Fibromyalgia

Update on me, and on my spoonie post

The update on me and the Stanford trip

A few days ago, my husband Greg and I (that photos is us on a commuter train station bench somewhere in San Jose) went down to Palo Alto, California (a flight from Seattle that took about an hour and a half) for an appointment with a doctor at Stanford’s Infectious Disease Clinic, where they’re currently studying chronic fatigue syndrome. I was diagnosed with Fibromyalgia in 2012. This summer marks ten years of living with symptoms, and five years of living with a diagnosis. I’ve never questioned my diagnosis, but I know that CFS and Fibro are often either mistaken for each other or interlinked (a lot of people seem to have dual diagnosis).

Still, I was surprised to learn that my Stanford doctor believes I’ve been misdiagnosed. I have CFS, not Fibro. The appointment was very thorough, and Greg and I don’t have any doubts about his summary. We got home from our trip last night, and today I spent the day teaching and learning yoga at my yoga teacher training program. I haven’t fully processed the CFS diagnosis, but I have feelings. Lots of feelings. I’m frightened by it, I’ll admit. My doc’s descriptions of mitochondrial dysfunction and his urging that I stop over-exerting myself in any way or risk hurting myself, was scary to hear. Will I be able to teach yoga after I graduate? Will I ever feel strong and healthy again?

Stanford is researching CFS, which is good, and they have a treatment they’re working on, that I get to try: targeted anti-virals. Long story, don’t ask me to explain it all right now, I’m super tired. But, I have a friend who went through this protocol and is feeling so much better. And my Stanford doc says that while some people experience no change from the anti-virals, others have very noticeable improvement, and some even eventually go off them after a year or so because their symptoms are entirely gone. I’ll begin the drug(s) in a couple of weeks. Yeah, I have a lot of feelings. SO MANY FEELINGS.

The update on the recent spoonie post

Over the years, my most enduring personal goal has been, “write something”. Usually, it’s this rosy little dream of standing in Powell’s and seeing my book on a shelf, and having someone else walk up next to me, reach for it, and I say sheepishly, “You know, I wrote that.” And they say, “Really? I love this book!” And then we talk for two hours and maybe get coffee, and become Facebook friends. Every few months, we meet up and get brunch, and talk about our lives.

My dreams, they are so big.

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Fibromyalgia

If you don’t have a chronic illness, don’t talk about your spoons

EDIT May 18th, 2017: Several people have written to ask if they “count” as a spoonie because they have a mental illness like anxiety or depression. Yes, yes! It’s right now 6am in Seattle, and I’m about to leave on a trip with my husband to California to visit the Stanford Infectious Disease Clinic, where Jose Montoya is doing research into what causes Chronic Fatigue Syndrome. I’m going to be a new patient, and see if they have any treatments that might help me. I’ll be back on Saturday, and I want to write more about this, but in the meantime, I want to apologize for failing to clarify what I mean by “chronic illness”. ANY chronic condition that causes fatigue, is a chronic illness. I’ve lived with panic disorder for over a decade, I’m painfully aware of the fatigue that it can cause. Depression, cancer, anything that is chronic and causes fatigue, is what I mean when I say “chronic illness”. In my case, the people using “spoonie” around me in a way that made me feel invisible are normal, healthy, without any chronic issues other than the usual aches and pains of being human. They have no illnesses, physical or otherwise. That was the group I was referring to in talking about my frustration about their co-opting of “spoons” when they just mean “low energy”. 

 

The terms “spoon” and “spoonie” have shot into popularity among people living with chronic illness, as ways to describe their experience and themselves. Talking about “spoons” is a reference to energy levels. It comes from a personal story that Christine Miserandino shared on the internet around a decade ago, where she compared the daily allotment of energy that her illness allowed her, to a handful of spoons. Sitting in a cafe that day, her purpose was to explain to a friend what it was like living with a chronic illness, and holding out a handful of spoons was her spontaneous idea to illustrate how much energy her healthy friend woke up with every day. She began pulling spoons out of her friend’s hand to demonstrate what we all know, how normal activities of daily life will lower energy and make the average person progressively more tired.

Then she started the process over from her perspective. She took most of those spoons away and showed her friend what was left. This was her way of saying, “And here’s how much energy I wake up with.”

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Flicka 20

Outboard update, staying in the old slip, rowing my dinghy

Greg and I went down to the marina last weekend, to see what we could see. Our plan was to spin Elska around in her slip, bring her engine close to the dock, and remove the carburetor for a good cleaning. Seemed easy enough.

Years ago, probably 1996 or so, I bought my second dilapidated VW bus – my 4th Volkswagon in total (and my last). Sitting one afternoon in a Volkswagon IRC chatroom (ANYONE REMEMBER IRC?), a few of the guys inspired me to try doing a tune-up by myself. I was in the same position I am with my boat, unable to get the damn thing out of the driveway. I went to a local auto parts store and bought oil and spark plugs and a bunch of tools and other random stuff I don’t remember, and a few days later I got back in that chatroom, announced my intentions, and went to work. I alternated going out to the bus, and back in the house to my adorable orange iMac to tell them what I was doing and how it was going. They led me through an oil change and a tune-up, it was brilliant. And it worked. I drove her out of the driveway that afternoon, triumphant. I figured if I could pull that off, this little outboard wasn’t going to stymy me.

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Sailing

Engine update, and the utter enticement of the Race to Alaska, and….a snail.

Last night I went to a meeting of the Puget Sound Cruising Club, a group I’ve known about for a couple of years but just never got the chance to connect with. I happened to check their event schedule a couple weeks ago, and lo and behold: they were doing a talk on the Race to Alaska. A few days ago I posted a link to the R2AK on Facebook with a message that went something like, “Who’s crazy enough to do this with me?” I deleted it seven minutes later (there were no replies). I didn’t want to hear how crazy it was, nor did I want to project onto everyone my fear that any person in their right mind who knows me and knows the state of my health would laugh out loud at such a thought. This race to Alaska involves piloting an engineless craft, all the way from Port Townsend, Washington to Ketchikan, Alaska. People go in multihulls, monohulls, kayaks, rowboats, even tiny paddleboards. It’s  750 grueling miles through freezing, moody, and treacherous water, and you have to run the whole thing entirely by sailing, or pedaling (yes, pedaling), or rowing, or paddling, or some combination of these.

Check out this video. And yeah, that’s the gorgeous sound of a Maori Haka dance, and yep, they got permission to use it.

Me? Mostly sedentary, with chronic fatigue and fibromyalgia, around eighty pounds overweight, can’t walk a block without giving my lungs a pep talk. Yes, I’m in a yoga teacher training program, but that’s mostly so I can learn for myself. It’s impossible right now for me to teach an entire 90-minute class, even if I wasn’t doing all the poses myself. And then beyond that, even assuming I was healthy enough, I haven’t sailed enough. I’ve never anchored my boat, I’ve never gotten caught in a storm, I’ve only ever camped overnight on board twice. I’ve never been tested. The whole idea is irrational and foolish, and even dangerous.

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Sailing

Outboard engine progress, part 2. (Thanks, Elaine!) Also, engines aren’t so bad.

This is a follow-up to this post about my outboard not working right.

You know, I was a little too hard on my engine. Literally and figuratively. First I didn’t take good care of it, and then I used its inevitable malfunction as a demonstration of its insolence and made it an illustration of why engines are bad on general principle. Or, as I believe I put it, sucked. Okay now, I maintain that we need to reduce our reliance on fossil fuels and any steps I can take toward a Torqueedo are good ones, but my Honda outboard is not a bad person. It’s doing the best it can. And apparently, it was doing the best it could with old, crappy gasoline. My bad!

In the last post, in the comments, my friend Elaine said, “How old is the gas in there? If it’s been sitting for more than six months, the engine will be cranky.” This never occurred to me! Mostly because I asked someone (who shall remain nameless), whether old gas is a big deal. They said, “Nahhhhhh.” Turns out, it’s a very big deal. Elaine was right, thank you Elaine! If she hadn’t said that, then when I was calling shops this morning, I wouldn’t have thought to mention it, and so wouldn’t have heard them tell me how obviously it’s the ancient gas causing the problem.

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