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Dead End: Finding the Next, Best Option Right Now When You’ve Run Out of Treatments to Try

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How do you cope when the usual treatments for your chronic pain or illness stop working? Here’s how I prioritize the dizzying number of options online. Even at a dead end, we still have the ability to take care of ourselves in the present moment. Ask yourself “What’s the next, best thing I can do to help myself right now?”

Dead End Finding the Next, Best Option When You've Run Out of Treatments or Your Symptoms Are Getting Worse

What do you do to manage your illness symptoms when you’ve tried the usual treatments but they aren’t working? That’s a question I’ve had to consider recently. In the last several months, I’ve been trying to cope with SI joint and sciatica pain that has inexplicably increased. Physiotherapy treatments give me several days of relief, but eventually, the pain returns. I’ve tried changing footwear, chairs, exercise regimens, acupuncture, massage and many other types of treatment. Yet, on countless nights the pain still keeps me awake. I’ve lost certain abilities, like being able to do floor strengthening exercises or wearing some types of shoes.

How to Decide What New Treatments to Try and Then Put Them Into Practice

My regular doctor told me to try heat and stretching, as if I hadn’t already done that 10 000 x. When I explained that, I got a referral to a specialist, which will likely take several months. Of course, one of my next attempts at finding a solution was to consult Dr. Google. The number of potential solutions to SI joint and sciatic pain is dizzying, from magnesium to capsaicin to yoga poses, among many others. I tried to limit my research by eliminating potential sources that were trying to sell something, or had no research references to back them up. Independent reviews from other patients also help to prioritize certain options. I’ve started with the most workable treatments for me, and then gone down the list.

So far, some things have helped bring down the pain for a few days, like capsaicin and changing to standing exercises.. I keep what helps and then try the next thing. Only changing one thing at a time helps me to make sure I can connect any changes in my pain to the treatment. If you have too many new variables you won’t be able to tell which one actually helped. Keeping a symptom and treatment log also helps me to see cause and effect.

But even after all that, sometimes, it’s 2:30 a.m. on yet another night, I’m still awake due to pain and it occurs to me that, temporarily at least, there’s nothing left to try. Now what?

Reaching a Dead End: How to Cope Right Now

My initial reaction to solving a problem is to always do something. I hate feeling helpless. Very few people calmly accept losing control, especially over something as personal as your bodily functions. Maddeningly, powerlessness is a key characteristic of life with illness. For example, I think it’s a safe bet to say that virtually everyone with a chronic illness has at some point been up in the middle of the night in pain, fruitlessly scrolling through web searches on their phone, looking for solutions.

Now when I reach a dead end, I’m trying to accept that, at least for the time being, there’s nothing more I can do. Actually, that’s not quite true. There’s nothing more I can do to plan my future steps at the moment. I’ve run out of options for things to try in the middle of the night that will improve how my future self feels tomorrow. Obsessively worrying about the lack of options or reviewing what I said in the voicemail I left for my doctor doesn’t count as ‘doing’ anything to help.

But even at a dead end, I still have the ability to take care of myself in the present moment. I took a meditation course a few years ago and at the end of a short three minute “breathing break” the instructor asked “what’s the next, best thing you can do for yourself right now?” That question came back to me recently. When I am awake and in pain in the middle of the night, what’s the next, best thing I can do to help myself? It might be to just get up, change positions, distract myself by listening to an audiobook, or make a cup of (non-caffeinated!) tea. You won’t solve all your problems that way, but you can make the here and now a better place to be.

Of course it’s quite frustrating to know that the next day will most likely involve a lot of fatigue and pain. But I would argue that the frustration of pointlessly trying multiple pain management techniques that aren’t helping, while getting more and more worried about the impact of sleeplessness on the following day, is far greater! There is always something available to us right now that can help to make the present moment a little bit easier. Taking refuge in following the breath, looking out the window, holding someone’s hand or petting an animal are all ways to practice self-care right now. In the middle of the night it helps to remember that there’s always some next, best thing you can do for yourself right now, even if you’re at a dead end when it comes to trying new treatments or solving worsening symptoms.

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Overcoming Isolation: How to Enjoy Alone Time Caused by Chronic Illness

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Chronic illness is isolating. Spending hours alone every day can be lonely. Here’s what I have learned about embracing solitude and learning to be comfortable in my own company.

Overcoming Isolation: How To Enjoy Alone Time Caused by Chronic Illness

I recently went out for lunch with friend who had just transitioned from her office to working from home. She described dreading the long hours on her own, and the resulting cabin fever of spending so much time in one place. As I listened, I realized what a significant transformation my own feelings about solitude have undergone during my illness experience.

As an extrovert, I’ve never looked forward to spending an entire day by myself – never mind a succession of days. I prefer to be around people. I’m happier spending an afternoon in a café than my living room. When chronic pain forced me out of grad school, I was at a loss of what to do with myself at home all day.

But I think it’s about more than being an introvert versus an extrovert. Looking back, I don’t think I ever distinguished between loneliness and solitude. I wasn’t comfortable with my own company. As I reflected on what I have learned about embracing solitude, I came to a few conclusions about the lessons my experience has taught me and what I’m still working on.

Being Present For Simple Pleasures

The first step on my path towards becoming a reformed extrovert was learning to value being present. A year or two after being diagnosed with fibromyalgia and endometriosis, I was referred to a Mindfulness-based Stress Reduction course at my hospital – an eight week program on using mindfulness meditation to manage pain. I often credit mindfulness meditation for maintaining my sanity, but one of the most important lessons that I’ve learned is that there are many enjoyable moments in ordinary life that can enrich our lives if only we pay attention in the present moment. The sun on your face, bird song out the window, a great cup of coffee, or a snuggle with your pet are all examples of simple, everyday pleasures that are available for us to enjoy if we learn to tune in to the present moment. Being on autopilot most of the time meant that I was oblivious to these experiences. It’s often easier to savor these times on your own rather than in company, and that’s one of the reasons I have come to value my alone time.

Exploring New Horizons (From Home)

A second change in my perspective has come from exploring my interests and finding new hobbies. In other words, unleashing my inner geek. From reading, and watching and listening, I’ve discovered that I love historical murder mystery books, political news, blogging, archaeology documentaries and calligraphy. I feel fortunate to live in an era of podcasts, online libraries, free e-courses, audiobooks and streaming. If your illness keeps you at home much of the time, being able to explore new horizons from your couch is fantastic. Whether or not you are crafty, artistic, musical or nerdy, there’s something out there for you to geek out on. I honestly haven’t found anything else I prefer to do on my own as much as to feed my curiosity. In the process, I have learned about myself. Learning more about the world helps you understand your own place in it better. Discovering new interests, and new talents is deeply rewarding. Spending time that way really transforms loneliness to solitude.

Making Time For Meaningful Self-Care

Finally, seeing the dividends of investing in self-care has made me more open to making time for myself. This isn’t an easy thing to do. You often see advice about self-care made out to seem like it’s as simple as lighting some candles and taking a bath now and then. I think it’s really about changing your relationship with yourself. Who wants to spend time with someone they don’t like very much? No one. If you have an inner critic with a megaphone, of course you don’t want to spend alone time together. The prospect of spending time by myself months that I was always looking for another distraction. In the age of scrolling through social media and binge watching TV, I think enjoying me-time is almost a lost art form (not that I like binge watching any less than the next person!).

It takes a change in mindset to identify negative self-talk, challenge it and replace it with a kinder and gentler perception of yourself. Self-care is really about self-compassion, and accepting that you’re only human, just like everyone else – it’s okay to be imperfect and make mistakes. For many people  there is a lot of worry, guilt, frustration and self-blame tied up in developing a chronic illness. Cultivating self-compassion in the face of difficult circumstances is a long process, and I’ve found that many lessons need to be re-learned over time. Journaling, meditating, CBT, and therapy are all ways to improve your relationship with yourself. Learning to be more comfortable in my own skin has made me enjoy my own company much more than before. And now I’m much more likely to enjoy a quiet cup of tea, listen to music, meditate, or actually do any of the self-care activities by myself that are listed in the lifestyle magazines!

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

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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

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

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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.

A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

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A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

When I think of the holiday season, two competing feelings immediately come up – nostalgic happiness at the thought of celebrating with loved ones (as well as the Christmas cookies), and impending panic at the logistical nightmare of shopping, decorating, baking and visiting. Chronic illness has tilted the balance towards anxiety outweighing anticipation because  my symptoms through so many obstacles in the way of getting ready for everything the holidays entail. Last year I shared mindfulness tips for managing the stress that can accompany the month of December – through staying present, being self-aware and treating yourself with kindness.

This year I’m reflecting on the true spirit of the holidays and what I really want to celebrate. The thing is – for most people, shopping till you drop, cooking up a storm, decking the halls, party hopping, and getting up early with the kids to open presents from Santa – is the essence of the Christmas celebration. Ideally, bonding with your loved ones over good food and the fun of exchanging presents puts family and togetherness at the heart of the holiday season.

A common criticism about how Christmas and other holidays are celebrated is that perfectionism over decorating and party planning, as well as greed in the form of materialistic gift-giving, take over the true purpose of the season. The expectations that we internalize and put on ourselves can really ruin the holiday spirit. What I’ve come to learn is that, If you live with chronic illness, you will inevitably fail to do all the things you’re supposed to do this time of the year. It sucks! But I’ve also learned that we don’t really have to live with the stress, disappointment and sense of failure that result from setting unrealistic holiday goals.

By returning to the core values underlying Christmas, Hanukkah, and other celebrations – generosity, compassion, hope, gratitude and love – I think we can find a new ways to meaningfully celebrate this time of the year. I’m trying something radical this year – extending some of those holiday feelings towards myself. So often I read tweet and blogs about how those of us who live with chronic illness are overachievers or perfectionists. Most likely the person you showed the least compassion and kindness to last December was yourself – am I right?

So what does the holiday season look like if I am compassionate to myself? Making more realistic plans and setting gentle boundaries is the first step. We have three families to celebrate with – my in-laws and my Mom’s and Dad’s families. This year we told everyone that back-to-back celebrations would not be possible. The end result  is that we have Christmas Eve plans, and Boxing Day Plans, but  we are staying home alone on Christmas day. Initially I felt quite guilty about this because I know everyone would love to see us on that day, but if I’m not gentle with myself I will ultimately end up having to cancel. And that would be worse! Compassion is like the oxygen mask analogy – you have to put yours on first before you can help the people beside you.

Another way that I am treating myself with more kindness is to use a softer and gentler tone in my own mind towards myself. When I start to feel stressed about not getting perfect gifts for everyone, or whatever problem that my inner gets judgmental about, I’m trying to take a deep breath and responding instead with more compassion and understanding. A good question to ask yourself is “what would I tell my best friend if she was facing this issue?”

I recently read a book called The Mindful Path to Self-Compassion which gave me the insight that, while we can’t change the challenging experiences or difficult emotions we face, we can change how we treat ourselves as we go along. Much of our suffering comes from resisting what is unfolding – worrying, ruminating, regretting, dreading, clinging, judging – rather than from direct experience of a painful circumstance. But if we can befriend ourselves, and compassionately hold ourselves while we go through a tough time, a lot of the unnecessary suffering can be short-circuited. It’s an ongoing practice, of course!

So far, I’m already finding it helpful to use the ‘loving-kindness phrases’ from compassion meditation to wish: “May I be safe, may I be peaceful,  may I be joyful, may I live with ease and wellbeing”. I repeat these phrases both when I’m sitting in meditation or feeling anxious during the day. This is a secular practice I feel comfortable with, but many people send a prayer rather than a wish. In the Christian tradition, you are asked to ‘love you neighbour as yourself’, meaning cultivating love for yourself and caring for others. This can be done as a blessing exercise: “May I experience God’s love”, repeated for peace, safety and wellbeing.

In the guided meditation, we are then invited to focus on our feelings of love and compassion for people we are close to by repeating wishes for their happiness and well-being (May he/she be safe…peaceful…joyful…live with ease and wellbeing). Then, we extend those feelings to strangers and people we may have difficult relationships with. Finally, we practice extending love and kindness to all beings in the world. Here is an additional guided practice, along with the script, from Mindful Magazine.

If you are in conversation with someone at a holiday gathering, you can silently repeat the phrases to yourself as a wish or a blessing for them. Staying present is one of the best gifts you can give those you care about, rather than getting distracted by ticking items of your ‘perfect holiday to-do list’. Loving kindness phrases can re-anchor you in the moment to the values you are trying to put at the heart of the holidays.

This Christmas, as I try to direct the spirit of the holidays towards myself, I hope that, in turn, I can pass it on by treating my loved ones with more gratitude and loving kindness! By emphasizing these values, I think  how we choose to spend our time will change. What form of togetherness actually gives you a sense of meaning and connection?  Since pacing limits what I can do, I’m going to prioritize the things that really matter and hopefully have a heartfelt holiday season!

3 Fibro Technology Hacks For Getting Things Done

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3 Fibro Technology Hacks For Getting Things Done

Fibromyalgia makes it hard to get things done. Pain, fatigue, and brain fog conspire to slow your progress no matter how determined you are to accomplish your goals. I want to share the three most helpful technology hacks that I use for getting around the challenges of living with chronic illness. (All of my suggestions are based on my own preferences, and are not sponsored or affiliated with any companies or apps).

Voice Dictation Software: The last time I was able to type a single page on my computer was the year before my fibro diagnosis. Shoulder pain, neck pain, carpal tunnel, pinched radial nerve – I developed any and every pain related to computer-work. No amount of ergonomic-anything was able to make it comfortable for me to type. Like many people with fibro, home is where I’ve spent most of my time since my diagnosis. Being unable to use my computer was very demoralizing because the internet was my gateway to the wide world beyond my home.

In the past few years voice dictation software has become significantly more accurate. In fact, voice dictation is 2-3× faster than touch typing! Most importantly, it’s significantly easier on your body. Once I realized how much pain I could save myself, I began exclusively using voice dictation on all of my devices. On my phone and tablet, I use Google Voice typing to dictate text messages and emails. This is more gentle on my wrists than texting, but editing  any mistakes has to be done manually. On flare days, I have to stay away from doing too much on my phone.

My favourite voice dictation software is Dragon Naturally Speaking by Nuance, which is for desktop and laptop computers, both PC and Mac. Not only can you dictate and edit by voice, but you can also command your computer and mouse by voice! It takes a while to get up to speed on how to use Dragon (eventually I got the book Dragon Naturally Speaking For Dummies). However, with a little bit of patience, I’ve been able to use my computer again, and reconnect with the great big world out there. Most importantly, I have been able to spare myself a lot of upper back, neck and wrist pain. One unexpected benefit is being able to work on the computer while standing, sitting or even lying down via my headset. That’s about as fibro-friendly as it gets!

Pomodoro Pacing Apps: So you’re feeling pretty well, better than you have for a few days, and you decide it’s finally time to get some things done. You dive into doing the laundry, clearing your email inbox, or getting the groceries. But in your rush to finish the task, you blow past your limit and end up crashing. The next day you wake up with a flare. Sound familiar?

Theoretically, I know I will be more productive if I do things in small chunks, rather than trying to get it done all at once. I know that I should take small breaks. Closing my eyes and resting for a few moments helps to prevent brain fog. Shifting position, stretching or walking around really helps to banish back pain. But in the moment I find it really hard to remember to take those breaks. In frustration, figuring that ‘there must be an app for that’, I decided to research productivity apps. That’s when I learned about the Pomodoro technique.

The Pomodoro technique is based on the principle that the most productive way to work is in short focused bursts, with mini breaks in between. Typically, this means 25 minutes of work followed by five minutes rest, with a longer 15 minute rest after several work sessions. For people without fibromyalgia, this technique has been shown to increase productivity. And, of course, there are lots of apps for that!

I use one called Good Time, which lets me customize how long I want my work/break sessions to be. On a particularly brain foggy, achy day, I sometimes make my work-break sessions equivalent (15 minutes on, 15 minutes off). On a good day, I stick to the 25/5 minute Pomodoro technique. It’s particularly useful because I can customize taking a longer rest break – usually about half an hour – after two or three cycles of work/mini break bursts.

The problem with simply using the timer on my phone’s clock is that I forget to reset it once a single session has elapsed. You can set the timer on a Pomodoro technique app  to work continuously, so it automatically pings when a new session of work or break begins. It’s brain fog proof! No matter how many times I resolve to pace my activities, I always end up pushing past my limits. The notification bell reminding me that it’s time to take a break is the only solution I have found that actually works.

Voice Activated Virtual Assistant: The bane of my fibromyalgia existence is being unable to remember when I need to do things – deadlines, appointments, responding to emails or texts, or anything of that nature. The answer seems simple – add things to my to-do list when I remember them, and that way I’ll be able to keep track of all my tasks. Except, in order for that to work, I need to remember to check my to-do list! For the life of me, I can’t seem to do that. Brain fog is one of the most frustrating fibromyalgia symptoms, but virtual assistants can do some of the planning for you.

One day, when I was explaining my frustration about forgetting my to-do’s, a friend said to me “all you have to do is enable the Google assistant on your phone, and then verbally ask it to remind you about task X whenever you need to address it.” This was really a eureka moment for me. I can press the home button on my phone to activate the assistant, and say “remind me tomorrow morning at 10 a.m. to call Dr. Smith and book an appointment.” Then, the next morning at 10 a.m. I will get a reminder on my phone to call Dr. Smith. The reminder stays on my notification drop down menu until I clear it. You can even set reminders that will be sent to based on your geographical location. For example, when you get to the grocery store, you will receive the pre-set reminder telling you to “pick up cereal.”

Many of us don’t use the full functionality of assistants like Siri, Cortana, Google Assistant, Alexa, Bixby or Dragon Mobile. You can save notes to yourself if you want to jot something down before you forget it. If you want to compile multiple notes, like ideas for a project, you can send an email to yourself with of a complete list of your ideas at the end of the day. Additionally, you can add general reminders you might want to access at any time, like the license plate of a rental car. If you ask “what’s on my calendar tomorrow?” your assistant will tell you what you have scheduled the next day.

Virtual assistants can send texts, make calls, read aloud your messages, find emails and more by voice, which I find helpful when I have eye strain or sore wrists. Assistants can do calculations, so if brain fog is preventing you from figuring out how much to tip, you can ask for a little help.

Why You Should Use Social Media More If You Live With Chronic Illness

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Why You Should Use Social Media More

Social media has a bad reputation. It’s full of trolls trying to inflict pain on other people anonymously through their computer screen. It’s a false representation of living the perfect life, stoking envy and despondency in others. It’s the ultimate vanity project, epitomized by the selfie.

And I would agree, it is all of those things. So how do I get from there to advocating that you use it more?

Over in our corner of the Internet, the way those of us living with chronic illness use social media is very different. Our trolls are benevolent, lending support through random acts of kindness, like messaging responses to others who are having a bad day. Validation, support, humour and advice are far more common than Twitter feuds. No one is pretending to have a better day than they actually are – we keep things very real. Since few of us know other people living with fibromyalgia in real life, social media offers a way to connect with other people who can actually understand what you’re going through. Being able to interact with other people when you’re stuck at home is a blessing, rather than a curse.

What Science Says About the Therapeutic Benefits of Social Media

Researchers have investigated the therapeutic benefits that people who live with chronic pain derive from using social media. One study (Merolli et al., 2014) found three common themes in the reported benefits from a global survey of chronic pain social media users:

  • exploration: finding information about self-managing the condition, because social media can “filter and guide people to useful information” that they are actually able to use
  • connection: interacting with other people who understand what you are going through and feeling less alone in your experiences
  • narration: sharing your story, expressing yourself, emotional catharsis, and learning from others’ experiences

Other studies have found that patients with chronic pain who use social media report positive health outcomes. Merolli et al. (2015) found that a positive impact on the ’emotional burden’ of living with chronic pain was the most reported health outcome of using social media, as well as cultivating ‘relationships with other people” and a greater ‘enjoyment of life’. Interestingly, chronic pain social media users also reported cognitive benefits, including an ‘ability to take in new information’. An improvement in knowledge of the disease and self-management has also been found.

Which Social Media Platform Is Right For You?

When it comes to choosing which social media platform to try, it’s helpful to think about what your purpose for joining is, and which sites you’re already familiar with. If you are looking for emotional support, then a closed Facebook group is the way to go. If you are hoping to raise awareness, then a large, public forum like Instagram or Twitter is more suitable. If you are looking for information, then Pinterest is a surprisingly useful source for articles and blogs. There are too many social media sites to cover them all, but here is a primer on the three biggest:

  • Twitter has a large chronic illness community, and I have personally found it easier to connect with other people through words rather than through pictures. For me, there’s a greater sense of going through the ups and downs of life with others on Twitter, which is helped by the fact that Twitter puts the posts of people you interact with most at the top of your feed. The best place to find other people is through Twitter chats, which occur at a set time. Look up #SpoonieSpeaks or #SpoonieChat if you are interested in finding out more. Or search for all of the most recent posts that use relevant hashtags like #fibromyalgia, #fibro, #spoonie, #chroniclife.
  • Instagram is another popular platform, where users post pictures, memes or inspirational quotes, and conversations occur in the comments section. You can also find posts clustered by hashtags, just like Twitter.
  • One of the biggest sites is, of course, Facebook. I have found that Facebook groups are the best part of this platform for providing chronic illness support. Larger groups tend to focus on answering questions and sharing information while smaller groups tend to focus on emotional support. If you’re concerned about privacy, or are looking for a support group, then a members-only group is the way to go – this is a feature that none of the other social media platforms have.

 

Too  Much Of A Good Thing: Common Pitfalls of Social Media Use

Even with the many benefits that social media use can provide, there are some drawbacks to consider. If you are feeling overwhelmed, sometimes scrolling through a feed of other people who are also struggling can make you feel like it’s all too much. Occasionally you may see someone turning symptoms into a competition (“mine are worse than yours”).

Keeping track of how many “likes” your post gets versus someone else’s post will feel about as good as any popularity contest does – it’s better just not to pay attention. Outside of the chronic pain community, many people use social media to present the false image of having a perfect life. Does anyone really feel better after half an hour of scrolling past all the happy pictures of high school friends going on exotic vacations, buying their first homes or having adorable babies? You might feel happy for them in principle, but seeing it all in one place is usually the opposite of uplifting. Research has found that scrolling through these types of social media posts can cause individuals to make negative self-comparisons to others, which in turn can worsen anxiety and self-esteem. In order to avoid this problem, you may find it helpful to create a profile dedicated only to connecting with the chronic pain community online.

Finally, it’s important to disconnect and make time every day to be present! Too much time on social media can be negative for your wellbeing. Even though we live with difficult symptoms, there are many simple pleasures to enjoy every day, like the taste of a good meal, noticing a pretty view, or sharing a hug with a loved one. Your virtual life shouldn’t get in the way of your real life. But connecting with social media is a blessing for those of us with chronic illness, as long as we practice ‘everything in moderation’.

Why You Should Use Social Media More If You Live With Fibromyalgia (1)

References

Merolli, M., Gray, K.,Martin-Sanchez, F., & Lopez-Campos, G. (2015). Patient-Reported Outcomes and Therapeutic Affordances of Social Media. Journal of Medical Internet Research 17(1).

Merolli, M., Gray, K., & Martin-Sanchez, F. (2014). Therapeutic Affordances of Social Media. Journal of Medical Internet Research 16(12).

 

Why Hard Work Doesn’t Pay Off in Chronic Illness: How to Stop Pushing Through Your Fatigue and Give Yourself Permission to Rest

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Why Hard Work Doesn't Pay Off in Chronic Illness How to Stop Pushing Through Your Fatigue and Give Yourself Permission to Rest

I’ve never been a big fan of napping. I was that overexcited kid, running around, yelling “No! I am not tired!” Moving on to the next thing I want to do has always seemed more interesting to me than stopping and sleeping. You can imagine how well that impulse has (not) translated into living with fibromyalgia. The metaphor I like to use is putting a racing car engine in a beat-up old car – my mind always wants to go faster than my body can keep up with. But it’s not just curiosity that pulls me forward. I also put a lot of pressure myself to push through, to keep working until it’s all done.

I’ve learned that always pushing forwards is toxic for my body. I’ve also learned that the impulse to soldier on isn’t a personal failing. Believing that “hard work pays off” is a social value, something we are all taught growing up.  We attribute positive character traits to people who spend long hours at work, without ever making time for themselves. We describe them as being committed, determined, effective, ambitious, responsible, and upstanding, rather than just calling them workaholics. The flipside – laziness – is a cardinal sin in our productivity-obsessed culture. But encouraging this imbalance between activity and relaxation serves to support unhealthy attitudes and behaviour around work.

I’m far from the first person to point this out. In recent years there’s been a movement to prioritize emotional wellbeing. You hear a lot about self-care, emotional balance, burnout, stress management, mindfulness, and disconnecting from social media, among other things. Psychologist Guy Winch, in his TED talk How to Practice Emotional First Aid, explains our favouritism towards physical well-being over emotional well-being. He points out that, while we learn from a young age to put a Band-Aid on physical injury, we don’t learn how to treat our psychological injuries, like sadness, loneliness, or anxiety. Psychological pain has a significant impact on the body’s state of health, and increases the risk of chronic disease. The mind and the body are interconnected, and what affects one has an impact on the other.

I think chronic illness magnifies the mind-body connection. Living in a state of constant physical fatigue has significant cognitive and psychological consequences. Brain fog, frustration, anxiety, a sense of helplessness, and many other responses are common among people living with illnesses involving chronic fatigue. Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center in Baltimore, says that “The emotional impact of a diagnosis of chronic fatigue syndrome is different for each person, but it relates to the loss of the ability to do the things you were good at before” (quoted in Everyday Health).

Put another way, fatigue causes people living with conditions like fibromyalgia, to experience multiple and complicated losses. These losses occur in areas that affect our sense of self-identity, like career, friendships, hobbies, parenting, and daily functioning. Kate Jackson (2014) calls them ‘infinite losses’ because they are not time-limited – instead they are unending, which makes them harder to resolve.

So, you might be asking, what does this have to do with taking a nap? For people who don’t live with chronic illness, resting might be a straightforward solution to fatigue. A physical solution to a physical problem. Even for healthy people, however, I doubt that’s always true. Call it stress, emotional overload, or burnout, the impulse to push through when you actually should stop and recover can result in significant psychological and physical problems. Our general preoccupation with work and productivity encourages unhelpful mindsets like perfectionism, shame, anxiety, guilt, and low self-esteem. In turn, these feelings and beliefs can cause us to double down and work even harder in order to measure up (Psychology Today). It’s very difficult to stop and listen to what your mind or body need when you’ve learned to routinely override those signals.

I’ve read countless tweets and blogs from people living with chronic illness who are frustrated with themselves for overdoing it on a good day and causing a flare-up. I’ve wondered why it seems so hard for me to pace myself, to proactively rest, to achieve balance between activity and relaxation. Over time I’ve realized these problems occur because resting is not just a habit. When the fatigue settles in it can often feel like a gate slamming shut.

Fatigue, along with pain, are the primary restrictions that have been placed on my abilities. The resulting frustration or sense of helplessness is a manifestation of the sadness and anger over the ‘infinite losses’ caused by chronic illness. Coping with these feelings is difficult. In this context, it’s a lot easier to say “just go and lie down” than it is to actually do it.

Behind the decision to stop and nap is a whole set of thoughts, feelings and beliefs about how you relate to work and productivity. If I’m writing an article and I feel brain fog and fatigue setting in, my first reaction is to feel frustrated with my body and tell myself to “tough it out.” Even when I take the reasonable step of stopping and lying down for awhile, there is a part of me that feels a creeping sense of guilt or self-blame. In a world where people with disabilities are applauded for “overcoming their limitations,” as if disability is a failure to move past, it’s hard not to worry if taking breaks is some kind of character flaw. I believe that it’s this mindset, this negative self-talk, that sabotages our attempts at pacing.

Becoming aware of our thoughts and feelings is a powerful way to take better care of ourselves – many people find that regularly practicing mindfulness meditation, journaling, or cognitive behavioural therapy techniques very helpful for developing greater self-awareness. Maybe I’m making a mountain out of a mole hill, but I think it’s important that we talk openly about the social and emotional impacts of valuing work and productivity over balance and acceptance. We need to prioritize healing the psychological as well as the physical. Because, ultimately, resting is an act of self-awareness, self-compassion, and self-acceptance, not just a solution for being tired.

Why Hard Work Doesn't Pay Off: Listening to Your Fatigue Instead of Fighting Through It

References:

Jackson, Kate. (2014). ‘Grieving Chronic Illness and Injury: Infinite Losses. Social Work. http://www.socialworktoday.com/archive/070714p18.shtml

Kromberg, Jen. (2015). ‘4 Difficulties of Being a Perfectionist.’ Psychology Today. https://www.psychologytoday.com/ca/blog/inside-out/201311/4-difficulties-being-perfectionist

Orenstein, Beth.(2010). ‘The Emotional Side of Chronic Fatigue.’ Everyday Health. https://www.everydayhealth.com/authors/beth-orenstein/

Winch, Guy. (2014). https://www.ted.com/talks/guy_winch_the_case_for_emotional_hygiene

 

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

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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

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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)