Tag Archives: fibro

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 yesterday 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.

 

 

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.

Continue reading

Let’s call it, “Two thousand and Sucksteen”

trumpThis has been my year, but I’m not claiming it’s the worst. People around the world are having years of suck that make mine look like a fantasy of unicorns and daisies. In the US, many of us are just depressed. If you’re female or gay or black or Mexican or Muslim or you care about the environment in any way, then the election season may have brought any optimism you felt about your fellow Americans to a brutal and crushing halt. Personally, I’ve moved through different stages. Shock, grief, awe, confusion. No real positive or super pro-active stage yet. I guess I have developed an addiction to bowls of breakfast cereal and almond milk that is probably foritifying me with vitamins and minerals I didn’t previously get enough of. Maybe that’s a plus?

I feel like I’m settling on, “My heart is broken,” which isn’t good. I don’t know what to do anymore, as a citizen, as someone with an exhausting chronic illness, to stop the environmental destruction we’re doing on a global scale. Social justice needs a lot of work, but there I feel more optimistic. There I feel I can make a small but noticeable bit of difference, so it sucks but it’s a suck I can at least attempt to bring meaningful change to. But the environment? It just feels like doom. Unending doom. I’m not coping well. We’re killing the planet. I can go vegan, I can drive (or not drive) my Prius, I can reduce my use of plastics, I can do a lot of things, but in the end it just isn’t enough. We don’t have enough people in power caring about this, and it’s going to kill us all.

But it wasn’t just Trump. The year 2016 managed to suck in a lot of other ways.

Jiminy Cricket got squashed

In the first part of the year, a friend stopped speaking to me (and by extension, her whole family stopped speaking to my whole family) after I wasn’t supportive of her burgeoning relationship with an older married man. My whole family was blindsided. She’d been acting odd, but whenever I asked if we were okay, she said that me constantly asking this was wearying her (Really? Tell me about it). She said I was imagining things. Then she told me I was the sister she never had and I should never doubt her affection for me. This is gaslighting, and it’s a shitty way to treat someone.

I stopped bothering her about it, thinking she’d just come around when she felt ready to explain what was happening. Unfortunately, it only got more surreal. She came over to our house for our regular social night and didn’t speak to me. In front of mutual friends. For the entire evening. I actually had a panic attack and had to go upstairs and find my anxiety meds, my hands shaking. I hadn’t been treated to the silent treatment since the 5th grade, and experiencing it now was just as gross and awful as it was then. When she and her husband left (he’d made a heroic effort at small talk with me that night, I thanked him for that later), everyone in the room turned to me and said, “What was that?” If all these people hadn’t just seen it happen, I’m not sure I would have believed what I’d experienced. Who treats someone like that? What has to be wrong with you?

Finally, when she and her new guy friend dropped me on Facebook on the same afternoon (he and I had been friendly acquaintances from guitar camp, and had no conflict), it dawned on me what was happening. Of course. How could I not realize? I hadn’t been supportive of this one thing in her life, and that’s when all the weird treatment started. It was so obvious, in retrospect. But our family was in shock. We weren’t sure how to respond. Are we really not talking anymore? Did she actually just sever connections with all of us through Facebook? 

We wrote to her husband something like, “Uhhhh, we don’t know what just happened, but what just happened?” He sent an apologetic and understandably cryptic reply. He said our son was still welcome to email him about gaming stuff. A few days later, I imagine under duress from her decent human being of a spouse to offer some explanation to the people with whom they’d spent two years socializing with every week, my ex-friend sent me an email that explained things had gotten “tense” and she was moving on.  Just a notice of vacated premises. The chilly lack of apology, in stark contrast to her warm (very well-crafted) public persona, made me (and us) feel so stupid. How had we gotten so suckered in?

As a public service, and to avoid drama in the future, I made up this handy flowchart for any other married people who may need to decide whether they’d like to share with me any extra-marital feelings that may be developing:

flowchart

Note on tone shift: I had Greg read this post, as he reads all my posts before I publish them. He’s my feedback guy, my spellcheck. He said, “I think it’s great, but there’s a tonal shift here. You’re pretty serious above this, but you have more elements of humor below. It isn’t something you need to change, but it’s there.” I thought about this. It’s because I’m still angry about how I was treated by my friend, so that part is less funny. I’m generally Chandler-esque, I deal with negativity by using humor. In the case above, I haven’t gotten there yet. Especially after I found out the damage to others, unrelated to our family, that happened because of the choices made in these circumstances. It was truly a long game that was played, and it was very cruel. I was not the worst hurt. So, I’m not finding it funny yet. In time, I’ll be able to joke about it. 

And then our kitchen exploded

water-dispenser

NOT AS INNOCENT AS IT SEEMS

Most new refrigerators have a water feature. You can push your glass up to the fridge door, press a lever or a button, and water comes out of a little spout and fills your glass with exactly the same stuff that comes out of your sink. [throws up hands] [moving on].

Somehow there came to be a leak in this hose on the back of our fridge. Because our house is over a hundred years old and was put together by drunk, blindfolded ferrets, the floors are all uneven. This means that after the water leaked down the fridge and onto the floor, it ran downhill to the dishwasher six feet away. There it pooled, and then gently seeped out into the floorboards in front of the dishwasher. And this meant that for two weeks we thought our dishwasher was leaking, when really, the water was seeping through the floor and creating a flood in a basement storage room that we rarely enter.

But we didn’t know that. because it really looked like the dishwasher was just having some sort of midlife crisis (I hear that happens in your forties). We tried a different seal. We tried cleaning the filter. Nothing worked. We were at the point of discussing a call to a repairman, when the dishwasher caught fire and ended the discussion. Due to (one would assume) the puddle of water it was sitting on, it shorted out. The entire house began to smell like melted plastic and broken dreams. Thick grey tendrils of smoke were pouring out of the dishwasher buttons. It really did feel like watching the soul escape the body.  Jason, usually the most safety-conscious of the household when it comes to home repair, bent toward the door. “Let’s just turn it on again and see what it does.” Greg and I yanked him back.

At least we didn’t have to deal with the leak anymore. Agreeing we’d buy a new dishwasher in a few days, we set about getting a dishrack so we could do dishes by hand. But then a couple days later, the floor in front of the dead dishwasher, commenced squishing. And when we stood in the right spot, water dribbled up from between the floorboards and pooled around our feet.

It was at this point we knew something was very, very wrong.

Maybe it was some tiny leak under the sink? We cleaned everything out and searched. Nothing. “I wonder what’s directly under that spot?” I said. “Maybe it’s a pipe? I’m going downstairs to see if I can see anything suspicious.” I looked around and made a mental note of about how many feet the puddle was from the surrounding walls, so I could estimate it from below. But all that thoughtful measuring was for naught because it turned out WATER WAS STREAMING DOWN THE ENTIRE BASEMENT CEILING AND FILLING THE STORAGE ROOM. If I’d realized I’d be writing about this on my blog nine months later, I’d have taken a little movie so you could experience the cascade, and hear my screams.

Panic ensued. There was a lot of cursing. The ceiling was raining! Ceilings are not supposed to rain! Boxes, furniture, blankets, everything was soaked. And that horrible, sickening realization that the whole time we just thought it was a few tablespoons of water leaking out of the dishwasher every day, water was draining literally out from under us into the lower floor. We bolted back up the stairs and called an emergency plumber. He turned off the water to the house, and spent an hour trying to diagnose the problem. Once he realized, he said, “Oh yeah, those hoses are a real problem. I don’t know why people install them. This happens all the time.”

ALL THE TIME.

ALL THE TIME.

Listen up, everyone-who-owns-a-fridge.

The plumber got the leak stopped, and for a few blissful seconds, we stood there in silence. What a relief. Water was no longer filling the basement! Then we looked around, taking it all in. It was dawning on us what a project we still had. Yes, this was going to be a big mess to clean up. Maybe we hire someone to come in and help us with the basement? That’s when the plumber threw up his hands. “Oh no,” he said. “You can’t just clean this up with towels and bleach. You can’t just dry things off. It will all mold. You need …[dramatic pause while all the homeowners in the audience grab their seats]… FLOOD REMEDIATION.”

I think at this point all three of us, Greg and me and Jason, who all co-own the house, were having little aneurysms. Greg and I had left a cohousing development many years ago, after our community suffered a protracted legal battle with the original builder over mold in our main building. We were familiar with mold and water damage, and it was not something we wanted to go through again. Jason is averse to risk, averse to large homes, averse to old homes, and averse to any intersection of these. He had only agreed to buy this old beast because he could walk to a cafe, have a garden, and because when I first entered the house I fell to the floor in a dramatic flourish, grabbed the leg of the current owner, and started begging to be allowed to live here. Not really. Maybe a little.

And I still maintain that this is the best house we’ve ever had. But this was not its best year.

What ended up happening was this:

In case you've ever wondered, "What would it be like to have a pipe from the fridge burst, causing rain in the basement?", well, this is what you end up with. Four days of a fire and flood remediation company, and a 24-hour gazillion-decibel roar of fans that suddenly makes you deeply compassionate toward people who work at the airport. You also discover that under your 100-year-old house's Pergo kitchen floors is, no joke: a heinous, hauntingly ugly linoleum, a layer of particle board, another layer of linoleum, another layer of particle board, and finally: the original wood floor. #homeimprovement #waterdamage #homesweethome #oldhome #whatwherewethinking #nowonderthekitchenflooristwoinchestallerthaneverywhereelse

A post shared by Sewbi-Wan Kenobi (@sewbiwan) on

For weeks we had these fans running. The constant noise was exhausting, but what was worse was not having access to our kitchen. They had to tear out the sink, cabinets, and then the floor. Guess what they found under the floor! More floor. Turns out the previous owners had just kept stacking new flooring on top of old, and by the time we’d peeled it all back, we now had to deal with asbestos remediation. Add on two weeks for that. Then problems with the new dishwasher, with the pipes leading downstairs, with the electrical outlets, with the painting……

This post is already too long, so I’ll just say this: THREE MONTHS LATER, our kitchen was back. I never want to go through this again.

And so I gained 15 pounds

lisa_simpsonThanks to not having a kitchen, eating too much take-out food, buying a lot of snacks, and generally being under a lot of stress, I gained fifteen pounds. I’m already overweight, and with the fibromyalgia, the pain gets much worse with extra pounds. Picture the worst ache you’ve ever felt after a workout. Now picture living with that, every day, without end. Picture waking up every day and feeling like a truck hit you. And now picture that every morning you get out of bed, you’re forced to put on a 15 lb backpack and carry it around all day. See what I’m saying? I’m not saying fat is bad, that being fat is bad. I have a lot of fat love, I’ve worked hard to accept my body. But at this point, extra weight on my chronically-ill frame isn’t anything but extra agony. It isn’t a political issue, it isn’t anyone else’s business, and it doesn’t mean anything other than this: weight means pain, and I need to be lighter. I will have to deal with this, this year.

And then my friend died

Last September, a very good friend of mine called me on the phone, and then told me to sit down. She’d found out she had pancreatic cancer. I don’t want to write more about this, I wrote about it here, and that was enough. I miss her terribly.

So the fibro got worse

I need to write about this more, if only to add to the solidarity of so many fibro folks writing right now. The experience of living with this disease/syndrom/whatever the hell it is, is so taxing to the body and soul. And this year it really kicked itself up a notch. Stress + grief + weight gain = fibromyalgia flare-ups. I had a really awful end-of-summer and fall in terms of pain. I did, however, get on the waiting list for a program at Stanford University that will hopefully help me. I should get the call toward the end of summer 2017, and then we’ll fly down there, do some tests, and see what we can see. My fingers are crossed. In the meantime, I’m dealing with new levels of pain and fatigue. I’m very unhappy about it. And I wasn’t able to go sailing much at all, which deserves its own heading.

Which meant I wasn’t able to go sailing much at all

I love my little twenty-foot Flicka, Elska. She’s my dream. I’ve sailed her maybe a half dozen times in the last nine months. Greg’s new plan is to get good enough at docking that he can essentially take her out without my help. If he can single-hand her, that would mean I could come along and not worry if my energy pooped out and I spent the whole time sleeping in the forward berth. I still really don’t like the idea of going out when I’m this weak. If I fell overboard, I wouldn’t be able to get myself back in the boat. And I know he wants to learn to dock, but I’m such a control freak, I don’t wany anyone else docking my baby. This might be the last year we own a boat, and if that’s true, my heart will break. I had big plans for this part of my life. Crossing fingers here, too.

And then Orange Man got elected

For weeks Greg had been telling me, “Just stop reading the news, it’s fine, Hillary has it.” Election night was sickening. We couldn’t believe what we were seeing. Watching that map turn red changed my belief about our country, and the people in it. I have friends outside the US, and not one of them could believe what they were seeing. “How can you people elect someone like that?” I kept hearing. I don’t know. I have no explanation. Articles abound on how this happened, I’m not an analyst, I won’t speculate. I just know that it made me afraid. When intelligence isn’t a value anymore, when logic ceases to have influence in an argument, when evidence is reduced to opinion, when all that matters is money and who has the most of it, what will we become?

And then we got sick

First Greg was sick for three weeks. Then Miles got sick. Then I got sick. Between Thanksgiving and Christmas, right when all the holiday chaos needs to be taken by the reins and steered into presents, a tree, wrapping, cookies, meals, organizing….was right when we were all laying in bed, trying not to lose a lung every time we coughed. It was the worst illness to hit our house in years. We’re still recovering our strength, and now…..Greg is sick again.

And then everyone died

Seriously, have you seen the lists? Elie Wiesel, okay, he was 87 years old. And John Glenn was 95. But Alan Rickman? Prince? George Michael? DAVID BOWIE? And then we lose Carrie Fisher? And then Debbie Reynolds a day later? And that’s just my heartache of the list, there are dozens of others! If ever the acronym WTF was more apropos, I don’t know when. What is UP, universe? I was praying for God to keep Betty White safe.

golden-girls

There were good things, too

The year wasn’t all bad. I started yoga teacher training! It’s wonderful. I re-discovered two friends I’d had for years, who worked together to get me through my rough patch where I basically wanted to look at all humans and hiss. One of them lives a few hours away, but the other is closer, and I see her every week. She’s part of the family now, she has her own key and just walks in (I love that). She eats from the cupboards freely. I tell her she’s going to retire with me someday, and I’m completely serious. I’m adopting her. I’ll admit I’m still skittish around new people. Especially very friendly people. I find myself thinking, “What are they hiding?” But I’ll get over it.

I also -rediscovered sewing, and that was the best craft therapy experience I’ve had in years. Even better than knitting, and I didn’t think anything could be better than knitting or spinning. It’s right up there with ukulele. Sewing made me feel enraptured, artistic, creative, inspired, and all for only a few gazillion dollars in fabric and a new serger. BARGAIN.

Also, I hated that ugly blue tile in the kitchen, and now I have black and white tile. So that’s nice.

And this year I didn’t lose two dogs to freak illnesses. That’s something.

I’m glad 2017 is here. Knock on wood.

im-done

May 12th is Fibromyalgia Awareness Day

not lazy fibro

I found out this morning that today is International Awareness Day for fibromyalgia and other pain conditions. I don’t write enough about having fibro, and today I’m going to change that. There’s a simple reason why I haven’t written about it: I’ve been hoping it would go away, and I wouldn’t have to.

me_beth

Beth and me, in 2007.

My pain started in 2007, after some intensely stressful life events. I’ve read that around 50% of fibro patients first began experiencing pain after a stressful event – car accidents are common triggers, though that wasn’t mine. I was right in the middle of trying to revamp my life by working out every day and eating better, so I took the pain as a sign my body was just adjusting to becoming the bad-ass hiker/bicyclist I was on the road to becoming. I remember taking pictures of my rippling, muscley, beautiful calves. Oh, to be that strong again.

But over time my relationship to exercise began to shift. Before the fibro, a morning workout might make me tired during that day, as you’d expect. But in the following days I felt stronger, refreshed, and more fit. I slept better on the days that I worked out. After fibro, nearly all exercise would cause several days of severe fatigue, and my sleep became fragmented and unsatisfying. I woke up tired, feeling like a train hit me. I remember this as a big transition point: I’d never woken up in pain like that, on a daily basis. Now I can’t remember what it’s like to wake up without intense pain shooting through my body.

We take a lot naps, Finnegan and me.

We take a lot naps, Finnegan and me.

From there, everything just got worse over time. By 2010, I was actively seeing doctors in an attempt to find out the source of the fatigue and pain. I saw regular doctors who told me I was just out of shape and needed to work out more, with no explanation for why my experience with exercise was now so different than before. I saw naturopaths who said I must have a food allergy or intolerance. I had four $350 allergy panels over the course of four years, all yielding different “intolerances”, none ever matching the one before it. None ever provided relief when followed. One doctor said I had SIBO, and put me on a medication that caused me to be near-fainting most of the day, until another doctor found out and said, “Hey, this medication makes people faint, we need to take you off that.” Eventually the focus on my bowels and food intake led to a day in the hospital for an endoscopy and a colonoscopy. Super fun. Neither test turned up anything.

In 2012 I was finally correctly diagnosed, by my new and excellent GP, who also sent me to an arthritis specialist at another hospital to confirm the diagnosis. By this point I was being tested for cancer, multiple sclerosis, and other scary things, so the diagnosis of fibromyalgia seemed like a huge relief. For about ten minutes. And then I got the speech: Yes, I had something that wouldn’t kill me. But I also had something that would make me feel like an 80-year-old, for the rest of my life. There is no cure for fibro. There are a few medications that can help, but none that make it go away, and all of these come with lots of side effects. In short, my life would never be the same.

One foot in front of the other. Every day.

I’d had anxiety disorder and panic disorder for over a decade. Experiencing chronic, intense anxiety had taught me to fear my own strong emotions – which often triggered more anxiety – and to fear my own body, which seemed to create these storms out of nowhere. To be able to look at the reality of fibro asked too much. I kept myself in denial a long time. I would pay lip service to “coping” and “pacing myself”, but what I was really doing was pushing the present away and focusing on a future where I was healthy, full of energy, without any fibromyalgia, and hell, while I’m dreaming, I also weigh sixty pounds less and I can bench press my body weight.

It’s been four years since I was diagnosed. Through the last year of therapy with a great counselor, I’ve been able to slowly, at my own pace, rewind from that forward place, that fantasy future where I’m healed and strong, and arrive in the gentle, if rocky present moment. My body is not a place where I’m happy. It hurts, it feels too heavy. I’m not without gratefulness for all it’s done, but it’s not easy to put the brakes on such an entrenched pattern of avoidance. What strikes me about arriving at this place, is how no one thinks I’m any different than before. I look the same. No one knows that I’ve spent so many years pretending I’m not right where I am. You’ve all been here. I’ve been far away.

pain scale

Daily life for me is a 6-7. If I’m swimming, I can get down to a blissful 1-2. On a day with extra stress, it goes up to a 11-12. My worst days are the 14+, but thankfully those are rare. For people without the advantages I’m able to access, like easy access to rest and lots of good medical care and supportive relationships, those moments are quite common, and contribute to making their condition completely debilitating.

There are good reasons to come to the present. I don’t want to live in the future anymore. Avoiding the present means, ironically, avoiding making the very changes that could impact my future in a positive way. Fibro can’t be cured, but there are lifestyle changes I haven’t yet completed that might really help things. And I don’t want to make any more big decisions based on an idealized scene that is unlikely ever to manifest. I’ve been on the path to finish school, but have been having second thoughts after realizing that all I’m doing is finishing a project I started long ago. I don’t have a constructive purpose in mind for my degree, and until I do, I don’t see the point in spending many thousands of dollars pursuing it, especially when those funds could be useful in other areas of our family’s life. Greg is enthusiastically pro my finishing school as long as it’s making me happy, but I have to admit that as much as I love going to class, it’s not the magic bullet of finding my life’s purpose that I’d hoped. And I’ve been slowly adjusting to the awareness that I will likely never have a regular job or career. I tried working part time last year, at a wonderful company. I was there eight months before I had to quit, from fatigue. It wasn’t stress from the job, it was simply not having enough spoons to make it through the day.

So, what will I do with myself? I’m 41 years old, I’m iffy on the advantages of finishing my expensive degree, and I’m not sure if I’ll ever be able to work. What will my life look like over the next decade? I’m not sure yet, but the willingness to stop hiding from the present is a start.

I neither need nor want anyone’s pity. I’d certainly love your understanding, and I’d love for you to take that understanding and send it on to others you meet who have an invisible illness. I appreciate – no, I treasure – the love and support of my friends and family. They are kind to me when I cancel plans, they’re gentle with me when I’m worn out and feel emotional. They don’t take it personally when I can’t come to an event, or when I forget something important. When a ball I’ve been juggling is about to fall, someone – most often my sweet husband or my wonderful mom – will step in and catch it for me. In short; I am very well cared for, and I am very well loved. I’m seen, and I’m heard. I also have the monumental privilege to inhabit a life where I can help take care of my family without needing to hold down a paying job. In addition, and this is no minor addition: I have access to excellent medical care, and insurance.

What I want you to care about, what I want you to be aware of on this day of awareness, is that over 5 million people in this country alone, have fibromyalgia. It’s often called an invisible illness, because you can’t tell someone has it by looking at them. The problem with invisible illnesses is that they often fail to have the validation they need for their victims to get the support they require. Imagine living with this disease and needing to work full time to feed your family, and not having access to excellent medical care. That scenario is my personal nightmare. Through in-person and online support groups, I know several dozen kind and brave people are who coping with that reality every day, and it viciously eats away at their emotional and physical health, their relationships, and their long-term economic security. Chronic pain is a soul-sucking, devastating condition that makes you doubt your self-worth in a culture that equates human worth with achievement and economic success. If you aren’t valuable to the economy, then you aren’t of value. There are many paradigms we need to change. This is an important one.

If you know someone with an invisible illness, and you want to help, ask them what support they need most. Even if it isn’t something you’re able to provide right now, just asking will show that you care, and that you’re validating their experience. That alone is worth a great deal. In your social circles, when someone mocks the validity of someone’s experience, step in and point out that these illnesses are as real as diabetes or cancer. These conditions might look prettier, but their teeth are still sharp.

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