.

But for those few seconds, I realized once again that this is not a disorder caused by a desire to be sick. I really liked my life a whole lot better when I was well. I haven't gained anything that comes close to making up for what has been lost.

08 October, 2009


i'm trying to quit smoking. well, it started out as me trying to quit smoking and quickly giving up on it, and then w stepping in. in the long run, it's a good thing, since i know i'm not gonna manage on my own. but in the meanwhile, she says that i'll be getting 50 with the bath brush for every cigarette i bum from someone else, and 50 with the *cane* for every cigarette that i pay for. (yes folks, that means if i bought and smoked a pack, i'd be getting 1000 with the cane.)

part of me thinks she can't possibly be serious. but knowing how much she hates smoking, and knowing that she's gotten better at follow through, i'm nervous.

so i decided to try downloading a quit smoking hypnosis thing. i've heard for years that people with DID are really good at self-hypnosis, but i hadn't thought i'd ever done it. but as i listened to the tape, getting really irritated with the guy, and it finally got to the quit smoking part (as opposed to the annoying beach thing, where i could only imagine being aggravated by glare and sand and bugs, instead of feeling relaxed!)

anyhow, it got to the quit smoking part, and i realized that hypnosis is basically repeating something over and over until your subconscious believes it and acts on it. and i was like, "that?! that's all self-hypnosis is?? well, i do *that* all the time!!"

it's how i make sure i wake up on time, if i haven't gotten to bed as early as i should and i need to be up. i just repeat over and over "wake up well-rested in 5 hours" (or however many hours). and while it doesn't substitute for actually getting enough sleep, i really do wake up fairly well rested right at the time i tell myself to.

so i guess i should try something like that, and something to cope with the many stressful situations that i now cope with by smoking. but dang, it would be easier to just keep smoking.