Things I’m grateful for: people who are brave enough to tell the stories I’m not

I’ve just discovered Rachael Steil’s sharing of her story as an elite college runner with an eating disorder.

And I’ve really been blown away, both by her bravery in telling her story, as well as her clear and honest explanations of what she and other people with ED’s go through.

I still haven’t shared too much about my own past with an eating disorder– I started to touch upon it in this post— but really, I have a story that’s as long and complicated and intense as hers (minus the part about being an elite college runner– I had long been injured by then).

But I relate so much, to the concept of losing a little bit of weight, and finding it makes you faster, and so then wanting to lose a LOT more.

Of latching on to healthy, trendy “lifestyle” diets– in her case, the raw food diet– because ultimately, you know it’s giving you a way to hide the fact that you have a problem from other people.

And of the paranoia of thinking that if you overeat, even if just for one day, you’ll gain enough weight to slow you down and ruin your time in your next race.

I so, SO appreciated her story, and I can’t wait to read her book.

I think that, when talking about this kind of thing, it’s really important to strike the right balance between sharing the some of the scary aspects of what you went through, while also reassuring people that you eventually found a way out.  That’s one thing that’s held me back from telling my story more– I want to be sure I do it right.

I think Rachael has managed to strike that right balance, so the way she tells her story is really an inspiration for me.

Hope you check it out!

Rachael’s website

Youtube channel, with many more great videos

Her book Running in Silence

 

Healing our bodies, and the things that ripple across generations

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A little over a year ago, I started a second blog to focus on what I’d come to think of as this weird hip problem I’d had for years that no one seemed to understand (sacroiliac joint dysfunction).

Among friends, I usually tried not to talk about it too much, because I didn’t think anyone else would want to hear about it.  Sometimes I wondered if it was all in my head, since so many of the doctors and physical therapists I’d seen didn’t seem to know what I was talking about.  I was embarrassed to tell people about it, since only my chiropractor seemed to believe it was a real problem (and you know how skeptical I am about most things alternative health).

I started My Sacroiliac Joint Saga one warm day in May.  I’d had an absolutely awful day, and was just about reaching my breaking point with this problem and thinking I might need surgery.  I didn’t really think anyone would want to read what I wrote, but I left it set to “public” just in case.

But a funny thing happened.  Once I actually gave myself permission to focus on the issue, instead of judging myself for it, I found I had a lot more time to problem solve.

I used the mental energy I’d once devoted to questioning myself instead to research the problem from every possible angle.  Not everything I read was helpful to me, but by giving my full energy to the problem, instead of wondering if I was crazy, I ended up finding the answers I needed.

And it turned out there were people out there who were familiar with this problem– patients who had experienced it themselves, and doctors and PT’s who treated patients with it, and were even contributing to research on the problem.  I just hadn’t had the luck to come across any of them.  Looking back, I think the reason why is that I stopped searching too soon.

***

Last spring, I wrote a post called “Inner Limits,” about how I was coming to realize my past with an eating disorder was haunting me more than I knew.

Internally, I had set certain limits for myself on how much time or energy I was willing to spend focusing on fixing a “problem” with my body, and so I held myself back.  I did my exercises, I went to the chiropractor once or twice a week, I maybe read one or two articles a month on it, but that was it.  Other than that, my main focus was sticking to my routine, as if pretending I didn’t have a problem could somehow limit the effect it had on my life.

But really, as I wrote in the post, there was more I could do.  I could do more exercises; I could do more stretches.  I could spend an hour a day researching, if I really wanted to.  I had the time… for some reason, I just wasn’t.  Because I was afraid to devote my full attention to it.

Funny, right?  Here I’d been working on this blog about my journey with central sensitization, and how much it took me to find answers for it, and how for so long I’d felt misunderstood when I had a legitimate medical issue.   One of the main messages of Sunlight in Winter has always been “Believe in yourself.  Your pain is real and you deserve help.”

And yet here, the same patterns were playing out with my sacroiliac joints.  Deep down, despite what I’d already been through, part of me was still afraid that if I fixated too much on my body, and trying to “change” it, it would trigger the same level of obsession that drove my years of starvation and overexercising.  So I held myself back.

***

I haven’t written much about my family history on this blog, and I probably won’t say more than this anytime soon.  But in the past few years, I’ve come to realize that some of these thought patterns of self-doubt didn’t start with me.  Often we learn them from somewhere– usually, consciously or not, from our families.  These patterns can be passed down, and I think they very much were in my case.  There were things that happened in my family long before I was even born, that sent out ripples across generations.

I realize now that I have been on a long road– not just with my health, but with learning to believe in myself; to trust myself.  There were events that occurred in my family, long before I existed, that have affected my life and my ability to believe in myself.

Now that I’m aware of how the past has been affecting me, I’m learning to see things differently; to create my own future and way of seeing things that’s healthy, and works for me.

I won’t always be able control what my body does (I’m sure anyone reading this blog can relate to that!).  But I can control the way I see myself, and I don’t have to let health issues affect my self-perception.  Just because a doctor can’t give me an answer for something, it doesn’t mean the problem is in my head.  It doesn’t mean my problem isn’t real.  I can’t make a problem worse by “dwelling” on it when what I’m actually doing is researching and trying to find answers.

***

I don’t believe that everything happens for a reason.  I believe that, most of the time, the best thing we can do is to try to make meaning out of something for ourselves, whatever that turns out to be.

I don’t know if all my health issues happened for a reason, but now that I look back, I  know this common thread was there all along.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.

All of these problems were real; all of them were hard to get diagnosed, and hard to find the right treatment.  But for each problem (and I know I’m fortunate in this) there were eventually answers out there.

I know this is not true for everyone who writes under the “Spoonie” banner, but for me, my major health issues have all turned to be manageable.  There were answers out there, and I probably would have found them sooner if I had taken myself more seriously, and believed in the possibility of finding answers.  Or, I should say, the possibility of being understood.

***

Over the past weekend, My Sacroiliac Joint Saga hit 10,000 total page views.  I still can’t believe this blog I started a year ago as a somewhat embarrassing side project has grown to this extent, and helped so many people.  (And I know this because of all your kind comments and messages– thank you!).

And, aside from page views, 2016 Me still can hardly believe how fortunate I’ve been to finally find answers to this problem.  When I was at my breaking point that day in May, getting better wasn’t something I could really even picture.

So let this be a reminder to me, and to you if you’re reading this, to never let our health issues change the way we see ourselves.

We are so much more powerful than we realize… we just have to be able to see it in ourselves.

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How I developed central sensitization: Part 1

Here’s a post I’ve been meaning to write for a long time: the story of how I personally developed central sensitization.

If you’ve been reading my blog for a while, you’re probably aware that central sensitization occurs as the result of some sort of insult to the central nervous system.  Basically, if the body gets enough practice sending pain signals, it gets “better” at it– meaning you start experiencing pain more intensely, with less provocation.

So.  How did it happen to me?

As I’ve touched up in previous posts, my high school years were pretty rough.  Basically, a bunch of bad things happened in my life, too close together for me to know how to deal with.  When I look back on that time, it’s like my thoughts and emotions were tangled up in one big knot– a knot it would take me years to untie.

At the time, one of the ways I coped was with exercise.  I struggled with depression, and the endorphins I got from exercise were one of the only things that made me feel normal.  That one- or two- hour window each day after my workout was the only time I felt like the clouds lifted, and I could think clearly.

The other way I coped was by restricting my calories and keeping my body at an unhealthily low weight.  I’d perceived myself as being a little bit chubby at the time the bad things started to happen, and being skinny was part of the new me.  Paradoxically, with each ounce of flesh I was able to strip off from my bones, I felt I was adding a kind of layer of “protection” around me, ensuring that things couldn’t go back to the way they had been.

So, I was starving myself, and running an average of 40 miles a week.

***

I ran for my school’s cross-country and track teams, and before I go on, let me say that I loved running for its own sake.  And I was good at it.

But I took it too far.  For a while, my body’s natural ability allowed me to excel even as I got skinnier and skinnier.   I was hitting faster and faster times– winning medals, even– as more of my skeleton became visible.

Obviously, this was a recipe for disaster, and eventually I developed compartment syndrome in my lower legs.  It’s a condition that’s somewhat similar to carpal tunnel– basically, I had a lot of fluid being trapped inside of my lower legs.  I’ll write more about compartment syndrome later, but for now, let’s just say that it got worse and worse until I’d gone from almost being able to run a five-minute mile to barely being able to walk.

I suffered from compartment syndrome for the next two years before finally deciding to have surgery, and wow– I really wish I could take that decision back.  I wish I’d just had surgery sooner, because it really solved the problem almost immediately.

However, at the time, my orthopedist had suggested I try more conservative forms of treatment.  None of them really worked, but on some level, I was lost in my own inertia.

I had been trying, and trying, and trying for so long– forcing myself up at 5 am to work out, when I’d barely been able to sleep the night before because I was so hungry.  I was just done.

***

Those two years, from age 17-19, are somewhat of a blur.  I was still struggling with depression, although things improved dramatically after I graduated from high school.  I actually tried to work out in a pool but wasn’t really feeling it– ironic, because all these years later, the pool has become my second home.  But at the time, I was just too depressed to think or function clearly.

So I waited those two years, sometimes trying conservative treatment methods, sometimes going to physical therapy, sometimes working out in a pool.

The compartment syndrome was not so much excruciating as it was frustrating.  I knew where the limits were pretty clearly– how much I could push myself before the feeling of pressure built up in my lower legs, and my feet started tingling.

But it was still a constant buzz in the background, like an annoying mosquito buzzing around my ear for those two years.  I couldn’t forget about it– couldn’t even stand in line at the movies.  Whoever I went with had to stand in line while I waited on a bench.

***

I tried to go to college like all of my friends.  I actually went to a large Division I school, thinking somehow I’d get back into running.  But really, things were getting worse, and it was becoming harder and harder to walk.  There wasn’t adequate public transportation around campus, and I’d have to decide whether I wanted to walk to the library that day to get my books for class, or if I wanted to actually go to class.  My body couldn’t do both.

That’s when I realized this couldn’t go on, and decided to come home and have surgery.

***

The surgery itself was not very invasive at all.  The place where my orthopedist had to make a few incisions was very superficial (aka close to the surface) so he didn’t have to dig around too much.  I came home from the hospital that same day, and although I spent the following day completely knocked out with narcotic painkillers, by the second day I wasn’t even using my crutches (although I still had casts).

Everything seemed normal right after the surgery, although from what people have told me, surgery like that can be a big trauma to the body.

I didn’t notice anything right away– in fact, I was healing pretty well.  But, as I later learned, it’s possible that everything my nervous system had already been through– the constant bombardment from the compartment syndrome, as well as the surgery- would have a delayed effect.

***

As luck would have it, I had developed acid reflux right around then.  My doctor suggested I try sleeping propped up by pillows at night, so gravity could keep the acid down.

Big mistake.  I woke up after one night in absolute agony.  I had completely thrown my back out– the whole thing felt like one giant muscle spasm.

I had never had such a silly, simple little thing cause so much pain before.  The only injuries I’d had before had been serious running injuries, that came from pounding my legs into pavement 40 miles a week.  But this silly, little simple thing actually had me in excruciating pain.

And this– THIS.  After everything I’d been through, this is how my chronic pain problem started.

Looking back, I can see that it probably wasn’t just the issue of throwing my back out.  Instead, it was probably a combination of factors– everything my body had been through, coming together to create an overwhelming effect all at one time.  My nervous system had just had too much.

Of course, I didn’t know what it was at a time.  I had never heard of such a thing as central sensitization, and in fact, I wouldn’t– not for another six years.  I had a long road ahead of me.

To be continued in Part 2.

Fighting a health issue without judgement, for the first time

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They say one of the worst things a blogger can do is to begin all your posts with an explanation of why it’s been so long since your last post.

Normally I’m able to stop myself from doing this, but I’m going to let myself do it this time, since it’s actually relevant to what I want to say.

The reason I haven’t been on here in so long is I had a crazy past few months dealing with the most insane dust and mold allergies.

I had been living in a super old 1700’s farmhouse that had not been well-maintained.  A good friend had been living there for years and needed a roommate, and the rent was super low.  So I moved in with him, following my return from California.

I had never really had significant allergies before, beyond suffering from pollen one or two weeks out of the year.

But this winter, it came out of nowhere.  I thought I was sick at first, and had to take antibiotics for a sinus infection, but even once that was treated, some of my symptoms never went away.

Thankfully, my primary care physician referred me to an allergist (even though I was convinced I wasn’t the kind of person who had allergies) and sure enough, I tested positive for dust and mold allergies.

By then, things had gotten so bad that I could barely sleep– I was so congested it was hard to breathe.  I’d wake up feeling like I couldn’t get enough air.  My sleep schedule got all messed up, and I started relying on things like Benadryl and Nyquil, which of course left me exhausted the next day.  And during the day, dealing with my symptoms felt like a full-time job.

In the midst of all this, I realized I had to find a new place to live– a pretty intense and financially-involved decision to make when you know you’re not in your right mind.

Somehow it worked out.  It took another month, but I finally ended up moving, and am gradually doing better (my allergy doctor said it might take a few weeks).

I’m a little upset at how much time I lost on this problem– really, I wasn’t able to be productive for much of the winter, until things finally came to a head in March.

However, if I look back, I can see that some good came out of this, in a way.

This was really the first time I experienced a health issue and pursued treatment on it without stopping to judge myself, or the way I was handling it.

***

I mentioned in a previous post that, in the past few years, I came to realize that many of the same issues that contributed to my eating disorder were also affecting the way I handled my health issues.

Specifically, in an unconscious way, I was afraid to devote too much time or effort to “fixing” something with my body, because I was afraid it would trigger the same obsession that caused me to starve myself while running 40+ miles a week, until I eventually developed compartment syndrome.

With issues such as my chronic pain, and then my SI joint issues, I only tried to fix the problem to a certain extent.  I’d go see a specialist, I’d go to PT, I’d do my exercises.  But then I wanted to stop, be a normal girl, focus on other things.

I finally identified this pattern 5 years into my SI joint problem.  I realized, you know what, this problem has completely taken over my life anyway.  It doesn’t really make sense to try to “limit” the time I spend trying to fix it, because things are so limited for me right now anyway.

So I gave myself permission to do whatever it took, and started my SI joint blog as a way to keep track of the things I researched.  And it was during my research for this blog that I first came across another patient saying constant chiropractor adjustments made her worse.  That planted the seed in my mind, and I ultimately came to realize that the same was true for me as well.

With my allergy stuff… I got right to it.  I scheduled an allergy test, and when the first office of the sprawling medical practice couldn’t fit me in for over 6 weeks, I called around until I found an opening in 2 weeks.  I made all the lifestyle changes my doctor recommended, and then some.  And then I moved.

Of course, it was a little easier to proceed without judgement from others in the context of allergies.  After all, we don’t suspect people of “making up” allergies for some kind of gain. You can’t get workers comp for it, and there aren’t any super fun drugs.

But even so, I felt that the biggest difference this time around was in my mind.

I had it in my head that I was a “normal” person, experiencing a problem, and I did what it took to get better.  I didn’t waste time on “whys” or “what ifs.”  I didn’t ask if I deserved to get better, or worry about what the doctors might think of me.  I simply had a problem, and I did what it took to find a solution.

When I first started having chronic pain at nineteen, I thought I deserved it…  I’d starved and abused my body, even though I should have known better, and that the pain and the compartment syndrome and maybe even my SI joint problems were the price I had to pay.

Now, at age 32, I never felt that way about my allergies on any level… I just saw them as a crazy fluke of biology, a random stroke of unfortunate genetic luck that was completely not my fault.

So… it’s interesting to feel this way.

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Does anyone out there know what I mean?

Have you ever come to realize that your own negative beliefs and fears about yourself were affecting the way you pursued treatment?

Don’t let them.  Believe in yourself– believe that you are normal, and that answers are out there.  Because they are.

Out with the old: Saying goodbye to 90’s nutrition advice

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In the spirit of New Year’s resolutions and goals, I thought I’d share this really great article I found recently on nutrition “myths.”  

Fitness Magazine interviewed registered dietitians on how their perspectives on healthy eating have changed over time.  These RD’s talk about some of the conventional wisdom regarding nutrition coming out of recent decades, how it influenced them, and how a lot of it turned out to be wrong.

***

As a teenager struggling with body image issues in the late 90’s and early 2000’s, I encountered much of these same nutrition trends myself from magazines and books, as well as from the nutritionist I saw for help with my eating disorder.

I remember– I was terrified of fat.  When I went out to eat, I insisted that I found mayonnaise and salad dressing “gross,” because I had read that cutting those things out was the best way to cut calories.

Each day, I only ate a certain number of calories at set times, and carefully adjusting the amount depending on the number of calories I had burned through exercise.  My treat at the end of the day would be some kind of “low-fat” dessert or “snack pack” of cookies.  Most of the food I ate was low fat– Healthy Choice ham for my sandwich at lunch, with low fat cheese.  Lean Cuisines for dinner.

It is so strange, now, to realize that so many of the “rules” I based my life around were, in fact, actually all wrong.

One of the quotes I related to the most in the article came from Lauren Harris-Pincus, M.S., R.D.N., owner of Nutrition Starring You.  She says:

“When I became a dietitian in the mid 1990s, we were in the middle of the fat-free craze. Bagels, fat-free frozen yogurt, and Snackwell cookies were all the rage. Our hospital diet materials recommended limiting nuts because of their fat content and limiting shellfish because of their cholesterol. Now, we know much more about the health benefits of fats derived from nuts and seeds, and we’ve also learned that high-sugar, fat-free foods are not nutritious choices. Unfortunately, people have long memories and to this day, so many of my patients are afraid to eat shrimp if they have elevated cholesterol. It’s exciting to work in a field with ever-evolving research.”

Yes– it absolutely was a fat-free craze.  Fat-free dressing, fat-free cheese.  Sometimes I’d even come across bread that was labeled fat free.  I always thought I was doing something great for myself when I reached for that label, not understanding that my body actually needed fat in order to function.  

I also really related to this quote from Emily Cope, M.S., R.D.N., Owner & Consulting Dietitian at Emily Kyle Nutrition:

“When I was in college, I remember being obsessed with those ‘100-calorie packs’ of cookies and crackers. I thought they were a great option—less than 100 calories for all of those tiny wafers!! Little did I know those calories were being replaced with chemicals and unnatural ingredients. These days, now that I am older and wiser, I am less concerned with calories and more concerned with the quality of my food—whole fruit and nuts are my current go-to snacks!”

Yes.  Unfortunately, that was so me as well.  I felt comfortable with pre-packaged, processed foods because they were marketed for weight-loss, and it was easy to know how many calories were in them.

***

These days, I have come so far in terms of my outlook to food that sometimes I almost forget that I ever had a problem.  (After all, I’ve had to deal with so much else with my body over the intervening years!).

I will talk more about how I overcame my eating and body image issues in future posts.  But for now, let me say that these days I think I live and eat pretty holistically.  I don’t get caught up on the idea of depriving myself of something if I really want it; I don’t count calories.  

And the funny thing is, now that I allow myself to eat whatever I want, I find that most of the time, I generally tend to crave pretty healthy choices.  Now that I’m actually well-nourished, I find myself more in touch with how my body responds to different foods, and I tend to gravitate towards the foods that make me feel best.

I’m sharing this with you for a few reasons:  

A) There’s some really good advice contained in this article, and

B) It serves as a reminder to me– and maybe to you– that things can get better.  Even if you have a problem that goes on for years; if you feel trapped and you truly seem stuck, things can change when you don’t expect it.

I truly hope this post was helpful to you.  Happy New Year!