Tag: mindfulness

How To Find Meaning Again When Chronic Pain Upends Your Life

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You’re sitting in the doctor’s office, being told you have an incurable illness. Maybe you have to leave your career, or pull back on your workload, with set accommodations. You can’t live up to being the involved wife, parent, sister or daughter you planned on being. Travel become difficult, athletic ability falls off, and favorite hobbies or pastimes become more challenging. But mostly you just don’t feel like you. A period of grief ensues over your previous life, and it crashes over you in waves.

Eventually you start asking the big questions. Can you live a good life despite pain? How do you find meaning again amidst all the change?

I don’t have THE answer, but I did find some answers. Why is something sustaining, nourishing, enjoyable? That’s what I had to ask myself in order to find meaning again. I came back to the saying, “A life well lived is a life fully experienced.”

I was very career focused B.F., finding satisfaction in the field of global health (HIV/AIDS prevention and treatment). Once all that stopped, I felt stuck and lost. The one thing I had been certain of, my “calling”, was gone. Making a difference through my career had given me a sense of purpose.

Before fibro, travelling was one of my favorite activities. Experiencing different cultures and ways of life was important to me because it had made my own worldview expand. Broadening my horizons made me feel vital and alive.

How to replicate that feeling from my couch at home? Can you broaden your horizons from home? Yes! By learning something new. On the traveling theme, free virtual live tours from local guides in English in Heygo are a lovely way to spend an hour. Time that feels spent on rewarding things makes it meaningful.

Learning via podcasts and audiobooks during my enforced rests turn a limitation into an adventure. I’ve found I enjoy learning about history, as a way to travel from my armchair. (I’m  a 🤓). Learning feels like time well spent, whether it’s listening to a historical mystery or an episode of a podcast on ancient Egypt. After all, curiosity keeps your brain healthy and young. What do you geek out about? It can be anything, from an academic subject, to a hobby, to DIY project techniques. Intentionally find ways to learn about things you find interesting, from online classes, podcasts, audiobooks, or just connecting with interesting people online and asking them questions.

Over time I came to see that there is a lot of life to live here, in ordinary life, without globetrotting or being career driven, which is what I believed at 20. But in learning to be mindful and still, I’ve found how much I missed before in my search for New Experiences, and how much being present enriches my life. Being on autopilot, or always looking ahead, meant I whizzed past sunsets, birdsong, long hugs, savoured meals, belly laughs and so many other moments. Connecting to the beauty and wonder all around us via our senses is possible, even while in pain, even at home. Finding ways to feel that makes life more worthwhile. Mindfulness as a practice, or just realizing the need to be present, means showing up for moments big, and small. Choose to stay with an experience instead of reaching for a distraction.

And the difficult experiences of chronic pain, surviving the limitations, still mean that you are living fully. I’ve grown in strength, resilience, compassion, self confidence and patience in ways I never would have before my illness. After all, what else really is the point of life other than to become a better, wiser version of ourselves on this journey? This is another way to have a purpose in life. I’ve come to value growing as a person as one of my most important accomplishments, instead of getting promotions, keeping up with the Joneses, or any of the other markers we are taught to measure our success by. Without fibro, I would have let external factors determine my self worth. It’s not that I’m grateful for fibromyalgia, or that I’m glad I have it, but I have found a way to make meaning out of it, and find a silver lining. I’m developing as I go; it’s a work in progress, but a worthwhile one.

I’ve written before about the critical importance to our happiness of self expression and contributing to something greater than ourselves. We are often taught that the only way to do this is to work and be a “productive citizen.” However, there are so many other ways to find connection, such as sharing your story and finding online relationships, to learn from and support others. Writing on my blog and now writing as a freelancer, has transformed my life. Supporting others online, teaching, mentoring, and sharing your experience are all ways to contribute, big and small.

Fiction writing has engaged me again in a new way through imagination. (I’m writing a historical mystery set in Niagara Falls during the American civil war, when the area was a hotbed of spies and intrigue). Creativity can be a form of salvation, as a craft, an art, music, interior decoration, in the kitchen, the garden, on the page, or anywhere else. We shift into an active mode, not passive mode when creating. Yet we also refrain from intellectualizing, analyzing, number crunching or any other left brain thinking. Creativity is about engaging intuitively, emotionally, and symbolically with the world, through self expression, using the right brain. It’s good for your heart; it’s good for your soul. Don’t disparage it as “unproductive” or unimportant, because it is a meaningful source of intrinsic pleasure. It’s meaningful because it’s a way of being open and engaging with the world around you (sensing a theme yet?), via your senses and interpretations, from your own unique perspective.

We find meaning in our relationships, in our faith and in our philosophies. But we have to be present, open and engaged to really benefit from these resources. That doesn’t happen overnight! But tuning in to our senses, our inner strengths, our creativity, our intrinsic interests and sources of pleasure allows us to connect to the world in ways that create and cultivate meaning in our lives. This is a form of strengths based healing – leveraging your inner resources to create a life fully experienced, and well lived – in spite of adversity.

Strength of Surviving: The Importance of Acknowledging Your Own Strength in the Face of Chronic Illness Adversity

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Getting through adversity with endurance and determination is a trademark characteristic of every single person living with chronic illness. This is the strength of survivors. The coronavirus pandemic especially hard on those of us who are sick already but I hold on to the fact each of us is stronger and more resilient than we give our selves credit for, and these inner resources will help carry us through this time.But to acknowledge you own strength, you have to know what it really means. Think about it… what does it actually mean to be strong?

What is strength?

Strength is often described in terms of a fight for control – pictured as a physically tough warrior doing battle against the forces of opposition (Kabat-Zinn). In terms of life with chronic illness, being a fighting warrior can mean advocating for better care from your doctors or standing up for yourself to maintain boundaries in a challenging relationship. “I have the inner strength to fight for what I need.” But this metaphor is relatively limited in how it lets us conceptualize our own strength.Strength can also be understood as having the internal resources to cope in difficult situations. A strong person might be described as having the capacity to exercise physical, mental or moral power in challenging circumstances. You might have a strong mind, a strong support network, strong principles, or strong abilities that help you navigate through life experiences. Learning to cultivate and rely on these resources is an aspect of strength that I would call resilience, and it’s an important part of living a better life with chronic illness.Finally, and I think most importantly for individuals with illness, strength is about endurance, tenacity and perseverance – think of the phrase “a pillar of strength”. This is the strength of survivors. Getting through adversity with endurance and determination is a trademark characteristic of every single person living with chronic illness. I love the phrase “remember, your success rate for surviving your worst days so far is 100%”.Jon Kabat-Zinn, a pioneer of mindfulness in medicine, created a meditation based on the visual metaphor of a mountain to help patients in his programs learn how to adopt a mountain’s qualities of strength, stillness and stability as their own. I would include an additional symbol – a tree –which offers additional insights on how we can understand strength as adaptability in a way that helps us cope with chronic illness. What can the metaphors of a mountain and a tree can teach us about the strength of survivors? How can we come to know our own grounded presence, our ability to encounter both good and bad experiences one day at a time, and our own will to survive, uplifted from deep within?

Being Grounded

The base of a mountain is embedded in the Earth’s crust, and the deepest roots of a tree ground it in the soil. In the same way, we can anchor ourselves in the present moment, and root our attention in the here-and-now. This is what it means to be “grounded in awareness”, which is a stable foundation for living that can be very reassuring in the face of overwhelming circumstances.Growing deep roots in the firmament of awareness is a source of great inner strength. If we stay mindfully connected to the present, then we don’t get swept away by memories, imaginings, and other mental or emotional preoccupations. Whenever grief over losses caused by illness arises – or frustration about physical limitations, or anger over inadequate health care – staying grounded in the present, even as you feel your feelings, provides stability, continuity and reliability. You can always count on just this breath, moment to moment, to anchor you. It is sustaining and nourishing for our well-being to be grounded in the present in this way – just like it is nourishing for a tree when its roots absorb water and nutrients from the surrounding soil.Meditation instructors often liken thoughts, feelings, and experiences to the weather. How would you describe the forecast in your own life today? Sunshine and blue sky (happy), overcast (low mood), partly cloudy with sunny breaks (neutral), storm clouds with thunder and lightning (anger), blizzard conditions (turmoil) – using the emotions-as-weather metaphor is a wonderful way to check in with yourself to identify how you’re doing throughout the day. Jon Kabat-Zinn explains that the mountain experiences these conditions on its surface – but underneath, the solid base sits in unwavering stillness. In the same way, beneath the thoughts, emotions and experiences of our daily lives, is the foundation of unwavering stillness that is our awareness. If we can learn to sit mindfully, grounded in the same resolve and endurance as a mountain, no matter what the conditions on the surface landscape of our daily lives might be, we can adopt its strength as our strength.

Being Mode: Equanimity as Strength

A mountain is the quintessential symbol of endurance. The mountain rests in “being mode”– a calm, abiding presence withstanding the inevitability of change over time. A mountain knows at its core, of each experience, that “this too shall pass”. The mountain represents equanimity.Everyday life with illness is extremely unpredictable. Chronic illness exemplifies the saying “man plans, and God laughs.” Physical symptoms constantly fluctuate, which makes planning very difficult. Over time, forced periods of inactivity and rest due to flare-ups make it difficult to continue persevering at things – from friendships, to jobs, or projects. The stop-and-go nature of life with sickness makes it hard to accomplish things or to cultivate relationships, and the constant sense of uncertainty causes a pervasive feeling of powerlessness.The natural reaction to these changeable circumstances is to double down on “doing mode”. For example, you might stay up all night researching your illness, create a 40 item treatment plan, or drive yourself to “push through” tasks regardless of pain or exhaustion, in order to be more productive. “Pushing through” does require strength, but it is the fighting, warrior-type of strength we discussed earlier. This works in short bursts, and can sometimes be necessary, such as pushing through physical discomfort to attend a meaningful family event or to advocate for yourself with a dismissive doctor.But like clenching a handful of sand in a closed fist, these tactics don’t help you hold on to predictability or productivity for very long. We can needlessly expend our limited energy in a constant, exhausting battle to regain control of our day. But, as you likely know all too well, pushing through today usually only leads to a crash tomorrow. What might happen if we switched to approaching life’s challenges using the endurance and tenacity of “being mode” rather than engaging in the battle of “doing mode”?We can use the symbol of the mountain to represent what embodying equanimity as an inner strength could look like. When difficult experiences, thoughts or emotions arise, rather than always seeking to analyze and control these circumstances, we can rely on our inner awareness as a solid foundation – building on the enduring resolve and unwavering stillness of mindful presence to persevere through the storms of life. Releasing the need to control our life circumstances can feel like an enormous weight lifted from our shoulders. Instead, we allow circumstances to be like the weather on the mountain – ever-changing – even while the mountain endures as a still, rock-solid presence. In this way, cultivating equanimity allows us to build inner strength.

Strength in Flexibility

Like a tree, you have shown determination to survive, no matter how challenging the environment has been. You have endured, one day at a time. This inner strength comes from your core, which supports you like the trunk supports a tree.The tree has a powerful lesson about strength to teach us – because it is both strong and flexible. The trunk stands firm, yet the branches bend in the wind. If the wood of trees was unyielding, all trees would be brittle and snap in stormy weather. In fact, the trees that have adapted to survive hurricanes are the most flexible of all – picture a palm tree bending to withstand the onslaught of Category 5 hurricane strength winds one day – and then standing serenely under a tropical sun the next. Flexibility, and adaptability, in the face of adversity, increases resilience. No matter whether we face sunny days or storms, the tree teaches us to stay grounded in the present, to hold ourselves upright using our inner strength, and to be flexible in the face of the winds of change.

When I realized all of the strength I needed was already inside me, it changed how I approached the challenges of illness. Of course I feel anxious and worried; the feelings don’t disappear. But reminding myself to stop, breathe, and plant my feet in the present gives me hope that there is a path through whatever difficulties I face. I can deal with just.right.now. The stillness and stability of just being, of our awareness of each moment, is always there to count on, to ground yourself in. Endurance is made up of perseverance in moments, and days. I’ve gotten through every difficult minute, hour, day, and season I’ve ever faced, and so have you. I don’t know what the future holds, and I try to stay open to change. But I have an approach and a way to navigate what comes, and that is the strength of surviving. I know that now, and it makes all the difference.

to cope with You can find the mountain meditation in any Mindfulness Based Stress Reduction program, which is taught all over the world, in the book “Wherever You Go There You Are” by Jon Kabat-Zinn, or on the free, non-commercial site http://www.freemindfulness.org/download, under ‘Guided Imagery’.

Coping With Uncertainty: Going Where the Flow of Your Chronic Illness Takes You

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Unfortunately, illness takes away much of our control over our own lives. But there is a blueprint for coping with life’s fundamental unpredictability. Putting the anxieties and unknowns of life under the heading ‘Future Events I Cannot Control’ helps to keep me sane, especially in the face of scary symptoms.

Coping With Uncertainty:

Spring lends itself to new beginnings, from planning spring cleaning, to starting up projects, to contemplating healthier choices.

When you live with chronic pain, it’s easy to decide on a new initiative, but difficult to actually accomplish it. The unpredictable and overwhelming nature of fibromyalgia and chronic illness symptoms mean that completing something isn’t only a matter of motivation and effort. Unfortunately, illness takes away much of our control over our own lives. This leads to feeling powerless, which is hard to live with. You have to go with the flow of your illness, wherever it takes you.

It can help to take the long view on the uncertainty of life. As they say, “humans plan, and God laughs.” All people have to contend with the fact that they cannot control the future. This truth may be more visible in the lives of people with chronic illness, but it applies to everyone. Striving and straining to attain the impossible — control of the future– can be an exhausting and defeating waste of mental and emotional effort.

I recently developed a mysterious knee pain, and my knee becomes red and swollen sometimes. This has significantly limited my ability to walk and drive, and do basic daily  activities. While I wait on multiple referrals to specialists, I have to live without knowing whether I will I have to permanently live with this new disability. Unknowns like this are scary, and naturally produce worry and anxiety. At times like this, I come back to the Serenity Prayer: “grant me the serenity to accept the things I cannot change, the courage to change the things I can , and the wisdom to know the difference.” Beyond containing a universal truth, I think that this prayer offers a blueprint for coping with life’s fundamental unpredictability.

During a period of heightened uncertainty, it’s useful to mentally review the worries that arise, and divide them into two categories: things you can change, and things you can’t control. For the first category, put the analytical, problem-solving part of your brain to work coming up with strategies and  to-do lists. In the case of my knee, that has included day-to-day coping strategies to make myself more comfortable. For example, I bought a chair for the shower to make washing easier.  I looked up ways to make at-home ice packs using water and rubbing alcohol in Ziploc bags so that I can ice my leg frequently to keep the swelling down. I’ve been keeping careful track of my daily steps so that I don’t go beyond what I can handle. While these proactive steps don’t address the fundamental question about what will happen in the future, they do make me feel more in control of the present. It isn’t easy to do something that makes me feel more disabled than a month ago, like sitting in the shower, but I’m doing what I can, and that feels much better than doing nothing.

So what about the second category — the things we cannot change? Sometimes the simple act of acknowledging  that there are things beyond our control can be a relief. When worry and apprehension take over your mental attention, they’re often based on the assumption that you have the ability to change external circumstances. Setting that burden down can be freeing. Of course this doesn’t mean that you stop caring about outcomes. It’s a fallacy to say that choosing to live in the present without always being preoccupied by future worries means that you don’t care about what will happen.

Putting the anxieties and unknowns of life under the heading ‘Future Events I Cannot Control’ helps to keep me sane, especially in the face of scary symptoms. My Grandmother used to say that “we’ll cross that bridge when we get there.” The older I get, the more I realize the wisdom of that saying. As mindfulness practitioners like to remind us, we only ever live in the present moment, not in the future, or the past. The visual of a mountain, sitting still and unmoveable in the face of all weather and seasons, is sometimes used in meditation because it captures the spirit of being grounded in the present. There are different practices that can help us to cultivate equanimity in the face of uncertainty, such as mindfulness, cognitive behavioural therapy, or prayer. The gist of these comes down to being self-aware about what we mentally focus on, and deciding whether the issue is something we can change or something we cannot control. We need to do what we can to address the things within our power, and let go or surrender what we cannot (over and over again, sometimes). In the long-term, I don’t know what will happen regarding my knee. Right now, I think I will go get another ice-pack and start thinking about what to make for dinner.

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Go Beyond Self-Care: Why We Need To Talk About Self-Compassion Instead

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Why We Need To Talk About Self-Compassion Instead

 

Bubble baths. Lit candles. Dark chocolate. Steaming cups of tea. These are the self-care recommendations we are regularly encouraged to add to our daily lives. I love these things as much as anybody else. But adding a list of temporarily enjoyable activities to your to-do list is ultimately only the frosting on the cake. It feels good, but it doesn’t substantially change anything. In fact, sometimes these activities can feel like extra obligations; something the average super-woman or man is expected to fold into their life, along with all the other demands on their attention.

Self-compassion means “cherishing yourself in the midst of emotional pain and distress” (Germer, 2009).[i] When you hear about a struggle that your best friend, child, partner or other loved one is facing, the feelings of support, good-will, and love that you feel for them together represent true compassion. Sadly, it’s much harder to feel those things for ourselves. Often we respond to challenging circumstances by criticizing ourselves for getting into the situation or pushing ourselves too hard to get out of it. This just piles on suffering on top of suffering.

In contrast, befriending yourself, and intentionally directing compassion towards yourself, changes your relationship to difficult thoughts, feelings and experiences. It sounds easy, but treating yourself with the same acceptance, kindness and understanding you extend towards your friends and family members is something very few people actually know how to do.

What Is Self-Compassion?

Researcher Kristin Neff has identified three elements of self-compassion– self-kindness, mindfulness and common humanity.[ii] Each element of self-compassion corresponds to an opposite element of negative emotional reactivity that increases suffering; namely self-judgment (the opposite of self-kindness), self-preoccupation (the opposite of mindfulness) and isolation (the opposite of common humanity). Let’s delve further into what each of these terms mean.

  • Self-kindness means to react with warmth and understanding to your own flaws and mistakes. By adopting this attitude, you treat yourself like a friend experiencing a setback rather than a critic evaluating a performance (self-judgement). Self-kindness means offering yourself the support and comfort that a close friend would. In a difficult moment, ask “what is the best thing I can do for myself right now?”
  • Mindfulness in self-compassion involves acknowledging the temporary and changing nature of your own thoughts and feelings, seeing that they come and go like clouds in the sky. Instead of ruminating on or avoiding feelings grief or frustration about the losses and limitations that chronic illness imposes on our lives (self-preoccupation), we recognize them, feel them, and let them move through us. Tara Brach says that “compassion honours our experience; it allows us to be intimate with the life of this moment as it is.“[iii]
  • Common humanity means saying to yourself “I’m only human, just like everyone else,” instead of feeling alone in the world with your difficulties (isolation). It involves taking a wide perspective, remembering all the people in the world who also live with chronic illness, and knowing that it’s more than likely that someone else has been in the same spot you’re in. After all, having an illness or disability is a common thread woven into the fabric of human experience.

Self-Compassion Meditation Practice

Self-compassion sounds good, but how do you actually put it into practice? How do you go about befriending yourself and changing your approach to coping with difficult circumstances? A type of meditation called loving-kindness meditation, which a secular practice based on traditional Buddhism, can point the way. Sharon Salzberg, a pioneering meditation instructor who brought loving-kindness meditation to the west, describes it as “a living tradition of meditation practices that cultivate love, compassion, [and] sympathetic joy.”[iv] Based on the common principles of kindness, mindfulness and connection to our common humanity, I use the terms loving-kindness and compassion interchangeably. It may sound a bit sappy, or feel awkward at first, but that shouldn’t get in the way of pursuing your best interest.

In  loving-kindness meditation practice focused on direction compassion towards the self, the focus of awareness is the silent repetition of specific phrases in your mind. Your loving-kindness practice could use the following phrases:

May I be safe – we wish for safety in the first line because being free from danger is a prerequisite for well-being

May I be peaceful – a wish for equanimity in the midst of the unpredictability of chronic illness

May I live fully in the present – a wish to live whole-heartedly, to live a rich, fully experienced life

May I embody love and kindness – this is a wish to be compassionate to our bodies, even if they suffer

May I live with ease – a wish for daily grace in our lives, a lessening of our burdens and struggles

Try sitting with your breath for a minute, and then repeating these phrases several times. Or you can say them silently to yourself during a difficult moment.

When we say each phrase, we are setting an intention to be a good friend to ourselves, like planting a seed. We will reap the harvest – experience compassion for ourselves – in the future. As Christopher Germer (2009) explains, loving-kindness meditation is about learning to feel goodwill towards ourselves, not to generate good feelings in the moment. Each phrase is an expression of hope for the well-being of your future self. And just like you hope for nothing but the best for your loved ones and friends in the days and years to come, the phrases of loving-kindness help you to cultivate this “inclination of heart” toward yourself (Germer, 2009).

What Does the Science Say?

Loving-kindness meditation can reduce chronic low back pain, according to a pilot trial (Carson et al., 2005).[v] Compared to standard care, individuals who participated in the eight week compassion meditation program had lower levels of pain, distress, anger and tension. A second study looked at whether compassion meditation could reduce negative mental states, in addition to decreasing pain levels (Chapin et al., 2014).[vi] Participants in the nine week loving-kindness meditation course reported a moderate reduction in their pain severity. Importantly, participants and their significant others also reported a decrease in negative emotional states like anger by the end of the program.

After a seven week loving-kindness meditation course, one study found a cumulative increase in daily positive emotions, regardless of whether the participant meditated on that day or not. The overall increase in positive emotions was associated with a significant increase in positive personal resources, like self-acceptance, mindful attention, a sense of purpose, and developing supportive relationships (Fredrickson et al., 2008).[vii]

Whether you do a formal practice, or just consciously remind yourself in challenging circumstances of the principles of self-compassion – kindness, mindfulness and common humanity – ask yourself – if a close friend of yours was in the same situation, what would you say to them? Most likely you would encourage them to go easy on themselves. You would tell them that they don’t need to be perfect, and remind them it’s okay to have bad days. Practice saying these things to yourself. Then offer yourself comfort by saying “what is the best thing I can do for myself in this moment?” This is when the list of self-care activities take on a deeper meaning – a symbol of the self-kindness you are cultivating. I hope that taking this approach helps to reduce your suffering and increase your wellbeing in a more substantive way than discussions of self-care can typically promise to do.

Find other articles on fibromyalgia at the Fibro Bloggers Directory

Go Beyond Self-Care Why We Need To Talk About Self-Compassion Instead

[i] Germer, Christopher. (2009). “Chapter 4: What’s Self Compassion?” in The Mindful Path to Self-Compassion. Guildford Publications: New York.

[ii] Neff, Kristin. (2012). “The Power of Self-Compassion.” Psychology Today. Retrieved September 1, 2019 from https://www.psychologytoday.com/ca/blog/the-power-self-compassion/201207/the-physiology-self-compassion

[iii] Brach, Tara. (2003). “Chapter Two: Awakening From the Trance” in Radical Acceptance. Random House: London.

[iv] Salzberg, Sharon. (2011). “Introduction.” Lovingkindness: The Revolutionary Art of Happiness. Shambala Publications: Boston.

[v] Carson, JW et al. (2005). “Loving-kindness meditation for chronic low back pain.” Journal of Holistic Nursing: 23(3): 287-304.

[vi] Chapin, Heather et al. (2014). “Pilot Study of a Compassion Meditation Intervention in Chronic Pain.” Journal of Compassionate Health Care 1(4).

[vii] Fredrickson, Barbara. (2008). “Open Hearts Build Lives: Positive Emotions Induced Through Lovingkindness Meditation Build Consequential Personal Resources.” Journal of Personal Social Psychology 95(5): 1045-1062.

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

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.

 

 

Book Review: ‘Memory of Health’ by Edie Summers

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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.

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Click here to visit Edie Summers’ website