Real Life with Chronic Illness: Inspirational Blog Posts from Spring 2017

Real Life with Chronic Illness: Inspirational Blog Posts from Spring 2017

How reading chronic illness blogs helps me navigate life with chronic illness

Living with a chronic illness can feel isolating. How many people do you know who even have a chronic illness? Our daily challenges are unique, and it can be difficult to find someone who really understands.. Even when it comes to positive changes, I find that friends and family can have a difficult time relating to the treatments or lifestyle changes that I’ve made in order to improve my health and well-being. For example, starting a meditation practice or taking supplements was considered equivalent to fraudulent ‘snake-oil treatments’  by some of my more skeptical relatives. Even more broadly, living with chronic illness changes your perspective on life and your priorities. While you might see working towards acceptance as part of healing, other people around you might see it as ‘giving up’ on getting better. For all of these reasons, it can be difficult to find your way through the realities of life with a chronic illness

This is where the community of chronic illness bloggers comes in. Reading about shared experiences can help reduce that sense of isolation –– knowing other people out there can relate to what you are going through. Chronic illness blogs can help to suggest treatments or self-care strategies, which is important given the lack of research, medical treatments or adequate pain management supports out there. Most importantly, chronic illness blogs can inspire their readers with the wisdom of experience and the power of insight.

Here, I wanted to share a few of the inspiring posts I read this spring about navigating real life with chronic illness:

Inspiring blog posts from Spring, 2017

 

You are miracle.
You are harmony.
You are 90 trillion cells weaving new tapestry.
Each one testifies to the mystery
That even on the worst day
Even at your worst
You are still your best
You are miracle

  • The Beauty of the Story Your Life Is Telling by Stacey from Chronically Whole An inspiring take on the narrative of being a person living with chronic illness. My favourite lines: “Some may say it’s telling a story of failing by not getting better faster [but]… Let your life keep telling the story of adapting, overcoming, loving in spite of loss, being unafraid  to face the uncertain future head on…”

 

  • What can fairy tales teach us about living with chronic illness? That we have to be our own heroes, for one.  Rhiann, from My Brain Lesion and Me, writes:  “My experience of living with a permanent neurological condition has also taught me that we all have the power to rescue ourselves from our own battles in whatever form that they take.” Read more at Life is Anything But a Fairy Tale. 

 

My Fibromyalgia Story: Learning How to Manage One Day at a Time

my story

Part I: From Onset to Diagnosis

For Fibromyalgia Awarenss Month, I wanted to share my illness journey here on the the blog. My story starts eight years ago. It wasn’t a climactic beginning. It was just achey low back pain that got worse the longer I sat writing my M.A. thesis. It seemed like a common enough problem to have, except for the fact that I was 23. The nurse told me to take ibuprophen 24/7 and stretch. Spoiler alert: it didn’t work. About a year later, my body gradually began to fall apart, limb by limb. My back pain worsened. My knee gave out. My shoulders become too painful to allow me to type. This is what the doctors call “gradual onset”.

I thought I was losing my mind.

My doctor at the time told me all she could do was suggest Robaxacet. At this point I was starting my PhD. The physical demands of reading and writing 24/7 began to take their toll, exacerbating my pain. Daily functioning on my own became increasingly difficult. My fiancé (now husband), who was living 4 hours away,  had to come every weekend to help me with the chores (groceries, cleaning, etc.) that I could no longer do.  In retrospect, I think the stress of the program and my fear about not being able to meet expectations, as well as not being able to understand what was happening to me, pushed my body past the point of no return. After that I developed more of the classic fibromyalgia symptoms, like insomnia, fatigue and digestive problems.

I was fortunate to have been referred previously to a pain clinic for pelvic pain. This meant I was able to see a pain specialist for my musculoskeletal pain within the same year all my fibro symptoms exploded. In March 2012 he diagnosed me with fibromyalgia.

Part II: Change, Anxiety and Trying to Cope

I was so relieved after my diagnosis that my symptoms had been validated – and given better medication than NSAIDs. I was given tramadol, which reduced my pain, and doxepin, which helped me to sleep. But I still hadn’t absorbed yet what this diagnosis would mean for my future. After my diagnosis, it became obvious that even with treatment, no amount of accommodations would allow me to continue my PhD. I had tried everything I could think of so I could stay – withdrawn from my TA position, put in place disability accommodations to allow me to submit work late, bought expensive adaptive devices and installed voice recognition software.

Feeling like my life was spinning out of control, I started having panic attacks on campus. When the spring term ended, I went back home to move in with my fiancé, and decided to withdraw from the PhD program.

With huge relief, I  went on medical leave from my studies. However, I was immediately confronted by the problem that my days were empty of activity or responsibility. I remember dragging myself out to a local cafe in the afternoons while my fiancé was at work. I wanted the anonymity of a public place, where I could feel ‘normal’ for awhile. It was the only cafe I could go to because the chairs were sensible rather than funky.  Still, I had to bring my back-rest with me, which generated stares from other patrons.  I would cover it with my coat in order to try to hide it from attention. I could no longer type or hold a book due to pain, so I was embarrassed to be sitting at a table without a laptop or reading material, like everyone else. I listened to audiobooks or free online course video lectures instead. I would set up my tablet so that it looked like I was working, rather than listening and staring around. I envied all the other people my age, surrounded by papers, purposely tapping away on their computers. The goals that I had been pursuing were on pause, indefinitely. I grieved for my old life. I pushed myself to go to the cafe, even on days I experience brain-fog or fatigue, because staying home felt like giving up. I spent that year in a state of shock. I was always someone whose identity was wrapped up in my work. I didn’t know who I was anymore.

Part III: Learning Self-Care Skills to Manage my Fibro

Gradually I started trying to put the pieces back together. When I got diagnosed with my chronic condition all the information about exercise seemed so out of touch with the reality of my life. At the time, I had trouble bending forward, which meant I needed help with basic tasks like shaving my legs. I had trouble getting up or down from sitting on the floor. I rarely took the stairs and had trouble walking or standing for longer than ten minutes. Since I was already tired, sore and busy then I wasn’t going to be able to go to the gym. I couldn’t afford a personal trainer. With my back pain there was no way I could participate in the group yoga classes I used to take in university. Even more frustrating was the fact that all the research I came across proved how beneficial exercise is to health. I knew that I should exercise but I felt like I couldn’t.

I found two at-home instructional DVDs in yoga/pilates and tai chi that I was actually able to do, which helped me to improve my physical functioning. I started seeing a physiotherapist who put together a thorough stretching routine for me to do daily. Without doubt, this is the single most effective thing I tried to improve my health and well-being. My pain decreased and my quality of life increased.

I was fortunate to be referred to a Cognitive Behavioural Therapy program by my pain clinic. I found participating in the course very valuable for learning tools to  manage the negative thoughts and feelings that accompanied my fibromyalgia. One of the core parts of the program was learning to identify negative thinking traps, or ‘cognitive distortions’.  These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves.” I learned that I tend to think in “all or nothing” terms – a cognitive distortion. I would say to myself things like “if I can no longer pursue my career, I am a failure in life”. In CBT, I learned to challenge these distortions with the reality of each situation. For example, in response to the statement above, I challenged it by saying “While being in pain means I have to do less, that does not reflect on my personal worth, nor does it mean what I can do is meaningless”.

I was also referred for a Mindfulness Based Stress Reduction course by the pain clinic. In this course, I learned to be more mindful of the present moment. I learned that worrying about the future or dwelling on the past, only makes me suffer more in the present.  It’s better for my quality of life if I return my focus to the next best thing I can do for myself in this moment. Critically, the MBSR course reminded me that, even with pain and flare-ups, there are small moments of enjoyment, if I only stop and notice them – the taste of a good meal, sharing a hug, a sunny day, or a favourite hobby. One of the key lessons I learned through mindfulness is that my thoughts, feelings and sensations, no matter how difficult, are changeable, like the weather. When I hold on to the fact that even my darkest moods will eventually lift, I feel calmer and more in control.

Part IV: Coping with Relapse

In 2014 I started a part time distance program for social work and completed the first year. But it wasn’t to be. I got a cold over the 2015 holidays and suffered the worst fatigue and brain fog I’d ever known. At the time I was just starting to look for a social work practicum placement. There was no way I could commit to working 15 hours a week out of my home. For the second time I had to withdraw from school.

I felt completely overwhelmed at the outset of my fatigue relapse last year.  First, there was the emotional reaction to a new situation: anxiety about whether it was here to stay, frustration that life was about to get more difficult, and grief at the prospect of losing what abilities I still had.  Secondly, there was the practical challenge of figuring out how I would cope, like what new treatment options to try or how to manage my daily routines and responsibilities.  Lastly, I faced the impact of a relapse on my relationships, such as the increased caregiver burden on my partner, and feeling less able to be present with family and friends.

My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. 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. I spent that winter using the time to learn new things. I taught myself calligraphy, I read, and I wrote more often on my blog.

Part V: Moving Forward, Maintaining Balance

That spring, my energy began to slowly improve. I found a kind of peace in accepting that whatever I do next, it needs to allow me to work with my body and not against it. I think that’s why blogging and writing has ‘clicked’ more for me now than when I first started. I have found that grieving for your old life and finding acceptance in your new life is an ongoing process, not a one-and-done kind of thing.

Being at home allows me to respond to each day as it is. I’m fortunate to be able to stay at home. I sleep in late because without ten hours I am a brain-fogged zombie. I can’t type because of shoulder pain but I can use speech recognition software. I stretch, do gentle exercise, walk, and make sure I move around during the day. I balance my activities with self-care, which is how I am able live more fully, even with fibromyalgia.

In the summer of 2015 I felt well enough to finally plan my (fibro-friendly) wedding. On a beautiful August day I married the man I’d fallen madly in love with eight years earlier and who has been my saving grace through this whole journey.  He didn’t blink when it came to assuming care-giving responsibilities – he does the housework, the laundry and the dishes on top of his full time job. He is always understanding when we have to change plans or just stay at home. Most of all he is so supportive. He celebrates the small accomplishments of my life without ever making me feel ‘less than’.

I’m grateful for how I’ve grown through encountering all of the challenges that come with chronic illness. Learning mindfulness meditation and focusing on the present has given me a more helpful perspective. I’m a happier person when I remember to ‘stop and smell the roses’. I feel like I’ve become more patient, more adaptable, more assertive and more accepting than I was before fibromyalgia.  I’m proud of making it through every day, especially on the tough days where no amount of self-care stops your symptoms, and you just have to hold on to the knowledge that it will pass. Everyone living with chronic illness should be proud of the strength they have developed to manage daily life.

My new motto is something I read shortly after my diagnosis –  “It’s not the life you imagined, but it’s a good life nonetheless.” It’s something I hope for myself and everyone who lives with fibromyalgia.

National-Fibromyalgia-Awareness-Day-May-12

A Tale of Two Types of Laparoscopic Surgery to Treat Endometriosis

A TALE OF TWO TYPES OF LAPAROSCOPIC SURGERY TO TREAT ENDOMETRIOSIS

 Learn about the most effective type of laparoscopy for endometriosis.

Last summer I had an appointment with my OB-GYN to figure out the next step for treating my internal pelvic pain, which she suspected was caused by endometriosis.  The pain had significantly ramped up in recent months and was virtually constant.  My OB-GYN recommended having a laparoscopy, which she described as a minimally invasive surgery to diagnose and removed endometriosis lesions that might be present in my pelvis.  I left that appointment believing that there was only one type of laparoscopic surgery to treat endometriosis.

I was wrong.

The procedure I finally had this past winter (after months of waiting), with a type of laparoscopy called ablation or coagulation. During this procedure, endometrial lesions are burned away with a high energy heat source, usually a laser. This is the most common type of laparoscopy for endometriosis. Three months after having the surgery, my chronic pelvic pain has never been worse. Ablation was not effective for treating my endometriosis.

However, there is a second kind of laparoscopy for treating endometriosis, called excision. This procedure is less common than ablation, requires more skill, and is more time-consuming.

“Excision removes endometrial implants by cutting them away from the surrounding tissue with scissors, a very fine heat gun or a laser beam…Excision allows the gynaecologist to separate the implants from the surrounding tissue, thus ensuring that the entire implant is removed and no endometrial tissue is left.”[i]

The most important difference between these two types of laparoscopic surgeries, according to a new study, is that excision is more effective than the ablation.[ii]  Researchers compared three recent studies that examined the outcomes of ablation versus excision laparoscopies for treating endometriosis.  They found that excision laparoscopies, compared to ablation, resulted in:

  • a significant reduction in painful periods
  • a significant reduction in chronic pelvic pain
  • a significant reduction in straining with bowel movements
  • a non-significant reduction in painful sex

The researchers concluded that their review “showed significantly greater improvement with laparoscopic excision compared with ablation” in the treatment of endometriosis. I wish I’d known last summer. Now I’m beginning the long process of being referred for excision surgery.

What I Wish I Knew Before Having a Laparoscopy to Treat Endometriosis

[i] http://endometriosis.org/treatments/endometriosis-surgery/

[ii] Pundir, J., & Omanwa, K. (2017, April 26). Laparoscopic excision versus ablation for endometriosis-associated pain – Updated systematic review and meta-analysis. Journal of Minimally Invasive Gynecologyhttp://www.sciencedirect.com/science/article/pii/S1553465017302637

Real Life Round-up: Bloggers Share What It’s Really Like to Live with a Chronic Condition

REAL LIFE ROUND-UP: BLOGGERS SHARE WHAT IT'S REALLY LIKE TO LIVE WITH A CHRONIC CONDITIONLife with a chronic condition is a kind of quiet extreme. Often, you’ll find us resting at home, surrounded by blankets, pillows, heating pads, tea cups, pill bottles, furry friends and a tablet or tv. It may seem like a quiet kind of life, but it’s actually a constant breath-taking roller-coaster. Internally, physical symptoms of pain, fatigue, and zillion other things are in a constant state of flux. Emotionally, we react to the confusion in our bodies and the dramatic changes to our lives. An incredible strength is forged by waking up each day and trying again to not only survive, but live.

This past week, my endometriosis pain continued to worsen, with weeks yet to go on my post-laparoscopy consult. My back spasmed. I had a few dark 3 am moments of wondering if I will ever find answers or solutions. At the same time, I had a really freeing realization about my internal critic. I’m always after myself to be more productive, equating self-worth to overachieving. I listened to a meditation about radical self-acceptance. What if your internal critic became your chief encourager? I’m trying to be much more mindful of those internal criticisms- and challenging my internal critic to be kinder and more encouraging. It feels like a load off my back. Every time I grow as person because of my chronic illness experiences, it feels like a silver lining to all the difficulties.

Here is a round-up of fantastic blog posts about real life with chronic conditions – the unfiltered truth about the challenges of this life and the ways that these bloggers have found to live better despite the obstacles!

REAL LIFE ROUND-UP: BLOGGERS SHARE WHAT IT'S REALLY LIKE TO LIVE WITH A CHRONIC CONDITION

Brainless Blogger Understanding and Being There is all about the misconceptions normal folks have about chronic pain but also encourages #spoonies to be patient with their family/friends as long as they try to be there for us & to understand our reality.

Color me lyme Words for the Chronically Ill Patience. Never Give Up! Believe. This post talks about how these affirming words can help on the illness journey. “This doesn’t mean we should corral our drive or initiative…[but] there are times when we have no choice but to let PATIENCE – and faith – take the lead.   (Easier said than done, right?!)”

Damsel in a dress. Why I talk openly about being sick. A powerful and humorous advocacy piece on challenging the stigma of invisible illness. “I sat back and realized that my illness has taken a lot from me, but there is one thing it has given me: a voice. I knew I had to unapologetically talk about my illness because being sick isn’t something I should have to apologize for.”

Invisible Warrior Minding the Pain A thoughtful post on using meditation to manage pain, especially if the pain is always with you. In order to break the pain cycle, we need to learn how to understand and work with the pain and our reactions to it. I really like the list of guided meditations at the end, using the awesome Insight Timer app

Let’s Feel Better The Determined Weeper A funny take on the emotional and physical side-effects of changing medications. I completely relate to being in a “chemical stew” as you come off a medication in order to try to get pregnant.

Being Lydia Is it all in my head Ever wished a test result would be positive? Then you probably have a chronic illness that constantly tests negative…over and over and over in your search for answers.

 

 

 

 

The Mental Torture of Medical Waiting Lists (& How I Learned to Cope)

The Mental Torture of Medical Waiting ListsWaiting.  Before this past year, I would have described waiting as boring, frustrating and draining.  Then I spent 12 months in pain, waiting for a specialist appointment, waiting for tests, and waiting for surgery.  After all that, I’m still waiting for an answer and a solution to my symptoms.  Now I would describe waiting as suffocating, crazy-making and excruciating.  Waiting can become a form of mental torture when your health, daily functioning and quality of life are at the mercy of hospital bureaucrats.

Exactly one year ago this month, I went to my family doctor because of an increase in pelvic pain.  Not only were my periods more painful, but I was experiencing debilitating cramp-like pain more days of the month then not.  My family doctor referred me to my OB-GYN for consultation at Mount Sinai Hospital in Toronto.  I had to wait three months just for an appointment date.  Then, the appointment was rescheduled twice. The office assistant would not call me back, even to give me a rough estimate for when a makeup appointment might be rescheduled.  At one point I even broke down on the phone while leaving a message for the admin assistant. More than anything else, I felt helpless in the face of this mysterious pain that was making my day-to-day life so difficult, with no ability to control the outcome.

Finally, 5 months after the initial referral, I saw the specialist.  We decided a laparoscopy was the best course of action for diagnosis and treatment of suspected endometriosis.  Her assistant told me to call back in two months in order to book a surgery date.  When I called, she told me to call back in another two months.  I called back and left a message.  No reply.  Two weeks later, another message.  No reply.  During this time my pain had spiked significantly and was now difficult to manage, even with multiple pain medications.

I felt trapped.  If I tried to see a different doctor, it would take months for an initial appointment.  If I tried to even make an appointment with the same doctor, prior to the surgery, it would take months.  The pain was making it difficult to socialize, to accomplish day to day activities, to exercise, or to even go on a date with my husband.  I felt angry and anxious.  My mental health was deteriorating.

I’m not alone in this experience. Researchers have found the waiting period can significantly impact the health of patients.  Studies have consistently found negative effects in patients waiting for test results, ranging from adverse effects on recovery times, wound healing times, reduced immune defences, and worsening of side effects from medications.  Researchers hypothesize that these effects may be due to anxiety over test results, which is supported by the finding that waiting patients have increased levels of the stress hormone cortisol. Similar impacts have been seen in chronic pain patients waiting for treatment. The study concluded that waiting for longer than six months caused a reduction in quality of life and psychological wellbeing.

Finally, finally, I got the date for the surgery, two weeks beforehand.  It went smoothly enough.  They found and removed endometriosis lesions.  I struggled through the initial recovery.  One week later, the pelvic pain came back.  Same place, same feeling, same pattern.  Perhaps it is part of recovery, or perhaps the surgery wasn’t the solution.  Now, I have to make another appointment and – you guessed it –wait.

How you react to the stress of waiting for diagnosis or a test result may be partly determined by your personality characteristics.  One study found that a high need for closure -something I can definitely relate to- increases anxiety during the waiting period.  In contrast, if you have a high tolerance for uncertainty, you’re less likely to be anxious.  Do you tend to assume the worst?  This characteristic, which researchers called “defensive pessimism,” also increased waiting anxiety.  If you tend to assume things will work out (“dispositional optimism”), then you are less likely to experience anxiety. Constantly ruminating on the outcome of the test result during the waiting period also increases anxiety.

Interrupt the Flow of Negative Self-Talk

So what can you do you if you have certain characteristics that may increase your stress levels during a waiting period for a diagnosis, procedure or test result?  Firstly, I learned that it is important to interrupt constantly ruminating on the upcoming medical appointment. Try to be aware of your thought patterns and self-talk during this stressful period.  I try to regularly check-in with myself during the day.  If you notice that you are dwelling on the frustration of waiting, acknowledge it.  Then make a deliberate choice to return yourself to the present.  A few minutes of deep breathing or meditation may help to relax you and create space between you and these stressful thoughts.

Distract Your Mind (or, Your new excuse for binge-watching Netflix)

Distraction is another valuable tool.  Decide to focus on something that will occupy your mind rather than ruminating on a positive test result or unwelcome diagnosis.  This might be a good time to re- watch your favorite comedies, because who doesn’t need a good laugh?

Challenge Self-Judgement

When I find myself thinking about how long I have to wait for my next doctor’s appointment, or my frustration at the lack of answers, I find it really helpful to say to myself “OK, here are those thoughts again”.  I’m trying to be accepting of these thoughts, because it’s only natural to be frustrated and stressed in this situation.  But if there’s nothing I can do about it here and now, then I try to refocus my attention on whatever I have going on in the moment.

It’s a daily struggle to cope with the mental torture of the medical waiting list. Negative emotions are natural and experiencing them is not a failure to manage your feelings. That’s a lesson I keep re-learning. I try to see it as a question of what is the most helpful response to the negative emotions, rather than getting frustrated with myself for feeling down in the first place.

Self-Care, Self-Care, Self-Care

It’s very important to practice self-care and stress management during this time.  Activities that have been proven to reduce anxiety include yoga, exercise, meditation, guided visualization, walking in nature, journaling and deep breathing.  Personally I find regular meditation really helpful for my mental sanity.  During this time, it’s helpful to refocus on the fundamentals of a healthy lifestyle, like trying to get enough sleep, eating nutritious food and connecting with your social support system.

Here are few resources for staying present and de-stressing:

References:

Hoffman, J. (2012). The anxiety of waiting for test results. New York Times. Retrieved 10 Feb. 2017 from https://well.blogs.nytimes.com/2012/07/23/the-anxiety-of-waiting-for-test-results/

Lynch, M. et al. (2008). A systematic review of the effect of waiting for treatment for chronic pain. PAIN 136(1-2): 97-116. Retrieved 10 Feb. 2017 from http://www.sciencedirect.com/science/article/pii/S0304395907003442.

Markman, A. (2014). Waiting is the hardest part, but you can make it easier. Psych Today. Retrieved 10 Feb. 2017 from http://www.psychologytoday.com/blog/ulterior-motives/201407/the-waiting-is-the-hardest-part-you-can-make-it-easier

A Not-to-Do List for Life with Fibromyalgia

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.

Challenges of a Fibro Mom-to-Be: Realities of Family Planning with Chronic Illness

FB challenges of a fibro mom to beMy husband and I have decided the time is finally right to start family planning – or as right as it ever will be! For most (hetero) couples, this might be as simple as throwing out the birth control pill pack and spending more time in the bedroom. Of course, many otherwise healthy couples face fertility challenges that shouldn’t be minimized. But for anyone living with chronic illness, the starting point for trying to conceive may be far behind the average couple.

In my case, I live with fibromyalgia and pelvic pain, including (suspected) endometriosis. My monthly pain from the endometriosis – throbbing cramps – has worsened in the last few months –  up to 5-6 out of ten on the pain scale, 15 days a month. My OB-GYN and I decided the time was right to do a laparoscopy to officially diagnose the endometriosis and to remove the painful lesions, with the goal of reducing my overall pain. If my pain is reduced, this is my best chance to endure going off of the birth control pill, which has been my endometriosis treatment for several years. This is why the time will be right or us to try to conceive, or as soon as my laparoscopy is scheduled anyway. It’s strange that my pain has decided the timing instead of life circumstances, but that’s part of being a spoonie, for me at least! If I do have endometriosis, then I may also face fertility challenges, but we will not know this for awhile. I’ll cross that bridge when I get there.

The second significant challenge is that the medications I am currently on pose potential risks to a developing fetus. In these cases the risks are weighed against the benefits for the mother -being an exhausted, stressed, depressed, or in-pain Mom is not healthy for baby either. I have to completely come off of Lyrica, or pregabalin, (FDA approved for Fibro) because a recent study suggests a high risk of birth defects. I have found Lyrica helps with my autonomic nervous system symptoms during flares – goosebumps, chills, temperature intolerance, racing pulse, restless legs, head rushes, increased salivation, etc. Coming off a potent medication is difficult, and often involves worsening pain, sleep and mood, among other rebound effects. Because my laparoscopy is several months away, I am going to taper off my Lyrica very slowly, over three to four months. Hopefully this will reduce any rebound symptoms. I’m nervous about what my fibromyalgia will look like off of pregabalin.

I have been taking a long release tramadol prescription called Tridural. My pain management team believes that the risks of tramadol for the baby – dependence on the opoid activity of tramadol  – are outweighed by the benefits to me in terms of pain control. However, I am on the highest Tridural dosage, which has to be taken continuously at the same dose, once a day. So, I am switching to short acting Tramadol, which you take every 4-6 hours. The goal is to take less Tramadol overall this way, because I can modulate the dose according to my daily pain level. On low pain days I take less, on high pain days I take more, with the hope of taking less overall. I recently made the switch and I am having a tough week. I have had difficulty sleeping, stomach upset, and low energy. This is mostly due to trouble getting used to how much or how often I should take the new tramadol. I like having more control however, and am hopeful the side effects will subside soon and I will find a good routine.

A further significant issue will be sleep. Having ten hours of sleep is the foundation for my functioning. A bad sleep causes all my fibro symptoms to flare.  I take a low dose of doxepin (Silenor)- a tricyclic antidepressant – to help me sleep, with occasional use of zopiclone for nights before important commitments. My doctors are still considering what my sleep prescriptions might be during pregnancy, but zopiclone is generally discouraged.  I take a number of supplements like 5htp, melatonin, magnesium and valerian, which have helped my insomnia a great deal. I will have to come off of all of these too. I am definitely anxious about this part of pregnancy! I am trying a cognitive behavioral therapy for insomnia program by using a book called Sink Into Sleep: A Step by Step Workbook for Reversing Insomnia by Dr. Judith Davidson. Conquering the anxiety I have about the consequences of a bad night’s sleep is definitely helping, by using relaxing sounds and guided relaxation tapes on apps like White Noise and Insight Timer. I take the perspective that all I can do is create the best environment for sleep at the present moment and worrying about what will happen tomorrow is unhelpful. This isn’t a perfect strategy but it is helping me to reduce night time wakings now and will hopefully help during pregnancy.

Finally, in order to reduce the pain of pregnancy, I need to focus on strengthening and exercise as much as possible. I already have conditions like sciatica and SI Joint pain, which are common during pregnancy. I don’t have to tell you exercise is difficult during chronic illness! I have a wonderful physiotherapist (physical therapist) and athletic therapist who designed a gentle strengthening program for me. I found breaking it up into arms, legs and core exercises that I do on different days helps me to actually do my routine more regularly. However, the unpredictability of each day means it is hard to keep a regular exercise schedule. After three or four flare days in a row, it’s hard to get back into a routine. It’s hard to ever call it a routine! However I know that every day I put in now is going to help during nine months of pregnancy. But to top it off, I am concerned that the reduction in pain medication and associated side effects of tapering off are going to further complicate my exercise goals. It is going to take all of my determination to get stronger!

I hope to continue to share this journey on here. It helps me to process and plan for pregnancy. I also hope it raises awareness about the reality of family planning with chronic illness. Ultimately of course I hope it offers shared experiences and support for other hopeful fibro (or chronically ill) Moms-to-be (and Dads too)!

 

 

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

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!

 

Move More: How I Actually Started Exercising with a Chronic Condition

Move More: How I Actually Started Exercising with a Chronic Condition

Does just seeing another article about exercise make you want to turn the page? It often makes me want to. When I got diagnosed with my chronic condition all the information about exercise seemed so out of touch with the reality of my life. If I’m already tired, sore and busy then I’m not going to be able to go to the gym. I can’t afford a personal trainer. With my back pain there is no way I can participate in the group yoga classes I used to take in university. Even more frustrating was the fact that all the research I came across proved how beneficial exercise is to health. I knew that I should exercise but I felt like I couldn’t.

 

But what if I could?

One day I came across an(other) article reporting on research that showed yoga could improve fibromyalgia, my chronic condition (OHSU, 2010). The results were impressive – pain was reduced by 24%, fatigued by 30% and depression by 42%. Great, I thought, another thing I can’t do that would help. But in this case I also found that two of the researchers were part of a nonprofit organization that produces exercise DVDs for fibromyalgia, including one on yoga and Pilates (link below). I ordered the DVD and skeptically waited for it to be delivered. I was surprised and excited to find that I was able to do the routine – which was shown at three different intensity levels so I could modify the poses as needed. I found that the at-home instructional DVD format was affordable, convenient and accessible – I could do it when I was able, for as long as I could and without wasting energy traveling somewhere and back.

Woman stretching arms behind back

Photo by Steven Depolo

During my health coach training I learned that yoga, tai chi, qi gong, and stretching are all range-of-motion or flexibility exercises. These types of exercise can also build strength and promote balance, but primarily focus on lengthening tight muscles and moving joints through the full span of movement they are intended to achieve. “Limited flexibility can cause pain, lead to injury, and make muscles work harder and tire more quickly (p. 92, Lorig et al., 2013).

My positive experience with the yoga/pilates DVD encouraged me to find other programs with a similar format. One of my favorites is the Tai Chi for Health series by Dr. Paul Lam (link here), especially the Tai chi for Arthritis program that was designed in conjunction with the Arthritis Foundation. This instructional video that takes you step-by-step through 12 lessons until you have the movement sequence memorized.  I enjoyed learning an entirely new way of moving and began to feel more confident that I could include exercise in my weekly routine.

I also started seeing a physiotherapist who put together a thorough stretching routine for me to do daily. Without doubt, this is the single most effective thing I tried to improve my health and well-being. My pain has decreased and my daily functioning has improved, along with my quality of life.

Many flexibility/range-of-motion exercises programs also share a second common feature as mind-body movement practices. For example, “Yoga is a set of theories and practices with origins in ancient India. Literally, the word yoga comes from a Sanskrit work meaning “to yoke” or “to unite”. It focuses on unifying the mind, body, and spirit, and fostering a greater feeling connection between the individual and his/her surroundings” (Moonaz, 2015). Greater body awareness, stress reduction, emotional balance, and improved energy are all benefits of mind-body exercise programs (Moonaz, 2015).

Flexibility/range of motion exercise programs are a great starting point for anyone who has not exercised for awhile, or who has a health condition that makes movement challenging. They are easy to do at home or you can find many classes offered in your community. Gradually incorporating these routines 2-3 x/week and practicing daily stretching is how I was able to actually begin to  move more. Below is a quick primer on what these kinds of activities are so you can pick the right one for you and a link to programs that I have tried:

Yoga: “Yoga involves directing your attention and breath as you assume a series of poses, or stretches” (Gaiamlife, n.d.).

Qi Gong and Tai chi: “The term qi gong (or chi kung) describes the complete tradition of spiritual, martial and health exercises developed in China. Tai chi is one of the most common of these. Practicing qi gong involves performing a series of movements while paying attention to the body and staying aware of the breath. The exercises are especially effective for developing balance, focus, coordination and graceful, centered movement” (Gaiamlife, n.d.).

Stretching: Poses to lengthen muscles and increase range of motion in joints

 

References:

OHSU. (2010). OHSU Research Suggests Yoga can Counteract Fibromyalgia. http://www.ohsu.edu/xd/about/news_events/news/2010/2010-10-14-ohsu-research-sugge.cfm

Moonaz, S. et al. (2015). Yoga for Arthritis. Johns Hopkins Arthritis Center. http://www.hopkinsarthritis.org/patient-corner/disease-management/yoga-for-arthritis/

Gaiam Life. (n.d.) How to Choose a Mind Body Exercise. http://life.gaiam.com/article/how-choose-mind-body-exercise

 

 

 

Exercise at home: Tai Chi for Arthritis

tai chi

My husband and  I decided this week that we need to focus on regularly doing stress relieving exercise. We came to this conclusion after one of those pointless arguments that you have in the middle of a stressful week, when you aren’t really dealing with what is actually bothering you. One problem with having chronic pain is that every week can seem like an especially stressful one – flareups can interrupt like mini crises, causing a flurry of last-minute adjustments to make sure all the necessary things get done. Life can start to seem like a giant game of whack – a – mole (that carnival game where the ‘moles’ pop their heads up faster than you can hit them with the hammer). We realized that if we just keep trying to react to all those inevitable stressors faster and faster, from forgotten pill refills to unexpected financial costs to family demands on our time, the only result will be that we are burned out, not that our to-do list will ever stop growing.

I think we need to try to get a little bit of control by managing our stress better, not doing our chores faster. I have an upcoming mindfulness-based stress reduction (MBSR) course happening at my hospital later this fall, which I think will be really helpful. However, another important thing to include is exercise. This is difficult for chronic pain and fatigue patients, for obvious reasons. It can also be hard for our spouses and caregivers because they often don’t have time between working and doing the household chores to fit in some exercise. I’m very lucky to have a man in my life who is willing to do so much for me – but he sometimes forgets to take care of himself in the process.

I think that it is very convenient to have an at-home option for your exercise. Walking and aqua fit are great, but if the weather is bad or you don’t have the energy to trek out to a pool somewhere, it can often mean no exercise at all. I think a really good resource are at-home DVDs.

I was excited to find a resource called Tai Chi for Arthritis by Dr. Paul Lam . I had never done tai chi before I got this DVD and I have to admit that I generally associated it as an exercise that was most appropriate for elderly people. Like a lot of other things that I’ve had to revise, I’ve learned that this stereotype is just not true. This is a really good instructional video that takes you step-by-step through 12 lessons until you have a movement sequence memorized.

I particularly like tai chi because the entire program involves standing, not transitioning from lying to sitting to standing which other exercise forms like yoga tend to do. There is also a seated tai chi DVD available on his website if that is easier for you. It is entirely possible to take rest breaks if needed between lessons. The DVD also includes warm-up and cool down segments. It’s nice to be learning an entirely new way of moving – it feels like a new skill rather than a simplified exercise protocol. Although it is very gentle, I can feel afterwards in my shoulders and mid back that I have been exercising. Dr. Paul Lam is also a very Zen individual, and watching him is just in itself calming!

This program was specifically designed by the Arthritis Foundation in the US and Dr. Paul Lam, who is a medical doctor and tai chi instructor. Some of the health benefits discussed on the Tai Chi for Health Institute website include:

  • Muscle strength is important for supporting and protecting joints. It is essential for normal physical function.
  • Flexibility exercises enable people to move more easily. Flexibility also facilitates the circulation of body fluid and blood, which enhances healing. Many arthritic conditions such as fibromyalgia, scleroderma and spondylitis are characterized by joint stiffness and impaired physical function. Tai chi gently frees up stiff joints and muscles.
  • Fitness is important for overall health and proper functioning of the heart, lungs and muscles. Tai Chi for Arthritis can improve all of these components.

Several studies of the program were completed and they demonstrated pain relief and improved balance for patients with arthritis. I’m going to focus on trying to do this program two to three times a week. Hopefully I will begin to feel more of the physical benefits, but especially the stress lowering effects of exercise in general and tai chi in particular!

My partner (who does not have chronic pain) is going to be doing a beginner yoga DVD by Rodney Yee which looks really good. It focuses on learning each posture correctly and then gives you a couple of routines to learn. It’s good to remind the people that we love and who take care of us to look after themselves once in a while!