I’m going to write about body weight, because this year it’s relevant to my interests. If this is triggering for you, I apologize, and hopefully you already know to protect yourself by closing tabs and stopping yourself from reading further, because this isn’t directed at you. I’m writing about my body, which belongs to me, and my body image, which is A+ and also belongs to me. I can’t write about other people, their bodies, or their body image because those are all outside of my expertise. Probably what I write will not reflect the experience of most people who ever lived. I say that because I rarely read anything written by other people about their bodies that fits my feelings or my life. If you’re still reading, then maybe you’re curious what it would feel like to be someone else?
Someone who likes being a person in a body? Someone who experiences this thing called “my body” as cooperative, convenient, and useful?
Okay, so the main way I relate to having a body is that it is the vehicle I use to carry my consciousness from place to place. Another way I use my body is as a test lab for the performing of interesting experiments. There is a huge amount of divergent “health” “information” out there. The way I make sense out of it is by trying it out on myself and seeing how it goes.
The first thing I discovered is that sleep is my main health priority, without which nothing in my life works. Being sleep-deprived makes me moody, lowers my energy, and apparently interferes with my immune system. I sleep as much as I can and I feel totally entitled to it.
The second thing I discovered is that my own personal body weight is strongly correlated with what used to seem like random, unconnected issues. The heavier I am, the more migraines I get. The heavier I am, the more often I get colds and flu, and the longer it takes to recover. There is a certain specific body weight, above which I get headaches and night terrors, and below which I do not. Above that weight, I’m prone to dizzy spells, and below that weight, I’m not. I have lurking suspicions that all of these things are somehow connected to thyroid function, to the endocrine system, or to hormones in general.
These are the reasons why I monitor my body weight. Apparently other people do it because they care what other people think of their appearance? Or they tie it to some kind of performance metric so that they have a stronger sense of autonomy and control? Perfectionism? Self-loathing? I dunno. I don’t even clean my house for those reasons, although I do run a tight ship. I pay attention to how much I weigh because when I don’t, my life sucks and I feel like crud all the time. When I do, it’s straightforward and fades into the background. It’s just the simplest way I’ve found to keep tabs on the most obvious, easily tracked trend line on my physical dashboard.
(I can step on the scale every morning, and I don’t have to use a measuring tape on various parts of my body, draw my own blood, or take other kinds of samples which I lack the laboratory equipment or knowledge to analyze).
I like numbers. They feel like a neutral feature of the world, like... sand. Or pebbles. They’re just there and they only have the meaning that we ascribe to them.
All right, so here’s what happened. I’ve been training hard at martial arts all year, and along the way, I gained a bunch of weight really quickly. Some of it was muscle, and most of it was adipose tissue, also known as excess body fat.
This became a problem because, for the first time in 3-4 years, I started having headaches and scary sleep episodes again. I kept thinking, Oh, that’s just a fluke, until one morning when my husband remembered me doing stuff in my sleep and I did not remember. I HATE THAT. There’s basically nothing more humiliating and dreadful to me than when I... sleepwalk, flail and hit my husband, scream, have conversations... DO THINGS in my sleep and my conscious mind has exited the building. I’d genuinely rather have incontinence than this. It makes me feel like I’m developing dementia. That was the trigger. I absolutely cannot allow myself to continue up that road. My sleep gets shattered, and when that happens I can’t focus during the day, it destroys my productivity, I feel weepy all the time, and I just start getting sick a lot. None of these things are what a fork is for.
Time to slow my roll.
I knew exactly how I’d gained the weight, because I’ve done it so many times and also because it was somewhat intentional. I had this idea that if I added more muscle, everything would be fine. Apparently not. I think what goes on in my body is that whatever blood sugar conversion process is happening when I up my calorie intake and add body weight, whatever it’s composed of, that’s the thing that triggers all my other health issues. I was doing it too quickly.
My goal was to gain 15 pounds of muscle in a year. I put on 4 pounds the first month, maintained for three months, and then put on an additional 5 pounds the fourth month. May 1 I weighed ten pounds more than I did on January 1. By my birthday I’d gained a full-on fifteen pounds. Okay, that would be AMAZING if it all came from muscle! Muscle on a female frame of my size happens at a rate of about a quarter-pound per week. Let’s say I had 8 pounds of muscle which I dearly loved, and 7 pounds of (additional) extra body fat which I did not want or need.
What to do?
Handle it in a competent, businesslike manner, the same way I would pay off a debt or clean out a closet, of course. The same way I tackle most problems.
It was surprisingly simple, again because I know what I’m doing. I had gained the extra weight by adding about a thousand calories a day to my diet, often in the form of French fries and cake. This was on the advice of my husband, who noticed how exhausted I was when I would come home from class, and suggested that I eat more. Once I built my endurance, stamina, and strength from training hard for 8 months, I was ready to switch gears.
This is what I did. I set a deadline: my wedding anniversary trip. I set a goal: two pounds per week. I made guidelines, which I followed: keep a food log every day; avoid desserts, fries, appetizers, and sweet drinks for the duration; add cardio. I was very, very pleased to find that I could handle an hour-long martial arts class and an hour on the elliptical on the same day!
My arms and legs have been getting really strong, and I’ve been seeing muscle definition I never had in my life before. I also had this tubby belly. As far as I can tell, almost all of the 8 pounds I lost over four weeks was sitting right there, right in the stroke-risk, heart-disease sector of my midriff.
During the process of cutting weight, I felt more energetic. I’d really missed my cardio workouts, and it seems like it has helped my overall mood and energy level. I also use that time to read the news and catch up on my email, which is helping me to feel more organized and productive. The result was that not only did I make my goal, I came out on the other side feeling like I had my life more together.
My hubby bought me a new bikini for our anniversary, which, let’s just say they come in every size for a reason. If you want to wear one, wear one. For us, it symbolizes a commitment to spend more time relaxing in the hot tub.
For my next trick, I’m going to work on learning more core exercises. This is the one obvious area of my body where extra muscle and attention would be interesting and useful. I’ve never known what it was like to have a strong core, and I’m determined to find out.
Life is an endless tidal wave of BS. Accepting that is a great starting place. It certainly makes Stoic philosophy feel more relevant. There’s this other point, about the Four Noble Truths of Buddhism, which I explain thus:
Sometimes, pain (trauma, drama, difficulty, suffering) comes in the form of natural disasters or external events of vast scale. We cope as well as we can. Usually, though, difficulty comes from within, from our expectations and assumptions. We cause ourselves significant grief by setting up a lot of demands and rules that other people and the world in general never seem to quite meet. This is part of how we convince ourselves to believe in difficulty.
It’s difficult when we want people to behave in a certain way, and they won’t.
It’s difficult when we expect certain actions to lead to certain results, and they don’t.
It’s difficult when we expect change to come on its own, in a form we find acceptable, and it doesn’t.
It’s difficult when we insist on getting the results without the effort, and we can’t.
What if, instead, we believed in ease? What if we believed that really, things are simple and straightforward?
Nobody is quite as good at overcomplicating and overthinking things as I am. See? I’ve claimed this extravagant level of difficulty for myself. I buy into it as a part of my identity. I’m proud of it in a way. Look at me! I’m an insomniac! I’m a stress case! I’m tightly wound! I have a thin skin, too! I pledge allegiance to my difficulties.
I got curious about all of this, and started wondering what would happen if I just tried to Do the Obvious instead. Whenever I wanted to try something new, I would first ask, what is the most obvious advice that anyone would give to a beginner? What’s the checklist? What are the obvious first steps? Is there a FAQ? Is there a manual?
It got even better when I started asking whether there were basic checklists for things I was already doing. What if I just looked at my daily life and tried making it as easy as possible?
That question led to the systematic application of minimalism to every part of my life. More love, less of whatever else this is. Wherever I can get rid of stress or self-imposed obstacles, that’s a place where I can let more love in and breathe more love out.
In a way, belief in difficulty is a belief in fate, in evil, and in hopelessness. Let’s throw our hands in the air and collectively sigh OH WELL. Nothing could be done. Well, that sucked.
I claim that with free will and determination, we can do anything. We can’t always stop every bad thing from happening, like a hurricane, but then not every natural disaster is “bad.” Is it bad when there’s a giant storm on the planet Jupiter? Is it bad when there’s a hurricane in the middle of the sea if it never reaches land? If we define something as “bad” only when it causes human suffering, then can’t we do more to eliminate the human suffering that we can affect today?
Starting with our own?
The thing about belief in difficulty is that it restricts us. When we feel caught up in stress and drama of the ordinary sort, we feel too burned out and powerless to do anything to change our own situation, much less anyone else’s. We can easily slip into a position where we’re making our problems INTO someone else’s. Our desire to vent and complain becomes someone else’s headache. Our refusal to address our own problems until they reach breaking point can become an urgent crisis for someone else. When we feel that we have no free will, then we feel like our actions don’t matter. As if that were possible. As if it were possible to even exist without making an impact on the world!
As an example, I had a bad breakup once, many years ago. Looking back, the immediate cause was that I got sucked into a lot of negativity and drama on an internet listserv. This was long before we had a pop culture understanding of trolling or flame wars. I didn’t have the perspective to see that the hours I spent reading and responding to these threads was a complete waste of time that did nothing to serve me or anyone else. My boyfriend was the one person I thought I could talk to, the one place where I went to process all this junk. He tried. He asked me why I was talking to these people and made a few suggestions, which I took to mean that he didn’t understand and wasn’t being a good listener. I bought into a reality in which an email list was more important than my romantic partner’s companionship. In retrospect, I never would have spent five minutes on this activity. Think of all the good books I could have read instead.
Life is easier for middle-aged people in so many ways. I’d never want to be that young again, or at least not without all my hard-won experience.
I no longer believe in the difficulty of feeding trolls. I no longer believe in the difficulty of reading the comments or engaging with naysayers.
I no longer believe in the difficulty of the chronic pain and fatigue that I suffered as a young person. This might sound cruel or flippant to someone who is currently living that reality. I only mention it because every source I consulted when I was ill affirmed that I always would be, and there was nothing I could ever do about it. This is patently false. I got better, and probably other people could, too.
I no longer believe in the difficulty of poverty, and again, see above. It wasn’t instant, but I eventually learned how to earn more and get a job with benefits. There is plenty for everyone in this world, and it’s only our belief in scarcity that restricts that natural abundance. We feel threatened by the very idea of having to share, and that’s the first sign.
I no longer believe in the difficulty of poor body image. That comes from strong self-efficacy. I have it within me to learn how to do anything, to eventually reach any goal I set for myself, to hold myself accountable, and to go after what I want. I’m allowed to build muscle, get sweaty and muddy, explore the world, expand my abilities, and look however I want. If someone else has a problem with that, why should I care? My body isn’t about you.
There are difficulties that still captivate my attention. As I recognize them, I work on them. I simply question myself, Is that really true? Do I want it to be?
Wherever I have a difficulty, it’s certainly a smaller, less significant one than someone else’s. If it’s difficulty that bothers me, then logically I should care about the worst difficulties, not just those that affect me. Injustice where it’s worst, not injustice that I feel personally. Crisis where it’s worst, not just mine.
There’s a guy sitting two tables from me who is wearing glasses with broken frames. One arm is completely missing and they’re sitting catty-whampus across his nose. He’s tilting his head to the side so they don’t fall off. This is a guy who believes in difficulty! Surely there are several charities that could help him, or maybe someone would be willing to fix his glasses for free if he asked nicely. Maybe he could buy another pair at Goodwill and scavenge an arm, or fit his existing lenses in different frames. Maybe he could find a twig or a piece of cardboard and tape it into place. A thousand things would be easier than what he’s doing right now. He’s playing with his smartphone, so I somehow wonder whether money is the problem?
Looking for a demonstration of a principle, evidence is usually close to hand. I feel lucky that I happened to be writing about this topic as this guy with the one-armed glasses sits nearby. Well, that was easy! I turn my attention to areas of life where everything is effortless and easy. I always have the opportunity to focus on my breathing. I always have the opportunity to appreciate my loved ones. I always have the opportunity to let go of my past hurts. I always have the opportunity to look to my own behavior, change my own perspective, and improve my own attitude.
My bicycle is celebrating its 21st birthday this year. In some ways, I feel like it’s a birthday for me, too, because I believe this very same bike may have saved my life. I credit it with the surprising and sudden disappearance of a thyroid nodule that could have been cancerous. I’ll never know, and neither will my doctors, because I was lying on the gurney waiting to be wheeled in for the biopsy when an ultrasound revealed that it was gone. I got to go home without any holes in my throat. The next day, I was back on the bike.
This poor old bicycle has moved with me something like twenty times. We’re on something like its fifth set of tires, second seat, second set of grip shifts, second quick-release, second chain, fourth set of brake pads, third headlight, second tail light, and even a second lower bracket, because the first one was filled with water when they did our last tune-up. I’m ashamed to admit that my dear old bike spent the past year on the porch, mere yards from the cruel salty sea. I hadn’t been for a ride in something like three years.
I called a local bike shop that offers free pick-up and delivery. Since my husband and I no longer have a pickup truck, it was this or push my flat-tired old rust bucket a mile and a half down the road. When the repair guy came to get it, one of the brake pads actually fell off. So that was embarrassing.
They came back a week and a half later. Repair guy lifted my old bike out of the back of the truck. The light hit it, and it gleamed a deep red, just like the day I first saw it in the warehouse. My bike, Old Paint. A frisson of delight and excitement hit me.
Hey! There you are!
Monday morning, I set off on my first ride. Two miles and a bit, straight up a grinder of a hill to my martial arts gym.
I was a mess. I was leaving late and I didn’t realize that my helmet and all my other gear were still packed away in a storage tub. Executive decision: Be careful and get it out when I get home. My center of gravity was off, and every time I came to a stop light I’d feel like I was going to tip over sideways. When I would pass another bike going the opposite direction, I’d instantly have this strong visual that we were going to smash into each other head first. The only thing that really went well was that I still remembered my hand signals.
Then it came time to lock up. I had to go around the building looking for the bike rack I hadn’t thought to scope out in advance. Then I had to remind myself of how to position my bike so that the U-lock would go around both the rack and the frame.
I walked into the gym, late, with the crotch of my tights sweated out and looking very not glamorous at all.
The return trip was downhill. A couple of times, I got off and walked, because I felt like I was just going too fast.
That’s fair, because I had to get out and push uphill a few times, too.
By the time I came home, I had ridden almost five miles. That was enough to reawaken my forgotten identity as A Bike Commuter. A Cyclist. An adult child, tooling around on a bike known as Old Paint. My seat was adjusted to the right height and it just felt right, like comfy pajamas if they made your butt hurt later.
That’s the tricky part. The next morning, when I got back on the bike, I remembered exactly what it means to feel saddle-sore.
I know exactly where my hip bones are!
Every single time that I’ve quit riding my bike for an extended period, I’ve had to suffer through a few days of saddle soreness. Every single time, I “remind” myself not to let this happen. “I should at least sit on the bike in the living room, even if I’m not riding anywhere. Just sit there and read a book or something.” Ha. It never happens. No matter what type of exercise you choose, the easiest thing in the world is to quit doing it, never noticing the 1% fade from day to day to week to week to year to decade. Until you try to get back on that horse, and then you do.
I found my helmet and my gloves and my panniers and my handlebar bag and the extra keys to my U-lock. I had to wipe everything down, because it was, heartbreakingly, covered with dust. Like my hopes and dreams of one day completing a triathlon.
We got rid of our car over a year ago, which is relevant. My husband bought a folding bike a few months ago, and he’s been using it to get between bus stops. Since my bike was a rust bucket on the porch, I hadn’t been able to go anywhere with him. Now that I’m back on the bike, we can go together. It expands our ambit and the types of things we can do as a couple. With my panniers, I can do more types of errands, carrying more types of loads. Most importantly, I’m cutting my transit time to and from the gym in half. Being back on the bike is a positive in every way.
The strangest thing just happened to me. I was reading someone else’s book, when this insight spontaneously dropped in my mind. I snapped to attention. THAT’S IT! All these bits and pieces of family lore sprang into context. I realized that part of why I was able to fully recover from chronic pain and fatigue was that I’ve deeply internalized a series of family legends about healing and trauma. Maybe the reason other people haven’t had the same experience is that it hasn’t occurred to them that they can?
First, there’s my story. I was diagnosed with a thyroid nodule when I was 23. I was supposed to get a needle biopsy, but I procrastinated for over a year. When I finally went in, I was lying on a gurney in a paper gown, being prepped for the surgery, and the ultrasound revealed that the nodule was gone. Surgery was canceled and they sent me home.
Then, there’s my brother’s story. His spine was fractured in three places in a terrifying construction accident. He was left to lie contorted over his tool bag in the mud because they were afraid to move him. He’s training for his first marathon this year, and right now his mile time is sub-seven minutes.
Then, there’s my auntie’s story. (Paternal branch). She was diagnosed with fourth-degree liver failure and given six months to live. That was the year 2000. Still here in 2018.
Then there’s my grandfather’s story. (Maternal branch). He got mumps and was told it had made him sterile. Thus, his fourth and fifth children came as something of a surprise. If the doctors were right in Granddad’s case, I wouldn’t be here and neither would my mom.
There are probably more, if I do some interviews, but these are the family legends that popped into mind when I had my startling epiphany.
So what gives? Does getting mumps turn your grandchildren into superheroes, or what?
I’m not sure what. I have some guesses, though.
Note that each of the four stories I shared involves a different category physical problem. Endocrine dysfunction, skeletal injury, organ failure, infectious illness. There are also two separate genetic lines involved; my auntie has no blood relation to my grandfather of legend. If there are any unifying biological themes here, I have no idea what they might be.
Doctors tend to be pragmatists. It’s the nature of their work. Generally, what works for most people most of the time is close enough to truth to get the job done. Most people are functional, at least on a basic level, and human longevity is double what it was two hundred years ago, so there’s a lot they’re doing right.
There are some glaring, epic flaws in Western medical training. The first is that healthy and well people don’t come back. Feedback comes from the persistently unhealthy, those who didn’t get better and are still having trouble. Where are the data on all the people who got better? Second, the process of earning a medical degree is so contrary to physical well-being that it’s a wonder anyone survives. Chronic sleep deprivation, stress, overwork, and burnout are core requirements of the curriculum. Third, doctors are not taught nutrition! We have a fix-what’s-broken perspective rather than a maintain-and-improve perspective.
Would a doctor recognize what a healthy and thriving person was doing right? Enough to teach it to other patients?
I can tell you what I did that I believe reversed my thyroid disease. While I was busy procrastinating and not wanting to find out whether I had cancer, I began a very strenuous exercise program. I went from zero to riding my bicycle at least fifteen miles a day, on hilly terrain that required every one of my 21 gears. I got so strong that I could pick up my bike, rest it on my shoulder, and dash up a flight of stairs without thinking about it.
My brother swears by yoga. He was in great shape when he broke his back; it’s possible that if he hadn’t been so lean he might not have survived his accident. He’s also been a vegetarian for like twenty years (just saying).
As for my auntie and my granddad, I have no idea. I’m not sure whether they would have had any guesses either. It wouldn’t be wrong to list the character trait of stubbornness here.
Intuitively, I think part of what’s going on is whether we believe in a story, and how that belief influences our behavior. There can also be a huge gulf between what the doctor actually said and how the patient INTERPRETS what the doctor said. I have heard more than one person tell me, quote, “I physically can’t lose weight” based on what a doctor supposedly said, and I bet a shiny copper penny that no doctor has ever said that to anyone, ever, at any time. I also don’t think that medical professionals use the word “incurable,” but we tend to hear that a lot, too. For some reason, a lot of people positively adore talking about illness, disease, surgery, prescriptions, accidents, trauma, and negative outcomes. What this variety of person does with otherwise sound medical information, who can say?
So. One person goes to the doctor with [HEALTH PROBLEM] and eventually recovers. Another person goes to the (same) doctor with [IDENTICAL HEALTH PROBLEM], comes home believing in the problem, and never gets better. Does the second person’s complete package of behavior match the first person’s complete package of behavior? Why are we not studying this?
What I do differently than other people is to introduce myself to doctors as a health-oriented person. I tell them I’m a marathon runner and that I “want to get back in action” or something similar. I tell them that “I try to be as proactive about my health as possible.” Then they look at my labs and realize that my blood work backs me up. While I have the opportunity, I ask as many questions as possible. For instance, I cut my sclera last year, and when I went in to the optometrist, I asked her about this hypothesis that people could gradually correct their vision mechanically by spending more time outdoors and looking at different distances. She said sure, that sounded plausible. I’m one of the only people in my family who has never needed glasses, so I take this to confirm my bias toward exercise and outdoor pursuits. Since I tend to believe that I am entitled to perfect health, I work to attract information that supports my belief - and ignore anything that contradicts it.
Oh, yeah, and my eye healed, too. 20/80 back to 20/20 in two weeks.
Who knows what the future will bring? Maybe I’ll wind up a victim of spontaneous human combustion. Maybe I’ll sprout antlers or turn purple. Who knows? In the meantime, I’m in enviable shape for a middle-aged American woman. I have every intention of living to be 111. I see no reason to change my mind and start adopting negative, pessimistic views about illness and injury. A doctor told me once, “Whatever you’re doing, keep doing it,” and that’s medical advice I actually trust.
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.
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.
If there's a report card, I want to get an A on it. My ego needs this. The teacher's pet inside me can't accept anything less. I really want the approval of my dental hygienist, for example. Maybe I'm not good at anything else, but "my home care is excellent!" Yay! I feel the same way about getting lab work done. When my blood work results come in, I rush to compare them to the normal range and congratulate myself when everything is on target. This is what it's like to open those results and feel relieved and proud.
I realize fully and well that having good health is a luxury and a privilege. My mom couldn't bring me home from the hospital for three days after I was born because I had infant jaundice. I had a thyroid nodule at age 23 that was so big, I couldn't speak while lying on my back. They thought it was cancer. I had a respiratory infection for my college graduation, age 28, and it took my lung capacity down to 52%. Have you ever coughed up blood? I have. This is by no means a complete list of every scary or mysterious health problem I have ever had. My laundry list of health issues is the primary reason why I am so obsessed with being as healthy as possible.
Also, for the majority of my life between 18 and 30, I had no health insurance. That includes the coughing up blood, and the time I had to go to the emergency room and wound up being sent to collections for an amount under forty dollars. Health is cheaper.
Everyone thinks everything is genetic these days. By 'genetic,' we mean that "it was my fate to be born into a cursed family and nothing I ever do will ever affect anything in any way." We decide that we have no power or control. Thus, anything that goes wrong with our health is the will of the gods. Saying otherwise is a deep and dire insult, judging and criticizing others for things they can't help. Okay. Who comes from a pure and perfect genetic heritage in which nobody has any health issues thought to be hereditary? Not me!
Diabetes. Heart disease. Alzheimer's. Arthritis. Glaucoma. Cancer. Good times, yay. Let's throw in 'died of brain aneurysm' just to keep things interesting. I can wave the family banner of genetic tendencies just as hard and just as high as anyone else. This is the second reason why I pay so much attention to my health.
The third reason is that it pays off. Being healthy is its own reward. It is seriously awesome in every way.
Why not gloat a bit about it? I'm doing what very few people of my age (42 in July) have managed to do. I'm maintaining satisfactory health metrics without the use of pharmaceuticals. This is the result of tons of research on my part. This includes reading hundreds of articles and dozens of books on health, nutrition, and fitness; wearing health devices like a pedometer or a sports watch; tracking my health metrics with a food log, exercise log, and sleep log; learning to identify, cook, and eat dozens of vegetables I never tasted as a child; and pushing my physical abilities to the limit for years on end. I WORKED for this. My nice lovely lab results come from figuring out how to do it, and then doing it, meal after meal after meal and day after day.
I have had bone fractures and severe muscle strain and sprains and a dislocated hip and a dislocated rib and impacted wisdom teeth and nerve damage and chronic pain and fatigue and migraine and some wacky medical mysteries, including pavor nocturnus. Sometimes unfortunate stuff really does happen, and much of the time, doctors have no real idea of what went wrong or how to fix it. The bulk of my positive health results have come from my own persistent experimentation on myself, refusing to accept "just deal with it" as a valid medical response. I've learned that physical therapy, sleep, and nutritional inputs can do more than most people realize.
I haven't met my new doctor yet; I chose her out of a directory based on location, availability, and her photo and credentials. I don't know anything about her personal style or academic focus in medical school. What I do know is that the kind of health advice I get from a doctor depends a great deal on how I present myself at my visits. I want to walk in demonstrating that I am that teacher's pet, A+ student who will take vigorous notes and follow advice scrupulously. I want my doctor, whoever she may be, to feel that I am committed to taking care of myself and learning as much as I can. When I'm a "good patient" and "cooperative" it makes me seem more worth the time to give a doctor's full focus and attention. I say, "I really try to take care of myself, and whenever I learn about something positive I can do for my health, I add it in to my routine."
The last physician I had for a long period of time started taking health advice from me. She took up triathlon and made a point of telling me that I had inspired her to do it.
I have, in the past, felt helpless and confused and deeply sad about my health. I have had incredible frustration with dismissive doctors, and white-knuckled rage when I later learned something that helped me when a doctor said it wouldn't. (For instance, saying there was nothing I could do about my thyroid disease, which cost me years of ill health. Thanks for nothing, Dr. C). I have cried tears into my ears from the grief and powerlessness of having no idea what to do about a health problem. I feel younger and more energetic in my forties than I did in my twenties, almost entirely because of health issues I didn't understand at the time. I can say with certitude that my fixation with my physical health has paid off over the years. To me, if I had to choose between feeling healthy and fit or being a millionaire, well, naturally I'd choose all three, but having a strong body feels like a million dollars. Maybe ten million.
I don't let my A+ lab work get too much to my head. I look forward and ask my Future Self what I will want for myself ten years from now. The answer is more muscle and more bone density. I'd like to be a little stronger in ten years than I am today. That will come from giving myself the gift of more physical activity and more nutritional support. I do these things so that I can feel better today and tomorrow, and also so that Old Me will maintain mobility and independence as long as possible. We're in this for the long haul and until they make a full body transplant, I'm stuck doing it in the body I have.
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.
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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.