Category: Mind-Body

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

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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

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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?

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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)

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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)

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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.

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

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My new article on Prohealth is about learning to relate differently to the inevitable ups and downs of life with chronic illness, through letting go, drawing on the inner strength all spoonies cultivate, and beginning again. 

Watching my goals, plans, and self-care routines careen out of control is sometimes harder for me to accept than the symptoms that come with a flare-up. Maybe it’s because I have always been 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?

My practice of mindfulness meditation has helped me find 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)

Finish reading here…  http://www.prohealth.com/library/showarticle.cfm?libid=29692

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

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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

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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

Reasons I Meditate

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1. To take a moment to appreciate what my body does for me, all the time, underneath my usual awareness. Breathing is crucial to living. This gratitude towards my body helps me develop a better relationship with my body, because I usually feel locked in an antagonistic struggle – pain, stiffness, insomnia, digestive problems, etc.

2. To take a moment to be amazed at the interdependence of life on our planet, as we cycle oxygen and carbon dioxide between animals and plants. It’s also incredible that the air we breathe has been breathed since the dawn of life. This helps keep things in perspective for me, when I remember to keep a sense of wonder, and stay connected to the environment around me.

3. To soothe my nervous system, which spends too much time in sympathetic fight or flight mode and not enough time in parasympathetic rest and digest mode, thanks to chronic pain. Over time meditation can help rebalance this tendency.

4. To practice being present, which is a skill. This skill can help me enjoy the moments we rush past (stop and smell the roses), and help me respond more calmly to difficult situations. Both of these outcomes are especially important for chronic pain and illness, where we enjoy too little and feel overwhelmed so easily because of the enormous challenges these conditions pose for us.

5. Develop body awareness: To be able to be in touch with my body more readily, so I can better work within my limits. It’s easy to ignore the early warning signs and then crash from pain or fatigue from overdoing things.