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.

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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.

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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 5

For a few years, I was stuck: caught between all of the doctors I saw, who thought there was something wrong with me psychologically, and the fact that deep inside of me was a calm, inner voice that knew it just wasn’t true.

***

Feeling as though I’d run out of other options, I became really interested in alternative medicine.

I still wanted an explanation for my pain that had something to do with my physical body.

I wanted to be seen; I wanted to be heard: I wanted to be believed.  And the alternative medicine practitioners I saw were able to provide me with that validation.  They believed me– of course the traditional doctors hadn’t been able to solve my problem.

***

For a while, I went a little bit off the deep end.  I read just about every book I could find on energy healing.  I started taking turmeric capsules instead of Advil; I bought crystals.

I began to see traditional medicine as somewhat of a sham, propped up by the pharmaceutical companies.  And I thought anything that fell under the heading of “alternative” medicine had to be good.

***

I had a lot of reasons to reject the “establishment” view.  The establishment, after all, is what failed me.  I’d slipped through the cracks, so many times; the safety nets I’d counted on had turned out to have holes in them.  Of course, it made sense that what was “traditional” had failed me again.

***

Now, I don’t want to offend anyone by insulting or dismissing an approach that has been helpful for them.  But if I were to give you the complete list of everything I tried, well, just about every “alternative” treatment is on it.

However, the truth is that nothing I tried worked, and all of it cost me a lot of time and money.

Looking back, there were definitely times when I must have been “that crazy person,” insisting to people that they try this same new treatment I was doing, or that they consider the fact that their headaches or thyroid problem could be entirely caused by blocked energy flow in the body.

My views have changed a lot since then– the science classes I’ve taken have opened my eyes to just how much we really do know, using “regular” science.

But I still have a lot of empathy for the “crazy” people, because I was one.  I know how easy it is to believe a convincing claim from a caring person who probably genuinely thinks they’re going to to help you.  Especially if you don’t have much of a scientific background.

I used to believe some crazy shit I’d be really embarrassed to admit to you now.

That’s why, even though my perspective has changed, I don’t believe in shaming people, or embarrassing them, for trying to do something to heal themselves.  Everyone is on their own path… and some of our paths can get a bit convoluted.

***

I’m not trying to say that alternative medicine doesn’t help anyone.  I believe there are some treatments that are probably more legitimate than others (for example, acupuncture has been shown to have some pretty significant effects for pain relief, although evidence suggests it may be more due to the body releasing endorphins in response to a needle than anything else).

But at the end of the day, I was struggling from the effects of central sensitization, which none of these belief/treatment systems had any means of addressing.  There’s no way any of these treatments were going to help me, because even my original “diagnosis” was always wrong.

I felt better, emotionally, when I was given an explanation that had to do with my physical body… but ultimately, all of the treatments fell short.

After all, there was no way any school of thought was going to help me, if it didn’t even have a name for my problem.

To be continued in Part 6!

To read this series from the beginning:

Can music block pain signals? Music-induced analgesia

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I, personally, have known for a long time that music could help reduce my pain levels.  It’s just something that I always knew intuitively. Listen to music (good music, of course) –> feel better.

That’s why I was so intrigued when I found the following post from my friend Jo Malby on some of the science behind how music can lessen our experience of pain.  (I’m sharing it here with her permission, of course!).

Jo writes:

“The joy we derive from listening to music we love, much like anything that brings us joy, is always beneficial in helping us cope with chronic illness and pain. According to ongoing studies, researchers have found that there are many reasons for pain patients to listen to music they love.

Outside of the times when pain is too fierce or your body too sensitized and flared-up for sound or vibration, music can be a useful coping tool, though not only for the joy and escape music brings you.

With real physiological changes in the brain, listening to your favourite music can have a significant, positive impact on perception of chronic pain, as well as the pain itself, with some studies even finding music resulted in less intense pain levels.

Music also reduces anxiety and depression, both often natural consequences of unpredictable debilitating chronic illness and pain, and both difficult to manage and treat. Though it’s often under used as an natural anti-depressant.

Research has drawn its theories on how nerve impulses in the central nervous system are affected by music. Anything that distracts us from pain may reduce the extent to which we focus on it; music helps us shift our attention from the pain but it’s also emotionally engaging, especially if the piece has memories or associations.

With even the rarest of tunes now online — from YouTube to Spotify to Soundcloud to more exclusive sites — search for some of your favourite sounds or create playlists with songs that specifically help you through particularly difficult times or when pain is especially severe, and you need to calm it and your state of mind.

Personally, nothing gives my mood a lift like a little Billy Holiday, Dusty Springfield or Aretha; if feeling frustrated, Chavela Vegas (anger’s better in Spanish). More recently, Mozart’s been on repeat. I love music. (Almost) every genre. Find what you love. Play it. See if it helps you cope, lifts your mood, or offers a momentary sonic escape from the complexities that come with pain and chronic illness.

Scientists now know that listening to music involves a huge portion of the brain — auditory areas, of course, but also motor (movement) areas, the limbic system (involved in emotions), and areas of the brain believed to be responsible for increased creative thought.

Anything that lights up areas in the brain other than pain may also be helpful to reduce that pain.  ((Sidenote from Christy: this reminds me of some of the really cool resources I’ve linked to from Neil Pearson!)).

These effects may not be powerful enough in isolation but added to your pain management toolkit, using music when you are feeling frustrated or sad, depressed or angry, lost or alone, all can help you cope, feel better emotionally, and even lessen a tiny bit of pain.

A study conducted by Peter Vuust, of the Center for Functionally Integrative Neuroscience (CFIN) at Aarhus University, Denmark, found that fibromyalgia patients experienced less chronic pain after listening to their favourite music.

Additionally, recent studies on music therapy and chronic pain conditions found that music reduces anxiety, depression and pain— just from listening to music.

The effect is often referred to as ‘music-induced analgesia‘, and though that analgesia may be more subtle than profound, anything that helps you must be embraced.”

Some additional links:

The Conversation: How music can relieve chronic pain

BBC News: How music can reduce chronic pain

Prevention.com: More music, less pain?

Body in Mind: Music modulation of pain perception

And for more from Jo:

Jo Malby is an amazing writer living with and sharing her experience of complex regional pain syndrome (CRPS) on her site The Princess in the Tower.

She also runs the site Inspire Portal, where she shares resources to provide creative inspiration to writers (and other artists!).

Definitely check out more of what she has to say!

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.

San Francisco, Revisited

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It’s so interesting for me to go back to San Francisco.

As you may remember, I spent a few weeks in SF back in June, following a good friend’s wedding in Napa Valley.

I actually just wrapped up another trip out there. I spent most of September in SF, staying with a friend and trying to investigate whether I’d eventually want to move there for work and/or grad school.

***

The city of San Francisco is symbolic for me, for a number of reasons.

Back in 2005, one of my friends from high school (CA) and I had planned to travel to the Bay Area and visit our friend Karen, who was attending Stanford University at the time.

Our trip was actually planned for the same time of year– September.

However, I’d just had my surgery for compartment syndrome that spring, and at the last minute, I freaked out and canceled my plane ticket. After all I’d heard about San Francisco’s hills, I just didn’t think my legs were ready, and I didn’t want to take a chance. So CA flew out by herself, and I stayed behind to mend.

I was 19 at the time, and although I didn’t know it yet, I actually had somewhat of a long road ahead of me. As I’ve mentioned in previous posts, I didn’t travel at all in the first half of my 20’s, and it was only in the second half that I started to ease back into it with local trips, such as camping in the White Mountains of New Hampshire.

As most of you probably know, I developed my problems with central sensitization (CS) around that same time, shortly after my leg surgery. I definitely don’t think the surgery caused the CS, but as something that the body perceives as a “trauma,” it may have been one of the precipitating events.

I’ll talk more about why I developed CS in the future, but for now, what I want you to know is that for the next five years, I didn’t travel at all. The second five years, I got back into it slowly, but only local trips, and not by myself.

So now, at 31, after everything I’ve been through: compartment syndrome surgery, discovering pain neurophysiology education, struggling to heal my sacroiliac joints…. it feels almost like I’m living in a dream world. To be able to travel to San Francisco and walk around to my heart’s content– it’s like I was transported to a parallel universe.

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Here was the moment when it really hit me, how far I’d come:

I was walking from my friend’s house to the gym, and I ended up walking up some really huge hills. Like, gigantic hills– the kind you think of, when you think San Francisco.

And I was just doing it. I wasn’t sightseeing– I hadn’t set out to “walk the hills.” I was just trying to get from one place to another, like anyone. Like a local.

And it was okay.

I mean, if anything, I got a little bit of a wake-up call about maybe needing to do more cardio. But after all the years I’ve spent only being able to work out in a pool, it was such an amazing feeling to be moving through the world, as fast as I wanted, feeling my heart pumping. I was free.

It was a feeling I’d forgotten– to truly push my cardiovascular system to its limits with each footstep, out in the wind, out in the sunshine. For the past few years, I only got to experience that feeling within the safe, weightless environment of the pool.  While I am so grateful for my pool workouts, my trek on this day brought back a form of muscle memory. With the thud of each footstep, I was awake. I was back.

The thing is, this isn’t really meant to be a post about physical accomplishment. Instead, it’s about my unexpectedly “Returning” to an aspect of life that I was prepared to live without.

I had made peace with not being able to move the way I wanted. Not being able to travel, and more or less being stuck in place, taught me to try to always notice the beautiful little things around me. I’m not saying I succeeded all the time, but it was a skill that I worked at, and I got better at it.

I had to learn to savor the little things– the colors of the leaves in fall, the glitter of sunlight filtering through the trees, the taste of really good coffee– because it was the only way to make up for the things I’d lost.

Over time, it started to come more naturally. Maybe I was just getting into a better place in my life, emotionally. Maybe I was just growing up. Or maybe it was all of these factors.

But the point is, it happened. I learned to live without running, without traveling, without feeling free in a geographical sense, because I realized there were more important ways to feel free.

Now that that kind of freedom has come back to me, it’s like an unexpected bonus. And I view it gratefully.

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