A Year in Review

It seems like everywhere in blog-land reviews of 2015 and goals for 2016 are abundant. As 2015 is the first (half) year of our blog, we thought it would be fun to look back on our beginning.

Back in July we decided to start a blog, sat down, came up with a name and wrote our first post. Neither of us knew what to expect or where it would go, but we definitely had a lot to say on the topic - our list of ideas just kept growing and growing. 

For us the blog has been a journey. Writing some of these posts has brought tears. Others have challenged us both personally and professionally. We’ve learned a lot and read journal articles for “fun.” We’ve tried out some of the things we’re learning in our own lives. We’ve met some really great people, both online and in person. We get excited as we see our number of readers and our e-mail list grow. One of our first e-mails to each other went like this:

C: We’ve had 118 views on our blog. Do you think that was all us dealing with our formatting?

A: Well, I have a confession to make. I looked at it 118 times yesterday. (Totally joking)

But the cool news is it isn’t just us who is reading our blog. We’re excited to see all the locations our blog is reaching, and so grateful for the beautiful comments and questions we have received along the way. 

So, like any good blog review post, here’s a look back at some of the key points we’ve learned in 2015:

1.) It’s all about the nervous system. Well, we’ll admit, there are some other pieces in there. But we’ve come to realize that any helpful approach to pain management needs to take the nervous system into consideration. We’ve also realized just how much this is NOT discussed in conventional pain management. 

2.) Pain asks to be respected. There will be more on this topic in the future. Pain is, at the very basic level, an alarm. Ignoring it can lead to your body sounding the alarm louder. 

3.) There is lots of amazing information out there. And lots of people who are super excited about pain management and doing really cool research and clinical work.

4.) There are many tools that can help individuals take back some control of their lives. These tools can include: energy conservation, pacing, and planning. We’ve both had some very cool “reclaiming” moments in our own lives this past year. 

5.) There are people who are “pain superstars” and we can all learn from each other. In fact, everyone has their own superstar moments. 

6.) Sometimes pain doesn’t need to be viewed as the enemy or something that needs to be overcome or beaten. Sometimes a gentler approach is what is needed. We love Bronnie Thompson’s use of the term “flexible persistence.” 

So what’s next for our blog? Well, that picture is still forming. We have lots of ideas and topics we want to explore. This includes things that we’ve discussed lately but also questions that we’ve been asked by our readers. Please feel free to continue sharing your thoughts, experiences, insights, and questions. We love receiving your e-mails and comments! The ideas around pain management are expanding and changing at the moment. We really want to learn all we can and share this information with you in the coming year. While we don’t know exactly what 2016 will look like for our blog, we’re excited to see where it goes. We hope it’s full of lots of interesting, useful posts and over time becomes a place of encouragement, information and celebration of successes.

Merry Christmas

Chickadees and Berries from Amanda Ilkov Snowflakes from Di Hiller Designs.

Spa or Bootcamp: A Case For Considering the Nervous System in Pain management

Once upon a time there were two ladies who had fallen and ended up with a neck injury. Both had visited the ER and were sent home with a brace. One of the ladies was super relaxed about the whole thing and was somehow okay with what had happened. The other one was still in a bit of shock about the fall and completely wound up. Even just a gentle touch made her jump and scream like she had been hit. 

What was the difference between these two individuals? Mainly it was the state of their nervous systems. One had processed the fall, her injury, and was ready to get better. (How she did that so fast is amazing!) The other lady’s nervous system was still on guard, ready to pounce on anything that might be a threat. 

So the question today is: How effective is therapy when the nervous system is so wound up? It’s pretty hard to do effective therapy if you can’t even touch the person!

One popular pain center described their program as a balance between a spa and a boot camp. You mostly saw the boot camp part in the gym; they would encourage people to push harder, keep going when they were tired, etc.  And yes, their clients did see improvement...muscles were strengthened or stretched, there were increases in people’s endurance and the amount they could lift. Progress on charts. But looking at that program we just wondered, how much more progress could have been made if they emphasized the spa part too. If they took the time to lower people's nervous system response, and didn’t add to it by the “bootcamp” approach. What would have happened?

Our guess is that they would have seen longer term, sustainable changes. From what we’ve seen, pain and all that comes with it throws a huge amount of stress on our systems. Calming the nervous system down (so that it is not constantly on edge), opens the door for you to really benefit from any other therapy. This gives you a chance to integrate it, learn from it and move towards healing. 

So, how can we do this? Well, there are many ways therapists can help to bring the nervous system back to a more balanced state. Here are just a few ideas:

• Calm the nervous system through “relaxation” methods: visualization, acupuncture,  breathing exercises, yoga, laughter, massage, etc
• Create a relationship of trust with your client and validate their experiences. They don’t have to “prove” their pain, it’s just accepted.
• Reduce disability. Enabling your clients to do the things the need to do (teaching them a different way, changing the situation, etc) reduces the impact of the pain on their lives and in turn reduces the stress it places on their body.
• Address client's fears. Listen, educate, and try to come up with a solution. There are about a zillion new worries that come with pain and even acknowledging them can take some of the pressure off the body.
• Give your clients permission to rest. Often people in pain feel the need to keep pushing, which again adds more stress to the body.

If you’re a therapist we would love to hear what you do with your clients. What do you find works, and what doesn’t? If you have pain, what has worked for you? What are your thoughts? 

You might have noticed on this blog we talk a lot about the nervous system. Well, this is why. We believe the process of  learning to live well with pain can be only be enhanced by calming the nervous system. 

It’s kind of funny that this little post about the “spa vs bootcamp” concept has been hanging out with our draft posts since the beginning. It asked a lot of questions, provided some speculation based on experience, but didn’t provide a lot of answers as to why the boot-camp approach wasn't enough. And then we went to a course that talked all about pain and the nervous system. Lightbulbs went off! In the new year we’ll carry on this discussion and talk a bit more about how the nervous system relates to pain and why it is so important to acknowledge this connection.

Acknowledgements:
Weightlifter silhouette from freepik.com

The Importance of Self-Efficacy: A Mini-Post

Hello, and welcome to our second mini-post. We don't have a post to share every week, so we thought we would try sharing some mini-posts on the "in between" weeks. Today we have a quote to share with you. 

"I am not afraid of Storms, for I am learning how to sail my ship." ~ Louisa May Alcott

One comment we've heard from many people in pain (an echoed in the literature) is the loss of control. The feeling that pain is making the decisions in life. Paying attention to self-efficacy (and looking for ways to foster it) is so important because it can help us regain that sense of power and control. Knowing that pain isn't making ALL the decisions in our lives can have a huge impact on both the experience of pain and on quality of life. 

The Torn Blanket: How Pain Can Challenge Our Sense of Security

Recently I (Colleen) listened to an interview of Bill Moyers with Pema Chodron. In it they talk about security and the impact of challenging situations. When these situations arise, they can affect the parts of our lives that we see as stabilizing, the things that we use to create our sense of "ground." They discussed what happens when life removes this security and how we react to that sense of "groundlessness." 

This lead to a discussion about our reaction to pain becoming part of our lives. (That's what happens when you write a blog with your friend!) 

We think in many cases chronic pain forces us to examine the whole idea of security. For many people our grown-up “security blanket” includes our idea of health and our bodies’ capabilities. Our health is also inter-woven with other pieces of this blanket, like being able to provide for a family, do a certain job, or other parts how we define ourselves. The pieces that make up the blanket are different for everyone and depend a lot on individual beliefs and values.

When chronic pain (or disease) enters the picture it can change all this. It comes along and tears some pretty big holes in this nice secure blanket.  This can be a scary place and a frustrating place. For some it can be a place of loss, for others a place of anger, or possibly confusion.  All sorts of reactions can happen, and they can change over time. The parts that are torn and what parts are left will be different for every situation, and it is important to look at both parts.

So what do you do when you’re left holding a shredded blanket and looking at the gaps? We think that depends on individual beliefs and situations and the way each person handles obstacles in their life. We can't give you a one-size-fits-all action plan (as much as we would love to), but we can give you some things to think about

1. Be kind to yourself: This doesn't mean booking a $10,000 trip to your dream destination. It's more about treating yourself with kindness. Somebody once asked me (Colleen) to pretend it had been a friend in the accident, and to picture saying the things to her that I say to myself. I just started laughing and said "I would never say that!" It was a lesson that stuck - if I wouldn't say it to a friend, why is it okay to say to myself? 

2. Recognize the losses and allow yourself permission to grieve. It really is okay to not be okay sometimes. It's okay to be sad, frustrated, angry, confused or crying. Acknowledging the losses doesn’t mean you are weak or unappreciative of the good things in life. In fact we think it takes a lot of courage to really stop and acknowledge what has changed. Allowing yourself to recognize that the changes in your life are significant is  a huge part of creating the space to carry on. Try to find a balance - acknowledge the loss, but don't get stuck there.

3. Focus on the pieces that are still there. We know, we know, we can hear the groans through the computer. This isn't just one of those "glass half full" trivial comments people make. We realize this is so easy to say but not easy to do. We realize that sometimes it looks like the glass is totally empty and there isn't even a drop left. Even if there are big gaping holes in the blanket, there will also be pieces that are still whole. Look for these pieces, they might be hidden or frayed but they're still there. Celebrate them. 

4. Learn to live with the holes and adjust your expectations.  By keeping your standard bar at the same level it was when you were “better,” everything you do now could look like a failure in comparison. When really that’s not the case at all! By thinking this way, you are limiting yourself from recognizing successes in the present. It`s a fine balance between accepting the now and still leaving room for increased functioning, coping, and healing. 

When all you can think about is making it through the day, it’s tough. But do yourself (or your clients) a favour, and focus on one tiny change at a time. You may feel like your security blanket is gone, but it will come back. It will look different than it once did, but it will still be beautiful.

Acknowledgement

Thank-you to all the people who have shared their stories and wisdom with us.

If you're interested here is the link to the interview: 

http://www.pbs.org/moyers/faithandreason/portraits_chodron.html or here 

http://pemachodronfoundation.org/videos/bill-moyers-on-faith-and-reason-with-pema-chodron/

Pain Superstar

Hello! One of the things we hope to do with this blog is encourage individuals to start to take back control of their lives from pain. We don`t have a post to share every week, so we thought we would try sharing some mini-posts on the "in between" weeks. Sometimes this might be a short youtube video that we feel explains something nicely, a quote or a resource. Today it is a `pain superstars' post where we highlight an example, story, or lesson from someone living with pain. 

Verbal consent was give to share this photo.

I (Ashley) met this Pain Superstar at the Multiple Sclerosis Connections Conference in October 2015. She was making her rounds talking to as many people as possible, and she stopped to chat with me. She told me about how she had lived with pain for many years. She had 4 back surgeries before she was diagnosed with MS. She acknowledged the suffering she had experienced, but she was incredibly optimistic and positive. She explained that she had been asked in a recent art class to make a piece of art that described what MS meant to her. She made these glasses and this sign to show that to her, MS is something that “still allows you to see light and beauty”. She is a true example of living well with a chronic condition!

The Ability to Cope

How do you cope when your coping feels like it is gone? Sometimes all the pain, fatigue, stress, and everyday life challenges can feel like they pile up so high that one more thing is just too much. It’s like the figurative “straw that broke the camel’s back”. When we spend our lives close to that breaking point, it can leave us feeling easily annoyed, irritable, and frustrated with ourselves and others. It can feel like living in a really annoying itchy sweater, where every stimulus or stress becomes magnified, and so do our reactions. Sometimes our reactions add to the feeling of being broken, as we know that they are not in proportion to the problem and are different from how we would typically react to things.

All people go through this sometimes, with chronic pain or not. Tami Brady, a woman who has chronic fatigue syndrome and fibromyalgia, commented that "People are people. Some look like they have it all figured out. Trust me, they don’t. They are just good actors" (Brady, 2008). When chronic pain enters the picture and demands to be part of your life, there are bound to be times when you feel like you’ve been pushed past what you can take. This feeling could be brought on by too many stresses, not enough sleep, or a bad pain day.

These overwhelming symptoms can make it hard to deal with the other challenges life inevitably brings. One of the terms related to this concept is “frustration tolerance”, which is the ability to handle or deal with problems without getting upset (McCallister, 2013). It’s not surprising that when people develop chronic pain, their frustration tolerance changes. Their daily life stresses now include pain and the impact of pain. Other things that would not have been a problem before can suddenly become much more troubling.

When we asked our readers to send us their definition of pain, one response was "Pain hurts and affects everything. If I don't react how you think I should, please blame the pain, not me, or you."

"Please blame the pain, not me, or you." Such a short phrase but so very important. If you feel like you aren’t coping the way you should, like you’re too grumpy or irritable (or your loved one is), know that you are not just a grumpy, mean, short-tempered person. And like everything with pain, understanding helps. Understanding that pain affects our frustration tolerance and lessens our ability to deal with everyday stressors allows us to learn strategies to deal with it. After all, recognition is 50% of the solution, right? 

What comes next is realizing that even though life/stress/pain/fatigue has you down at this moment, it doesn’t have to stay that way. You can feel this moment, and then move on from it. You can gather your resources and strength and get through this. There’s a song by Katherine Nelson that says “I was born to stand tall, I was born to face the wind, I was born to feel heart break and to heal again”. Even when it feels like we’re completely spent, and all our inner strength is gone, it’s still in there somewhere. 

The key is learning how to access it. Those moments when life really has us down can be the hardest moments to remember how to find our strength. That’s why we love the idea Bronnie Thompson (2008) shared about “cue cards for coping.” The idea is that you identify the unique set of strategies that works best for you, and write them down on a card small enough to carry around with you. That way, when you need the strategies most, you will have a simple reminder to help you get through the worst times. 

Sometimes it helps to have advice and reassurance for yourself in your own words. When it feels like no one truly understands how you feel, you might find your own words the most comforting. I (Ashley) had a difficult first pregnancy. After the baby was born, I knew I wanted to have another one, but I was afraid of what it would be like to be pregnant again. Over several months, I shared thoughts and strategies with my husband that I wanted him to remind me of if the next pregnancy was also difficult. Eventually he said “Why don’t you write all these thoughts down for yourself to read? You’ll believe your own words a lot better than you’ll believe me anyway”. There was some truth to what he said. I took his advice, and wrote myself a letter. Later on, when I did become pregnant for the second time, I read and re-read that letter whenever the challenges felt like too much to face. 

So our suggestion is to take some time when you’re feeling okay, and think about what helps you cope. Write yourself a letter to explain it, or make some point form reminders on a card you can carry with you. Your set of strategies will be unique to you, but they might include things like deep breathing, relaxation exercises, music, calling a friend, heat or ice (ask your health care provider for advice on which one to try when), distraction in the form of a favourite movie, book, or video game, a you tube video that makes you giggle, massage, yoga, or any number of strategies to reduce the pain or improve your energy. Your health care provider can help you explore specific tools, but ultimately you know yourself best, and only you will know what combination of techniques works most effectively for you.

Acknowledgements:

Rope image courtesy of scottchan at FreeDigitalPhotos.net

References:

McCallister, M.J. (2013). Institute for Chronic Pain: Understanding Chronic Pain. Retrieved from http://www.instituteforchronicpain.org/understanding-chronic-pain/complications/depression on November 2, 2015

Thompson, B. (2008). HealthSkills: Cue Cards for Coping. Retrieved from https://healthskills.wordpress.com/2008/10/15/cue-cards-for-coping/ on November 2, 2015