Tag: chronic illness

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

A Not-to-Do List for Life with Fibromyalgia

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not-to-do-list-pinterest

I recently began reading Toni Bernhard’s wonderful book How to Live Well with Chronic Illness.  I was inspired to write this post after reading a section in her book where she outlines her ‘not-to-do list’. Bernhard rightly points out that it takes a great deal of self-discipline to stick within the restrictions imposed on your body by chronic illness.  In my own case I’ve found that most of my self-growth has come from recognizing, accepting and learning to do things differently in response to these restrictions.  I thought I would share my own not-to-to list:

  1. Do not equate productivity with self-worth: in my life before fibromyalgia I made work my top priority. I was in my mid-twenties and trying to start a career. I made a lot of sacrifices in my relationships and personal life in order to achieve these goals.  When all this came crashing down and I was no longer able to work, I could not see how I added value to the world around me.  Although I lead a much more well-balanced life now, I still have that voice in the back of my head every day judging whether I accomplished enough, and in turn, how good I feel about myself.  Now I challenge these thoughts.  When you live with chronic illness, every act of self-care, pursuit of a hobby, time spent with a loved one, or even regular work are all “productive”.
  1. Do not spend more time with toxic people then you choose to: we all have people in our lives, whether friends, colleagues or family members who are difficult to be around. They make us feel upset, drained, and negative. Sometimes I refer to these people as ‘energy vampires’- after visiting them, you feel depleted and depressed.  These are people that you need to set boundaries with, regardless of any guilt they may throw your way.  Toni Bernhard writes about having a revelation that she was not personally responsible for the behaviour of other people.  She practices equanimity about the fact that other people often don’t act the way we want them to, which I think is a valuable insight for people living with chronic illness.
  1. Do not push through: at the beginning of my illness journey, I never let myself “give in” to the fatigue or pain I was experiencing. I would stay out at a cafe all afternoon, even if I started to go cross-eyed with exhaustion, rather than surrender to my limitations.  Now I understand that this not-to-do actually helps me transcend my limitations, rather than surrender to them. After taking a Mindfulness Based Stress Reduction class, I learned to develop a different relationship with my body.  I try to work with my body, rather than in spite of it. For example, I really wanted to write this blog post today, but I am especially fatigued after a bad night’s sleep.  So instead, I am writing one bullet point, then resting, then writing etc.  You have probably had ‘pacing’ recommended to you before.  Personally, I don’t usually follow a rigid pacing schedule, like 15 minutes work, 15 minutes rest, etc.  Instead, I regularly check in with my body and accommodate accordingly.  To me, for pacing to be successful, it needs to be about more than scheduling; it’s about building a better relationship with your body.
  1. Do not add judgment of yourself on top of the challenges you already face: most of us are our own worst critics. We often set impossible standards for ourselves.  Even in the face of the challenges of chronic illness, I still think that I should be more positive, zen, strong, or competent, among other things.  When I get upset about something, I’m good at piling more judgment on top of myself for even being upset in the first place.  By being more aware of my inner dialogue, I’m getting better at recognizing when I do to this.  When I catch myself, I try to say ‘this extra judgment isn’t helping me deal with the real problem here’.  I take a deep breath and begin again.
  1. Do not say “I should” or “I have to” or “I must” to yourself: These types of statements set impossible standards for yourself, and are unrealistic given the constant flux of symptoms that characterize chronic illness. I’ve learned it’s important to hold intentions about what I would like to cultivate more of in my life.  Intentions are always present.  We always hold them in this moment. Goals about what you should/must/have to always do exist in the future. When you live with chronic illness you have so little control over what tomorrow will look like. ‘I should’ statements presume an all or nothing definition of success. These types of statements set yourself up for failure. It’s more helpful to say “I’m going to try my best to do __”. Hold this as an intention, even through set-backs.

Balancing Dreams Against Working Within the Status Quo

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Balancing Dreams Against Working Within the Status Quo

The last year has been a slow but definite change in my illness and my outlook. At the end of 2015 I was managing my fibromyalgia, more or less, and struggling through a part time social work degree. This was part of my retraining after diagnosis, into a career I hoped I could pursue part time. Over the holidays I got a bad cold. Luckily, the first virus since my illness onset 5 years earlier. I recovered from the runny nose and coughing, but not from the constant fatigue. I had the worst brain fog I’d ever had, with trouble even seeing what was in front of me. I developed anxiety about being caught out during a brain fog flare, after becoming disoriented in a store and having to leave without paying. It’s scary to lose the ability to find an item in a store, figure out how to pay for it (without forgetting your pin code) and walk home.

Around this time I was supposed to be finding a practicum placement for my degree program. There was no way I was going to be able to finish the winter 2016 term, never mind commit to functioning 15 hours a week during specific hours. So I put school on hold. I worried I was back to having my life on hold.

Overtime I started blogging more again, connecting with other people living with chronic illness on social media. I took a health coaching course. I’ve considered many different ideas about how I could work from home. Recently it occurred to me that, with my prior experience in Korea, I could take a course to tutor English as a second language one on one, at my set hours, or online.

I’ve lost about five years of work experience and all my confidence in anything professional. It’s a combination of the uncertainty of my condition, of the horrible experience of slowly losing my functioning, and the fear of going back to the worst moments of my illness. How can I make a commitment I don’t know I can keep? Maybe it’s the fact I am a people pleaser and a perfectionist, but the prospect of that happening makes me very apprehensive.

Then there is the whole issues of expectations. In my life Before Fibro (B.F.) I was a graduate student, planning on working in international health projects as an applied anthropologist (like HIV/AIDS or malaria programs). I travelled a lot and wanted to live all over the world. Now, that’s never gonna happen. It’s something I am sad about at times, but I have mostly reconciled myself to. I try to move forward and plan new plans.

But I can hear the voices of a few family members who would not be happy about my ESL tutor plans. “You’re settling, and not living up to your potential” is what they’d say. Am I sure I’ve tried every avenue to make make my dreams a reality? Is it ever right to turn your back on your passions? Am I just rationalizing giving up as ‘acceptance’? Perhaps.

There is something liberating about finding a pathway that I CAN follow. I can volunteer tutor. Take an online course. Apply to online positions that interest me or advertise and accept students that I want to work with. Make my own schedule. Every other career option seems fraught with unknowns, like placement requirements I may not be able to fulfill.

There is the appeal of tangible accomplishment as you see students learn. There is very little that is tangible about chronic illness. Improvements in health fluctuate. Hobbies can definitely help to fill this void. I find doing calligraphy gives me a sense of accomplishment. Blogging too. But I still feel a gap that I want to fill, a need to contribute beyond my own personal life to improve someone else’s. I’m excited to volunteer tutor for the library, two hours a week. I think that’s manageable. Maybe it won’t go beyond that, into work. That would be ok too.

I’d also like to be able to contribute financially to my family, even if it’s only enough for a vacation. This is a side benefit though and not one I want to count on. Living as a couple on one income is a stretch but we’re fortunate we are able to. I’m just not able to work enough to make a big difference. But I would be really excited to earn a paycheck.

After beginning this post I came across a quote by J.K. Rowling (Albus Dumbledore):

“It does not do to dwell on dreams and forget to live” – J.K. Rowling

Living with chronic illness has changed my relationship to my dreams. I want to live now, based on my current abilities, rather then wait on dreams.

Can Antioxidants Help Treat Chronic Illnesses Like Fibromyalgia?

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 can antioxidants help treat chronic illnesses like fibromyalgia?

By now, who hasn’t heard that they should be eating antioxidants?  But have you got the message about why you should be anti oxidants in the first place, especially if you have a chronic illness?

Dr. William Sears explains “Our bodies are oxygen-burning machines.  Every minute, countless biochemical reactions through the body generate exhausts called oxidants, or free radicals” (Prime Time Health p. 20).  These particles damage our DNA, cells and tissues through a process known as oxidation.  You’ve actually seen this happen – probably without knowing it – when a cut piece of apple or avocado browns over time.  Or, when your aging car or bicycle rusts. Free radicals pull electrons from nearby molecules, altering their structure and function, and damaging tissues at the biochemical level. In the body, this ‘rusting’ leads to age-related changes like hardened arteries, stiff joints and wrinkled skin.  Chronic oxidation activates inflammation pathways at the cellular level.  In turn, chronic inflammation can lead to chronic disease, including cancer and arthritis, among many other conditions.

The body naturally produces antioxidants – substances that bind to free radicals, effectively neutralizing them. Many vitamins, like C and E, as well as minerals, like selenium, act as antioxidants. The antioxidant defence system is a key part of the body’s immune system, acting to protect our cells and tissues. “But when the body builds up more oxidants than antioxidants,” explains Dr. Sears, “the garbage backs up and increases the wear and tear on the tissues” (Prime Time Health, p. 21).

Increased oxidation is part of many chronic illnesses.  Rheumatoid arthritis patients, for example, have increased levels of free radicals but decreased levels of antioxidants that “may contribute to tissue damage” and the chronic nature of the illness (Mateen et al., 2016).  People living with fibromyalgia also have an imbalance of increased free radicals and decreased antioxidants (Cordero et al., 2010). This imbalance is called oxidative stress.

Can increasing your intake of anti-oxidants treat chronic conditions? The complex interaction between oxidation, inflammation, immune activation and genetic expression means that we don’t fully have the answer to that question yet. What we do know is that antioxidants are an integral part of maintaining overall health. When you live with a chronic condition, doing your best to maintain your general health can take the stress off your body’s healing mechanisms so that your body’s energy can be focused on living as well as possible with your chronic illness. For example, we know that eating sugary and fatty foods increases oxidative stress, which in turn, increases inflammation. In a vicious cycle, this exacerbates conditions like diabetes or arthritis. However, if you include more fruits, veggies, whole grains and lean proteins, you can reduce oxidative stress and reduce inflammation.

By now you are probably anti all oxidants and wondering what you can do to boost your antioxidant defense system. The best source of anti-oxidants comes from foods rich in “phytonutrients” – vitamins, minerals and other healthful substances found in plants. The richest sources of phytonutrients are berries, dark leafy greens, colourful veggies, dark chocolate and green tea. Nuts, seeds, legumes and whole grains are also valuable sources of antioxidants.

The easiest way to increase your antioxidant intake is to make a smoothie part of your daily routine. Try to go organic where possible, because organic fruits and veggies contain higher levels of phytonutrients.

My favourite morning smoothie (serves 1):

  • 1/2 a cup mixed berries
  • 1 banana
  • 1/2 cup kale (you can’t taste it, I promise!)
  • 1 tablespoon flax
  • optional: 3-5 cherries for additional phytonutrient boost
  • optional: 1/3 cup oatmeal for increased fibre and serving of whole grains,
  • optional: 1 scoop of no-flavour protein powder (I use whey) or 2-3 tbsp hemp hearts for vegan protein
  • optional: 1/3 cup coconut milk for healthy fat

References:

Cordero, M. et al. (2010). Oxidative Stress and Mitochondrial Dysfunction in Fibromyalgia. Neuroendocrinology Letters, 31(2), pp. 101-105.

Mateen S, Moin S, Khan AQ, Zafar A, Fatima N (2016) Increased Reactive Oxygen Species Formation and Oxidative Stress in Rheumatoid Arthritis. PLoS ONE 11(4): e0152925. doi:10.1371/journal.pone.0152925

Sears, W., & Sears, M. (2010). Prime-time health: A scientifically proven plan for feeling young and living longer. New York: Little, Brown and Co.

Shared on Chronic Friday Linkup and Fibro Blogger Directory’s Fibro Friday Linkup

Self-Care as a Mindset: What I Learned at the #SelfCareMvmt Summit

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SelfCare Mindset

 

On Monday evening I attended the first ever Self-Care Movement Summit in Toronto, Canada. We arrived at the Mars building, a downtown hub of innovative tech and entrepreneurial companies, to register and enjoy catered refreshments, before taking our seats in the auditorium. The audience, of around 250 people, represented the diversity of the people who live with chronic illness – young and old, with visible and invisible chronic conditions. We were there to listen to a series of panelists and speakers talk about their personal or professional experiences using self-care strategies to meet the everyday challenges of life with chronic illness. As these informative and engaging speakers discussed the multifaceted aspects of this topic, I came to new realization about the meaning of self-care. Self-care is both a set of practical strategies, and a mindset, a particular way of understanding and relating to the activities of everyday life.

The core of the self-care mindset that emerged throughout the evening was acceptance of life with chronic illness. As Margaret Trudeau, the keynote speaker, summed up – coming to the realization that “this is the hand you’ve been dealt and the hand you have to play”. But finding acceptance is a long process. Margaret Trudeau shared her health journey living with bipolar disorder and how she experienced the five stages of grief after her diagnosis – more than once. She said that, in her experience, the first step towards accepting life with chronic illness is forgiving yourself. Your illness is not your fault. During the patient panel, Kirstie Shultz discussed self-care as being kind to yourself, every day. In her presentation on mindfulness practice, Dr. Lucinda Sykes talked about the importance of observing and learning from our daily experiences, without judging ourselves. Overall, humor was woven through many of the talks as a way to live positively with chronic illness. For example, John Bradley named his book on Crohn’s disease the Foul Bowel. Kristen Coppens described her eight illness as a “chronic party”. These insights into the self-care mindset are about relating to ourselves in a new way as we address the daily challenges of life with chronic illness, in a compassionate, forgiving, non-judgmental, humorous way.

The second theme that emerged about self-care as a mindset was finding balance in the activities of everyday life. In the patient panel, Marinette Laureano talked about a holistic approach to her self-care practice, by balancing her faith, family, friends and fun in her daily life. Kirstie Shultz described the zero-sum game of fatigue and chronic illness – working to find the balance between activity and rest. Kristen Coppens discussed the challenges of balancing work and illness. In his talk on this subject, John Bradley discussed achieving success against your own measures, rather than letting your goals be defined by the external world. He described his own experience working with chronic illness, and how he found balance by trying to “be the tortoise and not the hare” in achieving work goals. Balance as part of the self-care mindset is more of an intention rather than a constant state, a learning process of respecting the limitations of chronic illness while participating in the daily activities of life.

The third aspect of the self-care mindset is becoming an advocate in your community. Robert Hawke reminded us that, as patients, we are experts with our own wisdom about our health. Dr. Lucinda Sykes discussed mindfulness as a practice of developing insight about ourselves and cultivating the collective wisdom of people living with chronic illness. She said the summit was a celebration of human potential and our heritage of resiliency down the generations. Grace Soyao, of Self-Care Catalysts, explained that the voices of people living with chronic illness need to be heard and that we have the knowledge to drive change. Change like patient-centred care in the healthcare system, increasing research about chronic illness and reducing stigma about living with chronic mental or physical illness.  It can be hard to share our illness stories. Robert Hawke noted that we prefer to share our shiny selves with the world, rather than our difficulties and challenges. But when we do share our stories and everyday self-care strategies with each other, as Filomena Servidio-Italiano said, “The ordinary becomes extraordinary.” As part of the self-care mindset, advocacy is about self-empowerment, connection with the chronic illness community and society at large, and celebrating the greatness in ordinary accomplishments that we face every day.

Acceptance. Balance. Advocacy. Connection. These are all critical elements of self-care as a mindset and a way of relating to the ordinary activities of daily life with chronic illness. We can learn to pace our efforts, to eat nutritiously, to exercise more, to use practical self-care strategies. These are important wellness tools. But underneath, cultivating a self-care mindset is the key to improving our health and wellbeing as we live with chronic illness.

I want to thank Self-Care Catalysts and Health Storylines for an inspiring and informative evening. I’m looking forward to participating in advocating for self-care as a movement!

 

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

Why Whole Foods are the Only-One-Size-Fits-All Diet

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Photo by viteez

Nutrition is critical for spoonies (people living with chronic illness). For anyone coping with chronic illness, sustained energy is a significant challenge. Balancing macronutrients – carbs, protein and fat – along with factors such as fiber and sugar, is important for preventing spikes in blood sugar that inevitably lead to energy crashes. Maximizing micronutrients (vitamins and minerals) is also key healthy eating. Adequate intake of nutrients like Iron and B vitamins have been linked to improved energy levels, while others like Vitamin D and Magnesium help reduce chronic pain. In addition, chronic illnesses like fibromyalgia have been linked to high rates of oxidation, so eating antioxidants is important to counteract these effects. Eating fish rich in omega-3 or certain phytonutrients in veggies can have powerful anti-inflammatory effects.

In a previous post, I wrote about why many researchers argue that personalized diets are the future of nutrition, rather than broad dietary recommendations or one-size-fits-all diets. Individual variability – genetics, physical makeup (weight, blood pressure, etc.), lifestyle and gut microbiome (unique gut bacteria in your digestive tract) – are all factors that can determine your unique response to different foods.

Here is why the whole food diet is the only one-size-fits-all diet. There are only benefits to eating whole foods. Whole foods are associated with a lower risk of disease, including cardiovascular, cancer and type II diabetes. They contain more fiber, which is important for lower blood sugar levels, low cholesterol, colon health, a healthy microbiome, and feeling full, among many other benefits. Whole plant foods contain vitamins and minerals, as well as phytonutrients, which are natural compounds that improve health by acting as antioxidants, anti-inflammatories, antimicrobial and anti-cancer agents. Whole foods enable your body to benefit from the synergy of all their nutrients acting together. Research shows that single vitamins and minerals are not as successful as the combination and interaction of multiple nutrients together.

In contrast, processed foods offer few health rewards and many drawbacks. Processed foods are stripped of their nutrients during refinement. Even if the product is fortified with vitamins or minerals, there is no way to manufacture the thousands of vitamins, minerals and phytonutrients in whole foods or reproduce the synergy effects they have in the body. Processed foods tend to be calorie dense and nutrient poor, which is not a good recipe for maintaining healthy weight. The lack of satiating whole grains, protein and fiber means you get hungrier sooner.

Food additives and preservatives potentially have a number of negative health impacts throughout the body, including on the brain, and digestive system. Other common ingredients like high fructose corn syrup, or hydrogenated oils and trans-fats are best avoided. High fructose corn syrup can lead to high blood sugar, while trans-fats lead to high cholesterol.

Salt, sugar and fat are the protagonists of the processed food industry.  They are addictive. They are added at just the right amounts to make you crave more processed products. And they are terrible for your health. Processed foods have high levels of unrefined carbohydrates that lead to high blood sugar. Over time, this can lead to insulin resistance and diabetes. Processed foods are often high in unhealthy fats (hydrogenated and excess saturated fats) that can raise cholesterol and lead to cardiovascular disease. Both sugar and unhealthy fats contribute to inflammation. Finally, high salt is the third unhealthy ingredient, which can raise blood pressure and contribute to heart disease.

Basically, it’s just better to just not go there.

Basically, it’s better to just eat real foods! Here are some resources to get started: