How To Find Meaning Again When Chronic Pain Upends Your Life

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. I had to understand what I’d found meaningful in life Before Fibro (B.F.). And then I had to find the meaning behind the meaning- why is something sustaining, nourishing, enjoyable? Finding meaning is epitomized by the quote “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.

Travelling was my favorite activity. I came to realize that 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? An answer came surprisingly from the podcasts and audiobooks I listened to during my enforced rests. I found I enjoyed 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. Time that feels spent on rewarding things makes meaning.

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. I never appreciated that B.F., assuming everyday life was boring and humdrum. But in learning to be mindful and still, I’ve found how much I missed before, 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. Volunteering, 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 passenger 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.

Can Essential Oils Actually Help Relieve Fibromyalgia Symptoms?

You may be surprised to learn that research shows some essential oils have medicinal effects that may help improve fibromyalgia symptoms.  There are three main symptoms that essential oils can help relieve: anxiety, insomnia/fatigue and pain.

Essential Oils for Stress and Anxiety

Living with chronic pain and illness can be emotionally overwhelming.  There are days when I feel anxious over an upcoming appointment, frustrated by the limitations caused by pain and fatigue, worried about the uncertainty of flare-up…and the list goes on and on.  Managing stress by making time for relaxation can help you cope with anxiety.   There are a number of essential oils that help promote relaxation.  For example, according to the University of Maryland Medical Center, “Scientific evidence suggests that aromatherapy with lavender may slow the activity of the nervous system, improve sleep quality, promote relaxation, and lift mood in people suffering from sleep disorders”.[i]  Many of the same essential oils used for relaxation can also be used to promote sleep.

One of the best ways to use essential oils for anxiety is through aromatherapy (diffusing the oil through the air and inhaling its sent).  Essential oils are believed to work when compounds that are inhaled enter the blood stream and are carried to the brain or other organs. You can use a diffuser, which mists droplets of oil through the air, or an aromatherapy oil burner, which uses the heat from a candle to vaporize the oil.  For a very inexpensive alternative, you can put a few drops in the melted wax of a burning candle!

  • Other oils to consider for anxiety relief include: rose otto, frankincense, clary sage, sweet orange, bergamot, grapefruit, ylang ylang, sandalwood, neroli, sweet marjoram, petitgrain, mandarin, lavender, rose geranium, tangerine, jasmine.[ii]

Essential Oils for Fatigue and Brain Fog

Aromatherapy can also be used to promote energy and mental clarity. Fatigue and brain fog are two of the most challenging symptoms experienced by people living with fibromyalgia.  They are also two of the most difficult to treat.  I was excited to learn that rosemary oil can help with brain-fog symptoms. According to a recent study, rosemary oil diffused throughout a room helped participants perform significantly better on a memory test than participants in a control room.[iii]  This appealed to me because brain fog affects my word recall and short term memory.  The refreshing smell of lemon oil and other citrus oils is thought to be energizing.  Peppermint and wintergreen oil are also used to improve vitality.

Essential Oils for Pain

Finally, essential oils can help alleviate the muscle pain that is a constant companion for many people living with fibromyalgia. Essential oils relieve pain by improving circulation, reducing inflammation and calming irritated nerves.[iv] The most efficient way to use essential oils for pain relief is through massage.  A few drops of essential oil should be diluted in a carrier oil of cold-pressed nut, seed or vegetable oil – approximately 10-12 drops of essential oil in 1 ounce of carrier oil.

  • Pain relieving herbs include: spike lavender, sweet marjoram, lavender, petitgrain, Roman and German chamomile, clary sage, lemongrass, helichrysum, peppermint, ginger and black pepper. Spike lavender with peppermint and helichrysum creates an anti-inflammatory synergy.

Blending essential oils is a creative art. In general, most floral oils blend well together, as do most woody oils.  Massage Today recommends three blends for fibromyalgia[v]:

  •  4 drops of lavender, 1 drop of frankincense, 4 drops of sweet orange, and 1 drop of neroli
  • 4 drops of sweet marjoram, 1 drop of Roman chamomile, 4 drops of mandarin, and 1 drop of rose
  • 4 drops of lavender, 4 drops of rose geranium, 2 drops of rosemary, and 1 drop of lemongrass

[i] http://umm.edu/health/medical/altmed/herb/lavender

[ii] http://www.massagetoday.com/mpacms/mt/article.php?id=13377

[iii] http://www.bbc.co.uk/news/magazine-33519453

[iv] http://www.massagetoday.com/mpacms/mt/article.php?id=14048

[v] http://www.massagetoday.com/mpacms/mt/article.php?id=13377

Collective Chronic Wisdom: My 5 Favorite Spring Posts by Chronic Illness Bloggers on Finding Hope During Difficult Days

 

Collective Chronic Wisdon

The world seems upside down at the moment, and the headlines are truly overwhelming, full of the pain and suffering experienced by so many as a result of the pandemic and systemic racism in the criminal justice system. Yet daily life goes on, and we still need to care for our bodies and our minds, while managing chronic illness in the time of covid-19.  I feel exhausted and stressed, and have been recently neglecting self-care and it’s deeper companion, self-compassion. So I decided to turn to the collective wisdom of my fellow chronic illness bloggers. I’m sharing a few of my favourite recent posts on the realities of daily life with chronic conditions during times of uncertainty, and helpful perspectives on how to find beauty and hope during difficult days.

Not Just Tired

More Than Just a Hashtag

For the past year, I’ve really enjoyed participating in the #joyinspring photography hashtag started by @Not_Just_Tired on twitter. I really enjoy sharing photos of gorgeous spring blooms, and learning what kind they are, by posting using the hashtag. Looking at the lovely images posted by others is always a pleasure, especially when so much of social media is full of difficult and painful news. It’s encouraged me to be mindful on my walks, and to really savour the beauty around me – basically, to stop and smell the roses (#sorrynotsorry). Here, she shares the impact of creating this hashtag, as well as her daily gratitude #mydailythankyou posts.

Blatherings with Terry

Finding Calm During Times of Uneasiness

We may not be in control of what happens outside of our quarantined zones, we can control our thoughts and how we cope. We can choose calm over chaos and fear…These seven-ish behaviors, practices, factors in my life, absolutely help keep me together. Well, quasi together. Ok, as “together” as I’m probably going to be! (lol + acceptance of my here and now)

My Medical Musings

Living A “Simply Special” Life, Despite Chronic Illness, Despite COVID-19

Instead of fighting to hold onto my old life, I’m using my limited energy, my talents and anything I can muster, to carve a new manageable lifestyle. It’s unique to my needs but it’s perfectly formed.

My failing body can dictate a lot in terms of limiting physical activities but it doesn’t have to dictate my happiness.

Brain Lesion and Me

A Not So Very Normal Life:

When living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Life with chronic illness becomes the new normal. Often, it becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives. Nor can we remember what it was not to endure such unyielding and debilitating symptoms.

The Winding Willows

The Key to Happiness Can Be Found in the Dirt

Have you ever planted a seed and watched in germinate then grow and bloom into a beautiful plant? Because there is so much hope for the future when you’re watching the transformative process of a plant growing.

I’ve been growing veggie seedlings in the past few weeks, and seeing the bright green sprouts grow after nurturing them with the best sunlight window positioning, carefully chosen seed starting potting soil, a watering regimen, and too much research has been incredibly rewarding. Especially since the entire world seems upside down.

 

Empowering People Living With Chronic Pain Through Pain-Neuroscience Education

I’m excited to share a guest post by Ann-Marie D’Arcy-Sharpe, a freelance writer and blogger who lives with chronic pain. She writes for Pathways Pain Relief, a chronic pain relief app and blog, which is created by pain patients and backed by the latest pain science. I definitely learned a new thing or two by reading her article, so I hope you do too! 

Empowering People Living With Chronic Pain Through Pain-Neuroscience Education

Chronic pain affects a vast proportion of the population. A 2019 study from the Journal of Pain states that, “Chronic musculoskeletal pain (CMP) affects about 20% of the population in western countries, causing suffering, disability, and a significant loss of quality of life”. Not only does chronic pain affect many people’s lives, it also takes up a great deal of health resources and accounts for many people being out of work. 

For a long time, those with chronic pain have received little in the way of effective treatment options. Thankfully, the face of modern day pain treatment is changing. Pain-neuroscience education (PNE) has become a cornerstone of chronic pain treatment. Understanding the science of chronic pain can be a powerful tool to empower people in pain to retrain their brain away from pain. Having people living with chronic pain understand that the brain produces all pain, and that it’s neuroplastic, helps to instil the confidence that pain is changeable.

PNE is often part of chronic pain treatments such as physiotherapy, cognitive behavioural therapy (CBT)  and other psychological treatments. This form of education teaches those in pain about the science of acute and chronic pain, so they can have a clearer understanding of pain moving forward. Often metaphors and stories are used to help people in chronic pain relate the science to their own lives and provide a deeper understanding. 

This study explains that PNE, “incorporates the multidimensionality of a pain experience and helps patients reconceptualise pain through understanding the multiple neurophysiological, neurobiological, sociological and physical components that may be involved in their individual pain experience.”

At Pathways (our pain therapy app), we found the best results by starting our program with PNE. Those in pain often tell us that understanding the science behind their pain was key to their recovery. Understanding that pain doesn’t equal damage, and that our brain and body learns pain, helped them to change their perspective on pain, as well as strategies to deal with it.

A 2019 study on PNE states that, “The use of pain neuroscience education (PNE) has been shown to be effective in reducing pain, improving function and lowering fear and catastrophization.”

The way those living with chronic perceive pain has a significant impact on pain levels. This study clearly states that, “Pain is complex and it is well established that various cognitions and beliefs impact a patient’s overall pain experience”. 

Giving people living with pain hope and the ability to see why and how treatments work can lead to more positive, adaptive perceptions of pain and the pain experience. This in turn reduces symptoms and encourages more adaptive coping strategies. People are far more likely to really engage in their treatment when they have this basis of understanding to work from.

Often people in pain experience deconditioning from lack of activity. This can contribute to pain levels and make daily activities harder. With more positive perceptions of their pain and the understanding that engaging in activity is not going to harm them, people can start to recondition their bodies. As muscles become stronger and the body becomes fitter, pain is reduced. 

Once fear is tackled with knowledge, the stress that accompanies chronic pain can be reduced. This in turn helps to break the stress and pain cycle. Since stress worsens chronic pain, this is actively helping to reduce symptoms and enabling patients to feel more in control of their lives. 

Through PNE people in pain are made aware of the difference between maladaptive and adaptive coping strategies and learn that their behaviours directly influence their symptoms. They can come to understand the need to implement more adaptive behaviours and can feel more motivated to do so. Given that so many people with chronic pain feel powerless, understanding that they have more control over their pain levels than they may have thought can be incredibly liberating.

Giving people a sense of hope that their symptoms can improve is a vital and significant part of pain treatment. It’s so important that PNE is part of pain treatment moving forward to set people living with chronic pain up for success! When there are effective treatments available, nobody should be left in chronic pain without hope. 

References

Galán-Martín, M.A., Montero-Cuadrado, F., Lluch-Girbes, E. et al. Pain neuroscience education and physical exercise for patients with chronic spinal pain in primary healthcare: a randomised trial protocol. BMC Musculoskelet Disord 20, 505 (2019). https://doi.org/10.1186/s12891-019-2889-1

 

Louw, A., Puentedura, E. J., Diener, I., Zimney, K. J., & Cox, T. (2019). Pain neuroscience education: Which pain neuroscience education metaphor worked best?. The South African journal of physiotherapy, 75(1), 1329. https://doi.org/10.4102/sajp.v75i1.1329

 

Adriaan Louw & Emilio J Puentedura, (2014), Therapeutic Neuroscience Education, Pain, Physiotherapy and the Pain Neuromatrix. International Journal of Health Sciences, September 2014, Vol. 2, No. 3, pp. 33-45. DOI: 10.15640/ijhs.v2n3a4

Bio: I’m Ann-Marie D’Arcy-Sharpe. I am 33 years old and work as a freelance writer and blogger. I live with bipolar disorder, fibromyalgia and arthritis.

I write for Pathways Pain Relief, a chronic pain relief app and blog. The app is created by pain patients and backed by the latest pain science. We use mind body therapies to help pain patients achieve natural, long lasting pain relief.

You can download our app here: https://www.pathways.health/

 

Fear and Hope: The Hidden Realities of Being Chronically Ill In the Time of Coronavirus

 

Right now is especially hard on those of us who are sick already. The safety nets that each person has – medical care, social support, financial security, and access to basic necessities, among others – are being sorely tested at this time. But the individual safety nets of people with chronic illness are already weakened, and when you add a pandemic, they fray even more. We have to hope and pray that they hold.

Spring. It’s a beginning. More than that, it’s a beginning that starts in the cold and the dark. In the middle of winter, it’s hard to believe spring will come. But it does. I’ve taken photos of spring flowers to remind myself of that fact.  I hold on to the fact that the deep resilience and strength that everyone with a chronic illness has developed will help to get us through this time.

Physically, the risk of getting coronavirus has higher stakes for the chronically ill. Even if you are not immunocompromised, the fear of getting a terrible illness flare up, or setback is real. A cold virus once caused me debilitating fatigue for months, so of course I worry what coronavirus could do. My husband worries even more on my behalf than I do!

The financial crisis ahead will disproportionately hurt the chronically ill, who are far more likely to be underemployed or unemployed than the non-ill. I feel lucky my husband’s salary can support both of us, since I can’t work, although things in a single income family are often tight. But for years, many of those with chronic illness have lived in poverty on inadequate government disability assistance. Suddenly, the government has found the resources to give individuals who have just lost been laid off because of covid-19 as much as double the amount allocated for disability benefits. 

To be clear, I don’t begrudge anyone who has recently gotten emergency government financial assistance due to coronavirus. That’s the right thing for our governments to do, and in fact, they should give more than they are. But when the chronically ill and disabled get half as much on a regular basis – an amount that is below the poverty line- it feels like our governments are saying people like us are worth half as much. Meanwhile, many are still trying to get by on the inadequate amount given as disability assistance during the lockdown without any additional supplementation. 

We’re still living in an ableist world  in the time of coronavirus. There’s no way that I can stand in line for half an hour or longer to buy groceries or pick up prescription refills on my bad knee. But God help you if you want schedule grocery delivery. There are no times available, for love or money. My husband is able to try and shop around his work schedule, and I’m lucky to have that help, when others are on their own. In some cases, neighbours and strangers have stepped up to help out the chronically ill who iive alone, and that increases my faith in humanity a little bit more.

Like so many, all of my appointments and procedures have been cancelled. From monthly physiotherapy that helps to bring down regular flare ups, to a long scheduled nerve ablation that is supposed to reduce my neuropathic back pain, all of these pain management tools are now on hold and I’m trying to make do the best I can.

I won’t lie, it has been harder to sleep, which triggers more flares of pain. I feel more irritable, especially if I spend too much time on the news or social media. Regulating my news diet helps to bring some of the stress down. It’s just not feasible to try to worry about every corner of the world at once!

At the moment, it seems like everyone and their grandmother are having Zoom chats with all the people they’ve ever known. If I read one more post about how wonderful all this reconnecting is I think I will get an eye twitch.

Chronic illness is isolating for most of us. When you cannot regularly meet up with friends or join community events or chit chat with neighbours at the dog park, then your social support system shrinks. I’m fortunate to have a couple of good, old friends who have stuck with me. And since I’m old school, I skype with them on occasion (sorry, zoom!).

But I’ve lost a lot of friends and family members along the way. It’s hard to think about the people who were more fair weather friends at a time like this when we could have been there for each other.

That being said, I’ve learned to embrace solitude more over the years. This is the time for distraction therapy: writing, knitting, painting or whatever creative pursuits you have wanted to try. Or maybe just appreciate the creativity of authors, actors and musicians by reading, watching shows and listening to music that you’ve wanted to check out but haven’t had time until now. Here’s a list of my favourite free distractions to help you make the most of this time, despite the pain and fatigue.

Frustratingly, I had just started going to a local library book club before the pandemic hit and had found a new local fibro group I was hoping to go to. Looking forward to book club got me through some difficult days- thinking, “well, at least I’m living a little”. Same with going out to a cafe once in awhile with an audiobook, ted talk or an online course lecture. Those small things helped me to regulate my feelings about chronic pain- counterweights of connection and enjoyment to the isolation and limitations of illness.

Now though, that’s not possible, or re-creatable. When bad days hit now, it’s hard to know what to turn to other than a lot of distraction. Fortunately, there are some excellent online support groups, like Medical Musings for Friends on Facebook, or the general chatter of #chroniclife #spoonie #chronicpain #fibromyalgia on Twitter.

I hold on to the hope that this season will pass and a new spring will bloom, when we will be able to access the treatments and supports we need again, and build the relationships we want. Now more than ever, I value the strength I’ve gained, my current relationships (IRL and virtual), and mindfulness of simple enjoyments, like spring flowers, that I can savour. I hope I can carry the intention to focus on these things into the next season, post-coronavirus. We have strength forged by surviving our illnesses, and we can trust in our own tenacity and resilience during this time. Self-compassion and kindness can also go a long way right now. We need to give ourselves a break at present, since we’re all just muddling along trying to figure this thing out the best we can, one day  at a time.

 

Distract Your Pain Away: How to Make the Most of Your Time at Home with Chronic Illness

Distract Your Pain Away:

Living with daily pain can feel very limiting. The list of activities I can no longer do without increasing my pain levels or triggering flare-ups, which includes working, typing, holding a book, vacuuming, running, painting, and everything in between, is longer than the list of what I can do.  It can feel like a cage that that I’m confined to.

In this situation, I found it liberating to discover new activities that I can do even while I am still in pain. In fact, distraction is a valid pain management tool. A recent study found that “mental distractions actually inhibit the response to incoming pain signals at the earliest stage of central pain processing” (Science Daily). In the study, participants either completed an easy or difficult memory task while painful heat was applied to their arms. Participants who completed the most difficult memory test, which was more mentally distracting, perceived less pain– a functional MRI scan of their spinal cord actually showed less nerve activity compared to the group doing the easy memory task. The researchers concluded that these results show “just how deeply mental processes can go in altering the experience of pain” (Science Daily).

This study shows the importance of finding low-key activities that you can enjoy even while you are in pain. Over the past few years, I have discovered a number of different activities that have helped me to expand my horizons, and manage my pain using distraction. I hope that you find some of these (free!) suggestions useful for making the most of your time, even if you are in pain.

Tune Out

Music is a powerful tool for managing pain and depression. Researchers recently found that listening to music for an hour a day reduced chronic pain by up to 21% and depression by 25%! (Science Daily, Listening to Music). Importantly, participants in the study reported feeling more in control of their condition and less disabled by it.

Personally, when I am feeling more alert I listen to my favourite albums and when I’m feeling fatigued, I relax to music specifically designed to help people fall asleep (I simply search for ‘deep sleep music’ in YouTube). If you want to discover new artists, or enjoy music without the cost of buying new albums, you might want to try free music streaming apps and websites, like the free Spotify plan, Google Play Radio or iTunes Radio. These sites let you legally listen to music without a paid subscription. I also like Jango, which has custom radio stations you can stream based on artists that you like (and promises only one audio ad per day).

Learn Something New

Can we be honest about something for a minute? I’m a complete nerd. But I’ve also discovered that most people have at least one topic that makes them geek out! Learning is good for brain health and it can also boost feelings of well-being and self-esteem.

There are many ways to learn new things from the comfort of your home. One of the most rewarding options that I have found is to watch free online video courses from sites like Open Learn, edX, Coursera. Whether you are interested in art or archaeology, math or music, there are thousands of options to explore. Sites like Open Culture provide listings that link to hundreds of courses so that you can choose what interests you most.

I recently discovered the world of podcasts, which has quickly become a staple activity that I turn to on high-pain days. The great part about audio is that you can lie down and rest in the most comfortable position you can find while you learn. The variety of podcasts out there is almost overwhelming, and there really is something for everyone, whether you are a news junkie, sports fanatic, gossip addict, policy wonk or anything else!

Transport Yourself to Another World

Who doesn’t love a good story? Nobody, that’s who! Books, TV shows and movies are all obvious forms of distraction for people living with chronic pain. While you probably already have thought of these options, I want to share a few tips from my own experience that may give you some new ideas to try.

Actually reading a book may be a challenge, depending on your chronic pain condition. Whether physically holding the book is painful, or reading the words on the page causes fatigue or headache, a paperback may not always be practical. Enter the amazing world of audiobooks! A great performance by a talented narrator can really bring a book to life. Lying down and getting carried away in a new story is one of the best low-key activities I have found.

Your local library may have an online audiobook library where you can temporarily download free audiobooks from a digital content service, without having to check them out from a local branch. LibriVoxi s a free, legal, online audiobook streaming service with hundreds of classic books (no longer copyrighted), read by volunteers. Audible and similar companies sell audiobooks from their large online libraries, which you can download or play using their app (but these subscriptions are pricey).

Binge-watching is a tried-and-true method for getting through a bad pain episode. Many people with chronic pain literally ‘Netflix and chill’! Unless you’ve been living under a rock, you already know about Netflix and all the other streaming services. However, like audiobooks, these services can get expensive. Did you know that there are a number of free (legal) streaming services like Popcornflix that offer public domain films (classics), independent and foreign films, and even recent features, as well as a number of documentaries?  Sites like Pluto TV also offer an array of live tv options. My public library has a partnership with Kanopy, which offers 8 free videos per month of everything from Great Courses lectures to Oscar nominated films. Your library may offer a similar service!

Resources

Science Daily (Pain relief through distraction: It’s not all in your head)

Science Daily (Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter)

 

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

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

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.

Surviving Summer: Tips You Haven’t Thought Of Yet To Help You Manage Your Illness In The Heat

 

Surviving Summer

Summer time is here. After a chilly spring, it’s finally sunny and H-O-T.  We usually associate this season with fun and relaxation. But for many people with chronic pain, the heat and humidity of summer weather only means an increase in their pain levels. If I step outside on a scorching summer day, with the sun beating down, it only takes a few minutes before I feel fatigued, and lightheaded.

What Causes Increased Pain in the Summer?

Chronic illnesses like fibromyalgia (FMS) are affected by summer weather. People with nervous system sensitization or disruption have trouble regulating their body temperature, especially when exposed to weather extremes (hot or cold). Specifically, exposure to hot temperatures can lead to muscle pain, headaches, and worsened fatigue. Excessive sweating can lead to dehydration and loss of electrolytes, which also contributes to muscle pain, headache, fatigue and other symptoms.

Joint pain can be worsened by summer weather, like high humidity or low pressure systems, which cause summer storms. Joint pain is a symptom of several types of arthritis, which commonly co-exist with fibromyalgia.

Did you know that there are sensory nerve receptors in your joints that detect changes in barometric pressure? They are called ‘baroreceptors’. High humidity or low pressure conditions can trigger baroreceptors, causing uncomfortable pressure in your joints. You may feel this as tightness or stiffness in your joints. Dehydration can also reduce the fluid in your joints. Since joint fluid helps to lubricate movement, less fluid can lead to more pain.

Insomnia is another significant cause of increased pain in the summer (often called “painsomnia” in the chronic pain community). It can be difficult to sleep during hot summer nights. Many studies show that poor quality sleep causes increased pain levels. Keeping cool at night is a top priority for people with chronic pain.

Finally, people tend to be more active during the warmer months of the year. Summer invites activities like walking outdoors, picnics, and swimming. Special events often take place in the summer, like weddings, national holidays, or vacations. Exerting yourself more than usual during this season can increase your pain levels.

Strategies for Pain Management in Warm Weather

Kick Dehydration to the Curb: You already know that, in the summer, it’s even more crucial to drink your eight glasses of water a day. You lose more water from your body through perspiration in warm weather. It’s important to replace that water so you don’t become dehydrated. Dehydration can lead to headaches, muscle cramps, fatigue and heat exhaustion – which can all exacerbate fibromyalgia symptoms.

But Don’t Forget Electrolytes: an often forgotten aspect of dehydration is replacing electrolytes lost by sweating. Electrolytes are substances that carry an electric charge and are responsible for nerve and muscle function, and regulating blood pressure, blood pH and other vital bodily functions. Electrolytes include sodium, potassium, calcium and magnesium. You might think of sports drinks like Gatorade as the best source of electrolyte replacement, but these drinks cause their own problems. The added sugar will only cause energy crashes after the initial sugar high, as well as long term harm to your liver, pancreas, and teeth.

Did you know fruit is an excellent natural source of electrolytes? Try making your water more hydrating (and tasty) by infusing it with fruit. Fruit-infused water is made by putting fruit into a pitcher of water and letting it soak for several hours or overnight. Think strawberry, lemon and basil water or watermelon and mint water, among other recipes. Try to use organic or well-washed fruit to avoid any pesticide residue. Put a small pinch of sea salt for additional electrolytes! Coconut water is another excellent source of natural electrolytes and can help replace lost potassium and sodium. Use it in your fruit-infusions or drink it on its own. You might be thinking “so why don’t I just drink juice?” Most juices contain the entire amount of daily sugar a woman is recommended to have in one glass! Instead of raising insulin and blood sugar levels, and then crashing later, fruit infused water contains far less sugar.

Carry a water bottle with you so that you can stay hydrated throughout the day. If you don’t like plain water, or haven’t infused it with fruit, try adding  lemon or cucumber to plain iced water, or making iced tea (think herbal or de-caffeinated if making a large pitcher).  Avoid more than 1 to 2 cups of coffee, because caffeine is diuretic, which can worsen dehydration. Ditto with alcohol.  If you have trouble remembering to drink water, try to tie this new habit to something you routinely do, such as having a glass of water before each meal, as well as when you wake up and go to bed.

Stay Cool on the Go: try a cooling fitness towel when you are out and about. When wet, these towels are designed to feel cooler than the air temperature, and  provide relief from the heat (but don’t drip). They can also wick away moisture from perspiration. Run the towel under cool water, put it around your neck, and feel cool for 2-3 hours.

One of my favorite gadgets is a mini USB fan that can plug into your smart phone! This helpful little fan plugs into your phone (where the charger goes) or power bank and provides instant relief for your face and neck in the heat. They typically weigh less than an ounce! This is such a life saver in a hot waiting room, vehicle or sidewalk. You can also buy chargeable electric handheld fans to take on the go.

Stay Cool at Home: it’s important to try to maintain a constant, cool temperature during a heat wave. You already know that air conditioning and fans can help to maintain a cooler indoor temperature.  Put a damp cloth in the freezer for several hours and then wipe your face, neck arms and legs with it to cool off.  Applying an ice pack to the back of your neck or the inside of your wrists can also help. If humidity worsens your pain, consider running a dehumidifier in your home. The temperature can be less of a factor causing your pain than dampness in the air, especially if your have joint pain. Blackout blinds are vital for keeping your bedroom cool for resting on hot summer days.

Sun Protection: this is key to avoid flare-ups that could be caused by sunburn or heat exhaustion. Try to stay out of direct sunlight, use sunscreen, and wear a hat; basically everything your mother told you to do in the summer. Sun protection clothing that blocks harmful UV rays can really help to lower the risk of sun burn and heat stroke. UV protection sunglasses can also help reduce the impact of brightness on your eyes, which is a migraine trigger for some.

Last summer I finally admitted that I needed more protection because I felt instant fatigue from the sun beating down on me every time I stepped outside. So I went online and found a UV protection umbrella, with a pretty floral pattern, that I use as a modern day parasol! It may look a bit eccentric, but I feel pretty pleased with my choice when I’m walking beside my husband (who is too manly to use a parasol),  while he squints and perspires from the heat!

Replace Heat Therapy with Cold Therapy: if you routinely use a heating pad for your pain, try replacing it with an ice pack, especially during a heat wave!

Pacing is particularly key during the increased activity levels we often associate with summer months. With the additional physical stress from heat,  it’s especially important to stick to your boundaries, no matter what expectations friends or family members may place on you.

Consider an Activity Tracker: I find a wearable actually tracker quite helpful for making sure I don’t overexert myself. It can be difficult to compare different activities, like a neighbourhood walk with an afternoon by the beach. Knowing how many steps I’ve taken helps me to pace myself during the day.

 Log Your Symptoms: if you are unsure what effect the weather has on your pain levels, try keeping a daily log of the temperature and weather conditions, along with your pain levels. This might help you to identify pain triggers. You can also note any strategies you have tried to reduce your pain levels, and what impact they may have had. Overtime this will help you to identify more effective solutions for coping with pain in the summer months.

Resources

Everyday Health (7 Smart Summertime Pain Solutions)

Everyday Health (Managing Fibromyalgia in the Heat and Humidity)

Metropolitan Pain Consultants (Summer Joint Pain: The Impact of Hot Weather)

 

 

The Pet Prescription: How a Stray Cat Named Sara Helped Me Learn To Be Braver & To Live More Fully Each Day, Despite Chronic Illness

I’m glad I didn’t listen to that voice of doubt in the back of my mind when it came to adopting a stray tabby named Sara. In a strange way, taking care of her has been an act of self-care for myself. She has become a part of our family and, besides all of the health benefits of adopting her, I think it’s the healing power of companionship and optimism that pets like Sara offer us most.

THE PET PRESCRIPTION: HOW A STRAY CAT NAMED SARA HELPED ME LEARN TO BE BRAVER & TO LIVE MORE FULLY EACH DAY DESPITE CHRONIC ILLNESS

 

sarah

Hello, I’m Sara, and I’m an affectionate, but shy, 3-year-old grey tabby. I like pillow forts, spying out the window and perching on your shoulder when you sleep.

Just over a year ago, we adopted a cat named Sara who is an affectionate, but shy, two-year-old grey tabby. Adopting a pet is good for your wellbeing. Pets enrich our lives and the benefits can be measured in health improvements: “According to the Centers for Disease Control and Prevention, pets… can help lower blood pressure, cholesterol levels, triglyceride levels, and feelings of loneliness. They can also increase opportunities for getting exercise and engaging in outdoor activities, as well as provide more opportunities for socializing with others” (Confronting Chronic Pain).

 

In particular, contact with animals has been found to benefit people living with chronic pain. For example, visits with therapy dogs at a pain management clinic was found to reduce pain and emotional distress in patients, as well as improve the emotional well-being of friends and family members who were there with them (Confronting Chronic Pain). Pets help reduce pain and stress, as well as give their humans companionship, and a sense of purpose.

One of the things I’ve learned from living with cats and dogs is that they wake up each morning optimistic about what the day ahead will bring. We see that in their excitement to play, their contentment snoozing in the sun and in their demonstrations of affection. They live fully hour to hour. When we share in those moments with them, some of that optimism inevitably wears off on us too. We love our pets and take care of them, as they take care of us.

IMG_20170409_102413
Lily was our 18 year old tuxedo cat. She loved playing goalie with tossed toys, petting sessions and sleeping on clean laundry.

Before we adopted Sara, we had a lovely 18-year-old black and white ‘tuxedo’ cat named Lily who lived to eighteen. She was originally my husband’s cat, and initially treated me like an interloper. But since fibromyalgia kept me at home, I became her constant daytime companion, the giver of treats and nearest available warm lap. We became friends and, eventually, family . She was always there for me on the hardest days when I felt unwell, and it meant a lot to me that I was able to be there for her in her golden years. The companionship and affection of a pet is an invaluable comfort during a fibromyalgia flare.

 

Our newest addition to the family, Sara, was abused in her first home and then went to a high-kill shelter. She was fostered by an animal rescue organization until we adopter her. The agency wanted to place her in a peaceful and quiet environment. That describes life at home with fibromyalgia to a tee. Living with a chronic illness necessitates a slow pace of life. I sleep late, wake up slowly with breakfast, coffee and the news; stretch and meditate; spend the afternoon writing and on the computer, with nap breaks in between; then I go for a walk when my husband comes from work; and we spend the evening together catching up on our favourite shows. Sara has lots of company, plenty of time for cuddles, and no one interrupts her cat naps. I gain companionship, the endless amusement that cats can provide (like watching non-stop cat videos) and the enjoyment of taking care of something other than my health.

As a person with chronic illness, living in a society obsessed with productivity, I often feel like a round peg in a square hole. My goals include learning to savour the small moments, staying present more of the time, and learning to take more time off and push myself less. The goals of my friends include career success, homeownership and completing their first triathlon next year. For them life is busy busy busy and for me it’s the opposite. There’s something wonderful about the fact that Sara fits into my lifestyle like a round peg in a round hole. My slow pace of life at home has been the exact right safe and healing environment she needed. Watching her learn to trust us and become confident enough to cuddle, sleep on our clean laundry, get into trouble and generally boss us around is such a bright spot in each day.

When you live with a health condition that’s lifelong, it’s easy to become habitually cautious about anything new – after losing many of my abilities, I have a lot of self-doubt about what I’m capable of. When we saw Sara’s picture and read her story online, I was torn between hoping we could provide her with the right home and the creeping doubt of trying anything new that people who live with chronic illness develop over time. I worried about the differences between looking after a geriatric cat you know well and an energetic two-year-old cat you’ve just met. Writing the animal rescue coordinator to start the adoption process was a spontaneous act of bravery and optimism.

Of course, there are things that I reasonably should not attempt to do because they will leave me feeling awful, such as working full time or attempting a triathlon. But that there are other things that I reasonably could attempt to do, but worry or a lack of confidence sometimes makes me hesitate. I’m glad I didn’t listen to that voice of doubt when it came to adopting Sara. In a strange way, taking care of her has been an act of self-care for myself. She has become a part of our family and, besides all of the health benefits of adopting her, I think it’s the healing power of companionship and optimism that pets like Sara offer us most.

Confronting Chronic Pain:

http://www.confrontingchronicpain.com/can-a-pet-help-with-your-chronic-pain/

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