How To Communicate Better About Your Chronic Pain & Set Healthy Boundaries

I hope the tips here can help you to feel more comfortable and confident communicating about your pain, and setting boundaries with others, so that you can focus on taking care of your health. Explaining pain in words is like trying to translate a word from one language into another, except that there is no equivalent word in the other language with the same meaning.

Chronic pain presents significant communication challenges for our relationships, such as needing to constantly cancel plans or having to ask for help. After all, relationships can be tricky enough without the additional complexities of living with chronic pain!

Communicating With Your Doctor About Your Pain

Doctors often attempt to simplify the problem of describing pain by asking patients to rate their pain on a number scale out of ten. Personally, I find this frustrating because one number cannot capture the whole picture of what my pain feels like. When I researched this topic I found a great tool, called the LOCATES scale (Health), for overcoming this challenge. It provides a framework for explaining all the dimensions of chronic pain:

L: Location of the pain and whether it travels to other body parts.
O: Other associated symptoms such as nausea, numbness, or weakness.
C: Character of the pain, whether it’s throbbing, sharp, dull, or burning.
A: Aggravating and alleviating factors. What makes the pain better or worse?
T: Timing of the pain, how long it lasts, is it constant or intermittent?
E: Environment where the pain occurs, for example, while working or at home.
S: Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.

Try writing out your answers to each corresponding letter before your next appointment and share them with your doctor. I hope it helps you feel like you’ve communicated all of the dimensions of your pain!

Communicating With Your Loved Ones About Your Pain

When it comes to friends and family members, pain is a thorny subject. Chronic pain causes stress and heightened emotions. It’s completely natural to snap or get upset during a difficult conversation when you’re in pain. Sometimes just letting your loved ones know how you’re doing that day can help them adapt accordingly. You can try to use the LOCATES scale with your family members to help them understand more fully what you are experiencing.

The Chronic Pain Couple recommends “logging your daily pain levels in a pain app, [then] screenshot and text the daily summary to your partner before they get home from work…This will help your partner understand what your physical capacity is so that they can adjust their expectations of you accordingly.”

Sometimes family members or friends may doubt that your chronic pain is real, criticize how you handle your pain or even accuse you of being lazy if you have to cancel plans because of pain. Even the most supportive people can sometimes be insensitive or say the wrong thing.

 I’ve found that knowing how I want to handle different communication challenges associated with chronic pain ahead of time is helpful to improving my communication with the important people my life.

De-escalate Tension to Express Yourself  Clearly

Feeling like you aren’t being heard or that you are being judged when you communicate about your pain is frustrating. On top of that, it’s difficult to express yourself clearly when you are hurting and feel emotionally reactive or defensive.

 One way to de-escalate tension and have a more productive conversation is to take a pause before responding to an upsetting comment. The first step is to notice that you feel angry, hurt or upset. If identifying the feeling is tricky, look for physical cues of emotional reactivity – clenched jaw, stomach knot, tight chest, constricted throat or increased heart rate. Then intentionally take a pause until you feel ready to respond from a place of self-awareness. This could be as short as counting to 10 or as long as waiting until your pain flare has passed to continue the conversation. Sometimes I find going into another room and taking a short mindful meditation break (focusing on my breath for three minutes) really helpful.

Dealing With Unwanted Advice

In my experience there are two types of advice: well-meaning suggestions from someone who genuinely wants to help and judgmental statements framed as “advice.” In responding to the former, I like the advice from Live Plan Be: “The key is to find ways to respond to others that don’t drain you or get you riled up… You can give them a positive response without agreeing or committing to follow their advice.” An example might be “Sure, I’ll keep that in mind.”

Dealing with judgment in the form of advice (“maybe if you got off the couch and exercised more then you would feel better”) is another story altogether. Rather than feeling the need to explain yourself, and going around in circles, it’s best just to be direct and say politely that you aren’t interested in their advice: “When it comes to my health, it’s important to me that I do what I think is right. When you tell me what you think I should do, it’s not helpful to me. It would mean a lot if you would not do that anymore.”

Establishing Boundaries And Sticking To Them

Setting healthy boundaries is good for everyone, but it’s particularly important for people with chronic pain. The reality is that we face physical limitations, and pushing them has severe consequences in the form of pain and fatigue. It can be hard for the people around us to accept these limitations and to not take them personally. These limitations can put a strain on our partners and families, whose lives are also changed by our chronic conditions. The urge to avoid disappointing people is hard to resist and learning to put your health needs first is a difficult transition for many of us. But speaking up is important for your health and well-being! There are many positive personal benefits that result from learning to advocate for yourself, like greater self-confidence and agency, feeling more centered, and feeling that you are living with greater authenticity.

If possible, try to make a request to set a new boundary in a constructive way. Ask in a calm but firm manner, at a time when the other person is more likely to be receptive. When you clarify a new position in a relationship, speak in terms of “I” rather than “you” to minimize defensiveness on the part of the other person. It’s important you also stick to the boundary you have set, otherwise it’s unlikely the other person will too. Live Plan Be suggests a helpful tool for setting boundaries called the ‘Feedback Formula’:

When you … call me at 11pm at night (describe the person’s behaviour),

I feel… upset and frustrated (describe the emotion you feel), 

and the result is…my sleep is interrupted, and it that increases my pain (describe the effect of you experiencing that emotion). 

Would you be… willing to call me before 8pm instead?” (make your request).

In this example, after setting the boundary, don’t answer the phone after 11 pm, in order to reinforce the line you have drawn.

Ultimately, there’s no way to express yourself perfectly in every situation, and you aren’t to blame if other people can’t or won’t listen. If someone protests the boundaries you have set, try to remember that it’s their problem, not yours. It’s just further proof that the boundary line is needed. Focus on nurturing your healthy relationships, and put toxic relationships on the backburner. “Remember, you don’t need to apologize for setting good boundaries that help you stay healthy, manage your symptoms, and feel your best while living with chronic pain” (My Chronic Pain Team).

Hopefully these tips can help you communicate more clearly about your pain, and establish boundaries with others, so that you can prioritize your self-care.  

Resources

Chronic Pain Couple (Top Tips For Communicating With Your Partner About Pain)

Health (How to Describe Your Pain to Doctors)

Harriet Lerner (The Dance of Anger, 2005, HarperCollins: NY)

Live Plan Be – Pain BC (Four Communication Tools for Close Relationships)

My Chronic Pain Team: How Good Boundaries Make Life Easier

Why Acupuncture Works For Chronic Pain, According To Science (And How To Make It Work For You!)


Acupuncture is the therapeutic use of very thin, hair-width needles to stimulate specific points on the body to reduce pain or disease and promote wellbeing. Before I was diagnosed, I never had expected to become an acupuncture aficionado. My impression was that it seemed like a painful way to go about treating health conditions. I was also skeptical about how effective it could be. However, like many other chronic pain patients before me, the limited treatment options at my doctor’s office left me searching for alternatives. Trying acupuncture started to make sense. After looking into it and trying it myself, I have realized that it is a valuable tool in my chronic pain treatment toolbox.

Acupuncture has been used for over 3,000 years and is an integral part of Traditional Chinese Medicine (TCM). In this medical system, health is understood as achieving a balance between opposing forces (yin and yang). Traditionally, essential life energy, called ‘qi’ (chee) is believed to flow along channels in the body called meridians, keeping yin and yang balanced. Acupuncture points are mapped along meridians. If the flow of qi is blocked, it causes pain and disease (imbalance). Stimulating acupuncture points restores the flow of qi along the meridians, improving the health of the individual and restoring balance.

Western medicine offers a different perspective on how acupuncture works. Scientific studies show that acupuncture points are frequently located on nerve bundles or muscle trigger points (Beck, 2010). Acupuncture has been found to increase blood flow to tissues around the acupuncture point, promote healing of localized tissues and affect the central nervous system (Beck, 2010). Some of the nervous system effects include down-regulating pain sensation, encouraging a relaxed brain state, and calming the autonomic nervous system (Beck, 2010). However, some sceptics believe these findings only demonstrate a strong placebo response to acupuncture.

Dozens of studies have investigated whether acupuncture is an effective treatment for chronic pain. The National Centre for Complementary and Integrative Health (2016) explains that “Results from a number of studies suggest acupuncture may help…types of pain that are often chronic,” including low-back pain, neck pain and osteoarthritis. Acupuncture may also reduce the frequency of tension headaches and prevent migraines (NCCIH, 2016).

A recent study by Vas et al. (2016) investigated the effectiveness of individualized acupuncture treatment programs for patients with fibromyalgia (as opposed to most studies that use a standardized treatment program). Tailored treatments were compared to “sham acupuncture” treatments – needles inserted at random points on the body. Researchers found that, after nine weeks of 20 minute treatment sessions, individuals who received the tailored acupuncture reported a 41% decrease in pain compared to 27% for the sham acupuncture group (Vas, 2016).

The NCCIH (2016) explains that one of the benefits of acupuncture is the low-side effect profile (when conducted by a credentialed acupuncturist using sterilized needles). Since medication for chronic pain often causes significant side effects, this makes acupuncture an attractive treatment option for people living with chronic pain.

If you’re interested in trying to acupuncture, you should be aware that there are two broad types of practitioners. The first are practitioners of Traditional Chinese Medicine Acupuncture, and should have their certification accredited by a recognized professional body like the National Certification Commission for Acupuncture and Oriental Medicine. The second school of acupuncturists practice Contemporary Medical Acupuncture, based on western medical principles rather than balancing qi in the body. Often these practitioners are physiotherapists (physical therapists), naturopaths, or chiropractors who have received additional certifications in this area.

How do you decide which type of practitioner to see? TCM acupuncturists will treat your from a whole-body perspective, and may offer new insights or see connections other medical professionals have missed. Contemporary medical acupuncturists are probably most effective at treating specific musculoskeletel problems. For example, my physiotherapy sessions have become more effective at relieving neck and low back muscles spasms since my therapist began incorporating acupuncture. In contrast, my TCM acupuncturist has helped me reduce my overall number of flares, stress and fatigue, but is less helpful at resolving immediate problems. I have to add that TCM acupuncturists are often much more adept at inserting needles painlessly – after all, this is their area of expertise! 

You may be thinking “But I hate needles; this sounds too painful!” In my own experience, the needle insertion feels like a slight pinch, which disappears in 3-5 seconds. If there is any discomfort, the acupuncturist will remove the needle. After insertion, you usually cannot feel the needles. Occasionally, there may be a sense of warmth or heaviness around the insertion point. The needles are typically left in for 15-30 minutes while you rest.

There is a wide variation in the skill level and “bedside manner” of acupuncturists. For that reason, it’s important to do your research and come prepared with a list of questions:

  • Research the practitioner you are considering seeing to ensure that they have a recognized certification from an accrediting body.
  •  Ensure that the clinic has a clean needle policy – that all needles are pre-packaged, sterilized and unused (I have never come across a clinic that does not do this, but better to be safe than sorry!)
  • Contact the clinic and ask whether they have experience treating clients who have similar chronic pain conditions. Do not go to a spa or aesthetician for pain treatment!
  • Ask that they provide extra pillows to support your body while lying down and a treatment table with a head cradle (an oval opening for face support when you are lying on your stomach, so you do not need to turn your head to the side.
  • Ensure that they provide you with a way to call for assistance. It is uncomfortable to move while needles are inserted, so it is imperative that you can get help. The clinic should be able to provide you with a button to push to summon help or that someone can hear you easily.
  • Tell the practitioner if this is your first time receiving acupuncture. Ask that they only use 5 to 10 needles so that you can test how your body will respond. There is no need to trigger a flare by starting with aggressive treatment.
  • You may be offered additional treatments, like acupuncture with a mild electric current, cupping (using suction cups) or moxibustion. Make sure all your questions are answered before you start and always ‘trial’ the treatment the first time. Once, I agree to have my entire back suction cupped, and I had the pain and bruises for days afterward. If I had only allowed a small area to be cupped, I could have realized this treatment wasn’t for me without the suffering!
  • Just like with anyone who is a part of your treatment team, it’s important to make sure that you get along and that they provide patient-centered care.

References:

Beck, M. (2010). Decoding an Ancient Therapy. Wall Street Journal. Retrieved Oct. 15, 2016, from http://www.wsj.com/articles/SB10001424052748704841304575137872667749264

Nahin, R., et al. (2016). Evidence-based evaluation of complementary health approaches for pain management in the United States. Mayo Clinic Proceedings, 91(9): 1292-1306. doi: http://dx.doi.org/10.1016/j.mayocp.2016.06.007

NCCIH. (2016, January). Acupuncture: In-Depth. Retrieved Oct. 15, 2016, from https://nccih.nih.gov/health/acupuncture/introduction

Vas, J., et al. (2016). Acupuncture for fibromyalgia in primary care: a randomised controlled trial. Acupuncture in Medicine, 34: 257-66. doi: 10.1136/acupmed-2015-010950.

Vickers, A. J., et al. (2012). Acupuncture for Chronic Pain Individual Patient Meta-analysis. Arch Intern Med. 172(19): 1444-53. doi:10.1001/archinternmed.2012.365

Here’s How I’m Staying Sane in 2020: Easy, Lazy De-Stressors

Here's How I'm Staying Sane in 2020

2020 is basically a global dumpster fire. It’s hard to find the positive any way you look at things, from the pandemic, to politics, to police brutality. Due to chronic pain, I already have a low stress threshold. It’s all just too much some times.

Personally, I’m struggling to keep up with my meditation practice, even though I know it helps me. Instead I’m trying to be mindful while I do everyday tasks, like taking a walk, making dinner of even brushing my teeth. Instead I’m finding that turning to comforting, enjoyable things is the best way to de-stress and stay sane (more or less?).

Just hoping I might get around to nature walks or cat cuddles means I either forget, or I don’t mindfully take it in. Walking through a park while looking at my phone cancels out the benefits. So, I’ve found that intentionally seeking these things out and planning to do them has helped me to make them  part of my routine. Which one of these ideas do you find most helpful?

Animal Companionship

If I was going to name the reasons why I love the company of my cat Sara, I would list her affection, her funny antics and her general adorable-ness. But it turns out that, in addition, spending time with her is also good for my health. Specifically, animal companionship can reduce pain, lower stress and improve mood in people with chronic pain (Confronting  Chronic  Pain). These benefits are experienced not only by pet parents, but by anybody who spends time with an animal. If adopting a cat or dog is not feasible for you, consider visiting regularly with a friend or family member’s pet. You can also talk with your doctor about clinics or organizations that provide therapy dog visits – even a couple of short sessions per week can make a difference!

Commune With Nature

The power of flowers: did you know that just looking at images of nature is enough to reduce your stress and anxiety? A 2015 study published in the International Journal of Environmental Research and Public Health found that just five minutes spent gazing at natural photos promotes relaxation and recovery after experiencing a stressful period. Who doesn’t need some of that right now?!

Of course, getting out into nature is even better: it lowers stress levels and boosts mood. It help us to get out of our heads, stop ruminating about our worries and pay attention to the here-and-now. One study showed that walking in a forest lowered blood pressure and reduced levels of the stress hormone cortisol (NBC). You don’t have to be able to hike to enjoy nature. As long as you are in a natural setting – sitting on a bench, enjoying a picnic, or lying back with the car doors open– are all ways to enjoy the benefits of relaxing outside. Recently, I researched accessible parks and paths in my area and have been able to spend several lovely afternoons relaxing in nature – I always feel better for several days afterwards!

Tune in to Music

Listening to music is a powerful way to de-stress. Music directly impacts our feelings via the unique effect listening to it has on the functioning of our brains and bodies. Research has demonstrated that listening to music, particularly calming classical music, causes lower blood pressure, reduced heart rate and a drop in stress hormones (Psych Central). Music acts as a positive distraction, while also anchoring us in the present moment. But the benefits don’t stop there. Tuning in for an hour a day has been found to reduce pain and depressionby up to a quarter (Science Daily.) In this study, it did not matter whether participants listened to their favourite relaxing music or music chosen by researchers. I’ve found that listening to music when I’m having trouble sleeping or experiencing a lot of fatigue is very renewing.

Try Probiotics

Could the way to mental health be through your stomach? An emerging field of research has found links between probiotics (healthful bacteria that live in the digestive tract) in the gut and brain function. Some probiotics produce neurotransmitters (chemicals that regulate the nervous system), such as serotonin, that affect mood. When neurotransmitters are secreted by probiotics in the digestive tract, they may trigger the complex nerve network in the gut to signal the brain in a way that positively effects emotions (University Health News). In some studies, certain probiotics have been shown to reduce stress, anxiety and depression, including Lactobacillus acidophilus and Bifidobacterium bifidum. Probiotics can be taken as a supplement or eaten in fermented foods like yogurt, kefir, kombucha, miso and kimchi.

Laughter is the Best Medicine

We’ve all heard that laughter is the best medicine, but we feel stressed it can be hard to find the humour in things. However, laughter is one of the best antidotes for stress and anxiety – just 5 or 10 minutes can reduce muscle tension, increase endorphin levels, lower blood pressure and regulate levels of stress hormone cortisol (Adrenal Fatigue Solution). Rather than hoping something funny will happen on a stressful day, take advantage of the benefits of laughter by watching your favourite comedy show, sitcom or stand-up comedian. I find it hard to stay in a bad mood after watching late night TV, and who doesn’t love being able to say that you have to watch another episode of your favourite sitcom because it’s good for your mental health?

 

Resources:

Adrenal Fatigue Solution (The stress-relieving benefits of laughter)

Confronting Chronic Pain (Can a pet help your chronic pain?)

NBC (How the simple act of being in nature helps you de-stress)

Psych Central (The power of music to reduce stress)

Science Daily (Listening to music can reduce chronic pain and Depression by up to a quarter)

University Health News (The best probiotics for mood: Psycho-biotics may enhance the gut brain connection)

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.

 

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

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’.

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.

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

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