Category: Mind-Body

Forget Picture Perfect: How Photography is Teaching Me Perspective on Grief, Stress & Illness

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I haven’t posted in awhile because I’ve been coping with some health issues that, well, I’m not ready put pen to paper and write about yet. It’s reminded me that grief over illness loss comes in waves, and isn’t limited to the onset of a condition. Body breakdowns fluctuate over the course of an illness. And limitations affect you differently at different stages of your life. In my 20s it was career and in my 30s it’s been more about family.

I’ve been trying to find those small, good moments and really appreciating them, whether they’re beautiful, or joyful, or hilarious, or super interesting. Not perfect moments. Waiting for those would be like waiting for pigs to fly. I’ve noticed that when something good is happening, I worry that it will be hijacked by…pain, fatigue, stress, GI issues (etc.,etc.,etc.) I’m constantly vigilant, waiting for another flare-up to make me cancel my plans or a painsomnia night to make me scrap my daily to-dos. Those may not sound like very serious problems to someone without a chronic illness. But never being able to accomplish anything makes you doubt your self-worth, especially in our productivity oriented culture. Disappointing the people you care about most threatens your greatest vulnerability, which is losing your community– losing love.

But hyper-focusing on what is bad won’t protect me from a flare or another illness-related loss. But it might prevent me from truly enjoying what is good, like getting a big hug from my husband when he comes home from work, or seeing a butterfly landing on a purple coneflower inches away from me.

I was missing out on those things because my mind was always probing each situation for how it could go wrong. Of course my brain was only trying to protect me, but it wasn’t making me any happier…or safer. I started photographing flowers on my daily walks as a way to stay mindfully present in the moment. (A very literal interpretation of the proverb to ‘stop and smell the roses’! Sorry, couldn’t resist). Each blossom feels like one counter-weight against whatever is bad or negative that day.

Once I started really looking I saw an abundance of opportunities to appreciate simple pleasures. And trust me, I’m still hurting over my losses. This is not me preaching that ‘thinking positive’ will make life all sunshine and rainbows. In fact, I started seeing a therapist earlier in the summer because I wasn’t coping well with recent losses. It felt like my illness were determined to take away every dream I’d ever had for myself. Not just ‘felt like’- my illnesses have taken away the possibility of fulfilling my old dreams. That is still heartbreaking.

But it doesn’t mean that nature isn’t still beautiful. It is. Sharing love still feels so good. Eating a great meal or laughing till I cry still makes my day. And discounting those moments because they aren’t perfect or are side by side with sad or difficult moments just gives more power to my illness, and just allows it to rob me of more of my life. But I won’t let that happen anymore.

Meditation has taught me how to concentrate on one thing, like breathing, while distractions go on around me, like sounds or random thoughts arising. Learning how to gain control over what I pay attention to has been life changing. Like a spotlight, I’m gradually getting better at focusing on good moments and putting them center-stage, while leaving the bad, like pain or worry, in the wings. It’s a skill, not a a one-time epiphany.

Photographing flowers has helped me keep perspective on my illness-related, by keeping the good as well as the bad in the frame. My therapist explained that being on a hair-trigger, ready to activate the fight-or-flight stress response adrenaline rush, or alternately, shut-down and numb-out (to horribly butcher several metaphors), is the natural byproduct of trauma. Chronic illness is traumatic. So finding ways of lowering the threshold for activating the stress response is really important for managing the mental health side of illness.

Natural beauty is a powerful healing force for me. I hope these pictures offered a moment to smile about today for you, too.

Overcoming Isolation: How to Enjoy Alone Time Caused by Chronic Illness

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Chronic illness is isolating. Spending hours alone every day can be lonely. Here’s what I have learned about embracing solitude and learning to be comfortable in my own company.

Overcoming Isolation: How To Enjoy Alone Time Caused by Chronic Illness

Before the pandemic, I went out for lunch with friend who had just transitioned from her office to working from home. She described dreading the long hours on her own, and the resulting cabin fever of spending so much time in one place. As I listened, I realized what a significant transformation my own feelings about solitude have undergone during my illness experience.

As an extrovert, I’ve never looked forward to spending an entire day by myself – never mind a succession of days. I prefer to be around people. I’m happier spending an afternoon in a café than my living room. When chronic pain forced me out of grad school, I was at a loss of what to do with myself at home all day.

But I think it’s about more than being an introvert versus an extrovert. Looking back, I don’t think I ever distinguished between loneliness and solitude. I wasn’t comfortable with my own company. As I reflected on what I have learned about embracing solitude, I came to a few conclusions about the lessons my experience has taught me and what I’m still working on.

Being Present For Simple Pleasures

The first step on my path towards becoming a reformed extrovert was learning to value being present. A year or two after being diagnosed with fibromyalgia and endometriosis, I was referred to a Mindfulness-based Stress Reduction course at my hospital – an eight week program on using mindfulness meditation to manage pain. I often credit mindfulness meditation for maintaining my sanity, but one of the most important lessons that I’ve learned is that there are many enjoyable moments in ordinary life that can enrich our lives if only we pay attention in the present moment. The sun on your face, bird song out the window, a great cup of coffee, or a snuggle with your pet are all examples of simple, everyday pleasures that are available for us to enjoy if we learn to tune in to the present moment. Being on autopilot most of the time meant that I was oblivious to these experiences. It’s often easier to savor these times on your own rather than in company, and that’s one of the reasons I have come to value my alone time.

Exploring New Horizons (From Home)

A second change in my perspective has come from exploring my interests and finding new hobbies. In other words, unleashing my inner geek. From reading, and watching and listening, I’ve discovered that I love historical murder mystery books, political news, blogging, archaeology documentaries and calligraphy. I feel fortunate to live in an era of podcasts, online libraries, free e-courses, audiobooks and streaming. If your illness keeps you at home much of the time, being able to explore new horizons from your couch is fantastic. Whether or not you are crafty, artistic, musical or nerdy, there’s something out there for you to geek out on. I honestly haven’t found anything else I prefer to do on my own as much as to feed my curiosity. In the process, I have learned about myself. Learning more about the world helps you understand your own place in it better. Discovering new interests, and new talents is deeply rewarding. Spending time that way really transforms loneliness to solitude.

Making Time For Meaningful Self-Care

Finally, seeing the dividends of investing in self-care has made me more open to making time for myself. This isn’t an easy thing to do. You often see advice about self-care made out to seem like it’s as simple as lighting some candles and taking a bath now and then. I think it’s really about changing your relationship with yourself. Who wants to spend time with someone they don’t like very much? No one. If you have an inner critic with a megaphone, of course you don’t want to spend alone time together. The prospect of spending time by myself months that I was always looking for another distraction. In the age of scrolling through social media and binge watching TV, I think enjoying me-time is almost a lost art form (not that I like binge watching any less than the next person!).

It takes a change in mindset to identify negative self-talk, challenge it and replace it with a kinder and gentler perception of yourself. Self-care is really about self-compassion, and accepting that you’re only human, just like everyone else – it’s okay to be imperfect and make mistakes. For many people  there is a lot of worry, guilt, frustration and self-blame tied up in developing a chronic illness. Cultivating self-compassion in the face of difficult circumstances is a long process, and I’ve found that many lessons need to be re-learned over time. Journaling, meditating, CBT, and therapy are all ways to improve your relationship with yourself. Learning to be more comfortable in my own skin has made me enjoy my own company much more than before. And now I’m much more likely to enjoy a quiet cup of tea, listen to music, meditate, or actually do any of the self-care activities by myself that are listed in the lifestyle magazines!

The Science of Savoring Simple Pleasures: How Mindfulness of Good Moments can Reduce Stress and Improve Wellbeing in Chronic Illness

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Does the following description capture what goes on in your mind as you go about your day?

Your frequently scan your body to assess changing pain levels, fatigue, body temperature, medication side effects, and mental function. You monitor your changing environment – from noise, lights, smells, the distance you have to travel, to finding a comfortable position to sit in, among many other features. Then you try to calculate how you should modify your plans based on all of these factors, like a computer running a complex algorithm.

It’s exhausting. In this state, your brain is constantly on red alert and your nervous system is tautly wound, waiting for the next threat or crisis to jump out and surprise you. And for good reason, since, if you have a chronic condition, your body is constantly assaulted by difficult and unpredictable symptoms, which in turn make it challenging to navigate different environments. However, when the brain and nervous system are frequently in crisis mode, they trigger a flood of stress hormones, including cortisol and norepinephrine. This reaction is called the fight or flight mode and it primes your body to cope with dangerous situations. Cortisol and norepinephrine cause a cascade of body wide changes – fast pulse, shallow breathing, racing thoughts, sticky palms, and tensed muscles. Studies have found that people living with fibromyalgia have a hyperactive fight or flight response, which is correlated with pain levels.

Being in a constant state of stress causes your mental, emotional and physical well-being to suffer. In fact, the frequent presence of cortisol actually sensitizes the region of the brain that assesses threat levels to stressors. This region is called the amygdala, and when it becomes sensitized to cortisol, it puts our central nervous system on a hairtrigger, ready to overreact to nonthreatening situations. Stress worsens pain levels, fatigue, anxiety and depression.

We want our brain to accurately assess potential risks and opportunities, to be vigilant but not hypervigilant. So how can we calm a stressed out nervous system? One promising avenue advocated by Rick Hanson is through a set of mindfulness practices that intentionally focus on sensory pleasures and good moments that we typically disregard. Instead of only scanning for negatives, like pain and fatigue, we do the opposite – deliberately bringing our attention to what feels good and enjoyable throughout the day.

Mindfulness means paying attention, on purpose, to the present moment, with acceptance. Mindfulness meditation is often taught as a brain exercise, in which you learn to practice concentrating on the present moment, one breath at a time. When your mind inevitably wanders off, you bring it back to the present moment, over and over. Gradually you get better at staying in the here and now for longer stretches of time. Just as importantly, you learn about the types of worries that draw your attention, like a moth to a flame. When you know more about the underlying problems that bother you, you can take better care of yourself while you cope with those challenges.

The point of these exercises is not to disregard all of the information your senses are communicating to you about how you’re doing. For example, body awareness is important for pacing when you live with chronic pain, so that you don’t overdo an activity and trigger a flareup. However, being mindfully aware is different than being hypervigilant. Life can often be easier to handle in the here and now. Sayings like “one problem at a time” and “we’ll cross that bridge when we get there” are good reminders about this simple truth. Most anxiety comes from ruminating on the past or worrying about the future.

It’s all too easy for me to jump from noticing that my neck is sore when I wake up to worrying that I won’t be able to do any computer work next two days and all of my work will have to be put on hold. That might happen, but then again it may not happen. It’s much more productive for me to do what I can in the moment, like taking a warm shower or gently stretching my neck than imagining all of the worst-case scenarios. Unfortunately, if you’re like me, simply resolving not to jump to conclusions won’t stop your mind from going ahead and jumping ahead anyway. Staying present takes practice.

Mindfulness also opens us up to the sensory experiences and good moments that we typically disregard while we go around on autopilot. Present moment awareness is a natural state of being that we’ve all experienced, perhaps while watching a beautiful sunset, savouring a delicious meal or sharing a poignant moment with a loved one. Often we wish we could be more present, more of the time. Mindfulness makes us feel like we are living our lives to the fullest.

Rick Hanson explains that we can turn these simple pleasures into informal mindfulness practices, by stopping briefly several times during the day. He calls these practices “taking in the good”. The first step is to notice a positive moment – essentially, stop and smell the roses. For example, stopping to recognize a sensory experience like taking your first step of coffee in the morning, enjoying a good hug, or gazing out the window. The moment doesn’t have to be perfect – you’re not waiting for pure bliss, just a moment of appreciation. Or it could take the form of a good feeling, like a small (or big) accomplishment, sharing a laugh with a loved one or playing with your pet. These moments are available to us every day but we normally forget them soon after they happen because, as Hanson says, our brains are “Teflon for good but Velcro for bad.”

The second step is to stay with the sense of enjoyment or appreciation for at least 12 seconds. Mindfully return your attention to your senses if it wanders off. I find it particularly helpful to notice where in my body I have the felt sense of enjoyment, such as a warm feeling in the heart region or a release of tension the neck muscles. Finally, intentionally decide to absorb this positive experience. You could imagine breathing in the good sensations or feelings that accompanied the experience. Hanson suggests visualizing putting the experience inside a box or imagining a warm glow spreading through your chest. I like the idea of imagining stringing a pearl onto a strand, with each one representing recent good experiences.

These practices may sound new age-y or silly but there is research behind them to show how they can change the brain and enhance a sense of overall well-being. The brain is comprised of billions of neuron cells, which signal each other across small gaps called synapses. When we repeatedly engage a neural circuit, it changes the brain: “active synapses become more sensitive, new synapses start growing within minutes, busy regions get more blood since they need more oxygen… [and] the genes inside neurons turn on and off (Hanson).” In contrast, less active neural circuits begin to wither. Intentionally focusing on positive experiences can lower the activity of brain regions that trigger stress and increase the activity of the nervous system associated with well-being. You can ‘use the mind to build the brain’, which is a powerful tool for coping better with chronic illness challenges. Personally, I have found a greater sense of enjoyment in the everyday since I began ‘taking in the good’.

First published in UK Fibro Magazine

Hanson, Rick. 2013. Hardwiring happiness: the new brain science of contentment calm, and confidence. Harmony: NY, United States.

Martinez-Martinez LA, Mora T, Vargas A, et al. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J Clinical Rheumatol 2014;20:14650

A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

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A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

When I think of the holiday season, two competing feelings immediately come up – nostalgic happiness at the thought of celebrating with loved ones (as well as the Christmas cookies), and impending panic at the logistical nightmare of shopping, decorating, baking and visiting. Chronic illness has tilted the balance towards anxiety outweighing anticipation because  my symptoms through so many obstacles in the way of getting ready for everything the holidays entail. Last year I shared mindfulness tips for managing the stress that can accompany the month of December – through staying present, being self-aware and treating yourself with kindness.

This year I’m reflecting on the true spirit of the holidays and what I really want to celebrate. The thing is – for most people, shopping till you drop, cooking up a storm, decking the halls, party hopping, and getting up early with the kids to open presents from Santa – is the essence of the Christmas celebration. Ideally, bonding with your loved ones over good food and the fun of exchanging presents puts family and togetherness at the heart of the holiday season.

A common criticism about how Christmas and other holidays are celebrated is that perfectionism over decorating and party planning, as well as greed in the form of materialistic gift-giving, take over the true purpose of the season. The expectations that we internalize and put on ourselves can really ruin the holiday spirit. What I’ve come to learn is that, If you live with chronic illness, you will inevitably fail to do all the things you’re supposed to do this time of the year. It sucks! But I’ve also learned that we don’t really have to live with the stress, disappointment and sense of failure that result from setting unrealistic holiday goals.

By returning to the core values underlying Christmas, Hanukkah, and other celebrations – generosity, compassion, hope, gratitude and love – I think we can find a new ways to meaningfully celebrate this time of the year. I’m trying something radical this year – extending some of those holiday feelings towards myself. So often I read tweet and blogs about how those of us who live with chronic illness are overachievers or perfectionists. Most likely the person you showed the least compassion and kindness to last December was yourself – am I right?

So what does the holiday season look like if I am compassionate to myself? Making more realistic plans and setting gentle boundaries is the first step. We have three families to celebrate with – my in-laws and my Mom’s and Dad’s families. This year we told everyone that back-to-back celebrations would not be possible. The end result  is that we have Christmas Eve plans, and Boxing Day Plans, but  we are staying home alone on Christmas day. Initially I felt quite guilty about this because I know everyone would love to see us on that day, but if I’m not gentle with myself I will ultimately end up having to cancel. And that would be worse! Compassion is like the oxygen mask analogy – you have to put yours on first before you can help the people beside you.

Another way that I am treating myself with more kindness is to use a softer and gentler tone in my own mind towards myself. When I start to feel stressed about not getting perfect gifts for everyone, or whatever problem that my inner gets judgmental about, I’m trying to take a deep breath and responding instead with more compassion and understanding. A good question to ask yourself is “what would I tell my best friend if she was facing this issue?”

I recently read a book called The Mindful Path to Self-Compassion which gave me the insight that, while we can’t change the challenging experiences or difficult emotions we face, we can change how we treat ourselves as we go along. Much of our suffering comes from resisting what is unfolding – worrying, ruminating, regretting, dreading, clinging, judging – rather than from direct experience of a painful circumstance. But if we can befriend ourselves, and compassionately hold ourselves while we go through a tough time, a lot of the unnecessary suffering can be short-circuited. It’s an ongoing practice, of course!

So far, I’m already finding it helpful to use the ‘loving-kindness phrases’ from compassion meditation to wish: “May I be safe, may I be peaceful,  may I be joyful, may I live with ease and wellbeing”. I repeat these phrases both when I’m sitting in meditation or feeling anxious during the day. This is a secular practice I feel comfortable with, but many people send a prayer rather than a wish. In the Christian tradition, you are asked to ‘love you neighbour as yourself’, meaning cultivating love for yourself and caring for others. This can be done as a blessing exercise: “May I experience God’s love”, repeated for peace, safety and wellbeing.

In the guided meditation, we are then invited to focus on our feelings of love and compassion for people we are close to by repeating wishes for their happiness and well-being (May he/she be safe…peaceful…joyful…live with ease and wellbeing). Then, we extend those feelings to strangers and people we may have difficult relationships with. Finally, we practice extending love and kindness to all beings in the world. Here is an additional guided practice, along with the script, from Mindful Magazine.

If you are in conversation with someone at a holiday gathering, you can silently repeat the phrases to yourself as a wish or a blessing for them. Staying present is one of the best gifts you can give those you care about, rather than getting distracted by ticking items of your ‘perfect holiday to-do list’. Loving kindness phrases can re-anchor you in the moment to the values you are trying to put at the heart of the holidays.

This Christmas, as I try to direct the spirit of the holidays towards myself, I hope that, in turn, I can pass it on by treating my loved ones with more gratitude and loving kindness! By emphasizing these values, I think  how we choose to spend our time will change. What form of togetherness actually gives you a sense of meaning and connection?  Since pacing limits what I can do, I’m going to prioritize the things that really matter and hopefully have a heartfelt holiday season!

Why Hard Work Doesn’t Pay Off in Chronic Illness: How to Stop Pushing Through Your Fatigue and Give Yourself Permission to Rest

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Why Hard Work Doesn't Pay Off in Chronic Illness How to Stop Pushing Through Your Fatigue and Give Yourself Permission to Rest

I’ve never been a big fan of napping. I was that overexcited kid, running around, yelling “No! I am not tired!” Moving on to the next thing I want to do has always seemed more interesting to me than stopping and sleeping. You can imagine how well that impulse has (not) translated into living with fibromyalgia. The metaphor I like to use is putting a racing car engine in a beat-up old car – my mind always wants to go faster than my body can keep up with. But it’s not just curiosity that pulls me forward. I also put a lot of pressure myself to push through, to keep working until it’s all done.

I’ve learned that always pushing forwards is toxic for my body. I’ve also learned that the impulse to soldier on isn’t a personal failing. Believing that “hard work pays off” is a social value, something we are all taught growing up.  We attribute positive character traits to people who spend long hours at work, without ever making time for themselves. We describe them as being committed, determined, effective, ambitious, responsible, and upstanding, rather than just calling them workaholics. The flipside – laziness – is a cardinal sin in our productivity-obsessed culture. But encouraging this imbalance between activity and relaxation serves to support unhealthy attitudes and behaviour around work.

I’m far from the first person to point this out. In recent years there’s been a movement to prioritize emotional wellbeing. You hear a lot about self-care, emotional balance, burnout, stress management, mindfulness, and disconnecting from social media, among other things. Psychologist Guy Winch, in his TED talk How to Practice Emotional First Aid, explains our favouritism towards physical well-being over emotional well-being. He points out that, while we learn from a young age to put a Band-Aid on physical injury, we don’t learn how to treat our psychological injuries, like sadness, loneliness, or anxiety. Psychological pain has a significant impact on the body’s state of health, and increases the risk of chronic disease. The mind and the body are interconnected, and what affects one has an impact on the other.

I think chronic illness magnifies the mind-body connection. Living in a state of constant physical fatigue has significant cognitive and psychological consequences. Brain fog, frustration, anxiety, a sense of helplessness, and many other responses are common among people living with illnesses involving chronic fatigue. Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center in Baltimore, says that “The emotional impact of a diagnosis of chronic fatigue syndrome is different for each person, but it relates to the loss of the ability to do the things you were good at before” (quoted in Everyday Health).

Put another way, fatigue causes people living with conditions like fibromyalgia, to experience multiple and complicated losses. These losses occur in areas that affect our sense of self-identity, like career, friendships, hobbies, parenting, and daily functioning. Kate Jackson (2014) calls them ‘infinite losses’ because they are not time-limited – instead they are unending, which makes them harder to resolve.

So, you might be asking, what does this have to do with taking a nap? For people who don’t live with chronic illness, resting might be a straightforward solution to fatigue. A physical solution to a physical problem. Even for healthy people, however, I doubt that’s always true. Call it stress, emotional overload, or burnout, the impulse to push through when you actually should stop and recover can result in significant psychological and physical problems. Our general preoccupation with work and productivity encourages unhelpful mindsets like perfectionism, shame, anxiety, guilt, and low self-esteem. In turn, these feelings and beliefs can cause us to double down and work even harder in order to measure up (Psychology Today). It’s very difficult to stop and listen to what your mind or body need when you’ve learned to routinely override those signals.

I’ve read countless tweets and blogs from people living with chronic illness who are frustrated with themselves for overdoing it on a good day and causing a flare-up. I’ve wondered why it seems so hard for me to pace myself, to proactively rest, to achieve balance between activity and relaxation. Over time I’ve realized these problems occur because resting is not just a habit. When the fatigue settles in it can often feel like a gate slamming shut.

Fatigue, along with pain, are the primary restrictions that have been placed on my abilities. The resulting frustration or sense of helplessness is a manifestation of the sadness and anger over the ‘infinite losses’ caused by chronic illness. Coping with these feelings is difficult. In this context, it’s a lot easier to say “just go and lie down” than it is to actually do it.

Behind the decision to stop and nap is a whole set of thoughts, feelings and beliefs about how you relate to work and productivity. If I’m writing an article and I feel brain fog and fatigue setting in, my first reaction is to feel frustrated with my body and tell myself to “tough it out.” Even when I take the reasonable step of stopping and lying down for awhile, there is a part of me that feels a creeping sense of guilt or self-blame. In a world where people with disabilities are applauded for “overcoming their limitations,” as if disability is a failure to move past, it’s hard not to worry if taking breaks is some kind of character flaw. I believe that it’s this mindset, this negative self-talk, that sabotages our attempts at pacing.

Becoming aware of our thoughts and feelings is a powerful way to take better care of ourselves – many people find that regularly practicing mindfulness meditation, journaling, or cognitive behavioural therapy techniques very helpful for developing greater self-awareness. Maybe I’m making a mountain out of a mole hill, but I think it’s important that we talk openly about the social and emotional impacts of valuing work and productivity over balance and acceptance. We need to prioritize healing the psychological as well as the physical. Because, ultimately, resting is an act of self-awareness, self-compassion, and self-acceptance, not just a solution for being tired.

Why Hard Work Doesn't Pay Off: Listening to Your Fatigue Instead of Fighting Through It

References:

Jackson, Kate. (2014). ‘Grieving Chronic Illness and Injury: Infinite Losses. Social Work. http://www.socialworktoday.com/archive/070714p18.shtml

Kromberg, Jen. (2015). ‘4 Difficulties of Being a Perfectionist.’ Psychology Today. https://www.psychologytoday.com/ca/blog/inside-out/201311/4-difficulties-being-perfectionist

Orenstein, Beth.(2010). ‘The Emotional Side of Chronic Fatigue.’ Everyday Health. https://www.everydayhealth.com/authors/beth-orenstein/

Winch, Guy. (2014). https://www.ted.com/talks/guy_winch_the_case_for_emotional_hygiene

 

Mind Games: How I Cope During a Chronic Illness Relapse Using Brain Exercises

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relapse

Around the holidays a couple of years ago, I got a bad cold which left me exhausted. Of course, I assumed that once I got better, my (limited) energy would return. It didn’t. I spent months in a state of brain fog and fatigue. By the mid spring, the relapse gradually began to ebb, although I still didn’t return to pre-viral levels for several more months.

The next holiday season, my pelvic pain increased substantially.  As I wait for more procedures, I worry about how I will cope with this ‘new normal’, which is interfering with my sleep and sometimes restricting my movement to the length of my heating pad cord!

I felt completely overwhelmed at the outset of my fatigue relapse last year.  First, there was the emotional reaction to a new situation: anxiety about whether it was here to stay, frustration that life was about to get more difficult, and grief at the prospect of losing what abilities I still had.  Secondly, there was the practical challenge of figuring out how I would cope, like what new treatment options to try or how to manage my daily routines and responsibilities.  Lastly, I faced the impact of a relapse on my relationships, such as the increased caregiver burden on my partner, and feeling less able to be present with family and friends.

My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. Now that I’m facing a similar situation, yet again, I wanted to write them out for myself –  I hope they may help someone else out there too. In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life.

1) Challenge Patterns of Negative Thinking: About a year after my diagnosis, I participated in a Cognitive Behavioural Therapy program for pain management. One of the core parts of the program was learning to identify negative thinking traps, or ‘cognitive distortions’.  These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves”.[i]

For example, if you think in “all or nothing” terms – a cognitive distortion – you might believe “if I can no longer pursue my career, I am a failure” (click here for a list of other cognitive distortions). A common belief among the participants in the group (me included) was: “Since I don’t work during the day, all I do is sit around the house wasting time”. The facilitator asked us to challenge this belief by making a list of all our daily activities. I was surprised to have a long list that included, for example, preparing my meals, going for a walk, reading a book, writing a blog post, doing my strengthening exercises, etc. I actually do quite a few things each day, and I rarely waste my time.

Now I try to identify when a negative thought is actually just a distortion and then challenge it with the reality of the given situation. I use a great app called ‘What’s up?‘ that lets you journal your thoughts and feelings, rate your mood and then connect them to any unhelpful negative thinking patterns (not an endorsement, just an honest review). It helps to get my head right instead of jumping to the worst-case scenario, which in turn helps me to feel better!

2) Be Present: One of the most powerful tools that has helped me to cope with my illness setbacks is practicing mindfulness, usually defined as “non-judgemental, present moment awareness”.

I attended a Mindfulness-Based Stress Reduction course at my pain clinic that introduced me to how cultivating presence could help me manage my pain.  Much of our anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in front of us at this moment in time.  Through mindfulness meditation, I have become better at recognizing when my mind as dwelling on the past or projecting into the future, and bringing my attention back to the present.

For example, I’m currently waiting on nerve block to treat my undiagnosed pelvic pain. I have a lot riding on whether this treatment will work – including being able to come off medications while my partner and I try to conceive. Just thinking about it makes me feel anxious and upset.  However, I won’t know anything until after the procedure, which is several weeks away.  Worrying about it now only makes me suffer more.  It’s better for my quality of life if I return my focus to the next best thing I can do for myself in this moment.

One reason I like the What’s up? app is because it includes several grounding exercises that ask you to identify things in your present moment environment, and bring you back to earth if you feel like you’re getting really caught up in a negative train of thought.  As my grandma used to say, worry about crossing that bridge when you get there!

Between spending time on your phone or binge-watching Netflix, it’s easy to become too distracted to enjoy the small moments in life. Meditation can help us relearn to stop and smell the roses. This is especially important for people living with chronic pain. Even during pain flares there are small moments of enjoyment if we stop and notice them — the taste of a good meal, sharing a hug, a sunny day, or a favorite hobby. Intentionally taking in the good moments by staying present while experiencing them is a powerful way to counterbalance the negative experience of feeling worsened symptoms during flareups or relapses.

[i] http://psychcentral.com/lib/15-common-cognitive-distortions/

Your Mindful Guide to Surviving The Holiday Season With a Chronic Illness

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Celebrating the holiday season presents many challenges for people with chronic illness, which can be very stressful. I’d like to share three easy mindfulness practices that have helped me to not only survive the holiday season, but get the most out of it. Mindfulness  is a practice of “paying attention, on purpose, in the present moment, non-judgmentally.”

Your Mindful Guide to Surviving the Holidays

It’s early December and that means we’re about to crash straight into the holiday season. As the shortest days of the year approach, many of us are anticipating gluttonous feasting, exchanging gifts, enjoying the company of family and friends and celebrating everything we have to be grateful for this year. Others are also anxious about the hectic schedule, financial strain or encountering certain crazy relatives (most families have at least one).

Chronic illness can complicate the holiday season further. Some people with chronic conditions feel like their family members don’t fully understand their limitations. Even the pressure to “just stay a little bit longer” or “pop by for a short visit” can cause us to push through when we really need to pull back – often resulting in a flare later on. If there are underlying conflicts with family members or friends, then spending a lot of time together attempting forced cheerfulness can also add stress. Constant fatigue, brain fog, food intolerances and pain can make frequent, large get-togethers focused around eating quite challenging, to say the least! Somehow we’re supposed to do it all without crashing from fatigue, badly flaring or getting a virus.

How To Get the Most Out of the Holidays By Using Mindfulness to  Manage the Stress

The consequence of having too much to do and too little time to do it in is stress. The symptoms of emotional and cognitive overload that accompany stress worsens chronic illness and  is a real challenge to manage this time of year. Emotional stress symptoms include irritability, anxiety, and low mood. Cognitive overload results in having trouble remembering things, difficulty concentrating, indecisiveness and constantly ruminating on what’s bothering you. If you find yourself feeling this way during the month of December, you’re not alone! My question this time of year is: how do I get through all of the challenges in order to be able to enjoy the holiday season?

I’ve come across many helpful posts challenges written by bloggers with chronic illnesses explaining how we can pace ourselves through the holidays, delegate responsibilities, adjust expectations and mitigate potential challenges. I’d like to contribute one more strategy for surviving the holiday season with a chronic illness – mindfulness.

I’m not talking about anything new-agey, religious or fringe. Mindfulness is a practical, evidenced-based approach to managing stress and reducing the symptoms of chronic illness. According to Jon Kabat-Zinn, a pioneer in the field of mind-body medicine, mindfulness means “paying attention, on purpose, in the present moment, non-judgmentally.”

Meditation is a way to practice being mindfully present. During meditation, the aim is to focus our attention by concentrating on a particular object, like breathing,  scanning the body, or repeating a mantra. Inevitably, we lose focus and become distracted by thoughts, worries, plans or emotions. When we realize this has happened, we gently bring our awareness back to the present moment – this breath, this moment.

“That sounds great,” you might say, “but the last thing I have time for is learning mindfulness meditation right now.” Do you have five minutes a day to watch television? Then you have five minutes to sit and listen to a guided mindfulness practice. Just sit. Just breathe. Just listen. That’s it. Here are three easy mindfulness practices that have helped me to not only survive the holiday season, but get the most out of it.

1) Take A Mindful Pause

One of the first casualties of a hectic schedule is time to process your experiences. The brain needs rest so that it can effectively take in information, process emotions and make good decisions. Otherwise we can become mentally and emotionally overloaded by trying to push through the stress and get on to the next thing. Mindfulness is a switch from the ‘doing mode’ (thinking, planning, worrying, shopping, baking, visiting… you get the idea) to the ‘being mode’ (think watching a sunset or savouring the taste of a great meal). Taking a few mindful breaks throughout the day gives us the mental rest we need to prevent becoming overwhelmed.

A mindful break can be as little as 1 minute but is usually 3 to 5 minutes. It involves intentionally shifting your attention to just sitting and breathing in the present moment. This year I’m planning on incorporating these pauses into my day. If I’m visiting, I might take a few extra minutes in the washroom just to breathe. Even if there’s nothing I need to do on a particular day, mindful breaks can still help reduce anxiety about future tasks and plans I’m worried about, by bringing me back to the present. The Free Mindfulness Project offers a number of excellent guided mindful pause meditations to download (as well as longer mindfulness meditations).

One of my favourite meditation teachers finishes his guided mindful break meditation by asking “what’s the next best thing you can do for myself right now?” Sometimes you can’t solve all your future worries but you can do something to improve things right now, such as making a cup of tea or delegating a task.

2) Put Love & Kindness at the Centre of Your Holiday Celebration This Year

Every year I face a battle with my own expectations about what the holidays should be like. It’s very easy to internalize expectations about what you ought to be able to do and feel guilty if you can’t live up to those self-imposed standards. Maybe you wish you could give your kids the perfect Christmas morning, go to every holiday party you’re invited to or cook the perfect traditional meal for your entire extended family. When you have to cut back on your activities, it can be hard to feel like you’re letting down some of the people you care about most in order to look after your health.

Unrealistic expectations, whether internalized or externalized, only cause unnecessary stress. Instead of trying to have a holiday worthy of a Lifetime movie, what if we refocus our energy on putting love, kindness, gratitude and giving at the centre of our celebrations? These practices can be incorporated into traditional family celebrations – like this idea of having each family member dedicating an ornament to something they are grateful for before hanging it on the tree.

But how do you stay in the spirit of the season despite the pressure of expectations? The ‘loving-kindness meditation’ can help you deepen compassion, and increase your feeling of connectedness to the people around you. In the guided meditation, we are invited to focus on our feelings of love and compassion for people we are close to by repeating wishes for their health, happiness and well-being (“May they be happy, may they be healthy, may they be free from suffering, may they be peaceful”). Then, we extend those feelings to strangers and people we may have difficult relationships with. Finally, we practice extending love and kindness to ourselves – a powerful and important component of the practice, especially if we are feeling guilt over our limitations. Here is an additional guided practice, along with the script, from Mindful Magazine.

3) Take in the Good

Are you more likely to remember compliments or criticism?  If you’re like most people, you pick the latter.  That is because the human brain has a built in “negativity bias”, which allows us to learn from and protect ourselves from bad experiences. Unfortunately, it can also make us stressed and anxious. During December, I often spend most of my time worrying about how I will make it through all my plans . Once it’s over, I sometimes feel like I’ve missed out on enjoying the best moments because I was worried about the next thing. One way to rewire your brain so that it takes positive experiences into account, along with the negative, is to be intentional about what Rick Hanson calls “taking in the good”. This is akin to the old saying to “stop and smell the roses”. But exactly how do you go about making this a habit?

The first step is to be mindful of positive moments (to notice the roses) – the warmth of a good fire, sharing a laugh with loved ones, the taste of turkey and mashed potatoes. Practicing mindfulness meditation can help with this part, but you can also just start with the intention to take in the good today. Second, pause for 20-30 seconds and focus your attention on savouring the experience, instead of moving on to the next thing. Then, let the positive experience sink into you.  You can do this by visualizing a warm feeling spreading through your torso or by mentally recognizing that by doing this exercise you’re rewiring your brain to tilt towards positive experiences.

If you do this several times a day, you can change the neural pathways in your brain so that positive experiences are ‘registered’ more in your overall outlook on the day.  This practice has been really helpful for my mental and emotional health while I deal of the challenges of chronic illness. Sometimes symptoms get in the way no matter how much pacing or stress management we practice. This can be disappointing. But I have found that taking in the good and enjoying the small moments really helps me to balance out the disappointments. One year I was too sick to leave home and had to miss Christmas Day with my family, but eating homemade cookies at home, with the tree lit up, while watching a Christmas movie was still a nice, cozy evening.

 

 

Optimism and Chronic Health Conditions: Is ‘Think Positive’ A Cure, A Daily Boost, Or A False Promise?

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Having a positive attitude will not cure you. Saying otherwise to people living with chronic conditions invalidates their experiences. But cultivating optimism can improve your quality of life, and help you to live better with a long-term illness.

Optimism and Chronic Illness

Are There Negatives to ‘Think Positive’ Advice for People with Chronic Conditions?

I was in my physiotherapist’s office when she probed an unexpectedly painful spot. This was the year my body began to fall apart and I had gone to see her in a desperate attempt to relieve the pain in my neck, shoulders, back and pelvis. When she found an agonizing point on my leg, I burst out in frustration: “Stupid body!” The problem, my physiotherapist informed me, was not physical, it was mental. My bad attitude about my body was the source of my pain. If I could learn to let go of my negativity, then my chronic pain would be resolved. Basically, positivity was the cure. I left her office both angry with her for dismissing my very real, body-wide pain, and riddled with self-doubt over whether my outlook on life was in fact the source of my illness. I wasn’t alone in my experience:

https://twitter.com/SaltOnMySpoon/status/905978211305230336

The idea that optimism is all you need to achieve anything you want, even recovery from illness, is now conventional wisdom. In her article Smile! You’ve Got Cancer, author Barbara Ehrenreich writes about her experience with breast cancer. Ehrenreich (2010) describes that, when she went online to learn from the experience of other survivors: “The first thing I discovered as I waded out into the relevant sites is that not everyone views the disease with horror and dread. Instead, the appropriate attitude is upbeat and even eagerly acquisitive.” She recounts examples of this kind of thinking, including quotes like this one from Jane Brody: “breast cancer has given me a new life. Breast cancer was something I needed to experience to open my eyes to the joy of living.” Ehrenreich calls this message “the tyranny of positive thinking.”

https://twitter.com/Amyv93/status/905916637274136577

But, Can a Positive Attitude Actually Improve Chronic Illness?

Is Ehrenreich too fast in dismissing the potential benefits of optimism? Research consistently supports the idea that having a positive outlook can lead to positive health outcomes. In fact, a number of studies have:

…shown that a high level of optimism is linked to both enhanced physiological recovery and psychosocial adjustment to coronary artery bypass surgery, bone marrow transplant, postpartum depression, traumatic brain injury, Alzheimer’s disease, lung cancer, breast cancer, and failed in vitro fertilization (Goodin and Bulls, 2013, p. 329).

Before we go any further, I think it is helpful to define what it means to have a “positive attitude.” Researchers commonly equate positive thinking with optimism. Optimists are defined as “people who expect positive outcomes to occur in their future” and who are “likely to persist in their goal-directed efforts, where as those low in optimism are more likely to withdraw effort, become passive and potentially give up on achieving their goals” (Goodin and Bulls, 2013, p. 329).

The rationale for urging patients to develop a positive attitude is, essentially, that it will enable them to recover from their condition, and improve their quality of life along the way. I think there is a crucial difference between these two claims. The first claim is that a positive attitude will actually change the course of your disease, while the second claim has to do with an improved quality of life while living with illness.

Stop Blaming the Victim: Chronic Conditions Are Not Cured by Positivity

When it comes to the first claim, Ehrenreich (2010) shares her frustration that  “it remains almost axiomatic, within the breast cancer culture, that survival hinges on ‘attitude’.” This message also happens to be wrong – researchers have found that optimism does not increase survival rates for cancer (Medical News Today, 2004).

The positivity dogma shifts the cause of disease from being a physical malfunction to a character flaw – if only you were positive enough you wouldn’t have developed fibromyalgia or your cancer wouldn’t have metastasized. It is the worst kind of blame-the-victim thinking.

And while it might seem easy for people living with illness to dismiss comments suggesting they developed their condition because of their bad attitude, the problem is that illness makes people prone to feelings of guilt. Not only are our own lives changed, but so are the lives of family, friends and colleagues who depend on us. We feel guilty for the burden that our illness places on others, and that makes us vulnerable to self-blame. As the American Cancer Society explains, positivity-as-cure can be a deeply destructive message because it makes the patient culpable for getting sick in the first case and places the burden of recovery on their ability to be cheerful about it along the way (Edmonson, 2017).

The pressure to be optimistic invalidates the normal and natural feelings of grief that accompany illness. To suggest that grieving itself worsens illness, that these feelings should be repressed in favour of positivity, actually makes learning to live with the condition more difficult. If you are a friend or family member of someone living with a chronic illness you should know that attempting help by saying “you should be more positive” dismisses the very real feelings of the person you care about. In fact,

“A study published in the New England Journal of Medicine that analyzed the effects of expressing authentic emotions among breast cancer patients. And guess what? The researchers found that women who were able to reveal honest feelings showed overall mental-health improvements and reported less physical pain than the women who kept things bottled up” (Edmonson, 2017).

If you are a person with a chronic condition, let me be clear – your illness is not your fault, your feelings of grief and anger are natural, and recovering or managing your illness does not hinge on being happy all the time.

But Cultivating Optimism Can Improve Quality of Life for People with Chronic Conditions

The second claim about the benefit of positivity is that your perspective will influence your experience of illness – that being optimistic will help you cope better with your symptoms.  Since symptoms like pain and fatigue are ultimately subjective (based on personal feelings), it seems intuitive that your mental outlook might colour your experience of symptoms. This is not to say anyone should try to be positive all the time, or at the expense of expressing authentic emotions, but that working towards optimism, hope and acceptance can reduce suffering and pain.

It turns out that there is a large body of evidence which supports this notion. Greater optimism has been linked to reduced pain levels in people with different types of cancer, as well as arthritis (Goodin and Bulls, 2013). Interestingly, optimism has also been associated with adjusting better to life with a pain condition because of factors like paying less attention to pain symptoms, better daily mood, and less catastrophizing (thinking the worst; assuming every negative event will be an overwhelming disaster).

The idea that a positive attitude could improve my quality of life with chronic illness feels less blaming and dismissive to me than the dogma “survival hinges on attitude” which Ehrenreich describes . First of all, it doesn’t suggest that developing fibromyalgia was my fault because it makes no claims about cure or recovery. Secondly, it makes positive thinking more of a goal to work towards, if I choose. Grief and acceptance come in waves and learning optimism is not about repressing sad or angry feelings.

The idea that a positive outlook might improve everyday life doesn’t dismiss the reality of grief or other negative feelings, but it does provide an option for cultivating a better relationship with my pain and illness, if I decide that my current state of mind is not helpful to me anymore.

Is a possible to cultivate optimism, hope and acceptance? It appears that optimism, and its related traits of hopefulness and acceptance, can be learned. Our brains have the ability to change by forming new neural connections with repeated practice, a phenomenon called neuroplasticity. I have listed a few resources below if you are interested in science-backed strategies for learning greater optimism.

  • An app called Bliss has a number of proven exercises that can increase optimism, such as expressing daily gratitude, visualizing your best possible future and purposefully savouring the good things that happen each day.
  • One of the most powerful tools that has helped me to cope with my illness is practicing mindfulness, usually defined as “non-judgemental, present moment awareness”. I attended a Mindfulness-Based Stress Reduction course at my pain clinic that introduced me to how cultivating presence could help me manage my pain.  Much of our anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in front of us at this moment in time. You Are Not Your Pain is an excellent book on learning mindfulness for people living with pain and illness.
  • Buddha’s Brain by Rick Hanson is a wonderful book with practical advice on how to retrain your brain to strengthen positive brain states like calm, joy and compassion.

So, How Does Positive Thinking Affect Chronic Illness?

  • Having a negative perspective does not cause illness.
  • Having a positive attitude will not cure you.
  • Saying otherwise to people living with chronic conditions invalidates their experiences and feelings.
  • It is natural to feel grief and anger over the onset of illness and healthy to express these emotions.
  • Working towards greater acceptance and cultivating optimism can improve your quality of life, and help you to live better despite the challenges of having a long-term illness.

References:

Edmonson, J. (2017, Sept 3). A positive outlook not always in your best interest. The Star.

Ehrenreich, B. (2010, January 2). Smile! You’ve Got Cancer. The Guardian.

Goodin, B. and Bulls, H. (2013). Optimism and the experience of pain: benefits of seeing the glass as half full. Curr Pain Headache Rep, 17(5): 329. doi:10.1007/s11916-013-0329-8.

Medical News Today.(2004, Feb 9). A positive attitude does not help cancer outcome.

 

Tune In: How Listening to Music Improves Fibromyalgia

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Listening to music can reduce pain, improve functional mobility, increase sleep quality, and reduce depression in people with fibromyalgia.

How Listening to music improves fibromyalgia

It is a truth universally acknowledged that we may not all like the same music, but we all like music. Our favourite artists help us celebrate the good times, express our emotions in the difficult times, and while away the time in between.

I’ve seen many article headlines, written by authors with chronic illnesses, acknowledging the role that music has played in helping them get through flare-ups, and other health problems. I’m not going to lie though, around the time that I was diagnosed, I mostly stopped listening to music on my own. You know how a song can carry you back to a moment in your past, like a soundtrack to your memories? Well, I didn’t want to be transported back to a time when I was healthy and free, by listening now to the music I played then. I also didn’t feel like finding new music. I’m not sure why, except that I didn’t feel that certain joie de vivre it takes to explore new things in life.

Research on the Impact of Music on Fibromyalgia

Then, I came across a study that made me rethink this choice: Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter.[1] Researchers found that when people with chronic pain listen to music for an hour a day, they experienced up to a 21% reduction in pain and a 25% reduction in depression. Another important finding was that listening to music made participants feel less disabled by their condition and more in control of their pain. It did not appear to matter whether individuals listened to their favourite music or relaxing music selected by the researchers.

I decided to do some further research to find out whether these findings applied to fibromyalgia. It seems that I wasn’t alone in asking that question. Several studies have investigated the impact of music on fibromyalgia.

A recent study looked at whether listening to a relaxing water and wave sound CD could reduce pain in individuals with fibromyalgia. There was a significant reduction in pain levels among participants who listened to the CD over a two week period, compared to a control group who did not listen to music at all. The study concluded by recommending music therapy for pain management in patients with fibromyalgia.[2] That’s an exciting finding, but since I don’t have access to the exact CD used in the study, how can I take advantage of these findings? I decided to delve a little bit deeper.

A second study investigated whether listening to your favourite music can reduce your pain levels if you live with fibromyalgia. One caveat of this study is that the self-chosen music was relaxing and pleasant. The study found that pain did indeed decrease after listening to music, becoming less intense and less unpleasant.[3] In addition, participants who listened to music also experienced improvements in their functional mobility, measured by the ease of getting out of a chair and walking. This effect lasted even after the music stopped. This suggests that music might be able to help individuals with fibromyalgia perform everyday activities more easily because of its pain relieving effects! Patients in the control group, who listened to “pink noise” (the sound of static) did not experience pain reduction.

But pain isn’t the only unwelcome fibromyalgia symptom. What about sleep? Listening to music designed specifically to improve sleep was found to be effective in a small study of patients with fibromyalgia. After four weeks of listening to the music at bedtime, individuals reported significant improvements in sleep quality.[4] The sleep music was embedded with delta sound waves, which pulsate within specific frequencies of brain wave activity that are associated with deep sleep (0.25-4 hz). Delta brain waves, which are the slowest type of brain wave, are associated with deep sleep. Listening to delta sound waves is thought to stimulate the production of delta waves in your brain. While this may sound like high tech science, unavailable to the average patient, finding this music is as simple as searching for “sleep music delta waves” in YouTube. Personally I have found this really valuable for falling asleep, getting back to sleep and resting during the day.

Why Music Improves Fibromyalgia Symptoms

The nerd in me wanted to know why music seems to have this pain relieving effect.[5] One possibility is that music is an effective distraction from pain (research has found that distraction activities, like memory tests, can help reduce pain). Listening to music is associated with the release of dopamine, a neurotransmitter that is known to have a role in the body’s natural pain relieving mechanisms. Music also produces relaxation, which in turn can help reduce pain levels.

Researchers of this last study believe it is important to listen to music you know and enjoy, because familiarity is helpful for sustaining attention. When we pay attention, where more likely to experience the benefits of listening to music. In another case of science proving the obvious, studies have shown that music has a powerful effect on emotions and mood, and that emotions and mood can affect pain. If you enjoy the music you are listening to, it may be more likely to improve your pain levels.

Needless to say, I’ve decided to put my headphones back on.

How Listening to Music Improves Fibromyalgia Symptoms

References:

[1] Blackwell Publishing. (2006, May 24). Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter ” ScienceDaily. <www.sciencedaily.com/releases/2006/05/060524123803.htm>

[2] Balcı, Güler & Babadağ, Burcu & Ozkaraman, Ayse & Yildiz, Pinar & Musmul, Ahmet & Korkmaz, C. (2015). Effects of music on pain in patients with fibromyalgia. Clinical Rheumatology. 35. DOI 10.1007/s10067-015-3046-3.

[3] Garza-Villarreal EA, Wilson AD, Vase L, Brattico E, Barrios FA, Jensen TS, Romero-Romo JI and Vuust P (2014) Music reduces pain and increases functional mobility in fibromyalgia. Front. Psychol. 5:90. doi: 10.3389/fpsyg.2014.00090

[4][4] Picard, L. M., Bartel, L. R., Gordon, A. S., Cepo, D., Wu, Q., & Pink, L. R. (2014). Music as a sleep aid in fibromyalgia. Pain Research & Management : The Journal of the Canadian Pain Society, 19(2), 97–101.

[5] Garza-Villarreal EA et al. (2014)

Book Review: ‘Memory of Health’ by Edie Summers

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book review_memory of health

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I was recently given the opportunity to review a new book by Edie Summers called Memory of Health. Edie Summers is both a wellness coach and chronic illness patient expert, with 20 years of experience in the alternative health field.

 

If I had to sum up Memory of Health in a sentence, I would say that it is essentially a manual of self-care for people living with chronic illness. The approach that Edie Summers takes to health and healing is truly holistic, which I think is perfectly summed up by a quote she includes: “Health, wholeness and holiness … all three share the same root word and all three share the same state of harmony or disharmony (Deepak Chopra).”

So what can you expect to find in this book? First, Summers shares her personal journey living with chronic illness, including how she recovered. She emphasizes the power of storytelling for well-being. Many of us with chronic illness can feel very alone in our experiences living with these conditions. Connecting with each other over our shared experiences is empowering. From making us feel less isolated in our experiences, to learning from each other, storytelling is very impactful. And there is much to learn from Summers’ story. One thing that really resonated with me was her relentless detective work to find what helped her to heal. The other was how Summers identified mental, physical and spiritual causes that contributed to her illness, and then made changes to effect her recovery.

Secondly, this book covers a wide range of factors that may contribute to chronic illness, and how to address each in turn, including:

  • identifying and removing environmental toxins that may exacerbate your condition
  • causes of chronic fatigue, including changes to the thyroid, anemia, microbiome, immune health, inflammation, depression, etc.
  • improving nutrition, restorative movement, relaxation, mindfulness, improving sleep etc.

In covering all these topics, Edie Summers keeps her focus on the systems that keep the body in balance. In her own words: “This is why I’m fascinated with systems biology which notices patterns, watches for the surfacing of self-organizing models, and observes healing from a holistic point of view. The thing is, nature is a dynamic system, which learns, evolves, and grows (p.120).”

In the final sections of Memory of Health, Summers provides a roadmap to self-care in order to help readers improve their well-being. The book includes detailed summaries of tips to improve physical health including diet modifications, supplements, super foods, relaxation, de-stressing, sleep support, yoga and many other important topics.

I think the most powerful section of the book is dedicated to mental, emotional and spiritual healing. Summers writes “The problem is, you cannot heal if you are not present in your body. This is your first step: get back into your body and stay there. It bears repeating: health resides in your body (p. 336).” Summers believes the road to greater presence is founded in self-love. Finally, she emphasizes connection– to loved ones, to activities that give us joy and to a sense of purpose.

Ultimately Summers sees all these different threads of wellbeing being woven together to effect synergy. She explains: “Synergy, then, is how health occurs, when the total is greater than the sum of “its” parts. A great example of synergy is the experience of listening to a symphony orchestra vs. hearing each individual instrument played on its own (p.280).”

At times I found reading this book challenging because the way it is written is very dense. Some sections interweave scientific explanations, personal observations and spiritual reflections in a way I sometimes found hard to digest all at once. I think the best way to read this book is to focus in on the sections you think are most applicable to your situation, rather than trying to read the entire thing in one go. There is a very detailed Table of Contents to help you identify the sections that you feel are most relevant to you, which is very helpful.

The other caveat is that all of these suggestions are based on Edie Summers’ personal experiences and should not be taken as medical advice. Make sure you consult with a healthcare practitioner before trying to implement any of these tips.

So, ultimately, who is this book for? I think it is ideally suited to anyone living with a chronic illness who feels like they have tried everything and nothing has worked. Memory of Health opens up many new avenues to pursue and can provide hope to people who feel stuck. It is also an inspirational read. If you are feeling in need of guidance on how to live with more purpose, joy or connection, even if you have a chronic illness, then I think this is the book for you.

Click here to see more reviews on Amazon

Click here for a 40% discount on Memory of Health from Lulu.com

Click here to visit Edie Summers’ website