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.

 

 

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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/

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

The Top 3 Things I Do Every Morning to Manage My Fibromyalgia

the-top-3-things-i-do-every-morning-to-manage-my-fibromyalgia

Mornings are tough when you live with fibromyalgia. If you’re like me, you wake up stiff and tired, and shuffle out of bed. I usually sit in a stupor, drinking tea, eating breakfast and watching tv. I’ve learned that it’s what I do next that determines how the rest of my day will go. Here are the top three things I do to keep my fibro symptoms under control.

  1. Eat super seeds for breakfast. (And no, I don’t mean bird food!)

Seeds may be small, but they’re still super!  Seeds like chia, flax and hemp hearts (hemp seeds with the hull removed) contain several key fibromyalgia-fighting nutrients.  I usually add 2 tablespoons of seeds to my morning oatmeal or smoothie. Of course, it’s still important to have a balanced breakfast, with protein, healthy carbs and fiber. All three seeds are rich in antioxidants, which are critical for people living with fibromyalgia, because we have high rates of oxidative stress caused by tissue-damaging free radicals (read more about the importance of anti-oxidants to fibromyalgia here).  Chia and flax both contain a plant based source of omega-3, which is anti-inflammatory (although it’s important to note that omega-3 from fish oil is more potent overall).

 Two tablespoons of hemp seeds provide 50% of your daily recommended allowance of magnesium (chia comes in at 18% and flax at 14%).  Magnesium has been demonstrated in several studies to reduce fibromyalgia symptoms, and is important for nerve and muscle health.[1] Chia, flax and hemp seeds are also rich in essential minerals like manganese, phosphorus and iron. Chia is a great source of calcium. Did you know that women living with fibromyalgia have low levels of these minerals?[2]  All three seeds also contain fiber, which can be helpful if you suffer from digestive symptoms or IBS, and is good for your overall gut health. 

2. Stretch

Every morning I spend about half an hour doing a full body stretching routine.  Stretching is probably the single most important management tool I have for my pain.  I use a combination of stretches recommended by my physiotherapist, gentle yoga poses (like a child’s pose) and basic stretches I learned in gym class. A recent review of research into the effects of stretching on fibromyalgia treatment found significant improvements in pain and quality of life [3]. According to the Mayo Clinic, stretching improves flexibility, range of motion and increases blood flow to the area.[4] It’s usually recommended that stretches should be held for at least 30 seconds.  My physiotherapist suggested that, if I found this too painful, I should hold for 5 seconds, gently release, and repeat six times.  She said that gentle rhythmic movements are sometimes easier for our sensitive nervous systems to handle.  You may find it necessary to warm up before stretching by walking around your home several times and/or taking a hot shower. Here is a basic list of stretches: 

Cat and cow yoga pose 5 x
Child’s pose
Knees to chest (on back)

Keyhole piriformis stretch (ankle to opposite knee and pull) each side

Hamstring Stretch

Stretches for neck and shoulder pain

Forward head tilt
Ear to shoulder tilt both sides

“Nose to armpit” stretch

“Eagle arm” upper back stretch

3. Meditate

Early on after my diagnosis my pain specialist recommended that I take a Mindfulness-Based Stress Reduction course for pain management.  This is one of the best things I’ve done for my sanity and well-being!  There is a growing body of evidence that shows mindfulness meditation helps to reduce pain, anxiety and depression (read more about mindfulness and fibromyalgia here).[5] “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[6]. Being mindful means intentionally being present with your breath, thoughts, feelings and sensations.  Inevitably, your mind will become distracted by worries, memories, or plans. This is an opportunity to begin again, by gently guiding your awareness back to the present moment. You can practice mindfulness through breath meditation, body scans, mindful eating, or mindful movement like yoga or Tai Chi all of which, will in turn help you practice mindful touch (find a list of free guided practices in the references[7]).  I use the Insight Timer app on my phone to do an 8 minutes self-guided breathing meditation or listen to a guided meditation most weekday mornings.

[1] http://www.fmaware.org/magnesium-fibromyalgia-treatment/

[2] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3192333/

[3] http://fibromyalgianewstoday.com/2015/04/21/systematic-review-reveals-muscle-stretching-exercises-seem-improve-fibromyalgia-symptoms/

[4] http://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/stretching/art-20047931

[5] William, M. and Penman, D. (2012). Mindfulness, NY: Rodale. p.6.

[6] http://www.mindful.org/jon-kabat-zinn-defining-mindfulness/

[7] http://www.freemindfulness.org/download

Self-Care for Chonic Illness: Research Round-up

Research Roundup

Part of being a health nerd means enjoying reading research. As a health nerd and a blogger I figured I should start a series of the most interesting recent research on chronic conditions. Learning about self-care has been an important part of my health journey, as well as a source of enjoyment for my inner nerd. So here is the first installment of my Research Roundup series, organized by self-care skills – Lifestyle, Exercise,  Attitude, and Nutrition. I hope this encourages you to make self-care part of your health journey! #SelfCareMvmt

  • Lifestyle: A recent Australian study investigated the most effective strategies for improving sleep among an elite women’s basketball team. The results may help you prioritize which strategies to try if you suffer from insomnia or poor quality sleep. The most effective bedtime routines were: turning off all electronic devices at least an hour before bed (that includes your phone), practicing mindfulness or meditation, and sleeping in a cool environment. These strategies were found to improve sleep and performance on the court.
  • Exercise: A New York Times editorial recently argued that moving more, not weight loss, is the cause of the dramatic health benefits of exercise demonstrated in hundreds of research studies. From arthritis, to cardiovascular disease, to Parkinson’s, to chronic fatigue syndrome, to depression, a massive meta-analysis found that exercise improved health and well-being among all these chronic conditions. It’s no wonder that the Academy of Medical Roil Colleges calls exercise a ‘miracle cure’. But moving more, as the editorial pointed out, does not require shedding blood sweat and tears. Instead, researchers recommend 150 minutes of moderate exercise per week. This could involve walking your dog or walking laps around your living room, cycling at the gym or gardening at home, doing seated tai chi by following an instructional DVD or vacuuming your house.
  • Attitude: Forgiveness can protect your health from the negative effects of stress, according to a new study. Researchers assessed 148 participants in terms of stressful life experiences, mental and physical health, and their tendency to forgive. As expected, high levels of lifetime stress correlated with worse health outcomes. Unexpectedly, a high tendency towards forgiveness eliminated the negative impacts of stress on health. In other words, forgiveness of yourself and others acts as a buffer against stress, eliminating the connection between stress and mental or physical illness. Interestingly, forgiveness is a trait that can be cultivated. Prior research has demonstrated that briefly praying or meditating on forgiveness can increase your ability to be forgiving in close relationships.
  • Nutrition: A new study weighs in on the debate about whether eating grains is good for you. You may be familiar with the paleo diet. Its proponents argue that the human digestive system has not evolved beyond the hunter-gatherer diet. Grains, they argue, are a modern invention evolutionarily speaking, and wreak havoc in the human body, whether through causing inflammation or exacerbating autoimmune conditions. On the other side of the debate, researchers argue that grains provide necessary nutrients, fiber and energy. This study comes down on the latter side of the argument. An international team found that a higher consumption of whole grains correlated with a lower risk of chronic disease and premature death from all causes. Three servings of whole grains per day (90 g/day) was associated with a 22% reduction cardiovascular disease risk, 15% reduction of cancer risk and 51% reduction in diabetes risk. It is important to know that no benefits were associated with intake of refined/processed grains or from white rice. (If you are interested in how to differentiate whole grain from refined grain products, follow this link).

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Photo by Lukasz Zajac

Shared to Fibro Friday Link-up at the Fibro Blogger Directory and Chronic Friday Linkup

Back to class: Mindfulness Based Stress Reduction

Meditation

Meditation (Photo credit: holisticgeek)

I am about to go to the second class of my Mindfulness Based Stress Reduction (MBSR) course. In the summer I wrote several posts on reading the Mindfulness Solution to Pain and practicing meditations described in the book.  Mindfulness involves “paying attention on purpose, in the present moment, and nonjudgmentally, to the unfolding of experience moment to moment”, as defined by Jon Kabat-Zinn, founder of the MBSR program. I also posted on research showing how effective mindfulness practice is for chronic pain.

I have really enjoyed doing the assigned “homework” from the first class. The first part was to do a 30 minute body scan from the course CD. (A body scan meditation involves paying attention to different parts of your body for a few moments and observing the sensations you feel). This is the longest meditation I’ve ever done. The practices I have done before were breath meditations, usually only for a max time of 20 minutes. I really like the body scan because I am able to really focus and feel more in touch with what’s going on in my body. I feel like my mind wanders less then when I am doing breath meditation (focusing on your breath). It is very relaxing to have a break from your mind!

Of course, I’m not always in such a good mood when I go to meditate. Before I was meditating when I felt like it, which was usually when I already felt relaxed or calm. The idea of the MBSR program is that you commit to practice seven days a week for eight weeks – as Jon Kabat-Zinn says “you don’t have to like it, you just have to do it”. It sounds a little bit rigid but it’s really important while you are trying to establish meditation has a habit. When you go to practice and you realize you are stressed, agitated, and your mind is wandering everywhere, focusing can seem like the last thing you want to. But that’s when you realize how helpful mindfulness can be! It doesn’t necessarily produce calm every time. It does give you a chance to observe what is going on inside your head. Usually that helps me to figure out a more helpful way of dealing with things then spazzing out, or to recognize stressful patterns of thinking.

One thing I do have to keep working on is not to judge myself when I realized my mind has wandered off or I’m not feeling calmer/better after meditating. As the facilitator of my class says “if you have a mind, it’s going to wander”. You really can’t get into mindfulness with expectations about what it “should” do for you.

The other part of our homework was to try to eat mindfully at least once everyday. It’s really nice to realize how many sensations and moments are available to you if you stop to enjoy them. I love food, cooking and eating. When you realize how many times you just wolf down delicious meals… I always feel like my life is so limited now that I have fibromyalgia, so I think it’s really good for me to realize how much I do have around me to enjoy!

Meditation Journal

I thought I would post some reflections on my attempts meditating in the last couple of weeks. So far, I’ve been able to meditate every day (except weekends), which is the longest period of time I have ever been able to keep it up. I’ve noticed a few subtle changes in that time. I was definitely able to focus on my breath without getting distracted for up to a few minutes. This is pretty good for me, because I am always jumping around to different thoughts in my mind. I think I was able to notice intervening thoughts more quickly, like evaluations of how I was doing, or thoughts about the past or future. When I notice them, though, I still have to work on just noting the content of the thought and then escorting my attention back to the breath, without being judgey on getting distracted the first place. The thoughts I find most slippery are thoughts about meditating while I am meditating – like thoughts about making a nice meditation corner in my apartment, thoughts about building my practice into a lifelong habit, thoughts about becoming less stressed and more Zen, etc. Of course, none of those nice things is going to happen if I’m thinking about them instead of actually meditating!

I like Jon Kabat-Zinn’s explanation on his disk (meditation for pain) – that meditation is a journey exploring yourself and your relationship to pain, with no destinations promised, such as ending up having less pain or becoming enlightened. Dr. Jackie Gardner-Nix promises more – less stress and reduced pain. I think that Dr. Jackie is probably trying to give hope to chronic pain patients, as well as feels supported by recent research, whereas Kabat-Zinn is coming from a more traditional meditation background which emphasizes nonattachment and impermanence/changeability. I think both perspectives give a good balance; the first gives you hope and reason to keep practicing, while the second reminds you that being judgmental or frustrated, because you aren’t where you want to be yet, defeats the purpose of the exercise. I think that over the last two weeks I got better at understanding that each day is different and that I can’t expect a certain result every time I meditate.

One of the phrases on my guided meditation track asks you to reflect on “accepting being in the here and now”. While I was meditating last week, I found a strong internal resistance to those words. When I looked around my living room, I felt sad and resigned to be there, then. I realized that these feelings came up because I feel unhappy with my current lot – being at home, on disability, without any concrete plans for the future. This week I made more of an effort to get out and spend my time doing the things that I enjoy. I went to an interesting talk at the library, watched lectures from my online course at a café, and went for lunch with my godmother (this is part of my philosophy of living like I am a retiree – don’t people wait all their lives for time to pursue their hobbies?). Then I had another, more interesting, revelation: I have been feeling guilty for enjoying my life again. Remember the superwoman overachiever tendencies? Part of me thinks that, until I have ‘solved’ the problem of my fibromyalgia, I have no right to have fun. Wouldn’t that be tantamount to shirking my responsibilities as a grown-up, and flaking out on life?

Wow, writing that down makes it seem even more crazy. It seems obvious that it would be hard to heal if I keep pulling myself down into a pit of despondency. So, this week I’ve been challenging that voice by saying that my life is pretty good, actually, thank you very much!

Mentally Mindful

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In the past two weeks I finally moved into my new apartment and it is starting to feel like home. The silence and the space are so much more conducive to learning mindful living then the construction zone I lived in before. I did not feel very Zen during the move or unpacking, but that’s what I’m working on now. No time like the present!

The second part of chapter 2 in The Mindfulness Solution To Pain by Dr. Jackie Gardner – Nix talks about mental attitudes related to mindfulness. (I’m going to keep summarizing the key points that jumped out at me, and connections I made to my own life; I don”t want to put citations everywhere). Attitudes can be enabling or harmful to our well-being, and awareness about these attitudes can help us to strengthen positive ones and change negative ones.

The first attitude associated with mindfulness is being nonjudgmental. This is something that I have a long way to go to achieve! On Monday I was listening to Dr. Jackie Gardner – Nix’ guided meditation (more on this in a moment) and my practice was not going as well as last week. Every other breath I caught myself thinking things like “my breathing is too fast and shallow”, “why can’t I stay focused today?”, “I don’t think I’m ever going to get this right”. In the book, the authors point out that judgments about whether something is positive or negative are very black and white, and often miss the ‘gray’ nuanced part of experiences. Bad experiences can have silver linings, and good things aren’t always what they seem. Negative judgments can begin a domino effect of reactive emotions, tension and increased pain. Given the changeability and impermanence of things, judgments can really be a waste of time. I’m going to have to work on this in meditation practice and in the rest of my life too! Being off work on disability leave, as I’ve mentioned before, definitely leads me to be very judgmental about the lack of accomplishment, purpose, etc. I think they called this the inserting “superwoman overachiever cycle” in the last chapter!I really liked the observation made in the book that it can be freeing to experience situations or encounters with people and not judge them.

The second attitude associated with mindfulness is the beginner’s mind. To achieve this mental stance, you have to try to overcome your own biases, prejudices and preconceived notions, and not bring them to present situations or encounters. This reminds me of what my anthropology professors called ‘reflexive thinking’. Anthropologists believe that it’s impossible to cultivate a purely objective stand point, but by being aware of your own subjective point of view, you can still produce valuable insights and new knowledge about the culture you are studying. So this mindful attitude sounds to me like being an anthropologist studying yourself!

The third and fourth attitudes to cultivate are trust and patience. Trust that developing awareness will lead to change over time, and patience regarding how long that will take.

The next chapter (chapter 3) is about beginning a formal meditation practice. The authors define this as “intentionally setting aside a specific period of time… In your day to systematically cultivate mindfulness by focusing your attention moment by moment on some particular aspect of your experience, and actively noting when your mind wanders – as it always will – and then bringing it back to the focus” (Gardner-Nix and Costin-Hall, 2009). Usually breathing is the focus of mindfulness practice. I decided to buy Dr. Gardner-Nix’ CD of guided meditations, called ‘meditations for the mindfulness solution to pain’, which is available on iTunes. I thought it would be best to go with this one because it is designed to specifically accompany the book. The authors also recommend Andrew Weil’s “meditation for optimum health”, available from Sounds True (Google for website).  I also really like John Kabat-Zinn’s disc of guided meditations called “mindfulness meditation for pain relief”.  I’m not going to give a detailed summary of how to meditate because I think these resources to a much better job than I ever could. I did just want to mention the advice given at the end of this chapter to pace yourself while incorporating meditation into your daily routine – start with 5 min., slowly work up to 10, then 20, and so on. I’m at 10 minutes right now. I’d like to work up to 20, eventually without the guide, but for now I like listening 😉 p.s. I don’t sit cross-legged in serene white while meditating. I have to lie down with pillows under my legs on the couch or on the floor – fibrostyle. My body wouldn’t put up with that kind of sitting!

image courtesy of photostock at FreeDigitalPhotos.net