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Central Sensitization, Chronic Pain, Creative Writing, Pain Neurophysiology Education, Pain Science, physical therapy

There is reason to hope.

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I saw a comment on Twitter today which really broke my heart, so I wanted to write this and make it clear:

If you are experiencing pain hypersensitivity (through central sensitization), there is every reason to hope.

If your nervous system has changed one way, it is possible to change it back.

It won’t be easy, and the way forward won’t always be obvious.  But you can do it.

If you are experiencing central sensitization (as the result of an injury, a trauma, or other extreme physical or emotional experience) you have become more sensitive to pain than you used to be.  Your body is using pain as a way to protect you, but it is treating you like you are made of glass.  It is trying to protect you from everything.

Scientists are still researching the myriad of ways in which this happens.  So far, they have identified multiple different mechanisms within the nervous system which can cause this extreme response to pain.

However, the good news is that we don’t need to know everything, yet, about how this process occurs to start treating it.  (Although our treatments will only get better in the future, with more knowledge).

But you can start, right now, by learning what your body is capable of, and identifying the things your nervous system is warning you about that aren’t actually dangerous.

For me, it took a really smart and capable physical therapist who had studied with Neil Pearson.   I expect that you will need a guide as well– someone who you trust, who can walk you through and help identify the ways it is safe for you to try to push through the pain.

Your best bet will be a physical therapist who has advanced knowledge of recent pain science.  (A PT with this knowledge might not easy to find, at first, but luckily it’s becoming easier and easier.  If you email me at sunlightinwinter12@hotmail.com, I can help you get started).

What you need is someone you trust, who you will believe when they tell you your body is capable of more.

Someone who is able to think flexibly and come up with more than one way to do an exercise, if you tell them the first way they gave you doesn’t seem to work.

Someone who will understand that it’s not only about what they learned about the body in school…  it’s also about you, your nervous system, and your experience as a patient.  Your nervous system has to be convinced that your body is safe, before it’s going to stop making things hurt.

Changing your beliefs about pain can have a direct impact on the pain you ultimately experience.  When you truly learn and understand that your body is giving you pain in order to protect you, it stops being so threatening.  This is known as changing your pain from the top down— from the brain to the body.

But then, of course– it’s equally important to keep working on your pain from the bottom up– from your body to the brain.   

If you have chronic pain, or have suffered from some type of injury, your muscles are probably tightened into protective spasms.  This, in turn, will make them weak, if it goes on for long enough.

If you are weak, you are going to have pain and be at risk for additional injuries.  (This is why I went on to develop so many additional problems after I first suffered from compartment syndrome as a teenager, because I had ended up so out of shape).

So you have to work on the pain from both angles.  You need to calm your nervous system down, and help it understand that not everything is dangerous.  But you also need to give your body what it needs, and do everything that you can to help it function optimally.

***

Doing both of these things is a balancing act.  Getting back in to shape is not about pushing through the pain.  It is not a “no pain, no gain” mentality.

Instead, it is about being mindful.  Being careful.  (And again, ideally, having a trusted coach by your side).

To respect your nervous system, and to accept your body where it is currently at.  Not trying to do too much, too soon, but instead starting where you can.  If you can only walk for 5 minutes, walk for 5 minutes.  If you need to ice your injured knee before you work out, ice your injured knee.

It’s about bringing all of these different things together, and figuring out what works for you.

***

I touched upon this once in an earlier post, and I have to say, I think I phrased it really nicely:

“There is a middle way, where you learn to respect your body’s pain without automatically assuming you are injured.  This means you respect the pain and don’t try to push through it, but you also know not to freak out because you recognize that your nervous system sometimes gives you false alarms.  It’s about being okay with the possibility that maybe you strained something and need to take it easy, while knowing that you probably didn’t.”

This is the balance you eventually need to find, and having a trusted coach by your side who can help you understand what’s going on in your body can make all the difference.

This is the physical therapist I hope someday to be.  The person who understands and can walk you through, even when the path ahead seems scary.  I have been there myself and I know what it’s like.

I also know what it’s like to regain trust in your body.  To go from feeling as though you are made of glass, to knowing what you are capable of– while also knowing your body has limits, and learning to honor them.

This is the balance you need to find.  It won’t be easy, but it is possible.

Central Sensitization, Nervous System, Pain Science, Quotes, Scientific Articles

Let’s give this a whirl: explaining a scientific article in plain English

Tonight, I’m going to try out a type of post I’ve been wanting to write for a while: taking a scientific journal article on central sensitization, and translating it into plain English for my readers.

I got the idea from Paul Ingraham of PainScience.com.  He has a fantastic “jargon-to-English” article on central sensitization on his site (a translation of a paper by renowned pain researcher Clifford Woolf), which I really love.

There is no reason why you, as a patient and chronic pain sufferer, should not be able to know a little bit about the scientific research being done on your condition.  You are going to need to be able to advocate for yourself, stand up for yourself, and remember there is a legitimate explanation for your pain, even if other people don’t always see it that way.  Knowing there is research to back you up helps.

Ever since I first learned of the term “central sensitization” back in 2011, I found so much comfort in reading these articles.  Even if I didn’t understand every word, just knowing there were people out there who would believe me about my pain, if I met them, provided me with the sense that I wasn’t alone.

These changes to our nervous systems are real, even if some of the people in our lives don’t always understand.

***

So anyway.  The article that I want to take a stab at tonight is “Central Sensitization: A Generator of Pain Hypersensitivity by Central Neural Plasticity” by Alban Latremoliere and Clifford J. Woolf.  (In the interest of keeping things manageable, I am just going to outline the abstract, which is basically a summary of the article).

The article discusses central sensitization, which is the name of the process through which our nervous systems learn to become more sensitive to pain.

Let’s look at it in bits and pieces:

“Central sensitization represents an enhancement in the function of neurons and circuits in nociceptive pathways caused by increases in membrane excitability and synaptic efficacy as well as to reduced inhibition…”

This basically means that the parts of the nervous system responsible for sending pain signals become more active than they were before.

“Increases in membrane excitability” means that it will take less stimulation for nerves to send a pain signal.

An increase in “synaptic efficacy” means that the nerve is going to learn to be more efficient with the neurotransmitters that it has.  So, even though the nervous system still has the same chemicals floating around in it, it is going to learn to start sending stronger and stronger pain signals with those same chemicals.

Reduced inhibition.   Your body has many intricate systems of checks and balances within it.  It is how our bodies maintain control over our internal environment.

One way our body maintains control is by “inhibiting” some of the signals our nervous system sends.  This serves a really practical purpose– we do not need to be bombarded with reminders that our socks are a little bit itchy at all times.  Your nervous system chooses to block out certain signals when they are not useful, or in emergency situations (which is why people can feel no pain when they are in shock).

But in the case of central sensitization, our body’s ability to “block out” or “turn the volume down” on pain signals is reduced, meaning we ultimately experience more pain.

“Central sensitization is responsible for many of the temporal, spatial, and threshold changes in pain sensibility…”.

There are several ways in which these changes to our nervous systems manifest themselves.

We may find that, when something happens that we find painful, we end up experiencing it as painful in a larger part of our body than we might have otherwise.

I’ve really found this to be true with back pain.  When my back pain was at its absolute worst (before I discovered pain neurophysiology education) one tight muscle or muscle knot could make my entire back hurt.

“Because central sensitization results from changes in the properties of neurons in the central nervous system, the pain is no longer coupled, as acute nociceptive pain is, to the presence, intensity, or duration of noxious peripheral stimuli.”

This means that, in a sensitized nervous system, pain is no longer an accurate measure of the presence of an injury, or the degree to which our tissues may have been damaged by an injury.  The central nervous system is now doing its own thing, and you can’t really go by the pain to know what’s wrong.

“Instead, central sensitization produces pain hypersensitivity by changing the sensory response elicited by normal inputs, including those that usually evoke innocuous sensations.”

This means that we now start to feel pain in response to things that are not harmful, and which would have felt painful to us before.

To give you an example, I once knew someone who also suffered from chronic pain, and she said there were days she simply could not bear the feeling of clothing against her skin.  Just the feeling of a lightweight sweater against the skin of her chest made it burn and throb.

This person wasn’t crazy.  She knew her clothes weren’t “hurting” her.  But her nervous system was reacting as though those clothes were somehow damaging her skin.  There was a disconnect between her rational mind, which knew it was only clothing, and the parts of her nervous system which were contributing to her pain hypersensitivity.

(So… lest I end the post on a gloomy note, not to worry.  That’s where pain neurophysiology education comes in, to try to fix this disconnect).

***

Phew.  Okay.  That was not quite as easy as I thought it would be, all the times I thought about writing this post.  But hopefully you made it through!

Everything I write on this subject is meant to be a trial, of sorts.  I’m experimenting with what types of stories and explanations make the most sense, because I really have it in my heart of hearts to develop a set of educational materials on these nervous system changes.

So I want to see what works– what makes sense, what resonates.  (And what doesn’t).

I suffered for so long, thinking I was crazy, when the whole time there were answers out there.  And there was no good reason for it, except that most people (including many medical professionals) still do not know anything about central sensitization.

So I, and my blog, and my future potential physical therapy practice, are hopefully going to be doing something about that.

Please let me know if you have any questions, or any feedback on what sorts of things would be helpful in the future!  I do take requests!

Central Sensitization, Pain Neurophysiology Education, Pain Science

Todd Hargrove: Seven Things You Should Know About about Pain Science

As I’ve mentioned recently, two things make me really happy, which I plan to focus on more in my blogging in 2017:

  1. Great explanations of pain and the nervous system
  2. Amazing writing and creative use of language

Well, this fantastic article on pain science by Todd Hargrove at Better Movement has both, so of course it had to be my next post.

This is one of those moments where I would just blatantly copy and post the whole article if I could, because it’s that good.  However, in the interest of avoiding copyright infringement, I’m not going to do that, and will instead highlight some of the quotes that really resonated with me.

Basically, the term “pain science” reflects an understanding of the concept that pain is more complicated than our body relaying us a simple message about something being wrong.

That brings us to our first quote:

Pain is defined as an unpleasant subjective experience whose purpose is to motivate you to do something, usually to protect body parts that the brain thinks (rightly or wrongly) are damaged. If you feel pain, it means that your brain thinks the body is under threat, and that something has to be done about it.

The key phrase here is “rightly or wrongly.”  Your brain will cause you to feel pain if it thinks some part of you is in danger.  And the brain is not always right about this– it’s not that simple.

Pain is created by the brain, not passively perceived by the brain as a preformed sensation that arrives from the body.

When a body part is damaged, nerve endings are triggered and send warning signals to the brain. But no pain is felt until the brain interprets this information and decides that pain would be helpful in some way – for example to encourage protective behaviors to minimize further damage and allow time for healing.

Pain is not a simple game of “telephone,” where your nerves send a direct message to your brain about what’s happening in your body.  Pain is something your brain chooses to have you experience, in order to motivate you to do something about it.

This is why there have been documented cases of people who were experiencing extreme injuries or states of physical trauma, yet felt no pain.  When I took my neuroscience course, my professor told us that this phenomenon was reported somewhat widely during World War I, where were soldiers who lost entire limbs in battle and yet felt no pain.  This is because, at the deepest level, their brains understood that they were now going home to safety, away from the battlefield.  In the grand scheme of things, the injury could actually be saving their lives.  That is why their brains did not need to make it more painful– they were already heading home to safety.

Pain is like learning

I have discussed central sensitization before– the unfortunate truth that the more chances the nervous system gets to “practice” sending pain signals, the better it becomes at doing it.

Well, here is another way of explaining things that I absolutely loved:

One unfortunate aspect of pain physiology is that the longer pain goes on, the easier it becomes to feel the pain.  This is a consequence of a very basic neural process called long-term potentiation, which basically means that the more times the brain uses a certain neural pathway, the easier it becomes to activate that pathway again.

It’s like carving a groove through the snow while skiing down a mountain – the more times the same path is traveled the easier it is to fall into that same groove.  This is the same process by which we learn habits or develop skills.  In the context of pain, it means that the more times we feel a certain pain, the less stimulus is required to trigger the pain.

I love this metaphor about carving a groove through the snow.  The more times you go over the same thought pattern in the brain, the more firmly you establish it.  This is true for learning a new skill, and it’s true for sending pain signals.

And again, it’s important to remember– this sensitization does initially serve a purpose:

Most of the time an injury will increase the level of sensitization, presumably so that the brain can more easily protect an area that is now known to be damaged. When an area becomes sensitized, we can expect that pain will be felt sooner and more strongly (so that we do not reinjure it).

There are many complicated mechanisms by which the level of sensitivity is increased or decreased…For our purposes, the key point is that the CNS is constantly adjusting the level of volume on the pain signals depending on a variety of factors. For whatever reason, it appears that in many individuals with chronic pain, the volume has simply been turned up too loud and left on for too long.

Basically, our bodies cause us to become extra sensitive to pain following an injury so that we rest the area.  (After all, as my neuroscience professor liked to ask, if you were a cave person with a broken foot, what good would it do you to go out and try to do battle with a saber-toothed tiger?  You’d get eaten.  Better to rest).

However, the problem with central sensitization is that, sometimes, our bodies don’t know how or when to stop– “the volume has simply been turned up too loud and left on for too long.”

The good thing about pain science is, of course, that it provides us with some really interesting entry points to try to break in to these complex pain problems and develop ways to treat them.  (I don’t know why I’m saying “us.”  I’m not part of the “us” yet.   But I so want to be).

So… not to worry.  Just because your nervous system has become sensitized and ended up one way, that doesn’t mean it isn’t possible to change it back.  (And that, my friends, is the main reason for my blog).

Further Reading

If you’d like to read more about pain science, well… I have so many things I think you should read!  But here is what is probably a more manageable list:

Anything and everything by Neil Pearson

Lorimer Moseley & Body in Mind

The nervous system and chronic pain

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

What is pain neurophysiology education?

My new and updated “Resources” section!  I have been working on polishing it up recently, so you may find a few cool new things in there that weren’t there the last time you looked.

That’s all for now– please let me know if you have any questions!   Happy reading!

Central Sensitization, Chronic Pain, Pain Neurophysiology Education, Pain Science, physical therapy, Treatment Approaches

What is pain neurophysiology education?

In a nutshell, pain neurophysiology education is the type of treatment for chronic pain that changed my life and inspired me to become a physical therapist.

I’ve mentioned it in passing on this blog, but I decided it’s high time I give the topic its own post.

***

In my series “How a physical therapist helped me through my lowest point,” you can read the story of how my life had ground to a halt because of chronic pain, until I finally met Tim, a physical therapist who had studied with Neil Pearson.

Tim treated my pain in an entirely different manner than all the physical therapists and doctors I’d seen previously.

He explained to me that after all my body had been through– running 45 miles a week, only to develop compartment syndrome and barely be able to stand, to live like that for two years, and then to undergo surgery– my nervous system had gotten confused.

All the pain doctors hadn’t been able to explain– it wasn’t because I was crazy.

In fact, the reason I was feeling all this pain was because my body was trying to protect me.

My nervous system had decided the world was a dangerous place.  It was tired of me taking chances– it didn’t want to have to deal with another injury.  So it was making everything hurt.  It was making me feel as though I were made of glass.

But I wasn’t made of glass, Tim assured me.  My body was strong; it was capable.  And this attempt on the part of my nervous system to protect me had over-served its purpose.

Tim explained that the surgery I’d had for compartment syndrome had been successful, and despite how much my legs might hurt at times, I wasn’t going to be able to bring it back just by walking down the street.

***

The pain neurophysiology approach worked when nothing else had, because it gave me a real explanation for the pain that actually made sense.

Before that, all the physical therapists I’d seen (and I’d seen a lot) had taken one of two approaches:

A) You have some underlying soft tissue problem or scar tissue or whatnot that we have to fix with a special treatment, or

B) I can’t really find anything wrong with you, so the pain must be in your head and you should probably see a psychologist.

Neither of these approaches ever made a difference for me.  The “special treatments” for the hidden, subtle issues in approach A never fixed anything or reduced my pain (except temporarily, because I felt like I was doing something).  And approach B never fixed anything, because ultimately these problems were not reflective of my overall mental health.

Instead, I learned, my pain was the result of a specific phenomenon that occurs within the nervous system: central sensitization.  Basically, the underlying principle here is that the more practice the nervous system gets at sending signals, the better it will get at sending those signals.  And that is true of pain signals, along with everything else.

***

Tim didn’t really use the words “pain neurophysiology education” while I was seeing him for treatment.  Instead, I first found this phrase while I was looking through Neil Pearson‘s website, as Tim had urged me to do.

From there, I discovered the names of other physical therapists and researchers who had contributed to developing pain neurophysiology education, or PNE as I’ll be referring to it in the future.

Names such as David Butler of the Neuro Orthopedic Institute, and Lorimer Moseley of the research group Body in Mind.

From there I have discovered so many interesting resources, and articles, and interesting people doing work on the subject.

***

For 2017, I’m trying to get back to my roots on this blog.  I started blogging to educate people on the science of chronic pain, and I really enjoy doing that.  So I’m planning to start channeling more energy towards that again.

So I’m going to start fleshing out this section of the blog again.  I’ll be providing a lot more explanations, linking to great resources, and also quoting excerpts from articles that I think explain things really well.

And I’ll be telling my own story, when it comes to my struggle to understand my body, and learning to deal with central sensitization.

***

For now, I want to leave you with two posts I wrote on some of the main concepts I learned through my experience with PNE:

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

These posts tie in a couple of anecdotes from Neil Pearson and Lorimer Moseley that I found particularly helpful.  (Let me say, once again, that I am so, so grateful for their work!).

***

I hope you find this post, and the related articles I linked to, to be helpful!  I’m really excited about the things I plan to write about in the future, and I hope you stay tuned!

Central Sensitization, Chronic Pain, Nervous System, Pain Science, Resources

The best TED talk ever: Elliot Krane on the Mystery of Chronic pain

Tonight I’m throwing it back to this amazing 2011 lecture on chronic pain given by Dr. Elliot Krane of Stanford University.

I found his talk around the time I was first starting this blog, back in 2012, and it really inspired me to try to tell my own story with complex pain problems.

Dr. Krane is a pediatrician and an anesthesiologist.  He specializes in treating children with chronic pain disorders at the Lucile Packard Children’s Hospital at Stanford University.

In this talk, Dr. Krane outlines the case of a young girl who developed CRPS following a wrist sprain, and was successfully treated at his hospital.

He has some really great quotes and soundbites about chronic pain– things I want to remember, and things I think will be useful in trying to explain the multi-layered nature of pain to people who don’t quite get it (yet).

So here, I’m just going to take a few notes so I (and you, if you’re interested) can come back and remember some key points really quickly:

***

Most of the time, we think of pain as a symptom of a disease– the result of an infection or a tumor, an inflammation or an operation.  But about 10% of the time, after a patient recovers from one of those events, the pain persists for months or even years.  In those cases, pain can become its own disease.

Chronic pain is “a positive feedback loop…. It’s almost as if somebody came into your home and rewired yours walls so that the next time you turned on the light switch, the toilet flushed three doors down, or your dishwasher went on, or your computer monitor turned off.  It sounds crazy, but that’s what happens with chronic pain.”

Glial cells (a particular type of cell found in the nervous system) were once thought to be unimportant.  When I learned about them in my PT prerequisite classes, we thought of them as the supportive “glue” that provides a safe environment for neurons, the more interesting cells that were actually responsible for sending messages.

But, Dr. Krane explains, it turns out that glial cells can play a vital role in the “modulation, amplification and, in the case of pain, the distortion of sensory experiences.”  Once glial cells are triggered by chronic pain, they become overactive and help initiate that the positive feedback loop he mentioned.

Some other quotes:

“The nervous system has plasticity.  It changes, and it morphs in response to stimuli.”

On treatment:

“We treat these patients in a rather crude fashion at this point in time. ”

Dr. Krane describes the treatment protocol for CRPS patients at his center:

  • symptom modifying drugs (painkillers) “which are frankly, not very effective for this type of pain”
  • “We take nerves that are noisy and active that should be quiet, and we put them to sleep with local anesthetics.”
  • “Most importantly… we use a rigorous and often uncomfortable process of physical therapy and occupational therapy to retrain the nervous system to respond normally to the activities and sensory experiences that are part of everyday life.

The future is actually even brighter:

“…the future holds the promise that new drugs will be developed that are not symptom-modifying drugs that simply mask the problem, as we have now, but that will be disease-modifying drugs, that will actually go right to the root of the problem and attack those glial cells….that spill over and cause this central nervous system wind-up…”

***

It’s really interesting for me to look back on this talk, now, and see how my perspective has changed since I first watched it in 2011.  Back then, the point about glial cells largely went over my head (probably because I wasn’t invested at all in knowing what they were).

Now that I’ve taken anatomy & physiology as well as an undergraduate neuroscience course, I can actually see how groundbreaking this really is, to identify glial cells as a potential source of the problem.

It’s as though you’re looking at a telephone pole, and you realize that the wooden pole itself was sending signals, instead of just being there to hold up the electrical wires.  (If that metaphor makes sense).

Anyway, I really hope Dr. Krane is right, that we can begin to develop drugs that will target this mechanism for chronic pain.

Hope you enjoyed this talk!

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eating disorders, Nutrition

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!

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Creative Writing, Favorites, Inspiration, Uncategorized

A Returning

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“I have been away.

I have often thought of how to begin this blog again after a long hiatus and then more time would pass and there it stood waiting for me to speak, write, and reach out.

The reason for my silence is the same reason for beginning this blog. Living with chronic illness permeates everything we do. It is the scaffolding of which we build each day. It determines our daily plans, what we take on, and what we leave unfinished. As I dedicated each day to doctor’s appointments, physical therapy, medication changes, and rebuilding my life after a health storm, this unfinished blog provided comfort knowing that it was a place for me to return.

As the months passed, I was forced into long stretches of bed rest, breaking from work, my passions, the world, and my voice. This is the cycle, after all, of the chronically ill. It is a sequence of retreat and victory, of silence and stories, and of mining the telos of one’s spirit.  What incites us to account our narrative to others relegates us to silence in other moments in a life lived with chronic illness.

I have to admit that at first my silence was “put upon” me. I was so engulfed in pain, fatigue, and just getting through one hour after another that I had no desire to communicate about the latest health trial. Yet, resignation turned towards choice, as I again reimagined and redesigned a future. It is a truth we face when dealing with an incurable disease that we must rewrite our future story after it is continually malformed by our bodies.

The poet Carmen Tafolla wrote: “I was the fourth ship. Behind Niña, Pinta, Santa María, Lost at sea while watching a seagull, Following the wind and sunset skies, While the others set their charts.” This post is dedicated to the future, to the reciting of a livable future, and to exploring the why in a life filled with medical chaos.

Illness is an invasion of identity. Since living through surgeries, a nine medication regimen, and too many medical procedures, I have searched for an explanation, a pathway, and a satisfactory answer to why. Why did this happen? Why me? I have done everything from pretending that the illness part of my life is nonexistent to studying the mechanisms and pathologies of the body; nonetheless, illness continues to lead its assault.

To live with a chronic degenerative disease one must constantly engage in meaning-making. Why? It is because illness is unremitting and untrustworthy. A medical crisis can topple all that you have worked towards in a mere blink.

Therefore, we are professionals at reconstruction and rebooting our future.  Often times, it is a future tinted by professional and personal sadness. Professional goals wane under the weight of the body often causing an individual to lose their job or relinquish ambitions. Illness demands a personal reimagining of what family looks like sometimes forcing an individual to move in with a family member who subsumes a caregiver role or surrendering the dream of having a family and experiencing parenthood.

Illness fractures identity and makes us feel less complete because completion is continuously interrupted.  I believe searching for the “why me” is not out of anger, jealousy, or pity but out of the attempt to take all these futures interrupted and find fulfillment in a life that no longer looks like the life originally intended.

Chronic illness mandates that the individual who lives with it coat themselves in an extra layer of depth because it is a permanent state and the human mind has forever raised questions about immutability.

I spent the last year in renovation.  It’s frightening; isn’t it?  There’s a trauma processing that must be completed in order to move forward in life.

When I was first diagnosed with endometriosis and a chronic pain condition due to a spinal injury, I had no idea nor was it explained to me that I was going to have to go through a continual cycle of insecurity. I was oblivious to the fact that I was going to have to live my life in a temperamental space.

It is of my opinion that chronic illness patients do not fit easily into the usual experience of loss because our loss is not consistent.  The future is unpredictable and so our stories are discontinued and resumed and this process repeats infinitely.

Thus we are forced to mourn each time and rebuild our futures anew holding our breath again that the house will not collapse with us inside. Our narratives remain disjointed and so without any desire for it we gain a level of complexity that is difficult to communicate and share with others even those we love the most.

I don’t know if there is a way to rid ourselves of this anarchy that illness brings. What I am still learning is that inside this chaos we must pledge to coming out of the other side of it. We must promise to find our voice again.

I have been away but now I am returning.  Each one of us can say that.

Although it may appear like a small triumph, I am proud of my return and I am proud of yours too.”

***

The above post was written by my friend C. over at her blog Para Las Fridas.  I have re-posted it here with her permission because it is quite honestly one of the most amazing accounts of life with chronic illness I have ever read.  From the moment I first read it, I was struck by the way C. managed to put into words aspects of my own experience that I had been afraid to face, much less articulate to myself.

Like the feeling of having lost time, of living according to a completely different calendar than everyone else.  Of knowing I’ve disappeared from the world, for months and years at a time, while life has marched on unrelentingly for everyone else.

The feeling of resurfacing, of returning, without knowing if it’s an illusion, or for how long I’ll be allowed to stay before disappearing again.

The feeling that I’ve become an expert at remaking my identity: after each disappearance and returning, constructing meaning again as best I can, assembling the pieces that make sense, filling in the gaps in a way I hope no one else notices.

C.’s words give me the courage to come on my blog and tell my own story, when I’m afraid it’s been too long, or no one will be able to relate.

I am not the only one who feels this way; I am not the only one who has disappeared and returned.

***

You can check out the rest of C.’s writing at Para Las Fridas!  It is simply incredible.

I also wrote this post outlining some of posts C.’s site that meant the most to me.

Lastly, you can also see what C.’s up to on Twitter.

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Creative Writing, eating disorders, My Story

A Clearing

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So I’ve been clearing out all the old stuff from my storage unit.  Finding so many reminders of all the plans I once had.

The high-heeled boots I bought senior year of high school, right before the Halloween dance.  My friends and I were all going to go as “sexy cops.”  (I know).

My running “spikes,” as our cross-country team called our specialized lightweight racing shoes.

It’s bittersweet, to look back and remember all of the optimism I had towards my goals– goals I would never reach.  Especially when I can recognize that some of those goals were pretty unhealthy.

Why did I need to wear high-heels?  They were only making things worse, as I was developing compartment syndrome.

Why did I need to run?  I truly loved it… but at the same time, I wasn’t truly listening to my body, and ran it into the ground.

So much pressure, to be thin, to be pretty.

So now I’m clearing out my storage unit, and there are just so many clothes.  So many clothes, in just about every size.

My size 2 clothes– the last clothes I bought before my health issues spun out of control and a medication forced me to gain weight.  At the time I thought it was horrible, but now I can see it was a blessing in a disguise.  It took something overpowering, and dramatic, to truly break me out of that way of thinking.

Chronic pain finally pushed the obsession with being thin out of my head.  There was no room for anything else; there was only survival, from one minute to the next.  I’m not sure if anything else could have done that– not without it taking years.

***

But I’ve held on to my old clothes all this time.  I loved them, because they were my way of telling the world, at 16, that I was an adult.  (An adult that wanted to dress just like Buffy!).

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My outfits, at the time, felt like works of art.  Handbags, sweaters, dresses– everything perfect.  My mom had picked out all of my clothes for me as a kid, and in the cutthroat world of high school girlhood, it took me a while to define my style.

Once I did, my clothes became my way of making a statement.  I discovered that the better I looked, the more power I had in the social world of high school.   If I looked perfect, it was harder for other girls to make fun of me.  My clothes became my armor.

When I gained weight at first (right after high school ended), I held on to all my old things because I thought I’d eventually be a size 2 again.  Then, once I realized I never actually wanted to be a size 2 again, I continued to keep them simply because it felt strange to part with them.

They’d helped me to define myself as an adult.  At one point in time, they’d protected me.

And they’d been waiting for me for so long, like a lost bookend, marking where I could find the life I’d been waiting to come back to when things finally got better.

I wasn’t ready, until now, to let them go.

But I don’t need or want that life anymore.  I no longer feel like I need to wear high heels in order to be a true girl.  I don’t want to put on eyeliner every morning like it’s war paint.

And I don’t need to weigh 115 pounds, or to be able to see the outline of my hip bones perfectly, in order to be attractive.

I just want to be me.

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My Story

The road to physical therapy school

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It occurred to me recently that I really haven’t talked much about my progress towards becoming a physical therapist on this blog.

So, if you’re curious, here’s my deal:

I have a Bachelor’s degree in the humanities.  My concentration was social theory, with an emphasis on gender studies.

My goals, when I was in college, were focused in a pretty different direction than the path I’m on now: I wanted to study social policy, and travel abroad working for various non-profits and human rights agencies.  I also wanted to become a psychotherapist.

I started down that road immediately out of college, working at a mental health agency so that I could gain experience before grad school.

Before this, I’d already had a lot of struggles with chronic pain, and had to have surgery for compartment syndrome.  Yet after college, I’d managed to reach some kind of holding pattern where pain didn’t cause me to miss work.  That was, until the awful winter of 2010, when a few things happened in a brief span of time that caused my pain levels to flare way up.

That was my breaking point– when I tried, anew, to get answers.  Finally, after months of searching, I found my physical therapist Tim, who had studied pain neurophysiology education with Neil Pearson.

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Ultimately, I was so inspired by everything I learned from Tim that it led me to consider becoming a physical therapist.

I’d always found physical therapy to be a fascinating field.  As a high school runner, I’d had a few serious injuries where I really needed PT to get up and moving again.   I had formed some great relationships with my therapists, and hung on every word they said.  A part of me was always a little bit sad when they told me I was doing well enough that I didn’t need to come back.  I would have gladly come back back every day, just to hang out and learn.

When I was a freshman in high school, I partially tore my hip flexor during a cross-country race and was on crutches for months.  It was a physical therapist who helped me overcome my fear and eventually start running again.

Then, when I was 19 and had surgery for compartment syndrome, it was a physical therapist who got me back up and moving again.  While I’ll always be grateful to the surgeon who fixed my legs, my PT was the one who gave me the confidence to actually start using them again.

And now, when my life had ground to a complete halt at age 25 because of constant, debilitating pain, it was a physical therapist who gave me my life back again.

I’d always had so much appreciation for PT’s.  Now, the idea dawned on me: why don’t I try to become one?

***

Growing up, I didn’t really consider myself that much of a science person.  Looking back, I think a lot of that has to do with the environment at my school, and how our science classes were taught.

Once I started looking into becoming a PT– taking classes, shadowing practicing PT’s– I realized I always had been interested in health science, and exercise physiology, and human anatomy.  It had just taken a different form.

I’d always wanted to do the best thing for my body.  I loved when my running coaches talked about strengthening, building endurance, the benefits of stretching.

And I’d always been interested in nutrition, and being healthy overall.

It’s just that when I was younger, I didn’t have the healthiest mindset, and took some of these interests too far.  But my eating disorder was not all of me– it was a snapshot of a specific place I was in, at a certain point in time, at a certain age.  Although I had some distorted beliefs, that does not mean I wasn’t also genuinely interested in health and fitness at the same time.

The difference is that now, I am able to come at it in a much healthier, stable, and more grounded manner, and know that I will be able to help others with similar struggles.

***

Five years later, I can say that I ended up loving all of my prerequisite classes, and I’m so glad I made the decision to take them.

It’s been an incredibly long road.  You see, some of the classes I needed to take had prerequisites of their own.  At the same time, due to my SI joint issues, there were periods of time where I found it incredibly difficult to walk, drive, or even stand up for more than a few minutes.

Despite of all of this, I’m finally at the point now where I’ve basically taken all of the classes I need in order to apply to PT school.  (I might need to take one or two more, depending on specific programs I might try to get into, but most of my bases are covered).

And honestly, I’m so glad I made this decision.  I realized that, while the humanities will always be my first love, I am also a science person, and have been all along.   I couldn’t see it at the time, but I know it now.

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My Story

The ‘Tyranny’ of Positive Thinking

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A friend posted this article about the pitfalls of positive psychology on Facebook this morning, and gosh– it resonated.

I’ve honestly been annoyed by the concept of positive thinking for a long time. It seems like most of the time, when someone tells urges you to be more “positive,” what they really mean is that they’re tired of listening to you.

The whole idea of trying to “block out” negative thoughts never made sense to me. If you have a problem, shouldn’t you try to solve it? Pretending the problem doesn’t exist isn’t going to make it go away. You have these feelings for a reason. It’s gut instinct trying to tell you that something is wrong and needs to change.

As someone who’s spent a lot of time battling health issues that appeared to many people to be “in her head,” I’ve probably been accused of dwelling on the negative more than the average person. (But probably not more than most of my fellow health bloggers– I know you guys will know what I mean!).

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I had never really considered how that mindset might be unique to where I live (the Northeastern US) until I spoke with my friend M., who is from Costa Rica. She told me that, since moving to the US several years ago, she feels a definite pressure to sweep problems under the rug and always appear cheerful– a pressure that was not there back home.

In Costa Rica, M. says, people have more of an understanding that problems are part of life, and that we all need to find someone else to listen once in a while. When you’re experiencing a crisis, it’s not so much a reflection on you as a person, like it is in the US. It’s more that it’s your turn to go through an aspect of life that everyone experiences occasionally.

***

Well, this Newsweek article totally backs M. and me up.

The author, Morgan Mitchell, cites several studies that have demonstrated that there are drawbacks, and even potential dangers, of positive psychology (and its less-nuanced cousin, positive thinking).

For example, Mitchell cites a recent study by Karen Coifman et al., which found that “when people acknowledge and address negative emotions toward their relationships or chronic illnesses, it helps them adjust their behavior and have more appropriate responses. Those negative emotions, in turn, benefit their overall psychological health. ”

That’s exactly what I’ve been saying. You need to fully experience the negative emotions you have, so that you can process them and then get to a better place emotionally.

Mitchell also references a study by Elizabeth Kneeland and colleagues, which “concluded that people who think emotions are easily influenced and changeable are more likely to blame themselves for the negative emotions they feel than people who think emotions are fixed and out of their control.”

In other words, people who view their own negative response to a given situation as a reflection of their own shortcomings are most likely to feel badly about themselves. To me this seems like a complete waste of energy– instead of judging yourself for your emotional response to something, wouldn’t it be better to focus on doing whatever it takes to create a better situation?

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As much as I know “positive thinking” annoys me on principle, this is still something I’m struggling with. To let myself experience a difficult situation and, instead of judging myself for the way I react, to recognize that there is actually some wisdom in that reaction. My truest and deepest self is letting me know that this situation is not okay for me, and I need to take steps to change it.

It’s okay if things don’t always work out. It’s okay if something you thought was going to be great turns out not to be.

***

One of my favorite bloggers, Beauty Beyond Bones, wrote a post about a similar situation the other day. She found herself in a professional situation where she did not feel respected, and was not being compensated adequately. After some time, she made the difficult decision to stand up for herself, despite the potential consequences it could have for her career. She wrote,

“Our actions, whether consciously or unconsciously, communicate messages to ourselves. What do we think we’re worth? Do I allow someone to walk all over me? Am I completely upending my life to meet the needs of someone who doesn’t even respect my time when I’m there?

I am worth respect. I am worth honesty. I am worth dignity.”

This is what I believe. Sometimes, when you really just feel awful about a certain situation, and the feelings don’t go away– those feelings are there for a reason. Instead of wasting time judging ourselves, or fearing others will judge us for our response, we need to trust that inner voice that tells us where we need to be.

Trust Your Nervous System photo courtesy of Cliph

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