Fibromyalgia & The Fear of Missing Out | Living with Fibromyalgia

A season six episode of the NBC comedy Brooklyn Nine Nine (I’m binge watching on Hulu) featured a scene that talked about the social construct of (FOMO) or “fear of missing out.” This was the first time I’ve really seen the term used in pop culture and it really got me thinking about fibromyalgia and missing out.

Oxford dictionary defines FOMO as:

a feeling of intense worry that an interesting or exciting event is happening somewhere else

The fear of missing out refers to the feeling or perception that others are having more fun, living better lives, or experiencing better things than you are. It involves a deep sense of envy and affects self-esteem. It is often exacerbated by social media sites like Instagram and Facebook where everyone is “stunting” and showing only the best most curated aspects of their lives and travels. All of this missing action can be anxiety inducing for everyone but especially those of us living with a chronic illness that already have internalized guilt and shame for not being as active as we once were.

Fibromyalgia and Missing Out

It is well known that living with fibromyaglia means missing out on a lot of life. It is this perpetual missing out that makes managing the illness so challenging. If one is not missing out in order to rest up so as to not miss out on a commitment coming up later; you are missing out because of a fibro flare or your body crashing because you over did it earlier in the day or in general. All of this coupled with a society and culture that tells us to do more and rest less or institutions that do not truly value vacation, sick time, or mental health wellness. We are all bombarded everyday in media and by our peers to push through, do more, and say yes; usually at the expense of mental and physical health. Most people cannot keep up. For those of us living with fibromyalgia and related conditions trying to keep up can be a matter of life and death.

Years ago in my fibromyalgia journey, I went through periods of experiencing intense feelings of guilt, anger and shame for not being able to do the things I wanted and keep up with social and career commitments. The constant push and pull of my body eventually became too much and led me to a nine-month long period of being bed bound from September 2012 – March 2013. I had to reshape my outlook and perspective in order to climb out of a dark psychological and painful physical place.

How I learned to minimize guilt from FOMO (and still learning)

  • Focusing on what I can do as opposed to what I cannot
  • I started blogging and writing poetry
  • I made real connections via online support groups where I could vent my frustrations but also took time to value the real life connections when I was able to make them.

Very Well Mind echos and expounds upon many of the strategies that have worked for me over the years:

  1. Change your focus. Rather than focusing on what you lack, try noticing what you have. This is easier said than done on social media, where we may be bombarded with images of things we do not have, but it can be done. Add more positive people to your feed; hide people who tend to brag too much or who are not supportive of you. You can change your feed to show you less of what triggers your FOMO and more of what makes you feel good about yourself. Work on identifying what may be sapping your joy online. Work to minimize these as you add more to your feed (and life) that makes you happy.
  2. Keep a journal. It is common to post on social media to keep a record of the fun things you do. However, you may find yourself noticing a little too much whether people are validating your experiences online. If this is the case, you may want to take some of your photos and memories offline and keep a personal journal of your best memories, either online or on paper. This can help you to shift your focus from public approval to private appreciation of the things that make your life great. This shift can sometimes help you to get out of the cycle of social media and FOMO.
  3. Seek out real connections. You may find yourself seeking greater connection when you are feeling depressed or anxious, and this is healthy. Feelings of loneliness or exclusion are actually our brain’s way of telling us that we need to seek out greater connections with others and increase our sense of belonging. Unfortunately, social media engagement is not always the way to accomplish this—you might be running from one bad situation right into an even worse one.

Living with fibromyalgia is journey not a destination

Of course, none of this is easy to do. As social media takes over more of our lives it can be easy to get sucked into the vortex of comparing ourselves to others. All the rest and care that is involved with living with fibromyalgia can be incredibly isolating. Trying to compare yourself to others makes is a recipe for disaster. Each of us manages the illness differently. Some are able to maintain a full-time job despite living with fibromyalgia; many others are not. What is important to keep in mind is that our individual talents and experiences are valuable and when we focus on our own abilities and less on what we cannot do and more on what we are doing, the fear and guilt of missing out lessens.

Living with fibromyalgia is journey not a destination and as long as we have to endure the challenges that this chronic illness brings into our lives there will always something that we are missing. Accepting this reality is not an admission of defeat but an act of strength and self-preservation.

golden tumeric milk

Golden Tumeric Drink | (Vegan + Anti-Inflammatory)

Tumeric has been a real game changer as I am in the process of taking a holistic approach for fibromyalgia management for the first time in ten years. I’m working on a more comprehensive post soon to share my process and experience but for now I am elated to share this tumeric-rich vegan “milk” drink that I am now taking every day before bed.

Tumeric has so many health benefits and anti-inflammatory properties that are a great aid to those like me living with chronic pain. This warming beverage is just one way you can incorporate more of it into your diet. I’ve adapted my version from the recipe found on the Minimalist Baker blog.

Golden Tumeric Drink adapted from the recipe found on Minimalist Baker 

Ingredients

  • 1 ½ cups full fat coconut milk (about one can)
  • ¾ cup almond milk 
  • 1 tablespoon coconut oil 
  • 2 teaspoons ground tumeric 
  • 2 teaspoons maple syrup 
  • 1 teaspoon pure vanilla extract 
  • ¼ teaspoon ground ginger 
  • ¼ teaspoon ground cinnamon 
  • pinch ground black pepper
  • (makes about 2 cups/ 16 ounces)

Preparation

  1. To a small saucepan, add coconut milk, almond milk, ground turmeric, ground ginger, cinnamon stick, coconut oil, black pepper, and maple syrup

  2. Whisk to combine and warm over medium heat. Heat until hot to the touch but not boiling – about 4 minutes – whisking frequently.
  3. Serve immediately, dividing between one 16 ounce mason jar
  4. Best when fresh, though leftovers can be stored covered in the refrigerator for 2-3 days.
  5. Reheat on the stovetop or microwave until hot.

The First 48 Hours After a Fibromyalgia Flare Up | Living with Fibromyalgia (REPOST)

Yesterday I literally thought I was dying. Honestly, I haven’t experienced such a severe 24 hour fibromyalgia flare in a long time. It came on as soon as I woke up Tuesday morning and lasted literally until 10 AM today. I don’t have the words to describe the feeling but I can describe my process of recovery for the next two days.

No matter how positive you think, or how mindful you are, there is just no way to dispute the fact that chronic illness sucks. Backwards and forwards. In and out. Up and down. All around; fibro stinks. Some days you wake up feeling deceptively great ready to take on the world. Most days you lie in bed angry, exhausted, and barely able to move wondering what you could have possibly done the day before to feel like you were ran over by a semi-truck. You relish the good days but you also rue the good days since good days usually mean you’ve push your body too far. So you wake up the next day wishing the day before never happened.

You are constantly thinking ahead. Reshuffling your invisible spoons, rearranging your schedule, re-prioritizing what is most important to get done and what can be put off until a better day. Trying to mark one more item off your to do list before your body most certainly gives out on you. Then there’s the fibro fog and memory lapses. The jolts of pain. And the fatigue. Did I mention the fatigue? ( I might have forgotten). You don’t know unrelenting, indescribable, nonsensical fatigue unless you’ve lived with fibromyalgia. This post could go on and on but I’ll spare you. I think the point has been made.

And for those of you living with or knowing someone with a chronic pain condition, this post is written to help you better understand the emotional, mental, and physical toll that chronic pain takes on many of us living with an invisible chronic illness; specifically following a fibromyalgia flare.

Since my illness happens to be fibromyalgia this post is written from my personal perspective. But understand that many of these emotions, feelings, and perspectives are shared across different illnesses and it is my hope that by sharing just a glimpse of what is so often unsaid I’ll bring just a little more clarity on the complexities that come with living with a chronic illness.

For me though, what may be the worst part of living with fibromyalgia is the inconsistency of the illness. Even though I’ve lived with fibromyalgia for 7+ years; every day I learn something new. Each time I “flare” and feel increased surges of all my symptoms, it’s always like the first time since what causes today’s flare up might not be what caused the last one. You see these high tides of fatigue and pain are best known in the fibro world as a flare. What exactly is a fibro flare you ask? Thankfully I made a whole post about it.

What is a Fibro Flare?

Simply put :

A flare is the worsening or exacerbation of symptoms that already exist,” says Daniel Clauw, MD, professor of anesthesiology, rheumatology and psychiatry at the University of Michigan in Ann Arbor. “Patients use different timeframes for what they consider a flare, but it’s generally several days or weeks of worsening symptoms. Anything shorter is considered normal waxing and waning of symptoms that someone with fibromyalgia can expect.”

You can learn more in my post here but what I most wanted to get across in this post is the emotional, mental, and physical pain that flares put on those of us living with chronic pain.

Guilt

Inevitably, flares hit us during the most inopportune times. Perhaps due to the subconscious stress of an impending big event, the physical toll of a long day, or even a sudden change in the weather the most common emotion that hits us during and after a flare is guilt. Guilt that we’ve had to cancel an important event. Guilt that we called into work again. Guilt that you let your friends or family down. The problem with guilt is that it is taxing to our already taxed systems. It is also insidious and has been one of the hardest emotions that I personally have had to learn how to manage.

Insecurity

Immediately after a flare; you begin to feel insecure. Questions like Did I push to far, can I begin again, should I go back to work, and can I handle my life begin to surface. It is easy to feel broken, embarrassed, and full of self-doubt. Sometimes I feel like I won’t survive another flare and I wonder how I’ve gotten this far. These feelings can linger for days after a flare has subsided.

Pain

Pain is a mainstay with fibromyalgia. Pain is always there even when it is managed by medication. Pain is unnatural to our bodies and sometimes it is hard to know exactly when flare pain begins and ends. Learning to exist day to day with extremely high levels of pain is something that those of us with fibromyalgia have learned to do very well. This constant pain is unnatural and can be worse immediately before or after a flare.

How Can You Help

This is just the surface of what happens after a person with chronic pain experiences a flare. If you are a caretaker, friend, or associate of somone living with an invisible illness it can be difficult to know how to help or what to do when your friend experiences a flare. You may feel helpless and not know what to do or say to best help. Come back on September 24th to learn how you can help.

To learn more about chronic pain and pain advocacy visit the U.S Pain Foundation

Salted Brown Butter Crispy Squares + Mini Smitten Kitchen Cook Book Review

While attending dinner at my friend and his wife’s home recently, I casually opened up one of their cookbooks and immediately fell in love. The book happened to be the first cookbook of the legendary food blogger; Deb Perelman of Smitten Kitchen. As  a foodie I had heard of the Smitten Kitchen blog but never followed it. Well, I must say after perusing several pages of the book I immediately fell in love.

Mini Review: The Smitten Kitchen

Deb’s recipes are simple, relatable and unfussy making them perfect for the everyday or occasional home cook. Deb’s prose is funny, personable, and amusing. I found myself taking screenshots of many of the recipes and quickly found that one of the most simple of them all was the recipe that I most wanted to try.

Deb took an American classic, Rice Crispy Squares and elevated them with simple real ingredients to make a delightful dessert that is not only simple but mouthwatering. This recipe for Salted Brown Butter Crispy Squares is the epitome of simple things are best and is now one of my favorite gluten free recipes.

Salted Brown Butter Crispy Squares

Ingredients

8 tablespoons (1 stick) butter
1/4 teaspoon kosher salt
2 tablespoons vanilla
5 cups Rice Crispy Treats
1 (10) ounce bag mini marshmallows

Preparation

  1. Coat with non-stick spray an 8-inch square cake pan with 2-inch sides.
  2. In a large pot, melt butter and vanilla over medium-low heat. It will melt, then foam, then turn clear golden and finally start to turn brown and smell nutty. Stir frequently
  3. As soon as the butter takes on a nutty color, turn the heat off and stir in the marshmallows.
  4. Remove the pot from the stove and stir in the salt and cereal together. Using a silicon spatula quickly spread into prepared pan.
  5. Allow to cool in refrigerator until  set (about one hour).

Source: Smitten Kitchen 

Homemade Vegan Hot Cocoa

I’m over winter! There I confessed. Even though there’s only 30 days (and counting) until Spring it seems like the winter has just started. The S.A.D is starting wear on my psyche and despite my attempts to see the bright side, I’m beginning to want to do nothing other than stay in bed all day hiding from the cold.

However, instead of giving into the feeling, I dragged myself out of the house today and went to an evening gentle yoga class. I’m so glad I did. My body felt so much better for it. Upon my arrival home I immediately pulled out my recipe below for Homemade Vegan Hot Cocoa and whipped up a steaming mug full. There’s nothing like vegan hot cocoa to warm your bones. I’ll keep the warm beverages coming while I continue to schedule self-caring treatments to keep my body healthy.

Homemade Vegan Hot Cocoa

Ingredients

1 cup unsweetened almond milk
1 cup coconut milk
4 tablespoons unsweetened cocoa powder
1/2 teaspoon pure vanilla extract
1/4 cup coconut palm sugar or stevia, or less

Preparation

  1. Add all ingredients into small saucepan heat until hot and well blended, stirring throughout until all ingredients are blended. Transfer to a mug, serve immediately.

Hot Cocoa Chocolate Bundt Cake

My bundt cake streak continues with this Hot Cocoa Bundt Cake that I tastespotted over on the Cookies and Cups blog. I took the best elements of this cake (the hot cocoa) and married them with my tried and true gluten free chocolate cake recipe. This is my first time baking my chocolate cake in a bundt pan and it turned out amazing. Get into the recipe and be sure to have a slice of this decadent cake for breakfast with a mug of hot cocoa or coffee.

Hot Cocoa Chocolate Bundt Cake 

Ingredients

dry

1 cup all-purpose gluten free flour blend
3⁄4 teaspoons baking powder
1⁄4 teaspoon baking soda
1⁄4 teaspoon salt
1⁄4 cup + 2 tablespoon dark cocoa powder

wet

3/4 cup + 2 tablespoons granulated sugar
1⁄4 cup vegan margarine
5 tablespoons + 1 teaspoon vegetable oil
1⁄2 teaspoon vanilla
1⁄2 cup rice milk
1⁄2 cup brewed hot chocolate (may use water or non-dairy milk)
2 large eggs

glaze

  • 1/2 cup vegan chocolate chips 
  • 2 tablespoons dry hot chocolate mix
  • 1/4 cup rice milk
  • 1 tablespoon vegan margarine

Preparation

  1. Preheat oven to 350F. Sift together the baking powder, baking soda, salt, cocoa, and sugar in bowl and set aside
  2. In a Kitchenaid stand mixer, cream margarine and sugar until light and fluffy; about 2 -3 minutes.
  3. Add the oil and continue mixing until the mixture looks like wet sand.
  4. Combine the rice milk, coffee (or other liquid), and vanilla and add all at once. Beat until just combined.
  5. Add the eggs, one at a time, beating well between additions.
  6. Spray Bundt pan generously with non-stick spray.
  7. Slowly pour mixture into Bundt pan
  8. Bake 60- 70 minutes
  9. Allow cake to cool completely before glazing

glaze preparation 

  1. In small saucepan over low heat melt chocolate, dry hot chocolate mix, rice milk and vegan margarine together until melted, stirring frequently
  2. Remove from heat and let sit for 10 minutes
  3. Pour over cooled cake

Source: Cookies & Cups 

Glazed Banana Bundt Cake

I’m elated to be back in the swing of sharing recipe development and food photography for all of my loyal readers here in 2019. My return to basics begins with this luscious Glazed Banana Bundt Cake which I tastespotted on the interwebs a few days after the new year. Naturally, I had every ingredient in my pantry right along with frozen overripe bananas. This cake got rave reviews at a recent potlock and makes the perfect early morning or late afternoon treat with tea or coffee

Glazed Banana Bundt Cake

Ingredients

dry

3 cups all purpose gluten free flour blend
2 teaspoons baking soda
3/4 teaspoons salt

wet

1 + 3/4 cups sugar
1 1/2 sticks unsalted butter, room temp
2 teaspoons vanilla extract
1 cup unsweetened applesauce
1+ 3/4 cup mashed banana (use overripe bananas)
2 eggs separated

Preparation

  1. Preheat oven to 350 degrees F.
  2. In a small bowl whisk together dry ingredients, set aside
  3. In a Kitchenaid stand mixer, cream butter and sugar until light and fluffy
  4. Add in separated egg yolks and vanilla
  5. Slowly beat in flour blend and applesauce until completely blended
  6. Beat in mashed banana, use a silicon spatula of white sides of bowl ‘
  7. In a separate bowl, beat separated egg whites until stiff peaks form
  8. Fold egg whites into mixture as the last step (batter will be thick)
  9. Spray bundt pan generously with non-stick spray
  10. Slowly pour mixture into bundt pan
  11. Bake 45-55 minutes

Source: Life Made Simple Bakes