I’m not getting better, and that has been hard.

In my second-to-last last post, I wrote a little about our trip to Stanford. I really was full of hope, then. Researching this new option, buying a ticket to California to go to a research hospital and talk to a new doctor; I wanted it to demonstrate to the universe that I was serious about getting well. I wanted the universe to notice. In my previous life, the one before I got sick, I seemed to accomplish a lot by sheer force of will. Greg used to joke that I was an “elemental force” (a partial refernce to M:TG cards, for you fellow nerds).

Sometimes I wonder if it was that ability to just stress myself into oblivion, summoning some great inner resource to compensate for all the things we didn’t know at the time – that I had severe anxiety, that I had ADD – that was actually the cause of my body eventually breaking down. I can’t do that anymore, certainly. Greg and I will even joke about it sometimes. “Yeah I thought about taking that trip, but I can’t elemental-force-it anymore.” I don’t know why I got sick. We can’t know. I share that frustration with nearly everyone who has been diagnosed with something hard and damaging and life-changing. We can spend the rest of our lives asking, “Why?” But it won’t get us anywhere.

The first round of antivirals seemed to go well, for awhile. It felt like my pain was less. How much of that was due to the meds and how much to finally going fully gluten-free (a whole other story), we aren’t sure. But, after about ten days, I began to have these dramatic attacks of fatigue, worse than anything I’ve ever experienced. I’d be sitting in my sewing room and suddenly have to get up, stumble through the laundry room and around to our bedroom, and collapse on the bed, because apparently every mitochondria I had unanimously decided that ATP production was a complete waste of time. If I rested for a couple hours, I’d get a little energy back, but the attacks began hitting over and over. I was declining, rapidly.

I went off the medication, and the attacks immediately stopped. I called my doctor at Stanford. He said it sounded like I was overdoing it. He said this happens a lot, people feel better, they start doing more, and then they crash. My “attacks” were just the consequences of me not pacing myself. Not wanting to be an argumentative patient, after all this guy was two states away and I felt very privileged to have gotten to see him at all, I said, “Sure, that’s probably it.” I took another few days off the meds, then tried again. For three days, bam bam bam, attacks all day, weakness, faintness, couldn’t move. I told him what happened. He agreed I should stop that medication. “Take two weeks off,” he said. “We’ll try another one.”

Summer is usually when I feel my best, so it’s frightening me to watch myself decline during the weeks when I can always count on considerable improvement. I realized the other day that in the last twelve months, I’ve sailed maybe three times. Might be more like one. I can’t recall. I can recall the moorage bill, but I try not to think about that. Whenever I ask Greg if it’s silly to have a tiny boat parked at a marina in a big expensive city, he says, “I’m not willing to give it up yet. Let’s give it another year and see if you get better.”

A real challenge is to find things that make me feel productive while I’m on the couch all day (looking around at the mess I don’t have the strength to clean up). So a few days ago I started a big archiving project for all my photos. I have an account over on Smugmug, and I’ve been creating folders labeled with the year, and then filling them with galleries of photos. It started out great, it felt like very meaningful work. These endless gigabytes of pictures, once organized, would be enjoyed by family and friends for years.

But then, partway through, despair snuck up on me. I kept finding photos of myself, with Greg with the kids, with my friends, and all I could think when I saw myself was, “Look how healthy she is.” That woman had no idea what was coming. But then, we never do, right? Life doesn’t have guarantees. We don’t arrive out of our mother’s womb with a data sheet detailing all our future travels, foibles, tragedies, adventures. If this journey comes with anything, it comes with a warning label. My situation could be a lot worse. I’m very aware of this.

 

Still, in that moment, looking backward in time, I felt so much grief. How much I wanted that body back, that could hike, or stand in the kitchen for hours making food or cleaning up. That mind without the brain fog, the ability to read for hours. And I was so fit! It isn’t that I think being fatter is so awful, but what that lighter body represents to me is the ability I had to exercise, and how great it felt. Back then, damn, you should have seen my calves. I loved my calves. My body took good care of me, then. I could walk, I could run, I could dance, I could bike for miles.

Whenever Beth asks me, “Were my eyes really that big, when I was little?” I show her this photo.

I can’t exercise that way anymore, and if I try to exert myself even a little, I pay for it for days. I’m never not in pain. When my Stanford doctor told me to stop exercising completely, full stop, it was a huge blow. When I told people about that later, some snorted, “I’d love it if my doctor told me that.” But it isn’t funny. I’ve taken a lot of anatomy courses, I know what happens to a heart that isn’t getting healthy stress through exercise on a regular basis. Fat by itself won’t kill you, but being sedentary will. Being told not to exercise frightened me, more than anything else.

Last night, I took my second anti-viral. I was supposed to take a small dose every day for a few weeks, and see how I adjusted to it. Within an hour, I was doubled over in the bathroom with severe cramping and diarrhea (a side effect of this one). I was like that until 3am. I woke up this morning and it felt like my guts had spent the night battling razor blades (and losing). This has gone on all day.

I don’t know what will happen. It’s become my mantra: I don’t know what will happen. If this illness is making me face anything, it’s the stubborn resilience of a bad idea: that my elemental force-y-ness never really died, that I will resurrect it, and use it to get myself out of this. But I’m learning that it isn’t my only tool. It never was. I’ve been reading about mindfulness meditation since I was a teenager, but have I spent the last twenty years diligently practicing being present? No, I practice present-moment avoidance. I’m really good at it. Gold medal, PhD, CEO of the company.

Well, I can’t avoid this. I can’t avoid the not knowing. Maybe the next drug will help, maybe it won’t. Maybe the nutritionist I saw will help, maybe she won’t. Maybe I’ll get worse. Maybe I’ll end up needing a walker or a wheelchair (and maybe that will be okay). Maybe I’ll get better.

Breathe. Look at how beautiful the bamboo is, waving in the backyard, tall and slender and making that lovely noise as they brush up against each other. A quiet, rustling song, sung between themselves. If we ever move, I will miss that sound. We’re supposed to cut the bamboo down, our neighbors will sometimes remind us of this, but it’s so gorgeous. I refuse. Let it grow as high as it wants.

I’m reading Jon Kabat-Zinn’s book, Full Catastrophe Living, for the millionth time. I bought my first copy in my twenties. I just got the most recent edition. I also downloaded the audio version to listen to in my car. It’s about dealing with crises, health or life or whatever arises, with mindfulness. It’s especially for people who are sick or recovering from something.

He talks a lot about the stress of feeling out of control:

If you have a chronic illness or a disability that prevents you from doing what you used to be able to do, whole areas of control may go up in smoke. And if your condition causes you physical pain that has not responded well to medical treatment, the distress you might be feeling can be compounded by emotional turmoil caused by knowing that your condition seems to be beyond even your doctor’s control.

The guy knows what’s he’s talking about.

Right now he’s teaching me the “attitudinal foundations of mindfulness practice”. Every one of these is hard. Of patience, he starts, “Patience is a form of wisdom. It demonstrates that we understand and accept the fact that sometimes things must unfold in their own time.” PREACH IT, JON.

But then he said something that really made me stop. This line, I circled it in the book. Looking back at my old photos of a person in a body that I no longer have, looking at friends and acquaintances and people on the street, people bicycling past me in traffic, even movie stars…wishing I could do what they do, travel around the world, move their bodies, live in the world engaged with a career, engaged in LIFE…crap, the sense of loss will just overwhelm me sometimes.

But then I read this, the thing I circled:

It is impossible to become like somebody else. Your only hope is to become more fully yourself.

It doesn’t have to be only a journey of loss. Loss is here. But maybe it’s also a journey of discovery. If I can be brave enough to accept what’s happening, maybe it will surprise me. Slow down. Look around. Just let the wind bend me a little, like the bamboo. I’ll try.

 

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.

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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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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