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

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!

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How to Plan a Chronic Illness-Friendly Wedding

How to plan a chronic illness friendly wedding

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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

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

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

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

Here’s how we kept costs under control:

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

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

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

 

 

 

3. Organize brain fog away

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

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

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

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

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

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

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

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

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

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

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