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/

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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