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

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.

The Pet Prescription: How a Stray Cat Named Sara Helped Me Learn To Be Braver & To Live More Fully Each Day, Despite Chronic Illness

I’m glad I didn’t listen to that voice of doubt in the back of my mind when it came to adopting a stray tabby named Sara. In a strange way, taking care of her has been an act of self-care for myself. She has become a part of our family and, besides all of the health benefits of adopting her, I think it’s the healing power of companionship and optimism that pets like Sara offer us most.

THE PET PRESCRIPTION: HOW A STRAY CAT NAMED SARA HELPED ME LEARN TO BE BRAVER & TO LIVE MORE FULLY EACH DAY DESPITE CHRONIC ILLNESS

 

sarah

Hello, I’m Sara, and I’m an affectionate, but shy, 3-year-old grey tabby. I like pillow forts, spying out the window and perching on your shoulder when you sleep.

Just over a year ago, we adopted a cat named Sara who is an affectionate, but shy, two-year-old grey tabby. Adopting a pet is good for your wellbeing. Pets enrich our lives and the benefits can be measured in health improvements: “According to the Centers for Disease Control and Prevention, pets… can help lower blood pressure, cholesterol levels, triglyceride levels, and feelings of loneliness. They can also increase opportunities for getting exercise and engaging in outdoor activities, as well as provide more opportunities for socializing with others” (Confronting Chronic Pain).

 

In particular, contact with animals has been found to benefit people living with chronic pain. For example, visits with therapy dogs at a pain management clinic was found to reduce pain and emotional distress in patients, as well as improve the emotional well-being of friends and family members who were there with them (Confronting Chronic Pain). Pets help reduce pain and stress, as well as give their humans companionship, and a sense of purpose.

One of the things I’ve learned from living with cats and dogs is that they wake up each morning optimistic about what the day ahead will bring. We see that in their excitement to play, their contentment snoozing in the sun and in their demonstrations of affection. They live fully hour to hour. When we share in those moments with them, some of that optimism inevitably wears off on us too. We love our pets and take care of them, as they take care of us.

IMG_20170409_102413
Lily was our 18 year old tuxedo cat. She loved playing goalie with tossed toys, petting sessions and sleeping on clean laundry.

Before we adopted Sara, we had a lovely 18-year-old black and white ‘tuxedo’ cat named Lily who lived to eighteen. She was originally my husband’s cat, and initially treated me like an interloper. But since fibromyalgia kept me at home, I became her constant daytime companion, the giver of treats and nearest available warm lap. We became friends and, eventually, family . She was always there for me on the hardest days when I felt unwell, and it meant a lot to me that I was able to be there for her in her golden years. The companionship and affection of a pet is an invaluable comfort during a fibromyalgia flare.

 

Our newest addition to the family, Sara, was abused in her first home and then went to a high-kill shelter. She was fostered by an animal rescue organization until we adopter her. The agency wanted to place her in a peaceful and quiet environment. That describes life at home with fibromyalgia to a tee. Living with a chronic illness necessitates a slow pace of life. I sleep late, wake up slowly with breakfast, coffee and the news; stretch and meditate; spend the afternoon writing and on the computer, with nap breaks in between; then I go for a walk when my husband comes from work; and we spend the evening together catching up on our favourite shows. Sara has lots of company, plenty of time for cuddles, and no one interrupts her cat naps. I gain companionship, the endless amusement that cats can provide (like watching non-stop cat videos) and the enjoyment of taking care of something other than my health.

As a person with chronic illness, living in a society obsessed with productivity, I often feel like a round peg in a square hole. My goals include learning to savour the small moments, staying present more of the time, and learning to take more time off and push myself less. The goals of my friends include career success, homeownership and completing their first triathlon next year. For them life is busy busy busy and for me it’s the opposite. There’s something wonderful about the fact that Sara fits into my lifestyle like a round peg in a round hole. My slow pace of life at home has been the exact right safe and healing environment she needed. Watching her learn to trust us and become confident enough to cuddle, sleep on our clean laundry, get into trouble and generally boss us around is such a bright spot in each day.

When you live with a health condition that’s lifelong, it’s easy to become habitually cautious about anything new – after losing many of my abilities, I have a lot of self-doubt about what I’m capable of. When we saw Sara’s picture and read her story online, I was torn between hoping we could provide her with the right home and the creeping doubt of trying anything new that people who live with chronic illness develop over time. I worried about the differences between looking after a geriatric cat you know well and an energetic two-year-old cat you’ve just met. Writing the animal rescue coordinator to start the adoption process was a spontaneous act of bravery and optimism.

Of course, there are things that I reasonably should not attempt to do because they will leave me feeling awful, such as working full time or attempting a triathlon. But that there are other things that I reasonably could attempt to do, but worry or a lack of confidence sometimes makes me hesitate. I’m glad I didn’t listen to that voice of doubt when it came to adopting Sara. In a strange way, taking care of her has been an act of self-care for myself. She has become a part of our family and, besides all of the health benefits of adopting her, I think it’s the healing power of companionship and optimism that pets like Sara offer us most.

Confronting Chronic Pain:

http://www.confrontingchronicpain.com/can-a-pet-help-with-your-chronic-pain/

.

 

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

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

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

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

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

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

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

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

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

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

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

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

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

First published in UK Fibro Magazine

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

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

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

chronic christmas (1)

A day in the life of an angry advocate:

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

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

Shouldn’t this be done by my pain specialist?

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

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

He’s too busy.

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

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

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

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

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

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

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

Are you f&*!ing kidding me?

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

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

So basically, HO.HO. HO.

Humbug.

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

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

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

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

Becoming the Author of Your Own Story

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

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

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

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

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

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

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

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

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

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

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

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

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

Reflecting and Expressing: The Inner Journey of Writing Your Story

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

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

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

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

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

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

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

References

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

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

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

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

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

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

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

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

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

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

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

Definition of Disability:

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

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

Is Disability an Individual Problem?

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

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

Disability as a Social Issue

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

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

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

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

Resources

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

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

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

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

Scope (The Social Model of Disability)

Mind Games: How I Cope During a Chronic Illness Relapse Using Brain Exercises

relapse

Around the holidays a couple of years ago, I got a bad cold which left me exhausted. Of course, I assumed that once I got better, my (limited) energy would return. It didn’t. I spent months in a state of brain fog and fatigue. By the mid spring, the relapse gradually began to ebb, although I still didn’t return to pre-viral levels for several more months.

The next holiday season, my pelvic pain increased substantially.  As I wait for more procedures, I worry about how I will cope with this ‘new normal’, which is interfering with my sleep and sometimes restricting my movement to the length of my heating pad cord!

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

My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. Now that I’m facing a similar situation, yet again, I wanted to write them out for myself –  I hope they may help someone else out there too. In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life.

1) Challenge Patterns of Negative Thinking: About a year after my diagnosis, I participated in a Cognitive Behavioural Therapy program for pain management. One of the core parts of the program was learning to identify negative thinking traps, or ‘cognitive distortions’.  These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves”.[i]

For example, if you think in “all or nothing” terms – a cognitive distortion – you might believe “if I can no longer pursue my career, I am a failure” (click here for a list of other cognitive distortions). A common belief among the participants in the group (me included) was: “Since I don’t work during the day, all I do is sit around the house wasting time”. The facilitator asked us to challenge this belief by making a list of all our daily activities. I was surprised to have a long list that included, for example, preparing my meals, going for a walk, reading a book, writing a blog post, doing my strengthening exercises, etc. I actually do quite a few things each day, and I rarely waste my time.

Now I try to identify when a negative thought is actually just a distortion and then challenge it with the reality of the given situation. I use a great app called ‘What’s up?‘ that lets you journal your thoughts and feelings, rate your mood and then connect them to any unhelpful negative thinking patterns (not an endorsement, just an honest review). It helps to get my head right instead of jumping to the worst-case scenario, which in turn helps me to feel better!

2) Be Present: One of the most powerful tools that has helped me to cope with my illness setbacks is practicing mindfulness, usually defined as “non-judgemental, present moment awareness”.

I attended a Mindfulness-Based Stress Reduction course at my pain clinic that introduced me to how cultivating presence could help me manage my pain.  Much of our anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in front of us at this moment in time.  Through mindfulness meditation, I have become better at recognizing when my mind as dwelling on the past or projecting into the future, and bringing my attention back to the present.

For example, I’m currently waiting on nerve block to treat my undiagnosed pelvic pain. I have a lot riding on whether this treatment will work – including being able to come off medications while my partner and I try to conceive. Just thinking about it makes me feel anxious and upset.  However, I won’t know anything until after the procedure, which is several weeks away.  Worrying about it now only makes me suffer more.  It’s better for my quality of life if I return my focus to the next best thing I can do for myself in this moment.

One reason I like the What’s up? app is because it includes several grounding exercises that ask you to identify things in your present moment environment, and bring you back to earth if you feel like you’re getting really caught up in a negative train of thought.  As my grandma used to say, worry about crossing that bridge when you get there!

Between spending time on your phone or binge-watching Netflix, it’s easy to become too distracted to enjoy the small moments in life. Meditation can help us relearn to stop and smell the roses. This is especially important for people living with chronic pain. Even during pain flares there are small moments of enjoyment if we stop and notice them — the taste of a good meal, sharing a hug, a sunny day, or a favorite hobby. Intentionally taking in the good moments by staying present while experiencing them is a powerful way to counterbalance the negative experience of feeling worsened symptoms during flareups or relapses.

[i] http://psychcentral.com/lib/15-common-cognitive-distortions/

How to Plan a Chronic Illness-Friendly Wedding

How to plan a chronic illness friendly wedding

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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

KATIE AND GEORGE_171

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.

KATIE AND GEORGE_9

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.

KATIE AND GEORGE_18

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!

KATIE AND GEORGE_108