If you have only one spoon today, I’m honored that you’re using it to read this. If you are fortunate enough not to know what “spoons” refer to, I’ll briefly explain that it’s a subjective unit of measure for people with chronic pain and fatigue issues, or other hidden illnesses. I’d like to share some thoughts that came up when I recently got some reader mail thanking me for writing about my experience beating fibromyalgia. (I see you! <3)
It puzzles me that virtually all of the online presence for invisible illnesses seems to be about emotional support and painstakingly tutoring “well” people in the details of our diagnoses. Aren’t we... trying to feel better? Shouldn’t we see a disease as an opponent, not a roommate or a spouse? Shouldn’t we be trying to GET MORE SPOONS??? Stop sleeping with the enemy and tell it to pack its bags because it is out of here.
First off, the concept of chronic illness drives me crazy. I believe that it is unscientific for a doctor or anyone else in the medical community to describe something as “incurable.” Just because nobody has cured it YET doesn’t mean it will never happen. Isn’t your entire job to try to cure and treat illnesses?
I’m pro-science. Let’s not get confused about that. I always get my flu shot and I’ll promote vaccinations to anyone who will listen. If a doctor gives me a prescription for antibiotics, I fill it and I take the full course. If I get a printout of instructions to do physical therapy exercises, or anything else, I follow those instructions. I’m obedient and open to input. This is why it upsets me so much when I’m treated with condescension by doctors.
The doctor who patted me on the shoulder and assured me that there were in fact zero ways I could modify my diet, exercise, or lifestyle to impact my thyroid disease. - FALSE
The doctor who told me he doesn’t “believe in germ theory” - UHHHH....
The doctor who told me I must have been misdiagnosed because “people don’t get better from fibromyalgia” and she knew, because her sister-in-law has it. She told me not to mention that diagnosis to doctors, because they would “automatically write you off.” Then she tried to prescribe me an anti-depressant, although I am not depressed. - HUH?
The point I’m trying to make is that just because you waited forty minutes for a fifteen-minute time slot with one overworked, obtuse physician who wasn’t able to help you, does not then mean that you are beyond help. Just because you’ve suffered for many years doesn’t mean you always will. Just because your pain is extreme does not mean it will always be that way, or that it will get worse. There are no reasons to believe that a physical illness will remain permanent and debilitating until the end of time.
I always felt that if I had to suffer, then let it be toward a purpose. Take notes on my condition and track my metrics. Record everything I tried on my search for relief and wellness. Use these notes to build a better treatment plan for the next generation of sufferers.
Then I take that attitude to my primary care physician, who invalidates my position. I’m game, try me! How many people like me constitute “anecdotal evidence” that is 100% disregarded by the medical community? How many more are laboring under false stories of sickness because this information is withheld from them?
I was diagnosed with fibromyalgia at age 23. I also had a thyroid nodule that disappeared without treatment. I suffered debilitating migraines for about ten years. I would say that I actively manage sleep issues that began 35 years ago, and I’m successful now about 90% of the time. Since then I’ve run a marathon, completed a mud run, and gone on several multi-day expeditions carrying a 40+ pound backpack. Now I’m studying the martial arts of Krav Maga and Muay Thai kickboxing. Four hours a week I repeatedly catch kicks, punches, and shoves, get thrown onto the ground, and do a full circuit-training workout. If I can think of any more extreme sport that demonstrates how fully I beat fibromyalgia, I might try it.
I’m a middle-aged woman with a history of multiple chronic illnesses. I crushed them.
I’m a formerly obese woman who fully recovered from thyroid disease. Now I wear a size XS.
How is it possible for someone of my age bracket and health history to be in better shape than I was twenty years ago?
How is it possible, when my doctors told me it wasn’t? How is it possible, when my doctors brushed off and invalidated my experiences? How is it possible, when I never took medication or had surgery?
There are three reasons.
First, I didn’t have a choice. My ex-husband divorced me when he realized how sick I was. I didn’t even have health insurance, much less another human who could help me get out of bed or fill in for tasks I couldn’t do. I had to get up and take care of myself because I was the only one I had.
Second, most of my insights and epiphanies and realizations and hypotheses came from TOTAL ACCIDENTS and coincidences. I would notice something that didn’t seem to make sense, and as it caught my attention, I would start to track more details while I tried to figure it out.
Third, being told that something is impossible is something that deeply annoys me. It’s stupid! It’s a wrong thought. It is unscientific, if I might be pardoned for repeating myself. I’ll trust a doctor who tells me to get a tetanus shot or change bandages or take eye drops. I’ll never, ever trust a doctor who tells me I’m stuck with some health condition for the rest of my life.
Nobody needs to run an obstacle course or go backpacking or start taking karate classes. That’s a high bar. All I’m asking is that we question this chronic illness paradigm. I ask that we allow for the possibility that we may one day be free. What if we’ve been misdiagnosed? What if we become “anecdotal” and have a spontaneous remission? What if we age out, as it often happens with migraines, because our hormone levels change over time? What if new research leads to new treatments, new medications, or new understanding of root cause?
Please stop sleeping with the enemy. Illness is not your body part. Illness is not one of your internal organs. Illness is not your heritage. Perfect health is your birthright. Track your metrics and keep asking questions until you have all the spoons you could ever want.
Technically, I’m on Day 369, but who’s counting? I don’t have to count how many days in a row I make my activity goals. For one thing, I wear a fitness tracker. More importantly, my body counts. My muscles and my heart and lungs are tracking every step I take. I can’t lie to my own insides.
There is something really satisfying about scrolling back and seeing all of these completed activity rings. The design worked. When I first received this Apple Watch as a gift for my fortieth birthday, I was still gimping around after an ankle injury. My athletic pursuits included sitting around and muttering to myself while reading ultramarathon manuals. On the first day, the record shows that I walked 1,044 steps and burned 30 calories. Fantastic! ...for a baby...
I got my first pedometer over a decade ago. They were pretty primitive in the early days. All they did was track motion. You could game them by shaking them back and forth. They also reset if they got dropped, and mine fell out of my pocket so many times that I had to start using a safety pin. I got one with a clip and that kept falling off, too. Memories... I remember the first day I hit what I thought was an important fitness milestone, and I ran off to show my friends.
A THOUSAND STEPS!
Um, the goal is TEN thousand steps. A thousand steps is like a quarter mile.
Let’s just say I’ve come a long way in twelve years. When I started out, it took me months to build to walking a thousand steps in a day. My daily average for 2017 is 11,055 steps, 4.9 miles, four flights of stairs, and 48 minutes working out.
Another interesting tidbit is that my daily average calorie burn from physical activity is: 407. This is why it’s impossible to “lose weight” simply through exercise. A bagel is about 245 calories, and a Costco muffin is almost 650. I could literally add ONE snack or make ONE lousy, inefficient food choice each day and completely wipe out whatever I burned from my workout.
(Flip this by thinking like a marathon runner. “If I eat this muffin that is nearly as big as my head, I can run at least 6 miles later”)
I used to think I could just skip this whole thing, you know, standing up and moving around. After all, doctors had told me all sorts of things about my health that included “exercise intolerant.” There is nothing like a diagnosed thyroid condition to give one a get-out-of-gym-free card for life, am I right? Then I went to the mall with my Nana, who was 75 at the time, and I watched in dismay as she struggled to get on the escalator. She was still working, still driving, still living a full life in every way. But stepping onto an automatic staircase with a handrail was physically challenging and intimidating for her. Suddenly, I saw myself in this context, as a younger version of my mother and grandmother. This was to be my future, too.
Unless I did something about it.
The kind of exercise that I do today would not have been possible for my female ancestors. By that I mean that they would not have been allowed. Women were legally excluded from competing in races like I do, we were legally excluded from gym memberships like I have had, we could not legally go out in public wearing the kind of workout clothes that I wear today. This probably has a lot to do with why there was no feminine tradition of strenuous exercise in my family. I had no examples and I had no idea what to do.
Start by walking. Walk 1% farther and 1% faster.
Start by paying attention to what you do during the day. Not what you “do” as in how busy you are, but what you DO, as in how much you physically move your body around. Notice your range of motion. Visualize your path through life. Where do you go and what do you see? Same stuff all the time? Hmm, seems boring.
Looking back at my activity level in my twenties, I feel embarrassed. I don’t move around twice as much as I did twenty years ago, I move around more than ten times as much! Middle-aged me could kick younger me’s butt without hardly trying. I just wish, I wish, I wish, I wish there were a way that I could go back in time and teach Twenties Me everything that Forties Me knows. Maybe I wouldn’t have had to spend so much time feeling tired, ill, and trapped in chronic pain. We had a happy ending, though. The future arrived and brought some pretty great technology with it.
Just a few years from now, activity trackers are going to be available for everything. They’re going to test blood glucose and monitor our skin for sun damage. I predict that one day, gamers will be the fittest people of all, because they’ll be controlling their avatars with haptic body suits or some kind of hologram thing that requires leaping, rolling, and backflips. Until then, what we have now has been enough to get at least one sedentary, obese thyroid patient with fibromyalgia up and moving.
I do it to myself just often enough to remind myself why I walk the line the majority of the time. What do I do? I relax, I push my limits, I convince myself that I’m just a regular robust person who can do everything without boundaries. There’s a grace period. Then it catches up with me. Maybe I notice when I slip into Yellow. Usually I ignore the warning signs until I’m back in Orange. Then I go into panic mode, because I still do remember what it’s like to spend every day in Red.
What am I talking about? I'm talking about chronic pain and the various oddball symptoms that I experience along with it. What is true for me probably is not true for most people. What is true for me probably also is not true for other sufferers of chronic pain and fatigue, because not all of us have the same conditions or the same symptoms. My recommendation is always to track metrics, to keep careful records, so that you can find patterns and change your inputs to attempt to mitigate your results. I think that if even .0001% of my experience can be influenced by my behavior, then it’s worth the attempt.
Yellow: I get a headache, or I stay up a few hours late, or I overeat past a 7 out of 10 on the hunger scale, or my weight goes up more than 2 pounds, or I catch a cold
Orange: I get headaches more than one day in a week, or I get a migraine, or I have shooting pains, or I experience fragrance sensitivity, or my weight goes up more than 4 pounds, or I feel full-body aches consistent with my fibromyalgia days, or I start feeling chilly all the time and I can’t warm up, or I have a night terror
Red: Symptomatic nearly every day, migraines on a regular basis, night terrors on a regular basis, lethargic, dizzy spells, get sick and seem to get sick with something else days after I thought I was better, often simply bedridden with pain and exhaustion, too tired or ill to read, lose a patch of hair on my scalp an inch across
Right now, I’m back in Orange and I’m really angry with myself. Sure, I have plenty of reasons. We went on two vacations in a row, we went camping and slept on the ground in the cold, I carried 40 pounds of luggage around for a few days, we changed time zones, I got bitten by insects. These are problems that I can ordinarily correct by sleeping an extra hour or two per night for a few days after a trip.
Ah, but this time, it seems that I pushed a little too far for a little too long.
Whether it’s a cause, a symptom, or both, my body weight is perfectly correlated with my various other symptoms. It’s something I have to watch. Again, whether this is or is not true for other people is up to them to discover for themselves through meticulously tracking their own health metrics. It’s not a body image thing, it’s not a self-esteem thing. For me, for me personally, it’s a functionality thing.
We came back from Wyoming, the camping part of our vacation, and I was right at the weigh-in I had before the trip, within two-tenths of a pound. Despite all the sleeping on the ground in the cold and all the carrying of the forty-pound backpack and the fifteen-mile hike, I felt fine.
Then we went to Las Vegas for three nights. I came back four pounds heavier, and I was a mess.
How’d I do it? I Ate All the Things. In Wyoming, we were eating a lot of starchy backpacking food, but the portions were controlled and we had crucifers every day. In Las Vegas? Vegas, well. I think I had a half-cup of broccoli. Other than that, it was all stuff I almost never eat: Airport food! Potato chips! Salty mixed nuts! French fries! Hot chocolate! Cookies! Juice with HFCS! Appetizers! Huge portions! Desserts every day! We even had “chicken and waffles” with syrup at VegeNation. No schedule whatsoever. You can start to see where those four pounds came from.
Four pounds doesn’t sound like much, does it?
If you can gain four pounds and not notice, good for you. If you can gain four pounds and not feel immediate adverse health effects, good for you. That’s awesome. If that is true in your life, by all means, celebrate in a way that is meaningful to you. But please don’t tell me about it. I’ve had more than my fill of conversations where other people brag to me about their resilience in these matters. I’m a fragile person and I have to walk a fine line.
I gained four pounds, and what happened?
Shooting pains from my heel to my thigh, triggering my restless leg syndrome to the point that my husband noticed from across the room
Low-grade headache every day for four days straight
Weirdly sensitive to fragrance - I smelled someone’s nail polish outdoors and it seemed like I was “still smelling it” an hour later. Then it was someone’s body spray. This hasn’t been a problem for me for about a decade.
Waking up twice a night
Constant feeling of irritability
One full day of “brain fog” in which I struggled to stay awake, much less do any work
Welcome to Orange.
I’m handling this state of affairs aggressively. First, I’m tracking what I eat and making sure my meals are consistent in schedule and portion size each day. So far I’ve dropped 1.8 pounds in a week, which means I have at least another week of Orange to go. Second, I’m eating four cups of cruciferous vegetables a day. Third, I’m taking melatonin on a schedule. I’m still waking up a couple of times a night, and waking up too early, but at least I’m falling asleep on a reasonable schedule. Fourth, I’m exercising an hour a day. In Orange, I can still get a couple of hours of blessed analgesic effect after my workout.
No naps. No anti-inflammatories.
I have strong suspicions that all of my weird symptoms are tied to thyroid function. I had a thyroid nodule when I was 23 that was thought to be cancerous. All the symptoms of disrupted sleep, parasomnia problems, migraine, weight gain, lethargy, brain fog, pain, fatigue, low body temperature, and fragrance sensitivity were fully in place at that time. They’re my flags, indicating that something is off in my world. This is why I make exercise my major priority when I start to slip through Yellow. It’s the one thing that reliably seems to reverse the trend.
When I work out, I don’t feel as cold all the time, the headaches and night terrors disappear, I can sleep through the night and wake up feeling rested, and my energy level goes from a 6 to a 9. I feel like every hour I work out buys me two pain-free hours and an extra hour of solid sleep. That’s why I do it, even when I feel physically horrible and it’s the last thing “my body wants.” I push through and do it because I know I’ll get worse if I don’t.
I’m back in Orange, but I feel like I’m inching back toward Yellow every day. Here’s hoping that if I stay on track, I’ll be back out of crisis mode by the end of the month. It’s my wish that sharing my experiences might be of help to someone else in my situation who is desperately searching for answers. Track everything, be consistent, and keep holding on in the belief that a 1% improvement is always possible.
Flattering as it is to think that body image must be my main reason for working out, that isn’t even on my top ten list. However I look is nothing more than an inescapable side effect of the other things I do. The main reason I work out is that when I stop, even for a day, I feel gimpy and crooked.
Top Ten List of Reasons to Work Out:
10. Getting charged rent for apartment gym and too cheap not to use it
9. Compare myself to fit people 10-50 years older than me
8. Maintain ability to sit on the floor and get back up again
7. Can run up and down stairs during power failures
6. Opportunity to catch up on magazine reading
5. Almost all clothes sold in my size actually fit me
4. Maintain necessary fitness level to go backpacking
3. Save money by owning only one size of clothing
2. Chance to burn off occasional pancakes, cookies, etc.
1. Skip a day and get a kink in my neck.
Being fit is really convenient. It’s worth it just for the annoying problems it eliminates. I took a “rest day” on Saturday and spent the whole day feeling like someone rolled me down a flight of stairs. After my workout the next day, I felt so much better, especially in my neck and shoulder, that my “rest day” was more like a “pest day.”
I’ve had problems with my neck since I was 9 years old. I woke up one morning and couldn’t move my head, and my mom took me to the doctor. A stiff neck could have been a sign of serious problems, and I feel fortunate that I didn’t have any of them. I just slept crooked. This has been a perpetual problem in my life, exacerbated by carrying heavy school bags, commuter bags, and luggage. When I took up running, I was extremely surprised and elated to discover that the thousands of micro-movements from swinging my arms had somehow finally loosened up this stiff neck of mine. Walking helps, too, although it seems to take more miles to reach the necessary amount.
I hurt my ankle in 2014, and I had to quit running for long enough that my neck has started to seize up again. Now I’m back on the elliptical trainer. I’m getting ready to get back on the road again. It’s only been a couple of weeks, but already I’m feeling the difference between workout days and sedentary days.
Loosening tight muscles and extending range of motion are reliable ways I’ve found to make my neck feel better. Another thing that I get from working out is the analgesic, or pain-killing, effect. The first time I felt a runner’s high was the first time I had felt completely pain-free in a dozen years. A radiant, glowing sort of euphoria spread through my entire body. Nothing hurt. Nothing! Nothing hurt anywhere! If it had only happened once I would have thought it was a miracle. It turned out, though, that I could get this beautiful feeling on demand.
It hits me at about the 45-minute mark of very strenuous exercise. I don’t get it from walking. It comes from running at a particular pace, including steep hill climbs and stairs. The analgesic effect tends to last for 2-3 hours after the end of my workout.
I found that running longer distances, starting at the four- to six-mile mark, would give me three or four hours a day of being completely pain-free. It wasn’t just that, though. Swinging my arms thousands of times was loosening my tight neck and shoulders. Running for at least 45 minutes was giving me a few pain-free hours. Running was also improving my posture. The importance of this can hardly be overstated. My weak upper body had my shoulders rolled forward from years of typing and doing data entry all day. New muscle strength helped me to become more upright in my posture even when I was sitting around. The difference shows up clearly in photos.
Running changed my body in other ways, too. I had better posture and more muscle. I had these 3-4 pain-free hours. My neck and shoulders were loosening up. I started to sleep better. I got more restful sleep and I started sleeping longer without waking up. I learned also that I never had an episode of night terrors on a day that I went for a run. As long as I ran at least once every three days, I was protected.
Other things in my life changed. Being pain-free makes every single thing in life look different. I generally started having more energy and being more fun to be around. Sometimes I would run up in the hills and start bellowing random songs or making up song lyrics. Everything seemed funnier. At the worst of my chronic pain problems, my daily mood was probably about a 3 out of 10. As a runner, my daily mood was more like a 9! Everything seemed awesome. I would already be planning my next run while I was still running my current route.
Then it caught up with me. My stupid refusal to spend even five minutes a day stretching, after four years, had resulted in some tight muscles and an overuse injury. I continued to train on it, because I’m stubborn, and because if you keep your exercise-induced analgesia going long enough, you don’t feel the pain you should be feeling when you push your body too hard. It wasn’t until sharp pains started waking me up in the middle of the night that I knew I had to recuperate. The realization of how dumb and self-destructive I had been added to the overall mopey feeling of not being able to run.
Even though my only real exercise in the past two years has been walking 3-8 miles a day, and the occasional yoga session, I’ve kept many of the physical changes that I earned through those years of hard endurance workouts. My posture is still better. My pain threshold feels like a thousand times higher. I haven’t had a migraine in over three years. I’ve only had night terrors twice in that time period. I can still fall asleep a few minutes after going to bed and sleep a full night without melatonin. My body composition still includes more muscle, less fat, and a lower body weight. I still wear the same clothing size I wore when I ran my marathon. I haven’t managed to keep the looser muscles in my neck and shoulders, though. The message for me is still the same: work out or be crooked.
Most days I don't work out. It's true. I don't work out AT ALL. This is the exact kind of thing a thin woman isn't allowed to say. Like I'm going to sit in a restaurant, throwing a giant chimichanga down my gullet and talking very loudly about how I can eat whatever I want, and then they find my body in a back alley because someone in ketosis couldn't bear to listen to another word. Anyway. The entire reason I would talk about something like this is that it touches on so many major fallacies about fitness and weight loss.
First among these is that there are "naturally thin" people. I've even been told that I am one of these fabled creatures, and I laugh because I know differently. The difference between "naturally" thin people and the rest of us is that they acquired habits early in life that the rest of us have to learn as adults. Often, they aren't even fully aware that they do anything different. They eat and move a certain way, as do most or all of their relatives, and they think what is habitual to them is genetic, or a part of their personality. Why should we think differently when even they themselves don't realize the truth?
The answer I most did not want to hear about weight loss is that it's absolutely 100% about what I eat. I had thyroid disease, and I was still able to lose weight by changing my diet, whereas I gained 8 pounds while training for my marathon. Work out because you love it and you want to be strong, not because you have any illusions about weight loss happening at the gym.
Weight loss doesn't happen at the gym! We go to the gym to LIFT weight, not to lose weight.
Or, of course, we don't go to the gym at all.
Don't get me wrong; I love going to the gym. I have several different workouts that I enjoy, and I'll cheerfully choose one based on whether someone is in my way or hogging equipment that I like. I'm always game for learning a new exercise or training with someone else who can teach me something. It keeps things fun. I go through phases of being at the gym for up to 90 minutes at a time, most nights of the week.
And then, of course, I get into long ruts of not going. Like everyone.
What do I do to continue fitting in the same clothing size then? I claim that it's not genetics, so what's the secret?
The secret is, like I said, that weight maintenance is 100% about food, not exercise. I can eat an extra 500 calories in five minutes - it's called 'cake' - and it would take me at least 90 minutes on the elliptical to burn it off. This is partly unfair, because I am a short person with a small frame, so the standard slice of cake is meaner to me than it is to most people. The inverse way to look at this is that, since distance running is my preferred workout, the more I run, the more cake I can burn off. OR, the more cake I eat, the farther I can run!
What if you didn't have a sweet tooth, so much as that you have a previously undiscovered mutant power of endurance sports? Worked for me. *shrug*
The other thing about not working out is that we don't think of our background activity level as "a workout," although IT IS. It most definitely is. For instance, I spent most of the day I wrote this nursing an eye injury and sitting in a waiting room in urgent care. According to my activity tracker, I walked 4.5 miles and climbed five floors' worth of stairs. I was like, "What stairs? Did I climb stairs?" We got rid of our car, so we just walk everywhere, and I don't think of it as working out. Why? Because it's not hard anymore. I get sweaty pretty easily, so if I don't break a sweat, I don't feel like it counts. It's only "a workout" if I feel like I'm pushing myself.
My background activity level is far, far different than it was when I was fat. How so?
I walk about 50% faster
I walk 4-10x farther every day than I did 10 years ago
Six miles in a day is fairly common for me now
I climb stairs faster and far more often
I "bustle" around the house
My range of motion is much broader: reaching up, crouching down, climbing on stuff
I carry heavier weights more often
I do strenuous tasks myself that I used to ask A Man to do for me
I make a point of avoiding sitting down
I sleep about 50% more
I don't use my activity level as an excuse to "earn" "treats" (if I want to eat something, I just put it in my pie hole and eat it)
I eat basically the same stuff every day, so my intake is predictable while my activities are variable
What I learned the year I ran my marathon was that it takes me 38 miles of running to burn off one pound of fat. It "should" only take 35 miles, which means either I run too slow, or I burn fewer than 100 calories per mile because I'm both slow and small. Either way, it's a moot point. I'm more interested in doing things efficiently because I have a short attention span. Also, once I get curious about what someone else is doing differently than me, I can't let it go; I have to find out.
What is it like to feel strong, fast, and athletic? I wanted to know before I die. I figured I could always change back.
Pushing my physical limits to do an adventure race, go on a multi-day backpacking trek, and run a marathon changed everything I felt about being inside my body. I now know things about my capabilities that I can't un-know. I can eyeball something and know I'm strong enough to pick it up. I look at a map and think of walking somewhere (or running) and I know from experience that I'm quite capable of getting there and back without getting tired. I do things routinely that in the past I wouldn't do under any circumstances.
I used to spend quite a bit of my time nursing a migraine or otherwise experiencing too much fatigue or background pain to do much besides lie in bed trying not to move my forehead. After losing the 35 pounds and learning to eat sufficient micronutrients, suddenly my sleep problems and the migraines just... went away. A certain amount of my background activity level is just reclaimed from former "out of spoons" days. Again, that was 100% dietary.
As a newly athletic person, I now feel that most of my chronic pain and fatigue problems came from chronic sleep deprivation, micronutrient deficiency, and general lack of physical fitness. My body composition included very little muscle. My cardiovascular fitness was very poor. Of course I felt tired and cruddy even on my best days! I get tired just picturing my own posture from that time. I try to send little love messages to Past Me from time to time, but it just annoys her and hurts her feelings. She isn't ready to listen to me yet. I try to tune in more to Future Me, the Elderly Me, and hear what advice she has. It always seems to include getting stronger, building bone density and muscle, and retaining my ability to sit on the floor. Hopefully that won't feel like a workout.
It happened again just the other day. I got into a conversation with someone I had known socially for some time, a physically fit person who often talks about nutrition and healthy living. She shared that she had been diagnosed with a serious illness and that her doctor had told her there was nothing she could do about it through lifestyle modification. She wasn't any more impressed with this prognosis than I was when I got mine, and she set about it proving it wrong. In her case, it was an autoimmune disorder that can result in weight gain, fatigue, and joint pain, and the only known treatment is a lifetime on medication. Strange that, years later, nobody would guess she had ever been ill.
My radar is always pinging for stories of this nature, and I run across them all the time. Mine was an endocrine disorder. The story I just told involved an autoimmune disorder. Recently, I reviewed Shawn Stevenson's book Sleep Smarter, in which he shares how he reversed his degenerative disk disease. My husband had two herniated disks in his spine, and they healed. My brother broke his back in three places, and not only did his spine heal, but he goes snowboarding like nothing ever happened. These are not conditions like the common cold; these are serious problems. They would have been, anyway, decades in the past. They might still be, for the ordinary sort of person who accepts lame, textbook advice from a conventional physician.
Now, I believe in Western medicine. I'm vaccinated for everything I can be, I get the flu shot, and I'll look forward to more vaccinations as they are developed. If I'm prescribed antibiotics, I take them as directed. I go to the doctor when I have to. That, though, tends to be when I need a rubber stamp on a referral to a specialist. My most recent doctor is no good for much else. When I had my first appointment with her, I told her about my history with overcoming fibromyalgia, and she told me that I must have been misdiagnosed, because "people don't get better from fibromyalgia." She believed this because her own sister-in-law has it. I hope the sister-in-law isn't her patient. I also wonder about a medical training system that teaches physicians to brush off anecdotal reports from patients who healed, rather than enrolling them in some kind of study. Examine me! I'm right here and I'm willing!
One of the biggest issues with the ongoing professional development of physicians is that they spend their days with ill and injured people. Healthy, fit, active people only go to a doctor when there is an immediate need. Therefore, there's no feedback loop of information from people who are succeeding in being well. It's common sense for a doctor to say, Well, this is what tends to happen and doing this for the majority of patients tends to work out okay. It would not be common sense for a doctor to say, This illness derives from the patient's comfort zone, so dramatic lifestyle change will probably be necessary to beat this thing. It doesn't even seem to be common sense for a doctor to say LET'S BEAT THIS THING!
Another issue is that people in the medical field tend to be over-scheduled, exhausted, and burned out. They don't necessarily have time to keep up on the cutting edge of new research. If there were no educational requirements for them to learn anything about nutrition, for example, why and when would they pick up extracurricular information on their own? If they themselves are not models of peak health and fitness, can they really teach their patients how to live this way? I've had precisely one doctor who was anywhere near my fitness level, and she told me I inspired her to train for a triathlon. My dental hygienist told me I inspired her to ride her bike to work. My health professionals take health advice from me, and that's either a great thing or a complete travesty.
The point of all this is that it is UNSCIENTIFIC to tell patients that their conditions are incurable. It is UNSCIENTIFIC to rule out nutrition or physical activity as even remote, fringe possibilities. The real question that should be raised is why anyone would deviate from a diet complete in all necessary micronutrients, and why anyone would remain sedentary for the majority of each day. There is a vast gulf between what research tells us about health, and what our doctors communicate to us. When my doctor condescendingly patted me on the shoulder and told me not to bother with lifestyle modifications, he instead should have encouraged me to do my own research and take detailed notes. I was only twenty-two at the time, and he could even have encouraged me to pursue a career in the health sciences. Instead, what I get from conversations with medical professionals about my remarkable recovery is skepticism and pushback. I'm not supposed to exist, so they act as if I don't.
My advice to anyone who "has a diagnosis" of any kind is to question it. If a doctor told you that what you have is unresponsive to lifestyle modifications, get a new doctor. Certainly nobody can stop you from tracking your own health data and reading as much new research as possible. I'm talking about actual peer-reviewed journal articles, not blogs, although blogs can be included if the blogger can demonstrate results with your specific issue. I accidentally cured myself of fibromyalgia and thyroid disease, but it was published research that led to reversing my problems with insomnia, night terrors, and restless leg syndrome. I also relied on published research to reach a healthy weight. I follow Alzheimer's research because I have had relatives die of that disease, and I believe I can mitigate my risks. I've made a regular habit of reading about new medical research for the last twenty years, and it's paid off abundantly.
The biggest difference between healthy people and chronically ill people, in my experience, is that healthy people refuse to accept a diagnosis as the final answer. We won't tolerate being ill any longer than we must. We never stop looking for more information. We do the utmost to take care of ourselves, eating, exercising, and sleeping as well as we know how. I've met a couple of people who claim they have "never been sick a day in their lives," but almost all of the fit, healthy people in my acquaintance have successfully overcome at least one major health condition. Whether these are supposedly genetic conditions, injuries, or lifestyle illnesses, there is always something one can do besides feel helpless and hopeless. Even if I got a diagnosis (and a second and third opinion) claiming I would die tomorrow, I'd still do everything I could to be the best possible patient and research subject. I need to feel that my pain and suffering matter in some way, that my experience can be used to further research and to help others with the same condition. Being ill doesn't have to mean being a victim. Being told I'm ill doesn't have to mean it's true, or that it stays true.
This body is temporary. I was born into a physical human body that will only be around for a measly few decades, twelve at the most. Nobody has lived to 130 yet, or if they have, nobody documented it. This body I have has certain limits. It can only endure a certain range of temperatures. It can only spend a limited time underwater without specialized equipment. It can only thrive on a limited range of foods, not including bark or pebbles. This body has joints that can only withstand a certain range of motion; its knees don’t want to bend backward. This body has bones that can only tolerate a limited force of impact or pressure. This body can be stopped in its tracks simply by inhaling or ingesting the wrong substance. The body I have won’t last forever, it can’t do everything, and in one way or another it’s inferior to every other animal on the face of the earth. No flight capability, no prehensile tail, no ability to see into the infrared or ultraviolet spectrum, no echolocation, no gills. Still, it’s mine. The body I have is the body I have.
This body has given me some trouble over the years. In my early twenties, I was diagnosed with thyroid disease and fibromyalgia. I had my first migraine at 22, and that became a regular feature of my life for the next fifteen years. There have been other problems: weird moles that had to be biopsied, impacted wisdom teeth, sprains and strains and skinned knees and second-degree sunburns. I’ve walked into stinging nettle and had a fire ant crawl up my pants. At these times, I often wish I were a floating consciousness with no body at all. Why can’t I be me without having to inhabit this inconvenient meat puppet?
The truth is that without the body I have, I would really freak people out. I need a human form to be able to hug people, hold hands, dance, and eat my favorite meals. The body I have makes it possible to participate in conversations. I can see and hear and taste and detect odors, which, alas, isn’t always such a bonus. I have the physical power to intervene, for instance the several times I have chased a toddler who was about to run full-speed into danger. As a floating ghostie I wouldn’t be able to do any of that.
The body I have is a useful vehicle. It’s “me” in almost every important way. It’s what my friends and loved ones recognize when they see me. My physical health, as it turns out, is almost completely responsible for my moods and attitude. When I eat poorly and lapse into sedentary behaviors, I become bored and sullen. The consequences of my less-than-optimal choices rebound and affect everyone I encounter, from those closest to me to the most briefly glimpsed strangers who happen to see my scowling countenance. It turns out that I look really angry when I’m in pain. Treating this human vessel respectfully, feeding it within the range that is biologically appropriate for humans, moving it the required amount, makes me much more pleasant to deal with. It also makes it easier for me to enjoy living in this world for the few decades that I will be here.
When I was ill, I blamed the body I have for all my problems. I didn’t understand that I could impact any of these health issues through my behavior or choices. I didn’t realize I had a choice. I wouldn’t have believed it if someone told me I did. I would have felt that that was a very unsympathetic, even cruel, thing to say. Only after I experienced it did I start to believe that whatever my body is doing on any given day is a snapshot, one frame out of a mind-bendingly long movie. It should be more intuitive than it is, but a body that begins as a single cell, is born into a tiny infant, and then grows continually for two decades is designed for constant change. Why is it so easy to fall into the trap of thinking we are stuck with whatever physical state we are experiencing at one moment on the timeline?
I needed to experience change in this body that I have before I could truly believe it was possible. First the change, then the belief. I could never have taken it on faith from someone else. Now, I see examples of other people who have changed their bodies in adulthood on a daily basis. It’s just like when you buy a new car and then start seeing that make and model everywhere you go. Vehicle, vehicle, same thing. Tens of thousands of people have reversed health conditions, gotten off medication, and/or lost hundreds of pounds. For mysterious reasons, those of us who still have physical issues never believe that we could be a part of this group. Other hominids may be able to change their bodies, but not us. We’re special, special in a bad way. We have been punished by fate and genetics to suffer and have a bad body! We accept this dire sentence, carved into stone by unfeeling deities. We can’t spend more than a couple of days half-heartedly dabbling at one change or another, never enough to convince us that it just might work if we kept going. We think a body must continue as it is, the only changes possible being negative changes. The body I have can sicken and gain weight, but it can’t heal or return to a lean, thriving form, even as I see cuts and scrapes return to quality new skin on a routine basis. Other people who experience healing and increased health must have better bodies than the one that I have.
The body that I have can do amazing things. It remembers to breathe and keep its heart, lungs, and blood moving even when I sleep. It recovers from illness and injury. Every time I have tested it to find out what else it can do, it rises to the occasion and meets the challenge. I’m 40, probably at the halfway mark of my life (if I haven’t passed it already), yet I am still continuing to discover new capabilities. I continue to grow extra muscle and become faster, stronger, and more agile. It feels as though I am aging in reverse. Despite my history of chronic illness, I have started to be satisfied, even impressed, with the body I have.
I’ll give you my version of the Four Noble Truths in a nutshell.
I was lucky. Enough parts of my life fell apart at the same time that I figured it had to be more than coincidence. I must have been basing my world on some false principles or incorrect ideas. I spent hours every day writing in my journal, going back over what went wrong, figuring out my contribution to my own problems, and imagining something better.
What went wrong? I developed a very painful repetitive stress injury that left me unable to do buttons or hold a cup. So that sucked. (Nearly two decades later, I still drop things a lot and hold my teacup in my left hand; the positive is that I can write and use chopsticks with either hand now). The painful RSI led to losing my job with the non-profit that I loved. That in turn led to my first husband asking for a divorce. That led to his opening a letter from the IRS, addressed to me, and withholding it until after the deadline had passed, just to mess with me. In rapid succession, I wound up in constant pain, with no money, no marriage, a pending workers comp lawsuit (apart from the two separate issues of the IRS thing and the divorce), and friends who were “choosing not to take sides.” The physical therapy burned holes in my skin. My fibromyalgia had nothing to do with any of this, but it was still a daily issue. Let’s just say that I had a lot to work on.
What I decided, in the hundreds of pages of intensive journaling I did during this period, was that I needed to change what I could. I needed to be as accountable as possible, and I needed to be WIDE OPEN to feedback and constructive criticism. Any clues I could get from anyone else, I needed to hear them, I needed to take them in, and I needed to keep them coming. I wasn’t doing too well by letting my ego and my sense of cleverness run things.
The other thing I needed to do was to be organized and persistent. Now, I would call that being a CLOSER. Always Be Closing. My journaling shifted to a running recap of issues I was trying to resolve and actions I had taken toward resolving them. My first success was with the IRS issue. Someone else’s income had been reported under my social security number, and I had a tax bill for over $8000 for money I hadn’t earned. I was so scared to make that call, because the letter my ex had kept said that I hadn’t contested the claim in time. I picked up the phone, explained why I hadn’t called sooner, and found that the agent was completely gracious. “This happens all the time.” (!!!) I was able to track down the W-2 of the person who actually had earned that higher salary and mail in a copy, and my case was closed. (What I would have done if this hadn’t been a coworker, who was willing to share her personal financial information, still is not clear to me). The downside of inaction would have been so bad that I knew I had to move forward.
During the course of my recovery from the disaster of my divorce, I learned something important. When you have to get up, you can. My pain from fibromyalgia was so bad at that time that I sometimes needed help to sit up in bed in the morning. Or I thought I did. When there’s nobody around to help, it’s surprising what you find out you can do. I learned that my pain was worst first thing in the morning, and that once I got up and started moving around, it was easier. I was eating barely enough to get by, and I lost 30 pounds in a few months. My pain went away for a few years. This should have been my first clue that excess body weight made my pain worse, but of course I ignored it and regained the weight as soon as I could afford to.
I kept up the habit of journaling whenever my stress level hit a certain point. I used my journals to work through the process of applying to the university. I used my journals to figure out additional ways to earn money. I used my journals to work out a schedule to pay off my consumer debt. I used my journals to work through a few romantic relationships, figuring out what worked and what didn’t work. I checked out dozens of self-help books from the public library and meticulously worked through all the exercises. I was trying to get to the bottom of why my life had quit working and what I was doing that other people weren’t, or vice versa.
Gradually, I came to the conclusion that I couldn’t start with my default as the baseline. I had to figure out a universal baseline and plan my behavior around that, even if it had nothing to do with the way I wanted to behave. Perhaps especially if the universal baseline had nothing to do with what I was doing. I figured there was a way to find a suitable career and advance in it. I figured there was a way to plan a budget. I figured there was a healthy way of eating and exercising. I figured there was a way to get to know someone and build a relationship without any of the misunderstandings of my first marriage. I decided I would learn what successful people did and copy them. If it worked for them, it might work for me, and if not, well, what I was doing on my own wasn’t working, either. I would keep researching and experimenting until I found an answer I could live with.
I was right about the accountability. That’s probably the single most important piece of advice I could give anyone. No matter what, it’s up to us to handle what comes our way, no matter whose fault it was. The IRS bill wasn’t my fault, but it was still my problem. Whatever caused my divorce, it was still mine to process and use for information. For whatever reason I developed fibromyalgia (spraining my back in an accident), it was my problem to try to manage. Nobody else could do it for me.
I was right about getting organized. It’s valuable in its own right. When my life was at its hardest, at least I had some semblance of a plan. Sometimes I would just make up things to try. In those days before Google, we had to figure out more for ourselves. It was harder but it taught me to be more resourceful and inventive. It also taught me that mental clarity is high on the list of great traits.
I was right that you can get up even when you think you can’t. I learned a deep and mystical secret, which is that grit and fortitude are there for the asking. Navy SEAL training teaches that most people quit when they’re at 40% of their physical capacity. I think I’ve made it to about 80% of what I can do. Anyone who suffers chronic pain, if you’re reading this, HEY, you’re not dead yet. You’re not even unconscious. You’re not even dizzy, or you wouldn’t be reading. You have more in you than you think you do. The SAME PAIN that we feel in a chair or on a bed, we can tolerate in other ways and other situations. Trying to rest and endure only leads to more pain, to another day just like the first. What I learned from training for a marathon is that DOMS (delayed onset muscle soreness) is pretty much exactly the same intensity as fibromyalgia pain. The pain I have endured in physical therapy was slightly worse than any pain I’ve ever pushed through at the gym. I bought myself my current level of strength and fitness by using the pain tolerance I developed through being chronically ill. I stopped feeling trapped by learned helplessness. I stopped reading the articles that talked about how difficult fibromyalgia is to treat. I tried telling my current doctor about my success story, and she told me I must have been misdiagnosed, because “people with fibromyalgia don’t get better.” That’s why nobody knows we can get better – because when we walk in and share our experience, the medical establishment ignores us. They used to tell me it wasn’t a real disease, until pharmaceuticals were developed to treat it, and now they say it’s real but there’s no cure. I say differently.
I beat poverty. I beat chronic pain and fatigue and became a marathon runner. I beat thyroid disease and (unintentionally, cluelessly) shrank my own thyroid nodule. I beat obesity. I beat pavor nocturnus. I beat migraine. I beat divorce and found love again; despite the odds, we’ve been together more than three times as long as my first marriage lasted. I beat the IRS. I beat the market and broke even in the crash of 2008. I could easily still be broke, single, fat, and in pain every day. Nothing was going to fall from the sky and make me better. Dissatisfaction meditation helped me figure out tiny pieces of my problems and take baby steps forward. I tried to make my life 1% better as often as I could. Where I am now, it’s hard to find anything to feel dissatisfied about. It gets better. It gets better, but only when we imagine how it can be better.
Out of ten days, I spent eight traveling and backpacking. Apparently this is a thing I do now. I just got back on Sunday. It is still really weird to me that I have gone from needing help to get out of bed in the morning, to hiking into mountain goat zone with a backpack. Both felt natural at the time. When did I turn into this bushwhacking, rock-clambering person?
On the first trip, I was the eldest of six in our group. This is both strange and not-strange. Almost every single one of the dozens of people we saw on the trail was under 30. Usually, though, backpackers tend to skew a bit older. On weekdays you get retirees. Most endurance sports include more older than younger people due to the cash flow issues. Mature people can afford the equipment, the gas, and the permit fees. We also tend to be better organized, mostly because we have more control over our schedules. Getting a group of half a dozen people to arrive at the same place at the same time can be pretty complicated, especially if most or all of them work unpredictable shifts.
We were fortunate enough to win the permit lottery and hike into the Enchantments, the same route that we did back in September. This proved to be an interesting experiment. We were able to add mileage and camp at a higher elevation, and then do a day hike yet further up the mountain. 5500 feet! It made me want to repeat the Portland Marathon (knowing I would be virtually guaranteed to run a PR). All told, we hiked fourteen miles round-trip, and ten of that while wearing packs. I’m not sure exactly how much my pack weighed, because I crammed more stuff into it after the “official” weigh-in, not wanting my husband to know just how much I was planning to carry. It was at least 40 pounds though.
Why would a 122-pound, small-framed person such as myself want to carry a 40-pound backpack 5000 feet up a mountain? This is the crossroads of minimalism and endurance training. On the one hand, I want to carry as little as possible just to prove to myself that I can do it. On the other hand, I want to carry as much as possible just to prove to myself that I can do it. Here lies a real conundrum. The truth is that I don’t really feel the weight, and I feel like I will wind up carrying more than that if/when I graduate to longer trips. I’d really like to hike the Triple Crown one day, and it seems like being able to carry seven days’ worth of supplies would make that more likely.
Minimalism can often involve quite a lot of stuff. For a backpacker, I’m on the middling-to-absurd end. For a suburbanite, I’m on the extreme end. What have I got in there? I don’t tolerate cold at all well, so most of the heavy gear consists of bedding and clothing. There’s the sleeping bag, air mattress, space blanket, and inflatable pillow. There are the three jackets, the base layer, the hat and gloves and buff and package of hand warmers. I put them on at night and I still sit there shivering; I go to bed at 9 PM more because I’m cold than because I’m tired. There’s the water and the first aid kit, because really. There’s the inflatable solar lantern and the folding chair for luxury. Then there’s the cookpot, the stove, the fuel, and the food. Here is where I can cut weight easily: I tend to bring boil-in-a-bag meals rather than dehydrated food. I’m perfectly capable of dehydrating my own backpacking meals, and I have done so, but it’s so much more work that it seems worth it to just haul a heavy pack. If I cut five pounds of food or gear, I’d almost certainly add back five pounds of gear I don’t usually carry, such as a machete or another base layer. If only I had a 3D printer that could make things out of squashed mosquitos.
The second trip was less physically taxing, but I’ll include it for comedic purposes. A raccoon tore my tent. I got some mosquito bites, and I finally had my beloved Therapik with me, but as soon as I pushed the button I found that the 9V battery had died. The batteries in my head lamp had also gone flat. I packed for cold weather again, only to find that it was over 80 degrees every day, and I hadn’t brought any shorts, swimsuit, or sunblock. I still have never used the sunhat I bought at Goodwill years ago for this purpose, and I have the sunburned ears to prove it. I didn’t bring quarters for the shower. We went to this park specifically in hope of seeing a condor, hiked five miles to the preferred viewing area, and saw nary a one. Just as I was taking down the tent on the way home, a fire ant crawled up my pants and bit my knee. Like it couldn’t wait ten more minutes for me to leave.
It turns out that the outdoor life has toughened me up considerably. I can now state that stinging nettle and fire ant bites rate about the same, as the pain is worse from the fire ant but it only lasts about half as long. I’m (almost) grateful that these things happened, because I was able to endure without setting off a migraine or a fibromyalgia flare-up. I used to be a frail little flower indeed. Now, I’m tougher than just about anyone. Maybe one day I’ll feel that I’ve proved my point and I can convince myself to pack a lighter bag.
YES!!! THIS BOOK!!!
If you are frustrated with your body, if you have poor body image, if you hate exercise and hate the gym, and especially if you’re procrastinating going to the doctor because you don’t want another lecture, then this is the book for you. Michelle Segar gets it. THIS is the book everyone should be reading in phys ed and in medical school. It talks about the difference in mindset between those of us who feel locked in struggle with our own bodies, and those of us who thrive on exercise.
I’m a marathon runner who used to have fibromyalgia, thyroid disease, and migraines. I also used to be obese. If anyone understands the complicated combination of negative attitudes toward physical fitness, I am that person. Segar understands that the missing key is how we feel about the very idea of moving our bodies. When we think it’s a chore, that we “should” do it, that we’ll be lectured if we don’t, or that it feels physically awful, then there’s no way we’ll do it. That’s deeply sad if moving differently is the only way to release ourselves from chronic pain, stress, and/or depression.
Recovery and healing count toward ‘physical activity’ too. Speaking from experience, physical therapy can be an exhausting workout. For some of us, we have as far to go from minus 1000 to zero, as others do to go from wherever they are to a marathon. I can also speak from experience when I say that zero feels like a victory when you finally get there.
No Sweat starts with what to do when exercise feels like failure and humiliation. What do you do when you’ve already made so many commitments you weren’t able to keep? How do you trust yourself to make more, when you’ll probably just let yourself down again? Segar cites a study saying that those whose motivations to exercise included “weight loss” and “better health” spent the least amount of time exercising, up to 32% less time than people with other fitness goals. We’re not able to think about the long-term future in any meaningful way, and if we want to succeed, we have to frame it in a way that feels like immediate gratification. For instance, my main reason to exercise every day is that I feel like a broken box of dry noodles before my workout, and then afterward, I feel like Mary Lou Retton on a sugar high. That only became my motivation several months after I started, though. The first several weeks didn’t feel good at all! I just believed that eventually it would, and I kept going long enough to prove it.
“It’s time to stop choosing the wrong reasons for exercising,” says Segar. Emphasis hers. This is just from the first chapter of the book, and it gets better from there. She is absolutely right. For some strange reason, everyone seems totally obsessed with body image issues right now. That doesn’t click with me. Whatever I look like, deal with it; it’s none of my business what other people think of my appearance. What works for me is to tune into how it feels to live inside my body every day. That used to be a place of constant pain and confusion. Once I learned to change my body composition and my postural alignment, once I fixed my nutrition and my sleep issues, I learned to tap into the natural analgesic (pain-relieving) effects of exercise. Instead of pain, I had a glowing, energized, pain-free feeling that lasted for hours each day. It changed my life. My motivation won’t be the top one for everyone, but everyone can have something. Whether that’s time for some private headspace, the resurrection of a buried passion like dance or yoga, a way to exorcise anger like kickboxing, or something else, reading No Sweat can probably help you find it.
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I've been working with chronic disorganization, squalor, and hoarding for over 20 years. I'm also a marathon runner who was diagnosed with fibromyalgia and thyroid disease 17 years ago.