Newfound possibility

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I’ve been away from my blog for the past month, and I have so much to tell you all. I took what was supposed to be a five-day trip to a wedding in California, and turned it into an amazing, impromptu two and a half week stay.

To be honest, I was really scared to take this trip. Since I first developed health issues at age 19, I have really not traveled very much at all. It’s only been in the past four years or so that I’ve started to open myself back up to small weekend trips around New England.

But California? I had to go… one of my oldest friends was getting married.

So I went. But I really didn’t want to.

I hadn’t traveled in so long that everything felt rusty. I’d clung to the same routine for so long, hoping my pain and SI joint issues wouldn’t get worse… and now, everything was about to change.

Now that I look back, I can’t believe I was so scared of a five-day trip. It’s not like I was traveling to the middle of nowhere. I was going to Napa Valley and San Francisco… two places that are hardly without amenities. I had just gotten so used to the idea that travel was not for me, that I felt as though I was traveling to a foreign country.

So I went.. and everything turned out fine. Better than fine. The wedding was in Napa, and then after that I spent two nights at my friend Karen’s apartment in San Francisco. We were having such an amazing time catching up, Karen finally getting to show me the sights and sounds of the city she’d been telling me about for ten years. After one day, we decided I should switch my plan ticket and stay. It’s something that felt so out of character for me… but I did it.

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It ended up being a great adventure, and in some ways… I feel as though I re-joined the modern world. (It feels weird to tell you all this, but it’s the truth). My health issues had forced me to stay still in one place for so long, that it seemed so much had passed me by.

Now, it was time for bootcamp. I had to remember how to book a plane ticket; how to check a bag and get through security. How to handle a rental car. I got an AirBnb account; I got Uber; I got Lyft. I had to navigate us all throughout Napa Valley for the various wedding events, and then back down to San Francisco.

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I had to put so many of my fears aside, because there simply wasn’t time for them. And I realized that (apart from the extreme amounts of money I spent on the trip) most of my fears turned out to be unfounded.

To be fair, I had some amazing friends to help me. My friend Karen is amazing, and so is my friend Amanda, who flew with me from Boston to be my plus one at the wedding. Part of the reason I asked Amanda to come – other than, of course, wanting her company– is that I was afraid I would need a lot of help physically, dealing with my suitcase and stuff like that.

But it was all okay, and if anything, I realized I really didn’t need Amanda’s help as much as I thought. Now, I actually think I could have made the trip alone (although I obviously still would have wanted to have Amanda come for the company!).

The lesson I’m taking away from this is that sometimes, change can be good. A new experience, particularly one that we fear, can be a great way for us to open ourselves to new possibilities, and to learn things we didn’t even know we didn’t know.

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Now, I’m not suggesting that things are always going to be easy, or that all those of us with health problems have to do is wave our magic wand, think positive, and hop on a plane, guaranteed a great trip.

There’s a lot that has gone into getting me to this point. Learning the right exercises to strengthen my body, and learning the right techniques to help calm my nervous system. My life is opening back up again, but it’s only been because of the time I’ve spent being mindful of how I live, and carry myself, and remembering to work with my body instead of against it.

This is why I feel so powerfully about some of the things I share on my blog– when you have chronic pain or fibromyalgia, it is possible for things to change.

I’m so glad I took this trip, and am so excited to see where my newfound sense of possibility takes me. I hope you will all stay tuned!

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Inner Limits

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I’ve realized something about myself recently– something that has implications for my ability to heal. I’m sharing it with you all, in case it can help spark a similar realization for anyone else out there.

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As many of you know, when I was in high school I had an eating disorder. I was very rigid; every day I ate a specific number of calories, and every day I burned a specific number of calories. If I wanted to eat more than my designated limit, I had to exercise even more.

Through obsessive calorie counting, and running an average of 5 miles a day throughout most of high school, I managed to keep my weight a good 10-20 pounds below my body’s natural set-point.

Sometimes, now, I forget what a big deal that really was. After all, it was something that was ultimately within my control, unlike the years of inexplicable chronic pain that came afterwards.

However, it recently dawned on me that my eating disorder past was affecting me more than I’d realized, in unconscious ways.

Right now I’m dealing with the very complicated and frustrating process of trying to stabilize my hypermobile SI joints.

I was finishing my exercises the other day, and after a good 2.5 hours of going to the gym, using the pool and then coming home and doing even more exercises– and then stretching– I was feeling exasperated. Why, after all of this time, am I not better?

Fuck it, I thought. Why don’t I just keep going? Sure, I just spent two and a half hours exercising, but there’s more I could do. I could do more exercises. I could do more stretches. I could get on my computer, and research more.

Then it hit me. A tiny voice, from 16-year-old Christy, telling me I was afraid to do more. I didn’t want to invest too much; didn’t want to give myself over completely to anything that involved fixing or changing my body. Because that’s what I did with my eating disorder. It was an around-the-clock process to keep my weight that low, and I ended up losing all other perspective.

Now I had regained perspective, but unconsciously, I was terrified of losing it again. In fact, I was keeping my fist tightly clenched around it, restricting the time I spent trying to fix my physical problems in a way that wasn’t all that different from the way I had once restricted my calories. In both cases, I was using an artificial number to place external limits on something that scared me.

Of course, as soon as I realized this, I was automatically able to write it off as a fear that wasn’t worth holding on to. 31-year-old Christy knows that just because she spends more time trying to fix her SI joints, it doesn’t mean she is going to go back to a rigid way of thinking and denying her body what it needs. If anything, it means the opposite.

So I’m going to listen to myself. I’m not going to force myself to do anything, one way or another. If I want to only do my exercises for one day, and then stop, that’s what I’ll do. Another day, if I feel like exercising, and then doing some research, and then going to the chiropractor, that’s what I’ll do.

It’s not about the numbers; it’s about the process. It’s not about imposing limits; it’s about flow.

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Graceful.

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I’m one of those people who is spiritual, not religious.  But I love holidays because of how everything slows down, and people come out of their shells.

In Boston, on a weekday… you better not dare to take an extra two seconds to make your turn, because you’ll definitely get honked at by at least one person.

But on a day like Easter, things are slower.  People come from out of town and are reunited with their families.  They go out for huge, multi-generational walks with grandparents and babies in strollers, friendly dogs pulling excitedly on their leashes, everyone actually saying hello to one another… It’s as if, for a day, the masks are taken off and you truly see the people you meet.

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These days, I am not always the most physically gracefully person.  Although I have had some good days with my SI joint, I’m still far from out of the woods.  Sometimes it’s really hard to walk and, in the hustle and bustle of everyone trying to get everything done, I often feel as though I am in the way.

And sometimes, people are not subtle about needing to get by me.  I don’t always walk with a visible limp– I don’t think people can tell something is wrong.  After all, I’m not elderly.  I don’t think it occurs to a lot of people that anything could be wrong.  It just looks like I’m oblivious, taking my sweet time and daydreaming while taking up space on the sidewalk.

But the thing is…I get it.  I know what it’s like to be in that mode.  I can feel myself switch into it when I’m in a hurry, and feeling a lot of external pressure to do things I don’t even really want to do (especially, in the past, when I’ve been on the way to a job I hated).

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I’m not one for trying to find the silver lining in every bad experience.  I don’t think everything happens for a reason.

I’m more about acceptance— about being okay with the fact that all this bad stuff happened to me, and there wasn’t necessarily a reason for it.  Maybe I didn’t need learn a lesson.  Maybe it just happened, and it was pointless.

However, something thing I’ve learned in the past few years of dealing with health issues is the value of going slowly.

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I realized I don’t like being in angry, rushing person mode.  I don’t like the stress that rushes through me when I don’t make a green light; I don’t like how I annoyed I get when the person ahead of me in line takes too long at the cash register.

I’d rather be the kind of person who notices that the painstakingly slow driver in front of me has just pulled out from a hospital parking lot, and that her teenage passenger is wearing a face mask (in other words, something’s seriously wrong).

The kind of person who realizes that the elderly man taking way too long ahead of her in line has probably just had brain surgery, and is out for his first post-surgery outing with his aide.  The kind of person who manages to smile at him as though nothing’s wrong, despite the dramatic white bandage wrapped around his head and the purple blood pooled beneath his eyes.

The kind of person who doesn’t think about herself and her needs first– instead, she thinks about how she can help.

I’ve been both of these people, and I know which one I’d rather be.

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Although I’m not as physically graceful as I’d like, it’s way more important to me to be a graceful person.

To be someone moves through life as smoothly as possible, without creating too much of a wake. To be someone who heals, and tries her best not to harm.  (And, when she realizes she’s made a mistake, apologizes).

After all, none of my lasting memories are about that great time I got exactly what I wanted.  My memories are about the things that move me: the times I went out of my way for someone else, and managed to sense intuitively what they needed.  The times when someone else did that for me.

People can be amazing, and incredibly smart and kind.  But you have to remain open to it; you have to let them.

I no longer measure myself in mile times.  I measure myself in how well I was able to make eye contact with that elderly man, without letting my face show how shocked I was by his appearance.

Or in knowing the right thing to say, when a friend comes to me for help in a crisis.

That, to me, is what’s graceful.

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Pink flower photo: alcidesota

Neil Pearson: Blending Optimism and Scientific Evidence

One of the things I really admire about Neil Pearson’s approach to chronic pain treatment is his optimism about our ability to re-train our nervous systems, once they’ve become sensitized to pain.

Chronic pain is obviously not a cheerful topic. Those of us who’ve struggled with it know what it’s like to come home from the doctor’s office feeling totally hopeless (or worse, insulted).

Then, on the other end of the spectrum, are the people who promise things that are too good to be true. In the six years I struggled with chronic pain before discovering Neil Pearson’s work, I tried just about everything under the sun. Over time, I came to find that the more optimistic someone was about their ability to “cure” my pain for good, the less their treatments actually helped in the end.

Neil’s approach is totally different, because while he has a very optimistic view on our ability to change our pain, his work is very much grounded in science, thanks to his training as a physiotherapist.

(By the way: if you’re new to my blog and don’t know who Neil Pearson is, or why I’m writing about him, you should probably start here!).

Recently, I’ve been looking through some of Neil’s older, open-access materials, which are now available under the “Resources” section of my blog (thank you, Neil!). Although I’ve been familiar with Neil’s work for a while now, I hadn’t yet seen these. I found them really interesting, because they provide a window into the thought process behind his unique perspective.

In particular, his article on the “Optimistic Scientific Recovery Model,” laid out a few key points that I felt like I’d sometimes struggled to articulate to people, so I thought I’d share them with you now.

Basically, Neil’s work is about helping people find a way to get past the limits of what they, or their doctors, had thought their recovery from pain might be.

His work is not meant to take the place of other medical interventions. Instead, it’s geared toward patients who have fully pursued all of their treatment options, and are still in pain. In other words, it’s for the patients whose doctors say there’s nothing else that can be done.

Neil’s point is that something else can be done. And in my own personal experience, that something else can be life-changing.

It’s all based on the concept of neuroplasticity– the idea that, with enough practice, we can begin to change the way our nervous systems function.

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There are many different aspects to how we can begin to try to change our nervous systems.  I’ve written about pain neurophysiology education before– the idea that when we learn more about how pain works, as well as what’s happening in our bodies overall, it can begin to diminish some of the emotional effect that that fear has on us.

However, as I read through Neil’s articles, I’m reminded that there are many other different angles to exploring chronic pain/neuroplasticity. For example, in the “Optimistic Scientific Recovery Model,” he also writes about the importance of mindfulness and body awareness; learning to relax our bodies instead of remaining tense, which only increases pain. It’s not just about exercises to increase strength; it’s about learning to move mindfully, in beneficial ways (something I know I personally could work on!).

He also talks about the idea that we can distract the nervous system from focusing pain by giving it other information to process. Things like breathing exercises, meditation, and visualizations can all help accomplishing this, as can rhythmic movements such as gum chewing. (I first wrote about this a few weeks ago, and it still blows my mind!  For more about the gum-chewing study, click here).

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I really think that Neil’s approach has the potential to help a lot of people– which is, of course, why I’m always talking about it on this blog.

Since I started working on this blog a few years ago, I have met so many great, interesting people who have been suffering from pain for a long time, and are taking matters into their own hands by doing their own research.  Open-access articles like these can be a great jumping-off point.  Some of them are geared more towards other medical professionals than to patients, but hey: information is power.  I think there are a lot of great ideas contained within these articles, which is why I’m so happy to share them with you.

For more articles like this, check out:

Key messages of understanding pain

Pain management strategies

Understanding pain basics

and many others to be found under the Resource section of my blog!

And, of course, Neil’s website is www.lifeisnow.ca. He has updated it recently with a lot of really great new resources for both chronic pain patients and medical professionals– you should absolutely check it out!

Happy researching!

Reading List: Vulnerability

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This is the question that has consumed me recently: how do people take their most precious and guarded memories, and spin them into stories, unfurling them to the world?

It seems so easy when other people do it– when you read a famous, heart-wrenching novel for class, and analyze its themes. “I could do that,” you say. “Someday maybe I will.”

But it’s so different when you begin to try– shockingly different. In real life, I haven’t begun– I’ve only hinted at my most personal stories. I’ve only begun to write them and tell them in my head.

In the morning I wake up too early, in a panic, short of breath. “What have I done?” I gasp. Then I relax. I haven’t actually written anything yet; haven’t hit publish.

I have so much respect for those who have. I’ve always loved and looked up to writers, but now I do so with a respect that is so much more real now that I’ve begun to consider the task myself.

So here, my readers, are a few things I’ve read recently that have inspired me:

Rian Kerfoot, Truth and Cake:

Mary Gelpi, Fibromy-Awesome: Getting Clean Real talk from a girl with fibromyalgia who talks about how, somedays, bathing is just not on the agenda. I’ve been there.

Bianca Sparacino: “You Are Not for Everyone.”

Beauty Beyond Bones: I love her whole blog, but I’ve recently discovered her early posts, which send chills through me. I so want to tell my story like this. (I was never hospitalized for my eating disorder, but her words resonate on so many levels).

Sade Andria Zabala: I discovered her a few months ago when I was heart-broken, and her words ripped me apart more and then healed me at the same time.

All of these pieces of writing are breathtaking — check them out!