Category: Chronic Fatigue Syndrome

I’m wearing Leia buns everyday now

A couple of months ago I discovered the joy of spin pins.

They can apparently “do the work of 20 bobby pins”. I shudder at the thought of any hairstyle that requires 20 bobby pins so I haven’t tested this claim, but I can say that these spiral pins are amazing. There are so many things you can do with them, and they hold hair tight and pain-free.

While everyone else takes joy in the pixie, I’m growing out a pixie from 18 months ago. It isn’t Officially Long yet, it’s at that really annoying length. Long enough to get in my way, not long enough to do anything useful.

What’s saved me is two things: my summer discovery that I could use my copious store of knit fabric and a serger to make very comfortable headbands, and spiral pins. I don’t like ponytails, I have a sensitive head and elastics hurt. I don’t even own any hair elastics anymore, I just don’t need them. After experimenting with spin pins, I found I could go pain-free for hours and hours with two buns on either side of my head.

They aren’t quite as close to the ears as Leia’s, but they’re close-ish. I love channeling her, and I highly recommend the experience for any spoonie (person with a chronic illness). When I get up in the morning and put up my Leia buns, I feel a little bit of her strength. Just enough.For extra fun, you can pull a little bit of hair out of the center, and you let it artfully fly around (you can channel Leia and Phoebe Buffay at the same time, if you’re so inclined).

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.

MD on Twitter tells me to see a "real" doctor, not a "quack" naturopath

Due to nothing so much as a lack of attention to social media other than Facebook, I rarely post to Twitter intentionally. Mostly what goes on my feed (@sewbiwan) is links to my blog posts that are auto-posted for me. So I was surprised when I checked my feed today and realized I’d missed some replies. In response to my last post, I’m leaving Bastyr and moving on to a new naturopath, I saw this:

He’s referring to a blogger I enjoy and follow, Naturopathic Diaries, written by a former naturopath. Really interesting stuff, definitely worth checking out if you’ve ever had an interest in how and what naturopaths learn. Bastyr, our local naturopathic university, isn’t too happy with her and has actually sent her a cease and desist letter. I got a cease and desist letter once, for giving a business a poor review on my website (way back in ’96 – wow I’m old), so I know a little about this. I’ve read the posts Bastyr is upset about, and their letter just makes it look like the blogger is right and they’re afraid. I agree with the blog writer that it’s important information to talk about. If Bastyr is so afraid of her revealing something, then that says a lot about what they might have to hide.

You might wonder why I enjoy an anti-naturopathic blog but am seeing a naturopath. My worldview is that science is the best lens we have through which to observe the known universe, and while not perfect (just as people aren’t perfect), good scientific data trumps most things (nearly everything – I’m struggling to think of an exception), most of the time. That said, there’s theory, and there’s experience. I have experience with ten years of good medical care from smart, well-educated MDs. They are great people, with a lot of ideas, and they’ve been able to do nothing for my CFS/Fibro (I’ve been diagnosed with both).

If the theory is that evidence-based-science rules all, then I should have made some progress. Yet, since I’ve been diagnosed, I’ve gotten steadily worse over time. Does that make me say, “MDs are quacks”? No. Science can only know what it observes, and unfortunately, very few people have looked at these disorders, and what research is taking place, is still deep in trials and testing phases. The Stanford program, for instance, took me nearly a year to get into and only made me sicker (caveat: my new naturopath suspects that the Stanford antivirals program might work much better after we’ve fixed some other things). The science is baby-new and conclusions are drawn and then re-drawn on a regular basis.

Where does that leave me? Up shit creek, is where it leaves me, every single day. Every single day that I can’t hold a job, go back to school and finish my degree, take the trips I want to take (from across town to across the world), do enough chores to keep the house looking tidy, or give my kids all the experiences I want to expose them to before they grow up and leave the house.

Up shit creek is where you’ll find naturopaths. They’re used to seeing people at the end of their ropes. Both the naturopaths I saw recently said almost the same thing to me, “All I see are outliers.” If some of these MDs weren’t so busy making people who are going to see naturopaths feel like ignorant sheep, they might notice that these human beings (often very sick human beings) are going to see these “quacks” because MD’s aren’t offering them squat.

For years I avoided seeing a naturopath because I thought exactly the way this guy does. They’re quacks! Bastyr charges their naturopath students thousands of dollars to learn homeopathy. And yet, I couldn’t help but notice that the few people with chronic illness I’ve met, become friends with, or read about, who have seen improvement, have gone to see a naturopath. (Sometimes this professional, like the one I’m seeing, is a “functional medicine” naturopath, and LAAAWD, if you really want to see MD’s get their undies in a twist, talk to them about functional medicine. I dare you.)

When I finally went to see a naturopath, I was prescribed B vitamins, a turmeric supplement, an herbal supplement, and some tea. I thought, “I was right, this is nothing but junk science.” But two weeks later I began improving, and a couple weeks after that felt better than I had in years. My shock at how much lemon balm tea helps my anxiety led me to study herbal medicine again. And yes, the Andrographis Plus didn’t work – in a kind of spectacular fashion – but it was the most promising result I’d ever had from any treatment, ever.

Do I buy into some belief that naturopaths are better than MD’s for everything? No. Do I think they might have some interesting ideas about CFS? Yes. And since my insurance pays for them, which means I’m not out $$$ every time I see one, it behooves me to at least try. Not because I’m anti-science, but because I’m pro-doing-anything-to-get-better.

And so I replied.

And then he replies:

I wasn’t surprised to get this. Always, the assumption is that the person just isn’t doing it right. But what killed me was that the article he links to has outdated information! It’s wrong. It recommends the GET protocol, graded exercise, which has been shown to be based on bad science and probably hurt thousands of people. This article tells you what you need to know about that. It was truly awful.

Also ironic: his linked article is written by the National Health Service, which is Britain’s medical system. A good friend of mine lived in Britain for many years and struggled with many of the same health issues that I do (though not the same diagnosis). She finally found help with – wait for it – a functional medicine doc. My friend is an intelligent, educated, rational person, but she also found herself stuck in a system that couldn’t do much to help, so she went elsewhere and whaddya know, found someone outside the traditional system, who helped her make significant progress.

So I wrote back:

He responds:

He has no leg to stand on here. His response is basically to tell me that I should avoid quackery (which in his view is all naturopaths), and go to a REAL doctor doing evidence-based medicine. But in the same breath, he admits that “No one has good answers to CFS,” and what he suggests is “small-scale work on antiviral agents”, which is, first of all, exactly what I’ve already tried. Not that he should know my medical history, or have read my blog, but why be so arrogant to assume that I’ve not tried a “real” doctor in the past?

Not to mention, he’s proving my point: the science is still in its infancy! It’s ridiculous to tell someone “go get some evidence-based medicine” and point to some study of a few hundred Italians when this is not a standard protocol that any patient off the street can access! My own GP, a very insightful physician in a highly-rated hospital, wouldn’t prescribe me antivirals because she wasn’t aware of any of this research, nor was this approach, to her knowledge, standardized in any way. My hematologist told me the exact same thing, essentially, “I don’t know what they’re doing at Stanford, but I can’t just prescribe something to you because you say some researcher somewhere had some positive results with it.”

So I did find my way to Stanford, after a year of waiting, and a trip that cost (with plane fare) over a thousand dollars. But then this Twitter guy tells me to just go find an MD who practices “evidence-based medicine”? Because it’s that easy? Once I do that, I won’t need these “quacks” anymore?

It’s this kind of arrogance combined with ignorant assumptions that people with chronic conditions have to deal with every single day. Science has not been kind to these sorts of conditions, first mocking the people who presented with them in the first place, then finally deigning to give us a tiny slice of the research pie. That tiny slice has not yielded anywhere near enough treatment options for the nearly 3 million people with CFS.

Thanks, but no thanks. Criticize naturopathy all you want, I don’t care. I don’t take it personally. I’m not invested in naturopaths being seen as valid to anyone, and I’m happy to see pseudoscience take a beating with well-run studies and lots of data. But what I do care about is getting well, and ten years of evidence-based medicine has done absolutely nothing to help, so don’t criticize those of us whose desperation has brought us to something you look down your nose at, and don’t pretend that science has any reliable answers to CFS that are in any way accessible to the masses.