The Science of Savoring Simple Pleasures: How Mindfulness of Good Moments can Reduce Stress and Improve Wellbeing in Chronic Illness

Does the following description capture what goes on in your mind as you go about your day?

Your frequently scan your body to assess changing pain levels, fatigue, body temperature, medication side effects, and mental function. You monitor your changing environment – from noise, lights, smells, the distance you have to travel, to finding a comfortable position to sit in, among many other features. Then you try to calculate how you should modify your plans based on all of these factors, like a computer running a complex algorithm.

It’s exhausting. In this state, your brain is constantly on red alert and your nervous system is tautly wound, waiting for the next threat or crisis to jump out and surprise you. And for good reason, since, if you have a chronic condition, your body is constantly assaulted by difficult and unpredictable symptoms, which in turn make it challenging to navigate different environments. However, when the brain and nervous system are frequently in crisis mode, they trigger a flood of stress hormones, including cortisol and norepinephrine. This reaction is called the fight or flight mode and it primes your body to cope with dangerous situations. Cortisol and norepinephrine cause a cascade of body wide changes – fast pulse, shallow breathing, racing thoughts, sticky palms, and tensed muscles. Studies have found that people living with fibromyalgia have a hyperactive fight or flight response, which is correlated with pain levels.

Being in a constant state of stress causes your mental, emotional and physical well-being to suffer. In fact, the frequent presence of cortisol actually sensitizes the region of the brain that assesses threat levels to stressors. This region is called the amygdala, and when it becomes sensitized to cortisol, it puts our central nervous system on a hairtrigger, ready to overreact to nonthreatening situations. Stress worsens pain levels, fatigue, anxiety and depression.

We want our brain to accurately assess potential risks and opportunities, to be vigilant but not hypervigilant. So how can we calm a stressed out nervous system? One promising avenue advocated by Rick Hanson is through a set of mindfulness practices that intentionally focus on sensory pleasures and good moments that we typically disregard. Instead of only scanning for negatives, like pain and fatigue, we do the opposite – deliberately bringing our attention to what feels good and enjoyable throughout the day.

Mindfulness means paying attention, on purpose, to the present moment, with acceptance. Mindfulness meditation is often taught as a brain exercise, in which you learn to practice concentrating on the present moment, one breath at a time. When your mind inevitably wanders off, you bring it back to the present moment, over and over. Gradually you get better at staying in the here and now for longer stretches of time. Just as importantly, you learn about the types of worries that draw your attention, like a moth to a flame. When you know more about the underlying problems that bother you, you can take better care of yourself while you cope with those challenges.

The point of these exercises is not to disregard all of the information your senses are communicating to you about how you’re doing. For example, body awareness is important for pacing when you live with chronic pain, so that you don’t overdo an activity and trigger a flareup. However, being mindfully aware is different than being hypervigilant. Life can often be easier to handle in the here and now. Sayings like “one problem at a time” and “we’ll cross that bridge when we get there” are good reminders about this simple truth. Most anxiety comes from ruminating on the past or worrying about the future.

It’s all too easy for me to jump from noticing that my neck is sore when I wake up to worrying that I won’t be able to do any computer work next two days and all of my work will have to be put on hold. That might happen, but then again it may not happen. It’s much more productive for me to do what I can in the moment, like taking a warm shower or gently stretching my neck than imagining all of the worst-case scenarios. Unfortunately, if you’re like me, simply resolving not to jump to conclusions won’t stop your mind from going ahead and jumping ahead anyway. Staying present takes practice.

Mindfulness also opens us up to the sensory experiences and good moments that we typically disregard while we go around on autopilot. Present moment awareness is a natural state of being that we’ve all experienced, perhaps while watching a beautiful sunset, savouring a delicious meal or sharing a poignant moment with a loved one. Often we wish we could be more present, more of the time. Mindfulness makes us feel like we are living our lives to the fullest.

Rick Hanson explains that we can turn these simple pleasures into informal mindfulness practices, by stopping briefly several times during the day. He calls these practices “taking in the good”. The first step is to notice a positive moment – essentially, stop and smell the roses. For example, stopping to recognize a sensory experience like taking your first step of coffee in the morning, enjoying a good hug, or gazing out the window. The moment doesn’t have to be perfect – you’re not waiting for pure bliss, just a moment of appreciation. Or it could take the form of a good feeling, like a small (or big) accomplishment, sharing a laugh with a loved one or playing with your pet. These moments are available to us every day but we normally forget them soon after they happen because, as Hanson says, our brains are “Teflon for good but Velcro for bad.”

The second step is to stay with the sense of enjoyment or appreciation for at least 12 seconds. Mindfully return your attention to your senses if it wanders off. I find it particularly helpful to notice where in my body I have the felt sense of enjoyment, such as a warm feeling in the heart region or a release of tension the neck muscles. Finally, intentionally decide to absorb this positive experience. You could imagine breathing in the good sensations or feelings that accompanied the experience. Hanson suggests visualizing putting the experience inside a box or imagining a warm glow spreading through your chest. I like the idea of imagining stringing a pearl onto a strand, with each one representing recent good experiences.

These practices may sound new age-y or silly but there is research behind them to show how they can change the brain and enhance a sense of overall well-being. The brain is comprised of billions of neuron cells, which signal each other across small gaps called synapses. When we repeatedly engage a neural circuit, it changes the brain: “active synapses become more sensitive, new synapses start growing within minutes, busy regions get more blood since they need more oxygen… [and] the genes inside neurons turn on and off (Hanson).” In contrast, less active neural circuits begin to wither. Intentionally focusing on positive experiences can lower the activity of brain regions that trigger stress and increase the activity of the nervous system associated with well-being. You can ‘use the mind to build the brain’, which is a powerful tool for coping better with chronic illness challenges. Personally, I have found a greater sense of enjoyment in the everyday since I began ‘taking in the good’.

First published in UK Fibro Magazine

Hanson, Rick. 2013. Hardwiring happiness: the new brain science of contentment calm, and confidence. Harmony: NY, United States.

Martinez-Martinez LA, Mora T, Vargas A, et al. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J Clinical Rheumatol 2014;20:14650

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A Christmas Catastrophe: How Getting Lost in the Medical System Strains My Sanity And Hurts My Care

chronic christmas (1)

A day in the life of an angry advocate:

I barely slept last night because of endometriosis cramps. They assaulted me early this month and that’ll makes Christmas harder thanks to the painsomnia.

I called to cancel an appointment with my GP today as result. Brain fog and pain flares don’t result in productive meetings. We were supposed to talk about lowering and re-organizing my medications because I am about to start fertility treatments. I want to find the safest possible combination at the lowest reasonable dose.

Shouldn’t this be done by my pain specialist?

You’d think. But I get shuffled between my GP, OB, Pain specialist and fertility doctors instead. No one seems to want to pre-plan with me. I still don’t know who to call or what I would do if my pain spiked or my insomnia made me entirely sleepless during pregnancy.

My pain specialist has been busy focused on nerve blocks vs nerve ablations for my pelvic pain. That’s important. But he keeps deferring the medication chat until the next appointment. Which is always months away.

He’s too busy.

To make matters better, I’m playing broken telephone with the pain clinic office. They gave me an appointment time to follow up from an October nerve procedure but apparently never scheduled it. When I called to confirm and found there was no appointment, they told me the next availability was in six weeks. Great.

Then I realized not only would the medication chat happen too late, but if I waited to book my next nerve block until the Jan 21 appointment , then the procedure would have to wait until the spring because his schedule would already be full by then.

So I talked to the pain nurse earlier this week and asked to get the nerve block on the books asap. Two days later I got a call saying a completely different procedure (nerve ablation) was booked for Jan 22.

Are you for real?!? So I wrote an email to him sharing the results of the last procedure and all of my questions and thoughts, since that’s the only follow up from my surgery I’m apparently going to get.

I called my OB-GYN for help. She told me to contact Mother Risk (“an  information service providing up-to-date information about the risk and safety of medications and other exposures during pregnancy and breastfeeding”).

I’ve already done that. 3 times. But I have yet to sit down with a doctor to discuss their advice.

MotherRisk says it’s unlikely my medications will cause birth defects. As a result – and I’m not making this up-  my OBGYN and nurse practitioner asked, in that case, WHY I WOULD WANT TO TRY LOWERING MY MEDICATIONS?

Are you f&*!ing kidding me?

Because the less I take the better? Because if one is slightly safer than another, I’d rather take more of that and less of the other? Also, similar organizations to Mother Risk in the US and UK do identify increased risks with two of my medications!

To top things off- Surprise!- my period came two weeks early. I’m having a normal 30 day cycle for the first time in a year. My usual 44 day cycle is how I got my PCOS diagnosis. So now I am beginning fertility drugs just in time for Christmas, with all the joyous side effects.

So basically, HO.HO. HO.

Humbug.

Becoming the Author of Your Own Story: How Sharing Your Health Journey Can Improve Your Emotional Wellbeing & Increase Resilience

Connecting with others by sharing your story online is a powerful way to begin meeting your needs for emotional well-being. In this piece, I want to share how blogging and social media have helped me to find a sense of purpose, belonging and connectedness.

Becoming the Author of Your Own Story

The onset of my fibromyalgia came on gradually, as my symptoms snowballed over an 18 month period. I tried everything to accommodate my pain and fatigue so that I could continue my graduate school program, but I just couldn’t keep up. After I received my diagnosis, I finished up the term, and officially withdrew from school. I woke up the first day after submitting my final term paper, and felt like I was standing on the edge of a cliff – I was 26 and my career was over before it had begun.

But my immediate problem wasn’t that my future remained uncertain – it was that I had no idea how to fill my days. I had no routine, no tasks to accomplish, and no friends or colleagues to share my experiences with. I was alone all day, until my husband came home from work. Anyone that I wanted to socialize with (when I was up for going out) could only meet me in the evenings, after the work day.

I struggled to fill all these hours on my own. I remember waking up late one morning and thinking “good, now there’s less time to wait until my husband comes home.” In retrospect, I think that says a lot about how I saw my day: as time wasted.

I became painfully aware of what I was missing in life. You need to make connections with people beyond yourself. You need to feel like you’re contributing to the world around you. All of those things felt impossible when I was stuck at home by myself. Psychologists refer to this as self-determination theory –  that all people have three basic psychological needs for emotional well-being (Very Well Mind):

  • autonomy: being the author of your own story, making your own choices
  • competence: having a sense of accomplishment, learning new skills
  • relatedness: feeling connection and attachment to other people

Fibromyalgia can obstruct our ability to meet these needs. We lose our ability to work as hard as we did before, which limits professional accomplishment and a sense of competency. Unpredictable symptoms dictate daily life and can take away any feeling of control over your life, which is necessary for autonomy. Being stuck at home alone and/or less able to socialize can lead to isolation and a loss of connectedness.

But it doesn’t have to stay that way. Over time, I learned that connecting with others by sharing my story online is a powerful way to begin meeting these needs for emotional well-being. In fact, research demonstrates that “autobiographical storytelling” can have “substantial impacts on psychological and physical health even months after” (Hamby, 2013). In this piece, I want to share how blogging and social media have helped me to find a sense of purpose, belonging and connectedness.

Connection: When Social Media is a Blessing and not a Curse

One day shortly after my diagnosis, as I was googling strange fibromyalgia symptoms (which should be listed as a hobby for people with chronic illness), I stumbled on a list of top fibromyalgia blogs. Clicking through them, I felt a sense of connection with other people who understood what I was going through. It was validating to hear about other people who shared my experiences.

By following these blogs, I learned about tips and tricks for everyday life with fibro, caught up with research into the condition, and most importantly benefited from the wisdom of other people who were open and vulnerable enough to talk about their journey through grief, acceptance, identity, self-care, faith and all the other challenges of living with fibromyalgia.

Eventually, I decided to start my own blog. I didn’t have a lot of followers, but that wasn’t really the point. I interacted with other bloggers, and it was in those reciprocal relationships of reading and sharing that I found a sense of connection.

Social media gets a bad rap because of trolling, scheming Russian bots, and creating the false image of a perfect life. But your faith in humanity can be restored by the kindness and support chronic illness worriers show each other on social media – in Twitter chats like #SpoonieSpeak and #SpoonieChat, on closed Facebook support groups and on fibromyalgia forums (for a detailed list: https://goo.gl/EJLvZT). Social media can help people with fibromyalgia meet their psychological need for connection and relatedness.

Of course, spending too much time on social media can be overwhelming. If you are going through a difficult time, the online community can provide a lot of support, but reading about other people’s problems can be too much sometimes. It’s important to be kind to yourself and unplug when you need to!

Reflecting and Expressing: The Inner Journey of Writing Your Story

Putting your health journey into words, whether on a blog, on Twitter or in a private community, is a powerful act of self-care. I find that putting my story into words helps me to identify the key lessons I’ve learned, to reflect on what’s most important to me and to find my truth. Getting it out there is cathartic and reading back my own words gives me a new perspective on what I’ve gone through. Even in writing this piece I see how far I’ve come since my diagnosis, and I feel proud of that.

When I first started my blog, I didn’t know what to share. I wasn’t sure that I had anything important to say! I wrote about everything from book reviews, new recipes, research on fibromyalgia and bad doctor’s appointments. Even though I was all over the place, it gave me a sense of accomplishment to publish a post.

Over time I narrowed down my writing interests and decided my blog’s focus would be about navigating the challenges of fibromyalgia using self-care skills. I became more comfortable being open about my feelings and experiences. This can apply to vlogging, tweeting and other forms of social media too. In other words, I found my voice. This process was an inner journey, and it deepened my relationship with myself. I feel much more like the author of my own story, and am closer to meeting the psychological need for autonomy then in the early days of living with fibro.

The Power of Words: When Your Story Helps Others, It Helps You

Finally, I learned that sharing my story and the insights I’ve gained from my experiences can help others. Nothing brightens my day more than a comment from a reader that something I’ve written has resonated with them, validated their own experiences, or given them a new idea or approach for tackling a problem. Hamby (2013) explains that your “resilience is strengthened by recognizing that we are all experts in our own lives and we all something to share with others.”

One of things I enjoy most about Twitter are the random acts of kindness from users sending positive thoughts, gentle hugs, and spoons to a member of the fibromyalgia community who is having a bad day. This was an unexpected and lovely benefit that began with sharing my story online. Being able to provide connection and support to others can give you a sense of contributing to the world beyond yourself. It’s an important sense of purpose that many of us find missing developing this difficult condition. In this way, blogging and social media can help people living with fibromyalgia meet their psychological need for competency – a feeling of accomplishment and contribution beyond ourselves. While sharing your story doesn’t take your pain or fatigue away, in my experience it can start you on the road to improving your emotional well-being despite the challenges of living with fibromyalgia.

This article originally appeared in the July issue of UK Fibromyalgia Magazine.

References

Hamby, Sherry. (2013). ‘Resilience and… 4 Benefits to Sharing Your Story.’ Psychology Today. Retrieved 21 May 2018 from https://goo.gl/f5eiRm

Very Well Mind. (2017). ‘What is Self-Determination Theory?’ Retrieved 21 May 2018 from https://goo.gl/cQ8mzy

Why It’s Okay Not To Work When You Live with Chronic Illness

Having an illness like fibromyalgia is not a reflection of your character. No one works harder than someone with a chronic illness – every day is a struggle to work through symptoms and do your absolute best to be where you’re needed.

Why It's Okay Not to Work When You Live With Chronic Illness

The biggest change in my life that followed my fibromyalgia diagnosis was leaving my career because I just physically could not keep up any longer with the demands of the job. I’ve never felt more conflicted about making a decision. On the one hand I felt relief – it was incredibly stressful to constantly fail to meet expectations while working harder than ever before. On the other hand, I felt like I was losing a core part of my identity. After all, a career is not just what someone does between 9 to 5 – it’s often how a person understands and defines themselves.

Have you ever noticed that the first question someone asks you after being introduced is “so, what do you do for a living?” It’s common to answer the “what do you do for a living” question by saying “I am a ___“.   In our society, an occupation is not just what you do but who you are.

We place a moral value on being hard-working – putting in daily effort to provide for your family and contribute to your community – as long as you get paid for it. I still dread meeting new people and having to answer the what do you do question. It’s hard not to internalize the negative judgments about people who don’t work – usually variations on ‘they’re lazy, incompetent, and a burden to society.’ In Canada, where I live:

  • 14% of people with fibromyalgia reported that they were permanently unable to work (compared to 2% of the general public);
  • 43% had annual personal income less than $15,000 [poverty line] (compared to 29 per cent of the general public) (Parlor).

“Our society is largely driven by money, profit, and earning power, and this makes our professions a major part of how we identify.  So if you lose your job, you can easily lose your identity, too” (Norris, 2016). I felt so disoriented in the months after I left my job. It was hard to figure out who I was now and how I fit in.

As I began to engage online  with other people living with chronic illnesses and disabilities, I learned more about how to understand work and disability in our society, and what that meant for me as I transitioned to staying at home.

Definition of Disability:

Initially, the label of ‘disability’ did not resonate with me. I associated it with a permanent condition like vision-loss rather than a fluctuating illness like fibromyalgia. But once I learned the definition of disability, it became clear how it applied to my situation. According to the American Disability Association, a disability is a physical or mental impairment that substantially limits major life activities (Blahovec).

Fibromyalgia impairs my abilities by causing pain, fatigue and brain fog. The lack of truly flexible accommodation in campuses/workplaces, like fixed work hours, deadlines and location, combined with stigma about invisible illnesses/disability, prevents my full participation in society.

Is Disability an Individual Problem?

The most common way we look at disability in our society is through the lens of ‘normal versus abnormal’. A person with a disability is different from ‘what is normal’ because of their limitations. This understanding of disability is often called the medical model – disability is an abnormal, medical condition affecting an individual (Scope).

We often hold up ‘inspirational’ examples of individuals with disabilities who ‘overcome’ their limitations by ‘fighting through’ the challenges they face, all the while having a good attitude (Abilities). The flipside of this is if you go about your business, pacing yourself within your limitations, you may be judged for “playing the victim” by “giving in” to your disability!

Disability as a Social Issue

If we were able to create an inclusive society, which removed the barriers that restrict life choices for people with disabilities, then everyone could participate equally in our communities. “The social model of disability says that disability is caused by the way society is organized, rather than by a person’s impairment or difference” (Scope). Barriers can include attitudes (stigma, discrimination), policies (workplace accommodations) and physical design (accessible entrances, transportation). For chronic illness advocates, joining the disability movement can help to “advance not only the goals for people with similar challenges, but for the whole disability movement” (Blahovec).

After I learned about the medical model versus the social model of disability, I felt like a light bulb went on inside my head. Here’s what conversations around disability taught me about living with fibromyalgia, and I think applies to anyone who needs accommodations at work, or no longer works:

  • Having an illness like fibromyalgia is not a reflection of your character. No one works harder than someone with a chronic illness – every day is a struggle to work through symptoms and do your absolute best to be where you’re needed.
  • News flash for your inner critic – not being able to participate fully in work/school is as much about ablest barriers as it is about physical limitations, and neither of those things is your fault!
  • If your contribution to the world is not in the form of paid employment, it is no less valuable than anyone else’s. The world is a better place because you’re in it!
  • Finding your identity outside of career makes you a more well-rounded person, whether it’s in relationships (like being a parent) or passion projects (creative expression, writing/advocacy).
  • Pacing your activities within your limits is working smarter. There is no need to “overcome” or be “inspirational” – just living your life the best way you can is all you need to do.
  • Having an illness or disability is pretty commonplace. Living with fibromyalgia is not your individual problem, but just another thread in the fabric of the human experience overall (we need to normalize life with fibromyalgia rather than pathologize it!)

(This article originally appeared in the June 2018 edition of UK Fibromyalgia Magazine)

Resources

Abilities (Disability as Inspiration: Can Greater Exposure Overcome this Phenomenon?)

Sarah Blahovec (HuffPost Blog: I have a Chronic Illness. Here’s Why I Embrace the Label ‘Disabled’)

International Paralympic Committee (UN Convention on the RIghts of Persons with Disability)

Margaret Parlor (Canadian Women’s Health Network: Understanding Fibromyalgia)

Scope (The Social Model of Disability)

Mindfulness Meditation for Fibromyalgia and Chronic Pain: Does It Really Work?

Meditation for Fibromyalgia & Pain: Does it Really Work?

Meditation is a way to practice being present. According to Jon Kabat-Zinn, a pioneer in the field of meditation and medicine, meditation is a practice of cultivating mindfulness, which means “paying attention, on purpose, in the present moment, non-judgmentally.”

For this post, I wanted to look at some recent research on mindfulness meditation programs involving participants with chronic pain. The purpose of these studies was to assess whether mindfulness can lower pain, reduce depression, and improve quality of life.

The Mindfulness Based Stress Reduction (MBSR) program created by Jon Kabat-Zinn to teach mindfulness meditation to patients had demonstrated remarkable benefits for reducing chronic pain as well as anxiety and depression. I personally have found that this approach has helped me to reduce my anxiety, improve my quality of life, and manage my pain. The MBSR intervention is structured so that participants attend weekly sessions where they learn “different types of formal mindfulness practice, mindful awareness during yoga postures, and mindfulness during stressful situations and social interactions” (p. 227, Grossman et al., 2007).

Researchers investigated the effect of MBSR programs for participants with mixed chronic pain conditions and the significance of at-home practice for pain management. The study measured results in terms of bodily pain, quality of life and psychological symptoms for each chronic pain condition (neck/back pain, arthritis, fibromyalgia, chronic headache, and two or more coexisting conditions). The researchers discovered that the degree of benefit of participating in mindfulness programs varied depending on the chronic pain condition, but that overall improvements were seen in almost every category (Rosenzweig et al., 2010).

Rosenzweig (2010) suggests different possible causes for how meditation practice can improve chronic pain conditions:

  • First of all, nervous system pathways to parts of the brain associated with stress can be inhibited through mindfulness practice.
  • Secondly, reducing psychological symptoms like anxiety and depression can help because those symptoms can amplify the perception of pain.
  • Third, mindfulness practice can help improve emotional regulation and coping skills in stressful situations.
  • Fourth, mindfulness contributes physical self-awareness which could help lead to better self-care.
  • Finally, mindfulness can help activate nervous system function associated with rest and calm (parasympathetic nervous system), which in turn can lead to deep muscle relaxation that may reduce pain.

Similar results were found in a study of the effects of participating in an MBSR course for people with fibromyalgia (Grossman, et al., 2007). Significantly, the researchers interviewed about half of the original participants from the mindfulness training group 3 years later, and found sustained long-term benefits among those who continued their mindfulness practice (Grossman et al., 2007).

One research review compared 38 studies involving a total of 3500 participants. It examined previously published studies which investigated the effectiveness of mindfulness meditation as a treatment for chronic pain. They found that “mindfulness meditation was associated with a statistically significant improvement in depression, physical health-related quality of life, and mental health-related quality of life” (Hilton et al., 2017). In this review, participants showed promising outcomes on pain symptoms, but the degree of improvement was limited.

Research reviews like this are limited in their ability to compare and contrast different studies. Different meditation techniques were used in the different studies, such as Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy. In addition, the studies investigated outcomes in patients with different conditions, like fibromyalgia and migraine – which is like comparing apples to oranges. This highlights the need for more high-quality studies that include a greater number of participants with the same condition, using the same type of meditation program.

When it comes to trying mindfulness meditation, for people with chronic pain, there is nothing to lose and everything to gain. Prescriptions rarely offer total relief, and come with unpleasant side effects. The only cost to meditation is a little bit of time. while the potential benefits are less pain, better mood, and a greater quality of life.

 

References:

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.

Steven Rosenzweig, Jeffrey Greeson, Diane Reibel, Joshua Green, Samar Jasser and Denise Beasley. 2010. MIndfulness-based stress reduction for chronic pain conditions: Variation in treatment outcomes and role of home meditation practice. Journal of Psychosomatic Research 68: 29-36.

Hilton, L., Hempel, S., Ewing, B. A., Apaydin, E., Xenakis, L., Newberry, S., Maglione, M. A. (2017). Mindfulness Meditation for Chronic Pain: Systematic Review and Meta-analysis. Annals of Behavioral Medicine51(2), 199–213. http://doi.org/10.1007/s12160-016-9844-2

Pain, Pregnancy & Prescriptions: Why You Should Treat Your Pain and How to Manage Safely (While Trying to Conceive & Pregnant)

The first question I had after we decided to start TTC was about how to safely manage my medications during pregnancy. It’s vital not to under-treat your pain! Here’s where to find the info you need. And to those of you who criticize women in pain who are taking prescriptions while trying to conceive, my message is: get out of here with your stigma!

How To Find Out If Your Medications Are Safe During Pregnancy

During my 20s, I spent a lot of time and effort trying not to get pregnant. I used pills, patches and IUDs, coped with side effects, sat for hours in waiting rooms just to get prescription renewals, had a couple of scares thanks to late periods, and experienced all the other joys of being a woman using birth control.

It’s a surreal moment when you and your partner make the terrifying and exciting decision to you flip the switch, and start trying to conceive. Suddenly it’s all basal body temperature, ovulation predictor kits, and cervical fluid checks (and acronym hell – TTC, BBT, OPK, CF, TWW and BFP – it’s like a secret code!). Learning and tracking all of the ovulation signs is hard enough, never mind the challenges of pregnancy and parenthood, But for those of us with chronic illness, we face the additional hurdle of managing pain and other symptoms along the way. It’s vital to have a pain management plan while trying to conceive and pregnant:

“Because of fear about use of drugs during pregnancy, some pregnant women would rather suffer than treat their pain. Consequently, it is possible that such women are at risk of undertreatment, or no treatment, for painful conditions. Chronic, severe pain that is ineffectively treated is associated with hypertension, anxiety, and depression—none of which is conducive to a healthy pregnancy” (Motherisk).

The first hurdle you will most likely face, like I am right now, is how to safely manage your pain and other symptoms while you and your partner are trying to conceive?

How To Find Out If Your Medications Are Safe During Pregnancy

The first question I had after my husband and I decided we wanted to start trying was about the safety of my medications during pregnancy. At the time, I didn’t realize how complex this issue would turn out to be. It seems simple enough – a medication is either safe or unsafe, right?

Not so fast. In fact, a whopping “91% of the medications approved for use in adults lack sufficient data to determine the risk of birth defects due to use of medications during pregnancy” (CDC – Treating for Two).

The problem is that there are no double-blind, placebo-controlled research trials involving pregnant women. Why? Because it’s unethical to test the safety of a medication on a pregnant woman and her growing fetus – the potential consequence of causing a birth defect is too great a risk (CDC – Treating for Two).

Instead, the information doctors have about the safety of medications and pregnancy usually comes from observational studies of women who have chosen to take a medication during their pregnancy.

“Registries enroll pregnant women who have taken a certain medicine. Then, after these women give birth, the health of their babies is compared with the health of the babies of women who did not take the medicine” (CDC – Treating for Two).

The best you and your doctor can do is learn what information there is about the safety of the medications you take, weigh the potential health benefits and risks, and make a judgment call. But don’t fear prescriptions while TTC or pregnant. In fact, “Medications used in therapeutic doses for acute and chronic pain appear to be relatively safe in pregnancy” (Motherisk – click for a general overview of medications and supporting studies).

So where can you find the information that has been collected about prescription medication use before and during pregnancy?

In the United States, you can contact an organization called Mother to Baby, a nonprofit run by experts in birth defects. You can call toll free at 1-866-626-6847, text 855-999-3525, or visit the website at https://mothertobaby.org/.

In Canada, you can contact Motherisk at 1-877-439-2744 toll free or online at http://www.motherisk.org/

Prescriptions And Pregnancy: Get Out Of Here With Your Stigma

Prescriptions And Pregnancy: Get Out Of Here With Your Stigma

I take medications to manage my pain, including nortriptyline, tramadol and pregabalin. When I first went online to research this issue, I faced a wall of stigma and guilt-tripping over women taking prescriptions while trying to conceive or while pregnant. I felt a lot of stress and guilt about my “choice” to continue taking medications – as if I was somehow failing as a mother before I even became one.

I want to push back against any notion that taking medications to manage your pain while TTC or pregnant is in any way selfish. Yes, some medications are dangerous during pregnancy and the information we have about them is sometimes limited. You have to do your research and perhaps switch medications and emphasize non-pharmaceutical strategies to manage your pain (like massage, acupuncture, gentle exercise, yoga and meditation). But we also know that being in pain, stressed, and unable to sleep while pregnant is harmful to a growing fetus. Reducing those illness symptoms is actually a responsible act, something that a caring mother would do. So to those of you who criticize women in pain who are taking prescriptions while trying to conceive, my message is: get out of here with your stigma!

 

 

 

 

 

How to Plan a Chronic Illness-Friendly Wedding

How to plan a chronic illness friendly wedding

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I was daunted about taking on the chaos that is wedding planning. Through trial and error we were able to plan a wedding that mixed tradition with our own style and my health needs. I wanted to share what I learned about how to plan a wedding that a spoonie bride (or groom!) can not only survive but enjoy.

*Spoonie: A person living with chronic illness, based on the spoon theory

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1. Be unconventional –  the standard all day, all night wedding format is not spoonie friendly. You know, getting ready, early afternoon ceremony, pictures, sit-down dinner, speeches, and dancing until late in the night. Add to that the fact that a wedding is an emotional high in itself. Most of us would lose all our spoons before the ceremony was even though! So pick the traditional elements that are most important to you but design the rest of your day within your limits.

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In our case we picked a venue where we could have both the ceremony and reception, to limit the travel time – a historic house and gardens in Toronto called Cedar Ridge Creative Centre. We had an afternoon wedding, from 1-5, which was the length of time I thought I could handle. We had a garden ceremony followed by a cocktail style reception inside, with buffet lunch and wine. I gave up on dancing, because it’s not something my body agrees with. Finally, our photographer took mainly candid photos, except for a few posed family ones during the reception. This saved additional time.
I brought a bar chair to sit on during speeches (but still got sore from standing for too long overall). I was lucky that my best friend was an incredible maid of honour, and she did an amazing job at keeping me hydrated and fed  and reminding me to take mini-breaks. As the bride, you become very distracted by meeting and greeting all of your guests, so asking someone to help you remember your self-care plan is a key element to you enjoying your special day.

2. Be budget conscious …without too much DIY
Spoonies are often on budgets because of constraints on work and expenses on care, but  there is no need to go into debt to have a lovely wedding. We spent approximately $7000. The only additional expense was our choice to have a green wedding – organic flowers, catering and wine is slightly more expensive, but we felt it was worth it.

Here’s how we kept costs under control:

  • We rented a municipal property, which was far less expensive then private venues. Cedar Ridge Creative Centre is a historic house preserved by the city as an art gallery with public grounds.
  • We limited flowers. We only had bridal/bridesmaid bouquets during the ceremony, with the garden flowers standing in for floral arrangements. During the reception we had a few floral arrangements on serving tables – mostly single flowers in vases.
  • We only served wine rather than having an open bar.
  • Most significantly for saving on expenses, we didn’t have a sit down meal but rather a catered buffet lunch.  Everyone mingled and enjoyed chatting, which we really enjoyed.
  • Finally, we didn’t go away for our honeymoon, mostly so I could recover without the stress of travel. It also kept our costs down!

DIY can be taken to extremes and will most likely lead to flares. I would rather keep it simple than crash because I decided to do everything myself!

See if you can delegate – Our families helped by creating wall hangings (wallpaper on rectangular foam hung like paintings), and favours (seed bombs). My best friend baked a delicious gluten-free vegan cake (yes, it is possible but it took several trial runs!).
The only DIY I did was using rubber stamps on craft paper to make signs for the serving tables.

 

 

 

3. Organize brain fog away

  • Make a spreadsheet or use a planning app. When things randomly occur to you, add them immediately. Set aside time to review your lists when you feel less foggy. Most importantly, have your partner and maid of honour double check regularly. You will forget things and things will go wrong, so try to be accepting that this is part of the process.
  • I became good at delegating, and this was a surprisingly rewarding thing to do, Initially I felt guilty, but it was a warm and fuzzy feeling that  my friends and family were happy to help, showing their love and affection. Our wedding was better than we had hoped it would be and part of that was the feeling that everyone had pitched in to make it that way.
  • In order to relieve my anxiety that  would forget to tell someone something they needed for their tasks, we made checklist spreadsheets for all our ‘helpers’. It may have seemed a bit OCD but as I’ve said, stress is toxic for spoonies, and since it made me feel better, it was worth it!

4. Plan around tension and keep your boundaries
Oh family – things can sometimes get complicate. For example, I have divorced, remarried parents. A sit down dinner with seating arrangements seemed like a nightmare, so a cocktail party was my solution.

Because we planned our wedding in under 7 months, we came up with our plans for our day quickly. One bonus was this gave less time for anyone to share unwanted advice during the planning process 😉 Actually our families were mostly happy for us to plan the day how we wanted. From talking to friends planning weddings, I advise not having conversations with people whose opinion you don’t want while you are still in the planning stages.

In my opinion the advice that it’s your day so you can do what you want is unhelpful. It’s your marriage and you can do what you want… But the wedding is a celebration with your nearest and dearest. The day is really about celebrating with them. We compromised on a few things, but then we stuck to our plans. I found the phrase “oh that’s an interesting idea, I will talk to my partner about it” helped so much to show you are listening to your family members, but reserving the right for you and your partner have the final say.  Boundaries are important for spoonies as a key way to manage stress and tension in relationships –  which can be toxic to our health and well-being.

5. Practice self-care and take it one day at a time
Plan your self care! I asked my doctor for stronger sleeping pills for the days leading up to the wedding, which helped relieve my anxiety that a sleepless night would ruin my day due to fatigue. I put in appointments with my massage therapist, physiotherapist and naturopath in the days leading up to the wedding. I planned time alone and time alone with my fiance,  just to have fun. Still, I did not do this enough and started to resent the wedding for taking up all my available energy, which is limited enough as is.  In hindsight I would double the time taken for self-care and to make time NOT spent wedding planning.

My maid of honour carried an ’emergency kit’ throughout the wedding day. In addition to make-up and comb, we put in pain killers, indigestion relievers,  and scented calming oils.

Secondly, what I eventually learned was that there is only so much you can organize in one day. At some point you have to let go of what you can’t control and focus on the point of it all – celebrating this love you have found. I learned this by just getting too overwhelmed and having to give up on extra tasks. I  wish I had started by taking it one day at a time! But being a bride inevitably takes over for a little while, as any married person will agree.

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6. Finally, don’t read bridal magazines! This is NOT “the landmark taste-making event of your life” or whatever panic inducing nonsense they write. This is about love and family and friendship and fun. It’s A day, a big day, true, but not THE day. Spoonies don’t need extra stress! Or extra work! Or hand-dyed organic cotton ribbons to tie around chair backs for a shabby chic effect… Plan this day for you, your love, and your family and friends, not for anyone else!

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The Top 9 Things I Do To Sleep Better At Night Despite Chronic Pain & Fibromyalgia

Do you feel like ‘the Princess and the Pea’ when you try to get a restful sleep? Here are my top 9 recommendations for improving your quality of sleep if you live with fibromyalgia, chronic pain or chronic illness.After being my own guinea pig, I wanted to share the most effective non-drug, natural solutions I’ve found to beating ‘painsomnia’.

Top 5 Things I Do to Sleep Better Despite Fibro and Pain

The never ending search for a good night’s sleep… if you have fibromyalgia, chronic pain, or chronic illness, you know what I’m talking about. Getting a good night’s sleep is one of my biggest challenges day-to-day. Almost everyone living with FM (or CFS, chronic pain or another chronic illness) can relate to this struggle. There seem to be so many obstacles to getting a full night of restful sleep:

  • pain
  • changes in how the brain regulates sleep/wake cycles (researchers have found that Fibromyalgia patients have disordered deep sleep – intrusions of ‘alpha waves’ associated with light sleep during deep sleep ‘delta waves’)
  • hormonal changes, such as reduced production of growth hormone, responsible for night time tissue repair
  • increased environmental sensitivity, such as to light or sound

Like a lot of other people with fibromyalgia, getting enough sleep is probably the single most important factor that determines my quality of life. In my case, I need to get about 9 hours of sleep to be able to function the next day. If I don’t, I am miserably exhausted and everything seems to go wrong – pain goes up, mood goes down and brain fog sets in.

A few years ago I did a sleep study. Before we move on, I would like to just say, for the record, that sleep studies really should be classified as a modern form of torture – what else can you call being forcibly held in place by many restraining wires, while watched through a Big Brother camera by the night guard, err, nurse?

Anyway, moving on… My sleep study showed that I woke up 66 times during the night, or about 14.3 times per hour. In addition, it found that my sleep efficiency was very low, at 64.5% (total time I was actually sleep divided by the time I lay in the bed). Basically, like many other people with chronic pain or illness, I’m just not getting a very restful sleep.

Over the years, I have tried countless supplements, medications, lifestyle changes, products and strategies to help me get a better night’s sleep. While most of these turned out to be ineffective, a number of them have significantly improved the quality of my sleep. I thought it might be helpful to share the results of being my own experimental guinea pig with you!

Quiet Down: Reducing Noise Distractions for Better Sleep

I think I might have actually become the world’s lightest sleeper since I developed fibromyalgia. I get woken up by trucks going by, my husband’s snoring, early commuters closing their car doors, my cat cleaning herself, my husband’s snoring, snowplough machines, dripping faucets, my husband’s snoring… You get the picture. Sudden noises are the bane of any insomniac’ s existence. Even if you don’t actually get woken up by a disruptive sound, it can disturb your sleep by shifting you from deep, restorative sleep into a lighter stage of sleep (Prevention). This is especially problematic for people with fibromyalgia, who already get less restorative sleep than the average person because of their illness.

1) Silicone earplugs: The first thing I tried to block out sound was, of course, earplugs. I tried all different kinds, and eventually settled on silicone earplugs. You might recognize these as a type of earplug used by some people when they go swimming to prevent swimmer’s ear infections. Instead of putting these plugs into the ear canal, the silicone molds to cover and seal the entrance to the ear canal. Personally, I find them more comfortable and effective than regular foam earplugs. For regular use, I think silicone earplugs are safer because there is less worry about damage from impacted earwax (caused by frequently pushing something into the ear canal).

2) White noise: But what if earplugs aren’t enough? This is where white noise enters the picture. White noise is a sound that contains many frequencies at the same intensity, like the sound of a fan, rainfall, or static on the radio (Prevention). By providing a constant, soothing background sound, white noise can blanket or drown out disruptive sounds that wake light sleepers. It works by reducing the noise differential between background noise and the disruptive sound – if the background sound is just silence, then a disruptive noise is very jarring, but if the background sound is white noise, then a disruptive sound is, well, less disruptive.

At first I wasn’t sure how adding noise would help me sleep better, when noise is what frequently wakes me up. But I found that I quickly adapted to the constant sound of the white noise. Best of all, I stopped being woken up by sudden noises!

Initially, I tried a number of free apps to play white noise on my phone. This is a good option to find out if white noise works for you. Over time, I found that my phone wasn’t able to play white noise loud enough to mask sounds like the neighbour’s leaf blower. Additionally, the app would sometimes cut out in the middle of the night and wake me up (yes, even sudden silence is enough to wake me). That’s when I found my new best friend, the LectroFan white noise machine. It is a small white machine that plays 10 types of white noises and 10 fan sounds. I really appreciated that it has a precise volume control so you can incrementally increase it to the right sound volume for you, and it can play a surprisingly loud sound for such a small machine. The best part is that it has an option to play continuously, instead of having an automatic shut off after a set period of time, like many other machines. Now, I’m never anxious that sudden sounds will wake me up because I know I can mask them with the white noise machine.

Lights Off: Why Darkness is Better for Sleep

Your body’s sleep-wake cycle is governed by light and dark. Darkness cues production of the sleep-inducing hormone melatonin to get you ready for a good night’s sleep. Unfortunately, artificial light can suppress the production of melatonin, which makes it hard to fall asleep and stay asleep (National Sleep Foundation). One of the simplest and most effective things you can do to improve your sleep is to reduce exposure to artificial light at night and early sunrise in the morning (unless you prefer to get up at the crack of dawn). Absolute darkness is an insomniac’s best friend. Here are the tips I have found most effective reduce light exposure:

3) Black-out Blinds: if you aren’t familiar with them, blackout blinds are made of specially treated material prevents light passing through them. In my experience, they’re one of the most effective ways to keep my room dark enough for a better night’s sleep. Whether streetlights, headlights or sunlight keep you up, blackout blinds are one of the best solutions. You can even buy portable black-out blinds for home or travel. Heavy drapes or curtains can also keep your room dark. Since I usually need to sleep in relatively late in the morning in order to get enough sleep to last through the day, blackout blinds have been a saving grace because they keep the sunlight out. However, it’s important to open all your drapes and curtains and blinds when you to get up, because sunlight in the morning helps to maintain a healthy sleep-wake cycle.

4) Sleep mask: in addition to blackout blinds, I often also use a sleep mask. That might seem like overkill, but indoor artificial light is another sleep disruptor for me. The lights from digital clocks, nightlights, computers/TVs, someone else making a midnight trip to the washroom, and many other sources can wake me up.

5) Blue Light Filter: Different wavelengths of light affect your brain differently. Researchers have found that blue light, which has a short wavelength, suppresses the release of melatonin to a greater extent than other wavelengths of light (National Sleep Foundation). Blue light is given off by electronics like computers and cell phones, as well as energy-efficient light bulbs. If you use one of these devices shortly before going to bed, you will probably find it more difficult to fall asleep or stay asleep. The best option is to simply turn off all of these electronics a couple of hours before going to sleep. The next best option is to install a blue light filter on your phone/tablet. By reducing the emission of blue light, you can reduce the negative impact of using the device on your sleep. Some phones come preinstalled with a blue light filter, like the Samsung Galaxy, but there are blue light filter apps for every type of phone or tablet. Often you can preset the filter to turn on automatically at a certain time in the evening, so you don’t even have to think about it.

Strange Bedfellows: Coping with ‘Painsomnia’

If you live with chronic pain, you have probably endured countless sleepless nights. Because insomnia often accompanies pain, the term ‘painsomnia’ was coined to describe this struggle. When my pain flares up, I sometimes see my bedroom as a torture chamber rather than on oasis of rest! After much experimentation, here are my recommendations for making your bed more comfortable so you can sleep better at night:

6) Neck Pillow: Personally, without a supportive neck pillow, I develop serious neck pain and migraines. Orthopedic or ergonomic neck pillows are often designed in a contoured wave-like form, and support the natural alignment of the head, neck and spine. If you sleep on your side, there are specially designed contour pillows for you (usually advertized in the product description). Materials like memory foam, latex or bamboo fibre help provide consistent, durable support. Orthopedic neck pillows are more costly than regular pillows,. In my experience, though, buying one is totally worth it! Pillows should be replaced every 1-2 years.

7) Customize Your Mattress: I’m pretty sure the ‘Princess and the Pea’ fairytale was written about a girl with fibromyalgia. A bed can feel like some sort of torture device to someone trying to sleep with chronic pain. I recently had to buy a new mattress because my nighttime back pain was too much to bear. In the process, I learned that there are  many decently affordable online mattress vendors. Once you’ve selected a mattress, they ship it to you in a surprisingly small box, and give you a three month trial. If you decide to return it, you get your money back and the pickup service to retrieve the mattress is free. It was such a relief to know that I had enough time to test out my new mattress and, if I decided to return it, I didn’t need to worry about the cost.

8) Heated Mattress Pad: Unfortunately sometimes even the best mattress can feel uncomfortable to someone with chronic pain. My muscles become very tense at night while I sleep, and I often wake up quite stiff or with a muscle spasm.  One of the best things I have discovered for improving my sleep quality is the existence of heated mattress pads. A mattress pad looks like a regular fitted sheet but it has small wires woven into the material that release a gentle heat. You can’t feel the wires at all, at least not sleeping on the heated mattress pad that I bought. There is a bedside dial that you use to adjust the heat level, and if you buy a queen-size one or larger, each side of the mattress pad has a separate dial for you and your partner. Sleeping on the gentle heat of the mattress pad all night has definitely reduced the number of muscles pain flare-ups I experience. I am less stiff and less sore when I get up in the morning, and I sleep better overall.

9) Mattress Topper: Another option to make your mattress more comfortable is to use a mattress topper – an extra layer to provide additional support while you sleep. I previously used a memory foam mattress topper on my old mattress, which I found helped to relieve pressure points by contouring to my specific shape. Another mattress topper option is the CuddleEwe, which uses specialty wool, and is designed to relieve pressure on your body contact points when lying down (ex. shoulders and hips) by diffusing weight better than a mattress can.

(This post contains affiliate links, but recommendations are based on my own opinions and have been in no way influenced by third parties. Anything you purchase through the affiliate links helps to support this blog, so if you are planning on doing some retail therapy anyway, consider clicking on the in-text links).

 

Tune In: How Listening to Music Improves Fibromyalgia

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

How Listening to music improves fibromyalgia

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

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

Research on the Impact of Music on Fibromyalgia

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

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

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

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

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

Why Music Improves Fibromyalgia Symptoms

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

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

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

How Listening to Music Improves Fibromyalgia Symptoms

References:

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

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

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

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

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

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/