Tag: Chronic Fatigue Syndrome

Trying to explain that I’m not depressed: my canvas metaphor

My psychiatrist – a different person than the therapist mentioned in my last post – will frequently point out that many of the symptoms I talk about are also signs of depression. I see her once every few months for a small dose of anxiety medication that helps with the panic attacks, but inevitably we end up talking about everything happening in my life (as you do).

Fatigue, exhaustion, weariness (it sounds like I’m repeating myself but these three are entirely different flavors, I can assure you), exercise intolerance, difficulty sleeping, difficulty concentrating. Those are all things that can come with depression. I’m aware of this, believe me. I had a very serious depression in my early twenties. I remember it well, so it’s sometimes frustrating to constantly reassure caregivers I know the difference, and I need them to see me accurately.

Why is this important? Because accuracy in diagnosing mental health conditions is just as important as accuracy in diagnosing anything else. It affects what drugs you’re offered, what care you have access to, and whether and if you get better. Part of the crime, as well, of CFS diagnosis and management, is how many patients are initially told they’re just depressed, and that depression meds are all they need. This lazy and careless handling of CFS patients has caused a great deal of damage. We need to work harder at understanding the experience of CFS – whether a patient’s experience includes depression, or doesn’t.

How I explain it to friends and family, and how I explained it to her today.

“It’s like if your mood is a canvas,” I said. “Every day you wake up, and your canvas is blank. A fresh surface to paint upon.”

By the end of your day, it’s full of imagery based on the feelings and experiences you had throughout your waking hours. Maybe a difficult interaction with a co-worker leaves a dark and brooding bit of color in one corner. Maybe a phone call with great news leaves a bright splash of color. Maybe the rest of your day was pretty average, and your canvas has a big swath of neutrals through the center. You wake up the next morning and the canvas is mostly blank again. Maybe a few things carried over a bit, but mostly your options are open, your potential for anything is back again.”

People always get this, it intuitively makes sense. I continue. “Okay, so depression, for me, was waking up every day and my canvas was already black. Before the day had even started, before I’d had any experience to warrant a black mark, my canvas was already covered in black. I would spend the whole day just trying to overcome that, to feel anything other than what was already there. After a time, I only had energy to live with it.”

Usually heads are nodding by this point. Depression as a thing you carry with you, as a thing you can’t control, an inescapable weight; this makes sense to most people.

But nowadays, here’s where I veer off:

“Chronic fatigue syndrome, for me, is different. I don’t wake up to a black canvas. Instead, I wake up, my canvas is fresh and ready to go, but….I only get two colors. Before I was sick, I had access to a rainbow. A rich, complex palette of experience. These days, I get two colors. One is the color of fatigue, the other is pain. Everything in the whole day is filtered through fatigue and pain, and by the end of the day, that’s what I see. How much was I able to do through the fatigue and pain? How much was I able to feel through the fatigue and pain? Every color the world tries to add to my canvas gets fatigue and pain mixed in with it, and most of the time, I can’t see anything but those two colors.”

Today, she got it. She finally understood. It was such a relief to feel like I’d finally hit on the image that made it clear.

It’s this reality that I’m grieving. This is why I “seem depressed” to a person seeing me every couple of months, like my psychiatrist. To my therapist, who sees me once a week, it’s clear that what is happening is not a depression coming in and making it so I don’t want to live my life, but CFS coming in to steal the life I very much still want to live. I still make lists of things to do, both mundane and adventurous. I still go to Antioch’s website frequently and dream about finishing my degree and someday having the professional life that so many of my friends enjoy (although I want to say thanks to the nurse who took my blood pressure yesterday, who responded to my “I’m just a stay-at-home-mom”, with, “There is no ‘just’ about that, it’s a lot of hard work”).

I get teary when I talk about selling Elska because all those adventures I’d dreamed of are still very much a part of what I want and crave and pine for in my life. And for many other things, I sill want, I still crave, I still pine. The problem is, the energy to get those things just isn’t here anymore.

I needed her to see the difference. Finally, she did.

The superstitious part of me needs to end this by explaining that, in clarifying the difference between depression and grief to my psychiatrist, I am by no means saying I’m somehow immune to depression. It remains a big fear of mine, and it’s unfortunately very realistic to be concerned about it recurring. I keep a sharp eye on trends in my mood, and have a health journal where I record what I’m noticing. When I’m really down, I ask myself questions used to diagnose depression, as a way to get perspective on what I’m feeling, and to know whether it’s approaching the red zone. I also regularly ask that my family members be aware of depression signs, and to reflect back to me what they see, in case I’m viewing things inaccurately. Finally, of course, my therapist who sees me weekly talks with me about anything he notices. We stay on the lookout, but we don’t dwell on it.

Good grief.

Life-changing showering apparatus.

In the last two months, this bullshit illness has worsened. Tonight I realized that it’s reached the point where I need my shower bench every time I use the shower. I bought it a year ago, because my hips and low back would seize up with severe pain, and holding onto the stool as I stepped over the side of the tub would give me the extra balance I needed. But it was a convenience item. It had novelty. I only used it for one or two showers out of ten, and if books or magazines were stacked on top from my last bath, I could just hold the side of the tub and be extra slow and cautious. The stool was nice to have around, but it didn’t make the difference between whether I got a shower or not.

My therapist is a great person that I’ve been seeing off and on for a few years. Off when things are calm, on when the panic disorder is blaring for whatever reason. He’s fantastic at his work, a real gift to the profession, and I just stumbled into his office because his address listed him close to my house and I was too anxious to drive any farther. For a couple years I saw him every two weeks, with frequent longer breaks, which, much like the shower stool, felt like something I kept around because it was reassuring to have, but I told myself it wasn’t like I absolutely needed it.

In the last six months, we’ve shifted to every week. I need the therapy. I absolutely receive measurable benefit from those hours. I wish I could say I have to go because I’m a little extra anxious, but all we talk about is coping with CFS. It has come to dominate everything. I hate it for that.

It’s probably going to dominate this blog. I had intended to write mostly about sewing, and then it shifted to where I hoped it would be half sewing and half sailing adventures: a reflection of what I believed would make a pretty great life. But I haven’t sewn in weeks. The work of cutting everything out and getting it together is too tiring, and I’m in the middle of a flare. In the calendar year of 2017, I think we sailed twice. Once during my birthday, when we thought the herb andrographus was turning everything around and we were so full of (mistaken) hope. Now we’ve started talking about selling my little Elska. Greg isn’t pushing for it, he still loves sailing. But he’s said, “I think I’m finally ready to talk about it.” It feels like I have this big, beloved dog, that I have to think about rehoming because I can’t give it exercise.

I’ve been very lucky in some big ways, and it’s felt overwhelmingly important to acknowledge that. I’ve been married for twenty-two years to someone I love more every day. Cheesy, but true. We managed to have two great kids (who I won’t write a great deal about to respect their privacy). And in this ridiculous, unfair, punishing economy, I have access to general financial stability and excellent health insurance. As a non-working disabled person. I mean, come on, that just seems like so much (knock on wood, kenahora). What is there to be upset about? A little fatigue? A little exhaustion? Waking up in pain every day? Not getting anything done? Never feeling like a good parent, wife, or friend? Being unable to finish your degree or have any kind of professional life? Big deal. There are worse things.

I’ve internalized this train of thought. I actively avoid my own negative feelings related to living with CFS, because it doesn’t even seem fair to have them when I live with such good things, too. Those feelings have been piling up for years. Today, in therapy, I accidentally walked right into them (he would probably say it wasn’t an accident). I don’t even remember the conversation beforehand. It was like wandering through the woods, looking up at the trees, and then tripping over a log and stumbling a few feet forward into a clearing, looking up, and realizing you were surrounded by wolves – except not wolves because I love dogs. Maybe bears. But they don’t really hunt in packs. Okay, pretend bears hunt in packs. And aren’t furry, or cute.

Whatever. The point is: doom was inevitable. It was too late to back away. Here it was, and I was meeting it. “Ohhh no,” I thought. “Well, here we go,” and there I went. Within 45 minutes I’d gone through an entire box of Kleenex. As the first wad was rolled up, my therapist pulled the wire trash basket out from under his desk and set it in front of me, without missing a beat. Good job, man.

You see I am used to saying, “Hips and back are really hurting today,” in a friendly, nonchalant way, to explain why I’m not bending over to get something off the floor, or why I need help lifting something. I’m used to saying, “I’m sorry, I’m just too tired right now,” when I get invited to something. Sometimes I say, “It’s been a hard day.” And sometimes I just need to cry because I’m so tired and in so much pain and I hate being so tired and in so much damn pain, and it’s been days since I did anything useful like washed a dish or ran a load of laundry, and I just point to the ceiling (meaning I’m retiring to our bedroom) and say with a cracking voice, “I think it’s time for a let-it-out session.” Greg nods and follows me up the stairs, and holds me while I cry.

What I’m not used to is saying, “I can’t do ______, and it hurts.”

Look at that sentence structure. Doesn’t get much more simple than that. Right in front of me all along, under my nose. I went through a list of things. I can’t do this, that, the other thing. On and on. Big things, small things. Parenting things, life goal things, education things, professional life things. Things that are gone. Plans, dreams, deep desires. For every one I thought of, I cried so hard that my therapist, sitting on his chair in front of me, became a blurry haze of navy cable-knit with a head-shape on top and loafers sticking out the bottom. “Am I even looking at his face?” I wondered, through all the water pouring down my cheeks.

I don’t want to write them all down, the things. My things. It will be different for someone else. The things I treasured doing, the things that made me feel alive, it’s easy for someone to dismiss, and I won’t sit for that. Fuck dismissal. We all come alive with different things. For me, the big things that made me come alive, aren’t accessible to me right now. I don’t know if they ever will be, again. And that hurts.

My therapist said this was great work. I laughed and told him I’d bring him a new box of Kleenex. We talked about how hard it can be to sit with emotional pain, especially when we have within ourselves (and are aware of in others) so many judgements about it. Saying it hurts doesn’t mean you’re proclaiming it will never end or is hopeless. It doesn’t mean you’re wallowing. It also doesn’t mean you’re saying it’s the worst thing ever, worse than anything anyone else has ever gone through. It just means: it hurts. And it’s okay to cry about it.

I must have been on a roll, because later tonight I got home and took a shower, and realized while I was sitting there, my head full of shampoo, that I can’t not sit there. If I stand up, I get too dizzy from fatigue and exhaustion. I can take showers without the bench if I’m very careful and I make them very fast (and I don’t wash my hair that well), but it takes so much concentration (and forced optimism) and when I’m done, I’m three times as exhausted than if I had just used the stupid bench.

I got out of the shower, got dressed, went downstairs, and told Greg about it. I said, “I can’t take a shower without sitting down while I’m doing it.” And then I cried a little. And it was okay. No one judged me, and if they did, I think I’d have felt pretty okay telling them to feck off. I didn’t feel a need to judge myself. This illness is hard. It might get better. It might not. Living with it isn’t easy. It is what it is.

I sat with that awareness for a minute, and then I got up and went into the other room, and sat down with Jason and our friend Claire, and watched Pride and Prejudice. Nothing better than celebrating the acknowledgment of difficult emotions than by watching a love story set in a society actively constructed to avoid the unchecked acknowledgment of nearly anything.

“I think a ball is a perfectly irrational way to make new acquaintances.”

Oh, bookish little weirdo after my own heart. Mary and I are the INFPs in the corner at parties, petting the dog and reading the spines of the books on the shelves.


Mr. Collins, receiving the elbow of insolence.

I rented a scooter at the zoo

An overweight woman on a scooter, with a $7 bag of kettle corn in my basket. The whole thing reminded me of an episode about obesity on some evening news program. But it didn’t bother me. I’m too tired to care what anyone else thinks. In the first half hour at the zoo yesterday, hell, in the first fifteen minutes, I felt demolished. My back hurt, my feet hurt, and the weakness was so much fiercer than my old normal (my new, more profound weakness, is my new normal). I had to keep grabbing Greg’s arm when the unsteadiness would hit. The kids were pointing and yelling about something up ahead, but all I saw was a wooden bench under a tree about twenty yards away. A few people were standing near the bench, and I silently willed them to stay standing. Reaching that bench was taking forever. Why did I do this? I looked out at the trees – our Seattle zoo is beautifully wooded – and remembered how much I’ve missed being out, lately. Going places. Just being somewhere else but my own living room. I wanted to be here, I wanted to hang out with kids in an environment that wasn’t home. But was it a mistake? Was I going to drag everyone down? Were there enough empty spots to sit, at the right intervals, to make this work?

We finally reached that beautiful wooden bench, and I sat down. Greg said, “Here, let me carry that,” and took my purse and began stuffing it into his backpack. I tried to be cheerful for the kids, but I couldn’t concentrate when they showed me things. I was so distracted by the pain, by the fear that I might have to leave early and ruin it for everyone. We went on like that, bench to rock to bench to railing, resting every few minutes, the kids traveling on up ahead and coming back to give reports, until I noticed someone rolling by on a scooter. I looked at it carefully, and realized it was a rental. The zoo had rental scooters?! I looked at Greg. “That’s a rental! We could get one! Would it be nuts for me to ride one of those?”

“Huh! Actually, that might be a great idea. Where do we get one?”

We both whipped out our iPhones (our zoo has an app) and looked at the map to see where the nearest guest services station was located. Thankfully not too far. And there was one scooter left! It was $25 to rent, with a $200 damage deposit. For the deposit they just took a rubbing of our credit card, they didn’t actually charge it. The guy said they’d never had to charge anyone the deposit. I got a little well-rehearsed speech about how to use the controls (very easy), and sat down in the scooter seat.

The relief I felt was immediate, and I was overwhelmed with gratefulness. Sitting down, the pain was over half better! This meant I could concentrate! Oh, sweet relief. I can keep up! I pushed the little plastic bar on the handlebar and the machine cheerfully scooted forward. A smooth, even ride. The guy said the battery would last all day. I started smiling! Greg and the kids started walking, and I just kept up! I wasn’t holding anyone back, I wasn’t looking for a place to sit, I was looking where they were looking. “Let’s do the bears next!” I didn’t have to get out my map and strategize how I’d make it there. I was able to take it for granted that I could get to the bears. I could get anywhere. And I could chat with my family the entire way there, instead of spending 90% of my energy just COPING. It was glorious!


As glorious as this gorgeous flower, which I posted to Instagram and described as a hydrangea who had changed her mind. Someone commented back and said it actually is a hydrangea, a variety called “lace cap”. I saw these flowers all over the zoo. I took a picture nearly every time. I credit the scooter with giving me the energy to spend the entire afternoon zipping over to flowers and appreciating their charm. One of the best parts of the scooter was how it conserved my energy, so that when I wanted to get up and walk around an exhibit, I could do so with far less pain and zero anxiety.

In the car on the way home. The number in the middle, the 3,543, is my number of steps. I use an app called Pedometer++. I’m estimating that the scooter saved me around 3k steps. While it’s incredibly hard to “pace yourself” with CFS (don’t ever tell a person with a chronic illness to pace themselves, if you want to avoid bodily harm), but in general, I know that I can usually to 3k-4k steps in a day without crashing, assuming other factors (sleep, digestion, etc.) are going well. So I was elated when I looked at my watch and realized I was in a great spot for the rest of the day. I could go home and rest, and probably still have a little left this evening to play a game or hang out with people. That scooter really saved my ass. I’m so glad I made the decision to use it!


Here’s a few more photos for family and friends:


We loved the penguins the best, I think. We gave them names and told stories about them.


This penguin is a baby. Beth named her Barbara.


It was a warm day, and this orangutan was high up in a hammock, with a bucket over their head to get some shade! Aww!

There is a butterfly garden now, a permanent installation!


Flamingos are simply fantastic. And remind me a lot of the mid-80’s. My favorite eye shadow in 6th grade was this color.


Miles got a blue ICEE, it stained his lips and teeth. When I told him he was adorable, he said, “Yeah, I get that a lot.”



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.