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

relapse

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your Mindful Guide to Surviving the Holidays

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

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

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

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

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

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

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

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

1) Take A Mindful Pause

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

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

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

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

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

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

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

3) Take in the Good

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

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

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

 

 

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

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

Optimism and Chronic Illness

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

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

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

But, Can a Positive Attitude Actually Improve Chronic Illness?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, How Does Positive Thinking Affect Chronic Illness?

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

References:

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

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

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

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

 

Tune In: How Listening to Music Improves Fibromyalgia

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

How Listening to music improves fibromyalgia

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

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

Research on the Impact of Music on Fibromyalgia

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

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

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

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

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

Why Music Improves Fibromyalgia Symptoms

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

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

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

How Listening to Music Improves Fibromyalgia Symptoms

References:

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

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

[3] Garza-Villarreal EA, Wilson AD, Vase L, Brattico E, Barrios FA, Jensen TS, Romero-Romo JI and Vuust P (2014) Music reduces pain and increases functional mobility in fibromyalgiaFront. Psychol5:90. doi: 10.3389/fpsyg.2014.00090

[4][4] Picard, L. M., Bartel, L. R., Gordon, A. S., Cepo, D., Wu, Q., & Pink, L. R. (2014). Music as a sleep aid in fibromyalgia. Pain Research & Management : The Journal of the Canadian Pain Society19(2), 97–101.

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

Book Review: ‘Memory of Health’ by Edie Summers

book review_memory of health

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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Click here to visit Edie Summers’ website

Acceptance, Grief & Chronic Illness: The Top 4 Ways I Learned to Cope After my Diagnosis

Acceptance Grief and Chronic Illness:THE TOP 4 WAYS I LEARNED TO COPE AFTER MY DIAGNOSISYou probably vividly remember that moment when you sat in a doctor’s office and were told that the explanation for all your confusing symptoms was summed up in a word: fibromyalgia. For some of you, this diagnosis was the first chronic condition you were diagnosed with. For others, it was the second. And for those who had already been diagnosed with multiple chronic illnesses, this one was just another to add to the collection. The reality is that fibromyalgia is one of ten conditions the National Institutes of Health recently labelled Chronic Overlapping Pain Conditions (COPCs ).[1] These include chronic migraine and headache, interstitial cystitis, vulvodynia, IBS, low back pain, endometriosis, TMJ disorders, and chronic fatigue syndrome,  In addition, fibromyalgia is commonly diagnosed alongside autoimmune and inflammatory conditions, like rheumatoid arthritis and osteoarthritis.[2]  Finally, anxiety and depression are much more likely to be co-morbid (found simultaneously) in people living with fibromyalgia.[3]  Many fibromyalgia patients will have the déjà-vu experience of sitting in a doctor’s office and being diagnosed with yet another chronic illness.

I recently relived that experience myself. I sat in my OB-GYN’s office and was told that a recent laparoscopy confirmed that I have endometriosis alongside my fibromyalgia. I told myself that after years of dealing with chronic pain, this was no big deal – same problem, different location. All I needed to do was learn what my treatment options were and then go home and use the self-care skills I have developed over the years to manage my pain. A few days later, while I was examining my incision scars, I broke down in tears. “Get a grip,” I told myself, “this is nothing new“. But as the pelvic pain returned, despite the laparoscopy, and I confronted the reality of dealing with another hard-to-manage chronic illness,  I had to acknowledge my feelings of anger and sadness over this new diagnosis. Intellectually I know that being diagnosed with endometriosis will not change my life as dramatically as my fibromyalgia diagnosis did. I’ve already had to leave my career because of my disabling fibro symptoms. Instead, I stay at home pursuing hobbies, like writing and calligraphy, while I look after my health.

So I wondered, why is this second diagnosis affecting me so much?  To answer this question, I needed to remember what I experienced after my first diagnosis.  As anyone who has had a significant diagnosis knows, you go through a period of grieving afterwards. Grief is the “primary emotional process of reacting to… loss” (Absenger, 2015).[4]  The stages of grief after a diagnosis include: numbness-disbelief, separation distress, depression-mourning, and recovery.[5] While there are similarities to the stages of grief that people generally experience after any loss, the grieving process for people diagnosed with a chronic illness has unique characteristics.  In an article for social workers helping clients with chronic illness, Kate Jackson (2014) explains the difference:

Most often, grief is a reaction to a single, time-limited event… Grief associated with chronic illness, however, is more complex for many individuals.  For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses.

The scope of losses due to chronic illness are broad and complex, and they can change during the course of an illness.  The loss of health and ability can, in turn, cause losses in a person’s career, social life, sexual function, body image, relationships, parenting ability  and daily functioning, among other areas.  Most fundamentally, these secondary losses caused by chronic illness can fracture self-identity and diminish self-esteem.  The fact that many people with chronic illness feel that their experiences are invalidated by stigma and disbelief can further their sense of isolation.

The concept of infinite losses helped me to understand why a second diagnosis brought up so many difficult emotions. I have had to acknowledge that the grieving process over one, or multiple, illnesses is not a ‘one and done’ kind of thing. Grief comes in waves. If your illness changes, or you develop a new illness, your emotional response will also change because, correspondingly, the losses you experience are new and different. Prior to the pelvic pain that led to my laparoscopy, my fibromyalgia symptoms had stabilized and I had reached a state of acceptance about my illness. I wanted to believe this was a permanent state. I resisted the idea that a new condition would cause me to grieve again (because who wants to go through that once more?). However, I have come to recognize that the losses caused by endometriosis in my life are significantly different than those caused by fibromyalgia.  For me, endometriosis is entangled with my desire to start a family and be a mother, my body image and my sense of femininity. In contrast, fibromyalgia has primarily affected my career aspirations and the part of my identity that was defined by my professional accomplishments.

Once I acknowledged that I was grieving over my second diagnosis, I felt a greater sense of peace.  Resisting these feelings consumed a lot of my energy and effort. Jackson (2014) explains that “people with unresolved grief may experience more profound and difficult-to-treat depression and anxiety”.  Furthermore, the symptoms of a chronic illness can be worsened by unacknowledged grief, including pain, fatigue and cognition.  As people living with chronic illness, I think it’s important that we be on the lookout for experiencing grief when we develop a new illness, or a change in a current illness.  Understanding that grief and acceptance are fluid states can help us be more open to acknowledging grief.  It’s important to seek out support and help once you recognize these feelings. Here are a few tools and resources for coping with grief about your chronic illness, based on what has helped me:

  • Mindfulness meditation: “Mindfulness is awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn, a pioneer of mindfulness in medicine. The Mindfulness Based Stress Reduction (MBSR) program created by Jon Kabat-Zinn to teach mindfulness to patients had demonstrated remarkable benefits for reducing chronic pain as well as anxiety and depression in fibromyalgia.[6] You can find an MBSR program in your community, or there is a free version online http://palousemindfulness.com/. Alternatively, you can learn meditation using a free app on your phone. Two of my favourites include the Insight Timer and The Meaning of Life Experiment. You can practice mindfulness through meditation, body scans, mindful eating, or mindful movement like yoga or Tai Chi.
  • Cognitive Behavioural Therapy: Studies have found that participating in CBT can help reduce pain, depressive thoughts, and improve quality of life for people with chronic pain.[7] One of the core parts of the program is learning to identify negative thinking traps, or ‘cognitive distortions’.  These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves” (Grohol, 2016).[8] These programs also focus on helpful behaviour changes like learning deep relaxation as well as pacing activities. CBT programs are run in most communities and your doctor should be able to refer you to one.
  • Find a support group, whether in person or online. It can be incredibly powerful to know that you are not alone in facing the challenges caused by your chronic illness. There are private facebook groups for every condition, where you can find support and people with shared experiences. The #spoonie hashtag can help you find other people with chronic illness on twitter. If you are able to, an in-person support group can be an important source of connection if you are struggling. No matter how much support your family and friends can provide, it can help to talk with people who have the same condition(s) you do.
  • Talk with a professional therapist: Unresolved grief is a difficult issue to work through. Many people benefit from talking with an experienced therapist, one-on-one. My advice is to find a counsellor with experience in working with clients who have chronic illness- your specialist may be able to refer you. It’s critical that you ascertain that the therapist validates the existence of your chronic illness and does not tell clients that the illness ‘is all in their head’. Think of the first appointment as an interview, where you see if you are compatible and ask about their professional experience. You may wish to learn more about the therapeutic approaches used by different therapists prior to choosing one. For example, I found that the empathetic, strengths-based counselling provided by a social worker fit much better with my personality than the objective, analytical technique used by a psychiatrist.

Acceptance Grief and Chronic Illness

[1]http://www.overlappingconditions.org/About_COPCs

[2] http://www.sciencedirect.com/science/article/pii/S0025619615002438

[3] https://www.verywell.com/fibromyalgia-comorbid-overlapping-conditions-716184

[4] Absenger, W. (2015). Mindfulness and the Stages of Grief in Chronic Disease. ACEF. Retrieved 15 April 2017 from http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/

[5] National Cancer Institute. (2014, October 8). PDQ® grief, bereavement, and coping with loss. National Cancer Institute. Retrieved 15 April 2017 from http://www.cancer.gov/cancertopics/pdq/supportivecare/bereavement/patient

[6] Paul Grossman, Ulrike Gilmer, Annette Raysz and Ulrike Kesper. 2007. Mindfulness Training as an Intervention for Fibromyalgia: Evidence of Postintervention and 3-Year Follow-up Benefits in Well-being. Psychology and Psychosomatics 76: 226-233

[7] Holmes, A., Christelis, N., and Arnold, C. (2012). Depression and chronic pain. MJA Open Suppl (4):17-20.

[8] Grohol, J. (2016). 15 Common Cognitive Distortions. Psych Central. Retrieved on December 15, 2016, from http://psychcentral.com/lib/15-common-cognitive-distortions/

Beginning Again: Living with the Ups and Downs of Life with Chronic Illness

Originally published on ProHealth.com

Beginning Again: Living with the Ups and Downs of Life with Chronic IllnessI’m sitting here at home, in the middle of the afternoon, still in my pyjamas.  All I have accomplished today is breakfast and coffee.  Over the past, week my schedule has gone completely off-track.  It started with a significant increase in my endometriosis pain, then worsening insomnia/daytime fatigue, and finally, my neck and upper back decided to get in on the fun by seizing up.  This runaway train was accelerated by lack of exercise, increased anxiety and cabin fever.

Watching my goals, plans, and self-care routines careen out of control is sometimes harder for me to accept the symptoms that come with a flare-up.  Maybe it’s because I have always been a bit of a control freak, but the sense of helplessness, frustration and self-doubt that accompanies this situation is one of the most difficult aspects of living with fibromyalgia for me. This time, as I was venting about how it felt like my daily life had come tumbling down like a house of cards, a question occurred to me: What if the problem isn’t a failure to control or manage my schedule during a flare-up, but a failure to understand that living with chronic illness inevitably involves ups and downs?

Beginning Again: Living with the Ups and Downs of Life with Chronic Illness

The practice of mindfulness meditation offers some answers to this question.  Renowned mindfulness teacher Sharon Salzberg writes that, in contrast to our conditioned belief that self-blame and fear of failure help us succeed, “ease in letting go and kindness in starting over is a lot more effective”.[1]  Repeatedly focusing on negative self-judgment and regret is draining, discouraging and ultimately unsustainable.  Meditation can help us practice being compassionate and non-judgemental towards ourselves, helping us to let go and begin again when things don’t go our way. During meditation, the aim is to focus our attention in the present moment, by concentrating on breathing, scanning the body, or repeating a mantra. Inevitably, we lose focus and become distracted by thoughts, worries, plans or emotions. When we realize this has happened, we gently bring our awareness back to the present moment – this breath, this step, this repetition.

The moment we realize our mind has wandered is the crucial moment of the practice. We have a choice: do we berate ourselves for ‘failing’ and force our attention back to the task at hand? Or do we react with kindness towards ourselves and patiently return our attention to the present moment? Salzberg explains “The invitation to begin again (and again and again) that meditation affords is an invitation to the practice of self-compassion – to heal through letting go rather than harming ourselves with cycles of self-doubt, judgment, and criticism.” From this point of view, meditation is like a playing field where I can train for how to cope with the ups and downs of life with chronic illness. I have realized that I can’t control these fluctuations, but I can change how I relate to them. Instead of reacting with self-recrimination and a sense of helplessness, I can respond with compassion and focus my attention on beginning again in this moment.

There is something incredibly hopeful about knowing that “Always, we begin again”, as St. Benedict wrote. It can also be daunting to think that you will have to begin again…and again…and again.  Recently, I was introduced to the concept of tapas in yoga philosophy.  The word is derived from the Sanskrit verb “to burn” and is often translated as “fiery discipline.”[2] Nobody other than those who live with chronic illness can understand the degree of strength it takes to wake up and try again in the face of all our daily challenges.  We are experts in tapas without even knowing it!  I believe that we should direct the fiery discipline that living with chronic illness cultivates in us towards starting over in each moment – instead of cracking the whip and pushing ourselves harder. If we are fiercely dedicated to beginning anew after each setback, then we can change our relationship to the difficult experiences we encounter.

For me, the unpredictability of living with fibromyalgia is one of the hardest parts. Life with chronic illness is an extreme form of constant uncertainty. As people, we tend to prefer stability to uncertainty. Pema Chodron, a Buddhist nun and author, calls this the “fundamental ambiguity of being human” – the longing for predictability and permanence despite the reality that life means constant change (in other words – “this too shall pass”).[3] Chodron argues that resisting this reality leads to suffering and accepting it means freedom. Opening ourselves to the dynamic, changing nature of our experiences releases us from expectations that things should be this way or that way.

For example,  When we try to run away from difficult feelings or hold on to pleasant feelings, we only create more challenges for ourselves.  I feel a sense of freedom by accepting that living with chronic illness means inevitably fluctuating between better and worse days.  Struggling against this by trying to control for every potential outcome is exhausting.  Blaming myself for failing after every flare is depressing.  This doesn’t mean practicing self-care or pacing is pointless!  It just means that I accept that I can’t control every situation and I am not responsible for every setback.

Here is my new intention. Tomorrow, or the next day, or in a few weeks, I’ll have another flare up.  I will try to understand this as part of the natural cycle of living with my illness. I will be compassionate towards myself when my schedule goes off track.  I will focus my attention on the present moment and the next best thing I can do for myself.  I will draw on the tapas that I have cultivated for strength. And I will begin again.

[1] Salzberg, S. (2015). The fractal moment: An invitation to begin again. On Being. Retrieved Nov 10, 2016 from http://www.onbeing.org/blog/the-fractal-moment-an-invitation-to-begin-again/7589

[2] Lasater, J. (2007, Aug. 28). Cultivate your connections. Yoga Journal. Retrieved Nov 10, 2016 from http://www.yogajournal.com/article/philosophy/cultivate-your-connections/

[3] Chodron, P. (2012). The fundamental ambiguity of being human. Tricycle Magazine. Retrieved Nov 10, 2016 from http://tricycle.org/magazine/fundamental-ambiguity-being-human/

Should You Try Yoga as a Treatment for Your Fibromyalgia?

Should you try yoga as a treatment for your fibromyalgia?Yoga. It’s everywhere. From passers-by on the sidewalk toting yoga mats, to health headlines in the media, it seems like yoga has saturated the mainstream. But if you live with a chronic condition, like fibromyalgia (FM), you may be unaware of what twisting yourself into a pretzel has do with managing your daily symptoms. In fact, you may be unaware that yoga isn’t about twisting yourself into a pretzel at all.

Research is clearly on the side of trying yoga to manage your fibromyalgia symptoms. The Oregon Health and Science University published a study in 2010 that compared the impact of an eight week yoga program on FM patients against a control group who received standard FM treatment. Researchers found that “pain was reduced in the yoga group by an average of 24 percent, fatigue by 30 percent and depression by 42 percent”.

So what is yoga actually all about? And how can it help you manage your chronic condition?  To answer these questions, I asked my good friend and yoga therapist, Kathrin Gottwald, who also blogs at Soulicious Moments.  Kathrin explains that “A carefully tailored yoga practice can not only lead to more flexibility and muscle tone, but also more awareness and potentially a different way of experiencing yourself and life.” This mind-body aspect of yoga exercise is at the core of what makes it effective. “Yoga means union,” explains Kathrin, “it is a practice to establish a feeling of connection to ourselves, others and the world around us.”

Should you try yoga as a treatment for your fibromyalgia?

Before my diagnosis, I was a beginner yoga student. Although I was never a very athletic person, I found I craved my weekly class. Week to week, I noticed that my strength, balance and flexibility improved. I enjoyed being in my body, rather than in my head, for those 60 minutes. After my diagnosis, I assumed by yoga days were over. I could barely sit on the floor, after all!

Eventually,  I attended a pain management class, which included a yoga component led by a teacher who herself had fibromyalgia. I began to include certain yoga poses into my daily stretching routine. Finally, I found a DVD with a yoga routine designed specifically for FM (see below). The genius part of the program is that they show each pose at 3 levels of ability, so you can customize your program based on your daily level of pain. I try to do this routine twice a week. I have the same benefits as before, even though my yoga routine is much gentler and shorter than before: feeling a positive connection to my body, feeling more present, and feeling my flexibility, balance and strength improve.

Beyond physical benefits, yoga is about developing body awareness and mental presence. Kathrin elaborates: “Yoga is not about perfecting the poses or contorting yourself into difficult positions, but it is all about how you relate to yourself and that which you encounter and experience in life. Especially for people living with chronic conditions it can be very beneficial to find skillful ways of relating to themselves and their illness.”

I also include a breathing practice three to four times a week along with my yoga routine. This is also an important part of yoga. As Kathrin notes, “In yoga the breath is considered our life force. The practice is to consciously move this energy within you and use it skilfully. Observing the breath and resting your awareness on your breath is already a yoga practice in itself.” Even if you are having a flare, and all you can do is breathe, you can still practice yoga. This practice has to do with sitting or lying quietly and focusing on the breath. When thoughts or sensations distract you, as they inevitably will, you gently bring your attention back to the breath as soon as you realize you have gotten carried away.

I find yoga helps me ‘practice’ being in the here and now, helps me to know the contents of my own mind and heart better, and increases my awareness of my body, so I can check in with what I am able to do day to day. In Kathrin’s words, “Yoga practice starts with being. We do not need to constantly strive to be different and improve. When we practice, we are just striving to be more fully ourselves.”

So if you want to start a yoga practice, where do you begin? You can work one-on-one with a yoga therapist or teacher. Kathrin explains that “in yoga therapy you work with a specific intention of finding more skilful ways of relating to yourself and your condition. This is a very personal and individual path. The yoga therapist will develop a targeted practice for you, which will be individually adapted as needed”.

More and more studios are beginning to offer targeted classes, like yoga for back pain or chair yoga, which you may be able to join. I definitely recommend asking if you can observe a class before joining, to ensure it is at your level and uses a therapeutic approach.

If this is out of your price range, several resources you can consider are listed below. These include instructional DVDs or online routines you can do at home. This is usually better for people with some yoga experience, to avoid injury.  However you start, I hope you find greater presence, connection, and health!

 

The Mental Torture of Medical Waiting Lists (& How I Learned to Cope)

The Mental Torture of Medical Waiting ListsWaiting.  Before this past year, I would have described waiting as boring, frustrating and draining.  Then I spent 12 months in pain, waiting for a specialist appointment, waiting for tests, and waiting for surgery.  After all that, I’m still waiting for an answer and a solution to my symptoms.  Now I would describe waiting as suffocating, crazy-making and excruciating.  Waiting can become a form of mental torture when your health, daily functioning and quality of life are at the mercy of hospital bureaucrats.

Exactly one year ago this month, I went to my family doctor because of an increase in pelvic pain.  Not only were my periods more painful, but I was experiencing debilitating cramp-like pain more days of the month then not.  My family doctor referred me to my OB-GYN for consultation at Mount Sinai Hospital in Toronto.  I had to wait three months just for an appointment date.  Then, the appointment was rescheduled twice. The office assistant would not call me back, even to give me a rough estimate for when a makeup appointment might be rescheduled.  At one point I even broke down on the phone while leaving a message for the admin assistant. More than anything else, I felt helpless in the face of this mysterious pain that was making my day-to-day life so difficult, with no ability to control the outcome.

Finally, 5 months after the initial referral, I saw the specialist.  We decided a laparoscopy was the best course of action for diagnosis and treatment of suspected endometriosis.  Her assistant told me to call back in two months in order to book a surgery date.  When I called, she told me to call back in another two months.  I called back and left a message.  No reply.  Two weeks later, another message.  No reply.  During this time my pain had spiked significantly and was now difficult to manage, even with multiple pain medications.

I felt trapped.  If I tried to see a different doctor, it would take months for an initial appointment.  If I tried to even make an appointment with the same doctor, prior to the surgery, it would take months.  The pain was making it difficult to socialize, to accomplish day to day activities, to exercise, or to even go on a date with my husband.  I felt angry and anxious.  My mental health was deteriorating.

I’m not alone in this experience. Researchers have found the waiting period can significantly impact the health of patients.  Studies have consistently found negative effects in patients waiting for test results, ranging from adverse effects on recovery times, wound healing times, reduced immune defences, and worsening of side effects from medications.  Researchers hypothesize that these effects may be due to anxiety over test results, which is supported by the finding that waiting patients have increased levels of the stress hormone cortisol. Similar impacts have been seen in chronic pain patients waiting for treatment. The study concluded that waiting for longer than six months caused a reduction in quality of life and psychological wellbeing.

Finally, finally, I got the date for the surgery, two weeks beforehand.  It went smoothly enough.  They found and removed endometriosis lesions.  I struggled through the initial recovery.  One week later, the pelvic pain came back.  Same place, same feeling, same pattern.  Perhaps it is part of recovery, or perhaps the surgery wasn’t the solution.  Now, I have to make another appointment and – you guessed it –wait.

How you react to the stress of waiting for diagnosis or a test result may be partly determined by your personality characteristics.  One study found that a high need for closure -something I can definitely relate to- increases anxiety during the waiting period.  In contrast, if you have a high tolerance for uncertainty, you’re less likely to be anxious.  Do you tend to assume the worst?  This characteristic, which researchers called “defensive pessimism,” also increased waiting anxiety.  If you tend to assume things will work out (“dispositional optimism”), then you are less likely to experience anxiety. Constantly ruminating on the outcome of the test result during the waiting period also increases anxiety.

Interrupt the Flow of Negative Self-Talk

So what can you do you if you have certain characteristics that may increase your stress levels during a waiting period for a diagnosis, procedure or test result?  Firstly, I learned that it is important to interrupt constantly ruminating on the upcoming medical appointment. Try to be aware of your thought patterns and self-talk during this stressful period.  I try to regularly check-in with myself during the day.  If you notice that you are dwelling on the frustration of waiting, acknowledge it.  Then make a deliberate choice to return yourself to the present.  A few minutes of deep breathing or meditation may help to relax you and create space between you and these stressful thoughts.

Distract Your Mind (or, Your new excuse for binge-watching Netflix)

Distraction is another valuable tool.  Decide to focus on something that will occupy your mind rather than ruminating on a positive test result or unwelcome diagnosis.  This might be a good time to re- watch your favorite comedies, because who doesn’t need a good laugh?

Challenge Self-Judgement

When I find myself thinking about how long I have to wait for my next doctor’s appointment, or my frustration at the lack of answers, I find it really helpful to say to myself “OK, here are those thoughts again”.  I’m trying to be accepting of these thoughts, because it’s only natural to be frustrated and stressed in this situation.  But if there’s nothing I can do about it here and now, then I try to refocus my attention on whatever I have going on in the moment.

It’s a daily struggle to cope with the mental torture of the medical waiting list. Negative emotions are natural and experiencing them is not a failure to manage your feelings. That’s a lesson I keep re-learning. I try to see it as a question of what is the most helpful response to the negative emotions, rather than getting frustrated with myself for feeling down in the first place.

Self-Care, Self-Care, Self-Care

It’s very important to practice self-care and stress management during this time.  Activities that have been proven to reduce anxiety include yoga, exercise, meditation, guided visualization, walking in nature, journaling and deep breathing.  Personally I find regular meditation really helpful for my mental sanity.  During this time, it’s helpful to refocus on the fundamentals of a healthy lifestyle, like trying to get enough sleep, eating nutritious food and connecting with your social support system.

Here are few resources for staying present and de-stressing:

References:

Hoffman, J. (2012). The anxiety of waiting for test results. New York Times. Retrieved 10 Feb. 2017 from https://well.blogs.nytimes.com/2012/07/23/the-anxiety-of-waiting-for-test-results/

Lynch, M. et al. (2008). A systematic review of the effect of waiting for treatment for chronic pain. PAIN 136(1-2): 97-116. Retrieved 10 Feb. 2017 from http://www.sciencedirect.com/science/article/pii/S0304395907003442.

Markman, A. (2014). Waiting is the hardest part, but you can make it easier. Psych Today. Retrieved 10 Feb. 2017 from http://www.psychologytoday.com/blog/ulterior-motives/201407/the-waiting-is-the-hardest-part-you-can-make-it-easier

Mind Games: How I Cope During a Chronic Illness Relapse (Part 2)

 

Coping with chronic illness and fibromyalgia relapse using mindfulness and other mental strategiesIn my last post, I wrote about my fatigue relapse last winter and my present pain progression this winter. My aim in writing these two posts is to share how I cope with illness setbacks, using ‘mind games’, in the hope they help someone else experiencing a relapse.

In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life. In Part I, I discussed 1) challenging negative patterns of thinking and 2) cultivating presence.

3) Take in the Good: Are you more likely to remember compliments or criticism?  If you’re like most people, you pick the latter.  That is because the human brain has a built in “negativity bias”, which allows us to learn from and protect ourselves from bad experiences.[i] Unfortunately, it can also make us anxious, irritable and depressed.  One way to rewire your brain so that it takes positive experiences into account, as well as negative, is to be intentional about what Rick Hanson calls “taking in the good”.[ii] This is akin to the old adage to “stop and smell the roses”. The first step is to be mindful of positive moments (to notice the roses) – the taste of a good meal, sharing a laugh with a coworker or hugging your partner. Practicing mindfulness meditation can help with this part, but you can also just start with the intention to take in the good today.  Secondly, pause for 20-30 seconds and focus your attention on enjoying the experience, instead of moving on to the next thing (focus on how pleasant the fragrance of the roses is). Finally, let the positive experience sink into you.  You can do this by visualizing a warm feeling spreading through your torso or by intellectually recognizing that by doing this exercise you’re literally rewiring your brain to tilt towards positive experiences.  If you do this several times a day, you can change the neural pathways in your brain so that positive experiences are ‘registered’ more in your overall outlook on the day.  This practice has been really helpful for my mental and emotional health while I deal of the challenges of chronic illness, especially during a relapse.

4) Pursue an Enjoyable Hobby: After my fatigue relapse, I withdrew from school because it was too demanding. With time on my hands, I decided I wanted to learn something creative. I looked for a hobby that wouldn’t hurt my painful upper back, and eventually settled on modern calligraphy. Last winter, calligraphy practice was often the one activity I did on a daily basis. Seeing my improvement as I wrote out the letters was a bright spot during that difficult period. This time around, I am learning how to digitize my calligraphy, with the hope of opening an Etsy shop sometime next year. Having a sense of personal accomplishment means so much to my mental wellbeing. Dr. Caudill notes that “Some patients feel so bad about their pain and their lack of a ‘productive life’ that they … feel they don’t deserve any pleasure” (2002, p. 83).[iii] Not only is it ok to pursue enjoyable activities, it’s actually critical for your mental health and stress management, which are important components of any treatment regimen. I can’t encourage fellow spoonies enough to find a hobby or creative outlet to focus on during a relapse or flare. Other activities I enjoy include online learning courses (free!) and writing/blogging. In order to get the most out of an enjoyable hobby, be present during these activites. Take in the good moments when you finish a project or learn a new skill. And focus on recognizing what you were able to do today, rather than what you weren’t. Negative thinking habits aren’t changed more easily than any other habit, but routinely practicing positive mental habits is a powerful way to improve your quality of life during a relapse.

[i] http://www.rickhanson.net/take-in-the-good/

[ii] http://www.rickhanson.net/take-in-the-good/

[iii] Margaret Caudill. (2002). Managing Pain Before it Manages You, NY:     Guilford Press.