Tag: spoonie

‘Twitchy Zombie’: An Incomplete List of the Many Varieties of Fibro Fatigue

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Fibro fatigue comes in different flavours. Like a wine taster, you become an expert at distinguishing all of the varieties of fatigue flavours. Who knew there were so many? Today, for example, I’m feeling like I pulled an all-nighter and had 5 shots of espresso. All I want to do is lie down and rest, but my body is practically vibrating, it’s so wired. I call it “Twitchy Zombie” fatigue.

Then there is the “Molasses Wader” fatigue flavour. You know, that feeling when every thought and every action feels like it requires the effort you would need to wade chest-deep in thick, syrupy mollasses? You can only function in slow-mo, but everyone else is zipping along on fast forward. Your brain just can’t keep up.

Other times, your brain slows, your breathing deepens, and you drift off to slee- Not so fast! Pain, like a rope tying your boat to the shore, keeps you tethered to wakefulness. You drift out to the outer reaches of consciousness, but can’t make it to dreamland. Often labelled painsomnia, I think of this as the “Hounds of Hell” fatigue flavour, where you are chained like a dog to your own wakeful pain hell-scape.

Another common fatigue is what I call “Nighttime Ninja.” You wake up and your body aches and you feel like you ran a marathon, then partied all night. Or, are secretly a night ninja. But definitely not like you slept restfully on a soft mattress under a cozy comforter.

What’s your fatigue flavour today?

#Fibro #ChronicPain #NEISvoid

How To Find Meaning Again When Chronic Pain Upends Your Life

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You’re sitting in the doctor’s office, being told you have an incurable illness. Maybe you have to leave your career, or pull back on your workload, with set accommodations. You can’t live up to being the involved wife, parent, sister or daughter you planned on being. Travel become difficult, athletic ability falls off, and favorite hobbies or pastimes become more challenging. But mostly you just don’t feel like you. A period of grief ensues over your previous life, and it crashes over you in waves.

Eventually you start asking the big questions. Can you live a good life despite pain? How do you find meaning again amidst all the change?

I don’t have THE answer, but I did find some answers. Why is something sustaining, nourishing, enjoyable? That’s what I had to ask myself in order to find meaning again. I came back to the saying, “A life well lived is a life fully experienced.”

I was very career focused B.F., finding satisfaction in the field of global health (HIV/AIDS prevention and treatment). Once all that stopped, I felt stuck and lost. The one thing I had been certain of, my “calling”, was gone. Making a difference through my career had given me a sense of purpose.

Before fibro, travelling was one of my favorite activities. Experiencing different cultures and ways of life was important to me because it had made my own worldview expand. Broadening my horizons made me feel vital and alive.

How to replicate that feeling from my couch at home? Can you broaden your horizons from home? Yes! By learning something new. On the traveling theme, free virtual live tours from local guides in English in Heygo are a lovely way to spend an hour. Time that feels spent on rewarding things makes it meaningful.

Learning via podcasts and audiobooks during my enforced rests turn a limitation into an adventure. I’ve found I enjoy learning about history, as a way to travel from my armchair. (I’m  a 🤓). Learning feels like time well spent, whether it’s listening to a historical mystery or an episode of a podcast on ancient Egypt. After all, curiosity keeps your brain healthy and young. What do you geek out about? It can be anything, from an academic subject, to a hobby, to DIY project techniques. Intentionally find ways to learn about things you find interesting, from online classes, podcasts, audiobooks, or just connecting with interesting people online and asking them questions.

Over time I came to see that there is a lot of life to live here, in ordinary life, without globetrotting or being career driven, which is what I believed at 20. But in learning to be mindful and still, I’ve found how much I missed before in my search for New Experiences, and how much being present enriches my life. Being on autopilot, or always looking ahead, meant I whizzed past sunsets, birdsong, long hugs, savoured meals, belly laughs and so many other moments. Connecting to the beauty and wonder all around us via our senses is possible, even while in pain, even at home. Finding ways to feel that makes life more worthwhile. Mindfulness as a practice, or just realizing the need to be present, means showing up for moments big, and small. Choose to stay with an experience instead of reaching for a distraction.

And the difficult experiences of chronic pain, surviving the limitations, still mean that you are living fully. I’ve grown in strength, resilience, compassion, self confidence and patience in ways I never would have before my illness. After all, what else really is the point of life other than to become a better, wiser version of ourselves on this journey? This is another way to have a purpose in life. I’ve come to value growing as a person as one of my most important accomplishments, instead of getting promotions, keeping up with the Joneses, or any of the other markers we are taught to measure our success by. Without fibro, I would have let external factors determine my self worth. It’s not that I’m grateful for fibromyalgia, or that I’m glad I have it, but I have found a way to make meaning out of it, and find a silver lining. I’m developing as I go; it’s a work in progress, but a worthwhile one.

I’ve written before about the critical importance to our happiness of self expression and contributing to something greater than ourselves. We are often taught that the only way to do this is to work and be a “productive citizen.” However, there are so many other ways to find connection, such as sharing your story and finding online relationships, to learn from and support others. Writing on my blog and now writing as a freelancer, has transformed my life. Supporting others online, teaching, mentoring, and sharing your experience are all ways to contribute, big and small.

Fiction writing has engaged me again in a new way through imagination. (I’m writing a historical mystery set in Niagara Falls during the American civil war, when the area was a hotbed of spies and intrigue). Creativity can be a form of salvation, as a craft, an art, music, interior decoration, in the kitchen, the garden, on the page, or anywhere else. We shift into an active mode, not passive mode when creating. Yet we also refrain from intellectualizing, analyzing, number crunching or any other left brain thinking. Creativity is about engaging intuitively, emotionally, and symbolically with the world, through self expression, using the right brain. It’s good for your heart; it’s good for your soul. Don’t disparage it as “unproductive” or unimportant, because it is a meaningful source of intrinsic pleasure. It’s meaningful because it’s a way of being open and engaging with the world around you (sensing a theme yet?), via your senses and interpretations, from your own unique perspective.

We find meaning in our relationships, in our faith and in our philosophies. But we have to be present, open and engaged to really benefit from these resources. That doesn’t happen overnight! But tuning in to our senses, our inner strengths, our creativity, our intrinsic interests and sources of pleasure allows us to connect to the world in ways that create and cultivate meaning in our lives. This is a form of strengths based healing – leveraging your inner resources to create a life fully experienced, and well lived – in spite of adversity.

Getting the Picture Across: Improve How You Talk About, and Think About, Chronic Pain Using Insights From Art Therapy

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Talking pain is hard (a number out of 10 doesn’t really say much!) Learn how to harness the power of images to communicate about your pain more effectively, to reduce pain through visualization strategies, and to express yourself emotionally and intuitively about the experience of living with pain using art therapy insights.

Getting the Picture Across: Let's Talk About How We Talk (and Think) About Chronic Pain

It‘s almost funny that the single word pain is supposed to mean all of the different sensations you feel when you live with a chronic pain condition. The numbering system out of 10 doesn’t capture chronic pain very well. Are we adding all the pains up and finding an average, or talking about one painful area at a time?. Beyond the intensity of pain, what about the quality of the pain? Often, I find it hard to describe in words how different ‘pains’ physically feel, especially to someone who does not have chronic pain. Sometimes a metaphorical image captures it best.

Images can elicit a very physical response, bypassing the analytical parts of your brain. If I describe the sensation of a dentist drill, whirring away, drilling a hole deep into my spinal column, how do you feel? In contrast, imagine I describe being in a forest, with sunshine streaming through the leaves and dappling the forest floor – do you feel more relaxed? That’s the power of our imagination to affect thoughts and feelings.

Visual Metaphors Can Improve Communication By Evoking Empathy Mirror Neurons

Visual metaphors are better able to evoke understanding and empathy in others than other means of communicating (G. D. Schott). If I tell you about a large needle being slowly inserted into my eyeball, your reaction is likely to cringe, grimace and/or squint your eyes.

When you hear someone describe an image of something happening to them, your brain will “mirror” that experience – you imagine what it would literally feel like for the same thing to happen to you. In fact, we have neural pathways, called mirror neurons, devoted to empathizing with other people this way: “both mirror neuron and alternative neural networks are likely to be enlisted in the empathetic response to images of pain” (G. D. Schott). Using visual metaphors can help you to describe your pain better to your doctors and your family and friends. Here are some common images and metaphors for chronic pain to consider using.

Nerve pain brings to mind intensity, heat and electricity. My sciatic pain can feel like a zap of electricity – a sudden, searing, mini-bolt of lightning. Pain is often compared to a burning or searing fire. Describing a sharp stabbing feeling, like a hot knife, can really help to get the picture of how your pain feels across.

Muscle pain might be best described as a tool-kit wielded by a sadistic handyman. The drilling in my head referred from spasmed neck muscles, the throbbing ache in my SI joint like a hammer pounding down on the spot. It’s also common to describe pain as a tormenting animal, clawing, tugging or squeezing the painful area of the body.

Deep, internal pain can feel like the pressure of a bowling ball, or worse, an anvil, suddenly teleported pressing down on the painful area. Some tools from the sadist’s toolkit might join the party, like pliers pinching or an ache that feels like a vice grip being tightened.

Take a deep breath after reading those descriptions. They can be stressful to contemplate, because it may bring to mind all the different pains you feel at once, and/or activate your mirror neurons so that you’re imagining many types of pain at once. Luckily, the power of visualization can be used not just to describe pain, but to reduce it as well.

Use The Power Of Your Imagination To Manage Your Pain

Visualizing can be a potent way to ease pain and shift attention. Imagining a soothing, or more positive mental picture can significantly lower levels of the stress hormone cortisol. When you enter a relaxed state, your brain releases endorphins, which are natural pain-relieving biochemicals. Using your imagination is a helpful way to distract from focusing on pain, which is likely another reason that visualization can help to manage pain. Numerous studies have demonstrated that guided imagery reduces pain and improve physical function.

Guided imagery often involves visualizing tranquil natural settings, like walking on the beach or in a garden. The visualization should incorporate all of your sense. For example, a beach visualization would include the mental image of a beach, but also the sound of the surf and the cry of seagulls, the smell of salt air, the feeling of sand under your feet – you get the idea. There are many websites, CDs and apps that provide sessions you can listen to if you’re interested in using this technique.

Another technique involves reframing your original visual pain metaphor or replacing it with a pain reduction visual metaphor. For example, if you feel like your pain sensation is like being pricked by hot needle, then you reframe visual to be a cold needle. After concentrating on that, you can imagine the needle itself becoming soft, like a string of spaghetti.

Guided visualization to soothe pain involves minimizing, distancing or numbing the pain sensation. You can imagine the warm oil being poured over tight muscles, for example, or ice freezing out burning sensations. The secret to success with any visualization technique is practice and repetition – it becomes more effective the more you do it.

A Picture Is Worth 1000 Words: Express Yourself Using Art Therapy

Envisioning pain can also go past physical sensations into describing how the pain impacts your life. If I was going to draw a picture of my fibromyalgia, it would be like a cage. I often feel trapped within limitations of what I’m able to do for the pain flares and I have to stop. Chronic pain can feel like an alarm that is always blaring – like trying to work through a fire drill. I would probably use colours like red and orange or grey and black to describe The ‘feel’ of pain.

Not surprisingly, exercises that get you to draw your pain/health condition are also helpful to relieve stress. “Expressing oneself through [art] makes our thoughts, feelings and ideas tangible and communicates what we sometimes cannot see through words alone” (Psychology Today). Creative expression is quite healing, even if it’s limited to abstract doodles or colourings. Drawings and collages can also picture positive images that evoke well-being.

What is a visual metaphor for your pain? If you had to draw an image of your chronic pain condition, what would it look like?

Resources

Psychology Today (Picture Of Health: An Art Therapy Guide) https://www.psychologytoday.com/ca/blog/arts-and-health/201703/drawing-picture-health-art-therapy-guide

Arthritis (Guided Imagery For Arthritis) https://www.arthritis.org/health-wellness/treatment/complementary-therapies/natural-therapies/guided-imagery-for-arthritis-pain

Calgary Neuropathy Association (Visualization And Pain Management For Neuropathy) https://calgaryneuropathy.com/visualization-pain-management/

Brain (G. D. Schott: Pictures Of Pain And Their Contribution To The Neuroscience Of Empathy) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4408436/

Fear and Hope: The Hidden Realities of Being Chronically Ill In the Time of Coronavirus

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Right now is especially hard on those of us who are sick already. The safety nets that each person has – medical care, social support, financial security, and access to basic necessities, among others – are being sorely tested at this time. But the individual safety nets of people with chronic illness are already weakened, and when you add a pandemic, they fray even more. We have to hope and pray that they hold.

Spring. It’s a beginning. More than that, it’s a beginning that starts in the cold and the dark. In the middle of winter, it’s hard to believe spring will come. But it does. I’ve taken photos of spring flowers to remind myself of that fact.  I hold on to the fact that the deep resilience and strength that everyone with a chronic illness has developed will help to get us through this time.

Physically, the risk of getting coronavirus has higher stakes for the chronically ill. Even if you are not immunocompromised, the fear of getting a terrible illness flare up, or setback is real. A cold virus once caused me debilitating fatigue for months, so of course I worry what coronavirus could do. My husband worries even more on my behalf than I do!

The financial crisis ahead will disproportionately hurt the chronically ill, who are far more likely to be underemployed or unemployed than the non-ill. I feel lucky my husband’s salary can support both of us, since I can’t work, although things in a single income family are often tight. But for years, many of those with chronic illness have lived in poverty on inadequate government disability assistance. Suddenly, the government has found the resources to give individuals who have just lost been laid off because of covid-19 as much as double the amount allocated for disability benefits. 

To be clear, I don’t begrudge anyone who has recently gotten emergency government financial assistance due to coronavirus. That’s the right thing for our governments to do, and in fact, they should give more than they are. But when the chronically ill and disabled get half as much on a regular basis – an amount that is below the poverty line- it feels like our governments are saying people like us are worth half as much. Meanwhile, many are still trying to get by on the inadequate amount given as disability assistance during the lockdown without any additional supplementation. 

We’re still living in an ableist world  in the time of coronavirus. There’s no way that I can stand in line for half an hour or longer to buy groceries or pick up prescription refills on my bad knee. But God help you if you want schedule grocery delivery. There are no times available, for love or money. My husband is able to try and shop around his work schedule, and I’m lucky to have that help, when others are on their own. In some cases, neighbours and strangers have stepped up to help out the chronically ill who iive alone, and that increases my faith in humanity a little bit more.

Like so many, all of my appointments and procedures have been cancelled. From monthly physiotherapy that helps to bring down regular flare ups, to a long scheduled nerve ablation that is supposed to reduce my neuropathic back pain, all of these pain management tools are now on hold and I’m trying to make do the best I can.

I won’t lie, it has been harder to sleep, which triggers more flares of pain. I feel more irritable, especially if I spend too much time on the news or social media. Regulating my news diet helps to bring some of the stress down. It’s just not feasible to try to worry about every corner of the world at once!

At the moment, it seems like everyone and their grandmother are having Zoom chats with all the people they’ve ever known. If I read one more post about how wonderful all this reconnecting is I think I will get an eye twitch.

Chronic illness is isolating for most of us. When you cannot regularly meet up with friends or join community events or chit chat with neighbours at the dog park, then your social support system shrinks. I’m fortunate to have a couple of good, old friends who have stuck with me. And since I’m old school, I skype with them on occasion (sorry, zoom!).

But I’ve lost a lot of friends and family members along the way. It’s hard to think about the people who were more fair weather friends at a time like this when we could have been there for each other.

That being said, I’ve learned to embrace solitude more over the years. This is the time for distraction therapy: writing, knitting, painting or whatever creative pursuits you have wanted to try. Or maybe just appreciate the creativity of authors, actors and musicians by reading, watching shows and listening to music that you’ve wanted to check out but haven’t had time until now. Here’s a list of my favourite free distractions to help you make the most of this time, despite the pain and fatigue.

Frustratingly, I had just started going to a local library book club before the pandemic hit and had found a new local fibro group I was hoping to go to. Looking forward to book club got me through some difficult days- thinking, “well, at least I’m living a little”. Same with going out to a cafe once in awhile with an audiobook, ted talk or an online course lecture. Those small things helped me to regulate my feelings about chronic pain- counterweights of connection and enjoyment to the isolation and limitations of illness.

Now though, that’s not possible, or re-creatable. When bad days hit now, it’s hard to know what to turn to other than a lot of distraction. Fortunately, there are some excellent online support groups, like Medical Musings for Friends on Facebook, or the general chatter of #chroniclife #spoonie #chronicpain #fibromyalgia on Twitter.

I hold on to the hope that this season will pass and a new spring will bloom, when we will be able to access the treatments and supports we need again, and build the relationships we want. Now more than ever, I value the strength I’ve gained, my current relationships (IRL and virtual), and mindfulness of simple enjoyments, like spring flowers, that I can savour. I hope I can carry the intention to focus on these things into the next season, post-coronavirus. We have strength forged by surviving our illnesses, and we can trust in our own tenacity and resilience during this time. Self-compassion and kindness can also go a long way right now. We need to give ourselves a break at present, since we’re all just muddling along trying to figure this thing out the best we can, one day  at a time.

 

Go Beyond Self-Care: Why We Need To Talk About Self-Compassion Instead

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Why We Need To Talk About Self-Compassion Instead

 

Bubble baths. Lit candles. Dark chocolate. Steaming cups of tea. These are the self-care recommendations we are regularly encouraged to add to our daily lives. I love these things as much as anybody else. But adding a list of temporarily enjoyable activities to your to-do list is ultimately only the frosting on the cake. It feels good, but it doesn’t substantially change anything. In fact, sometimes these activities can feel like extra obligations; something the average super-woman or man is expected to fold into their life, along with all the other demands on their attention.

Self-compassion means “cherishing yourself in the midst of emotional pain and distress” (Germer, 2009).[i] When you hear about a struggle that your best friend, child, partner or other loved one is facing, the feelings of support, good-will, and love that you feel for them together represent true compassion. Sadly, it’s much harder to feel those things for ourselves. Often we respond to challenging circumstances by criticizing ourselves for getting into the situation or pushing ourselves too hard to get out of it. This just piles on suffering on top of suffering.

In contrast, befriending yourself, and intentionally directing compassion towards yourself, changes your relationship to difficult thoughts, feelings and experiences. It sounds easy, but treating yourself with the same acceptance, kindness and understanding you extend towards your friends and family members is something very few people actually know how to do.

What Is Self-Compassion?

Researcher Kristin Neff has identified three elements of self-compassion– self-kindness, mindfulness and common humanity.[ii] Each element of self-compassion corresponds to an opposite element of negative emotional reactivity that increases suffering; namely self-judgment (the opposite of self-kindness), self-preoccupation (the opposite of mindfulness) and isolation (the opposite of common humanity). Let’s delve further into what each of these terms mean.

  • Self-kindness means to react with warmth and understanding to your own flaws and mistakes. By adopting this attitude, you treat yourself like a friend experiencing a setback rather than a critic evaluating a performance (self-judgement). Self-kindness means offering yourself the support and comfort that a close friend would. In a difficult moment, ask “what is the best thing I can do for myself right now?”
  • Mindfulness in self-compassion involves acknowledging the temporary and changing nature of your own thoughts and feelings, seeing that they come and go like clouds in the sky. Instead of ruminating on or avoiding feelings grief or frustration about the losses and limitations that chronic illness imposes on our lives (self-preoccupation), we recognize them, feel them, and let them move through us. Tara Brach says that “compassion honours our experience; it allows us to be intimate with the life of this moment as it is.“[iii]
  • Common humanity means saying to yourself “I’m only human, just like everyone else,” instead of feeling alone in the world with your difficulties (isolation). It involves taking a wide perspective, remembering all the people in the world who also live with chronic illness, and knowing that it’s more than likely that someone else has been in the same spot you’re in. After all, having an illness or disability is a common thread woven into the fabric of human experience.

Self-Compassion Meditation Practice

Self-compassion sounds good, but how do you actually put it into practice? How do you go about befriending yourself and changing your approach to coping with difficult circumstances? A type of meditation called loving-kindness meditation, which a secular practice based on traditional Buddhism, can point the way. Sharon Salzberg, a pioneering meditation instructor who brought loving-kindness meditation to the west, describes it as “a living tradition of meditation practices that cultivate love, compassion, [and] sympathetic joy.”[iv] Based on the common principles of kindness, mindfulness and connection to our common humanity, I use the terms loving-kindness and compassion interchangeably. It may sound a bit sappy, or feel awkward at first, but that shouldn’t get in the way of pursuing your best interest.

In  loving-kindness meditation practice focused on direction compassion towards the self, the focus of awareness is the silent repetition of specific phrases in your mind. Your loving-kindness practice could use the following phrases:

May I be safe – we wish for safety in the first line because being free from danger is a prerequisite for well-being

May I be peaceful – a wish for equanimity in the midst of the unpredictability of chronic illness

May I live fully in the present – a wish to live whole-heartedly, to live a rich, fully experienced life

May I embody love and kindness – this is a wish to be compassionate to our bodies, even if they suffer

May I live with ease – a wish for daily grace in our lives, a lessening of our burdens and struggles

Try sitting with your breath for a minute, and then repeating these phrases several times. Or you can say them silently to yourself during a difficult moment.

When we say each phrase, we are setting an intention to be a good friend to ourselves, like planting a seed. We will reap the harvest – experience compassion for ourselves – in the future. As Christopher Germer (2009) explains, loving-kindness meditation is about learning to feel goodwill towards ourselves, not to generate good feelings in the moment. Each phrase is an expression of hope for the well-being of your future self. And just like you hope for nothing but the best for your loved ones and friends in the days and years to come, the phrases of loving-kindness help you to cultivate this “inclination of heart” toward yourself (Germer, 2009).

What Does the Science Say?

Loving-kindness meditation can reduce chronic low back pain, according to a pilot trial (Carson et al., 2005).[v] Compared to standard care, individuals who participated in the eight week compassion meditation program had lower levels of pain, distress, anger and tension. A second study looked at whether compassion meditation could reduce negative mental states, in addition to decreasing pain levels (Chapin et al., 2014).[vi] Participants in the nine week loving-kindness meditation course reported a moderate reduction in their pain severity. Importantly, participants and their significant others also reported a decrease in negative emotional states like anger by the end of the program.

After a seven week loving-kindness meditation course, one study found a cumulative increase in daily positive emotions, regardless of whether the participant meditated on that day or not. The overall increase in positive emotions was associated with a significant increase in positive personal resources, like self-acceptance, mindful attention, a sense of purpose, and developing supportive relationships (Fredrickson et al., 2008).[vii]

Whether you do a formal practice, or just consciously remind yourself in challenging circumstances of the principles of self-compassion – kindness, mindfulness and common humanity – ask yourself – if a close friend of yours was in the same situation, what would you say to them? Most likely you would encourage them to go easy on themselves. You would tell them that they don’t need to be perfect, and remind them it’s okay to have bad days. Practice saying these things to yourself. Then offer yourself comfort by saying “what is the best thing I can do for myself in this moment?” This is when the list of self-care activities take on a deeper meaning – a symbol of the self-kindness you are cultivating. I hope that taking this approach helps to reduce your suffering and increase your wellbeing in a more substantive way than discussions of self-care can typically promise to do.

Find other articles on fibromyalgia at the Fibro Bloggers Directory

Go Beyond Self-Care Why We Need To Talk About Self-Compassion Instead

[i] Germer, Christopher. (2009). “Chapter 4: What’s Self Compassion?” in The Mindful Path to Self-Compassion. Guildford Publications: New York.

[ii] Neff, Kristin. (2012). “The Power of Self-Compassion.” Psychology Today. Retrieved September 1, 2019 from https://www.psychologytoday.com/ca/blog/the-power-self-compassion/201207/the-physiology-self-compassion

[iii] Brach, Tara. (2003). “Chapter Two: Awakening From the Trance” in Radical Acceptance. Random House: London.

[iv] Salzberg, Sharon. (2011). “Introduction.” Lovingkindness: The Revolutionary Art of Happiness. Shambala Publications: Boston.

[v] Carson, JW et al. (2005). “Loving-kindness meditation for chronic low back pain.” Journal of Holistic Nursing: 23(3): 287-304.

[vi] Chapin, Heather et al. (2014). “Pilot Study of a Compassion Meditation Intervention in Chronic Pain.” Journal of Compassionate Health Care 1(4).

[vii] Fredrickson, Barbara. (2008). “Open Hearts Build Lives: Positive Emotions Induced Through Lovingkindness Meditation Build Consequential Personal Resources.” Journal of Personal Social Psychology 95(5): 1045-1062.

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!

How to Plan a Chronic Illness-Friendly Wedding

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How to plan a chronic illness friendly wedding

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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

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

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

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

Here’s how we kept costs under control:

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

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

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

 

 

 

3. Organize brain fog away

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

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

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

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

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

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

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

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

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“If It Was Me, I Would Just Give Up”: How Not to Compliment Someone Living with Chronic Illness

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How Not to Compliment Someone Living with Chronic Illness

“You’re so strong. If it was me, I would just give up”

If you live with a chronic illness, you’ve heard this type of “compliment” over and over.  A well-intentioned friend, family member or colleague shakes their head at your everyday challenges, and says “I don’t know how you do it; if it was me, I would just give up and lie in bed all day“.  My stomach always twists when I hear these words.  I know it is meant as praise, to recognize the strength it takes to get through each day in spite of all the symptoms of chronic illness.  But if you say this comment to someone living with chronic illness, know that they will not feel flattered or pleased. When you express these sentiments, what you are communicating is that you don’t understand the nature of their daily struggle or how that comment invalidates their sense of worth. If you are a spoonie, I hope this post helps you find your own words to enlighten your friend or family member on how to compliment you. If you are someone who cares about a spoonie, I hope this might help you find a better way to express your admiration and encouragement.

“Where do you find the strength? I would just quit even trying”

 I frequently see social media posts by frustrated spoonies (people who live with a chronic illness), venting about how this type of comment makes them feel. It seems to be the most common way people try to praise spoonies. I think I am a stronger and wiser person after my experiences living with fibromyalgia. If my friends or family notice that change and want to recognize that fact, I wish they would say it as a positive about me, rather than frame it as a negative comparison on themselves. For example, I was discussing with my friend that I think I am coping with a recent setback in a healthier and more positive way than during the first years of my illness. A positive compliment from her would be something like “I think it’s amazing how you are just taking it one day at a time and staying positive even though I can see how difficult the situation is”. A negative comparison on herself would be “if it was me, I would just be wondering why the universe is conspiring against me – I could never see this in a positive light the way you do, it’s amazing.”

“It’s amazing that you even get out of bed every morning”

I’ve always struggled to respond when someone says something like this to me.  If I express a negative reaction, I’m afraid my friend will reply “I don’t understand, all I’m trying to say is that I think you’re great”. I never know how to put into words why, despite that intention, it makes me feel anything but great. I’m going to try to explain it here.

The simple reason that I don’t just give up and lie in bed all day is because that’s not a real option.  I don’t have the luxury.  It’s not a meaningful choice when you live with a condition that has no cure. This comment upsets me because it ignores the reality that I don’t choose to struggle through each day, I am forced to. The reason I don’t lie in bed all day (besides the fact that I would find it really uncomfortable) is not that I’m especially strong or heroic.  It’s because lying in bed all day would be mean giving up on surviving. At some point, you have to make a meal, take your kid to school, or have a shower – and you’re going to want to do that with the least amount of discomfort possible. Living necessarily means having to fight through all of my daily struggles.  That fighting spirit and strength, for me, is just the nature of living day to day.  I know perfectly well that if that same healthy friend who says “I would just give up” actually did develop a chronic illness, they would wake up every morning and try again, too.  Just like we all do.  Because we have to. I like to think that it’s human nature to survive, to put one foot in front of the other, and to keep on keeping on.

“I couldn’t face it day after day, I don’t know where you find the willpower to just get up and try again”

Beyond this, the main response most people living with chronic illness have to this form of praise is that they find it invalidating. While a life with an invisible illness or disability is challenging, the funny thing is, we still want to live it.  We still share love, have passions, make contributions, make art, and have dreams. Our lives are worthwhile and meaningful.  They are worth living.  Even with all the difficulties.  But when the main reaction to seeing what a day in the life of a person with chronic illness looks like is to say “I would just give up,” it invalidates the worth of living that life. It definitely is not a compliment! One person on social media wrote something like “so what, you think my life is so terrible that I should just curl up and die? thanks!” When I remember being healthy and non-disabled, I know that I was always amazed by people who were sick or handicapped but still vital and active-  and wonder whether I would be able to enjoy my life if I was in their situation. It’s a common reaction, but I think one that’s unhelpful to share. Instead, I hope the friends and families of spoonies will try to frame their compliments as positives about the person they care about, without any negative reference to themselves. Here are some more examples:

“I really admire the strength you show in trying all of these treatment options when I can see it isn’t easy”

“I think you showed a lot of grace under pressure when you experienced that setback”

“It took a lot of guts to pursue something you’re passionate about despite all of the recent challenges”

Digestively Challenged: Overcoming G.I. Tract Problems when you have a Chronic Illness

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Digestively Challenged: Overcoming G.I. Tract Problems when you have a Chronic IllnessIs eating well with chronic illness a luxury? When I first got diagnosed, I thought so. The significant pain I was experiencing in the muscles around my shoulder blades made it impossible for me to chop, stir, or sauté a whole meal – basically, to cook. My partner was more than happy to help (as long as I showed him how!), but it felt unfair. After all, he was now supporting me financially and doing the majority of the housework – since laundry, vacuuming, scrubbing and dusting were similarly impossible for me. We tried to eat the healthiest convenient foods we could. Unfortunately, convenience isn’t healthy, at least when it comes to eating. In a previous post, I wrote about how my processed diet failed me, even though I was making supposedly healthy choices. In one year, I gained about 20 pounds, ate four times the daily recommended allowance for sugar, was woefully short on fruits and vegetables, ate too many servings of grain and too few servings of protein.

I also had hypoglycemic attacks if I did not eat on time. I remember that panicky feeling of being on transit, far away from a convenience store, and starting to feel shaky and sweaty.  I also developed a number of food intolerances.  I felt anxious about eating out or trying a new recipe for fear of having an ‘episode’.  Not only did I have unpleasant digestive symptoms but also strange neurological ones – sweating, pulse racing, excessive salivation, skin crawling, restless legs, and others.  It was these two problems that made me feel like I needed to understand what was going on in my body and to regain control over my eating. It’s important to begin with a good understanding of digestive problems that affect spoonies (people living with chronic illness).

Firstly, we need to avoid food intolerances (also known as food sensitivities). Food intolerances are defined as a physical reaction to eating certain foods, such as digestive symptoms like bloating, gas, diarrhea or constipation, or stomach cramps.[i] These reactions do not occur because of an immune response to a particular food – that would be defined as a food allergy. In the case of a food intolerance, some people may be able to eat a small amount of the trigger food without having a physical reaction, up until they reach a threshold level. Food intolerances may occur because of the absence of a necessary enzyme (such as lactase to break down lactose sugar in dairy), having irritable bowel syndrome, having a sensitivity to food additives, having a problem digesting certain carbohydrates (acronym FODMAPS), or for no known reason. Food sensitivities may be more common among people living with fibromyalgia and CFS/ME because of the overall sensitization of the central nervous system associated with these conditions. Research indicates that at least half of people with FM or CFS/ME experience significant relief by eliminating certain foods.

How can you figure out what foods you are sensitive to? Naturopathic doctors, integrative doctors and nutritionists can offer tests that pinpoint sensitivities. However, the least expensive way is to do an elimnation diet. You begin by cutting out the most common foods that cause intolerances and any foods that you are suspicious of for a period of time, usually 2 to 4 weeks. These foods may include: dairy, gluten, eggs, soy, corn, sugar, citrus, peanuts, shellfish, and coffee. Then you gradually reintroduce one food type at a time to notice your physical reaction. If your symptoms reappear, then you know you are sensitive to that type of food. In my case, I am intolerant of eggs, red meat, and to a lesser extent, wheat. I am also sensitive to high concentrations of fiber or resistant starch. The elimination diet is best done with the guidance of your healthcare professional.

A second problem associated with the digestive system and chronic illness is the development of Leaky Gut Syndrome. Essentially, leaky gut occurs when the lining of the intestines becomes more permeable, which allows particles of partially digested food or waste to leak into the bloodstream.[ii] Increased permeability occurs because of damage to the tight junctions between intestinal cells. When the immune system encounters foreign particles in the bloodstream, it launches a response, including inflammation. Symptoms of leaky gut syndrome include digestive symptoms, gas, bloating, diarrhea, fatigue, joint pain and rashes. In addition to chronic inflammation, leaky gut syndrome affects the ability to digest food and to absorb nutrients. Furthermore, it compromises the immune system by tying it up responding to foreign particles in the blood, which leaves it less able to respond to actual pathogens. The intestinal lining actually is a significant site of immune activity, but when it is damaged, overall immune function is impaired. How does the intestinal lining become damaged? Through food intolerance, stress, medication, flora imbalance and autoimmune disease. Emerging research shows that several autoimmune diseases share increased intestinal permeability as a characteristic[iii].

In terms of diet, the usual recommendations include treating Leaky Gut Syndrome through clean eating; in other words, avoiding commonly allergenic/intolerant foods, inflammatory foods, pesticides, herbicides, additives, or sugar and rebalancing intestinal flora by consuming probiotics. For autoimmune diseases in particular, some experts recommend the paleo diet, which emphasizes protein and vegetables, while cutting out grains and legumes. For example, Dr. Terry Wahls has written a book on how she reversed her MS through a nutrient dense paleo diet. Supplements that can help to repair the damaged intestinal lining and reduce inflammation include l-glutamine and DGL.

When it comes to diet recommendations, I think the most important thing to remember is that we are all genetically diverse. We will all have unique responses to different foods and there is no one-size-fits-all diet. For example, I feel terrible after eating eggs or after eating a large portion of cruciferous veggies (broccoli, cauliflower, etc) because I have a food intolerance to eggs and  am sensitive to large portions of insoluble fiber. The paleo diet isn’t for me. However, a high-protein vegetarian diet keeps my digestion happy, hypoglycemia at bay, and generally gives me more energy. The only universal truth when it comes to nutrition is that nobody benefits from eating a diet high in processed foods, sugar, sodium or fat. We all feel better on a whole foods diet. It can seem overwhelming to change your diet when you are dealing with the multiple, uncertain symptoms of chronic illness. The potential to improve your quality of life is worth the effort in experimenting to find what works. Here are a few resources to help you get started:

  • 100 Days of Real Food is a resource for transitioning to a diet free from processed foods (includes blog, meal plans, challenge, cookbook) http://www.100daysofrealfood.com/

Read other great blog posts by writers with FMS on the Fibro Blogger Directory http://www.fibrobloggerdirectory.com/

[i] http://www.mayoclinic.org/diseases-conditions/food-allergy/expert-answers/food-allergy/faq-20058538

[ii] https://www.womentowomen.com/digestive-health/healing-leaky-gut-syndrome-open-the-door-to-good-health-2/

[iii] http://www.todaysdietitian.com/newarchives/021313p38.shtml