Books

Reading about “sensory storms” today

The book at right is very good so far. I bought it curled up in bed that second night in Palo Alto, after my Stanford doc told me that I had Chronic Fatigue Syndrome, not Fibromyalgia. We went back to our lodgings to rest (I’d walked 12k steps that day, a huge mistake I would pay for later), and I figured I ought to download a book and start reading about this new thing-that-isn’t-Fibro.

It’s well-written, chock full of research and studies, but it doesn’t bog you down. Topics are tightly organized and it’s easy to find what you’re looking for (the editors obviously recognize that their audience could be suffering from brain fog and general fatigue).

Today I choked on my granola when I read this description of a “sensory storm”:

Dr. Luis Leon-Sotomayor, the cardiologist who documented the 1965 CFS/ME epidemic in Galveston, Texas, described a type of neurological dysfunction that he called a “sensory storm.” These storms affect the autonomic nervous system, which is regulated by the hypothalamus.

A person experiencing a storm may first see an aura, or sense that something very bad is about to happen. Sensory storms produce sweating, pallor or flushing, elevated blood pressure, slowed respiratory rate, tachycardia, dizziness, and the feeling that one is about to lose consciousness. These storms are terrifying, but the effects generally pass within an hour. After such an experience, a person may feel lingering tiredness or malaise.

I’ve been having these for years. Exactly as described. They are really scary. Mine have gone on for closer to two hours, rarely edging into three. When I try to explain to them to ER doctors, they say it’s just a weird sort of panic attack and just call the nurse to stick more Ativan in my IV line. It was shocking to read this and to suddenly have a name for what I experience as “those other attacks” or “those shaky episodes”. People have actually studied this! This experience is actually visible to someone as a real thing that is happening. So much of what I experience in my body is invisible, everyone just says it’s from being tired, or it’s some panic attack variation.

Knowing that what I have is actually Chronic Fatigue Syndrome is helping me a lot to make sense of the last decade.

chronic fatigue syndrome

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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chronic fatigue syndrome

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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