Reflections On Living with Fibromyalgia On Fibromyalgia Awareness Day

Dear Community,

Today is Wednesday May 12, 2021 and it also happens to be National Fibromyalgia Awareness Day.

It’s been 11 years since I was diagnosed with fibromyalgia in the fall of 2010 and my life has never been the same.

11 years of ups and downs.

11 years of learning how to live a full life as a disabled person.

11 years of turning lemons into lemonade.

I have been fortunate to have met a cadre of amazing people over the past decade. Many of these experiences and people are because of my work and affiliation with the U.S Pain Foundation. I have the honor of being featured in the latest issues of U.S Pain’s quarterly magazine The Invisible Project. You can read more about my journey living with fibromyalgia here.

I’ve some so many priceless experiences and done so many wonderful things even while this illness changes the scope and trajectory of my life. I cant say that I would change a thing about any of the experiences that I have had. Every single moment, the highs and lows, and good days and the not so good days have placed me here in this moment.

What to learn more about fibromyalgia and what it’s like to live with it?

Click here to read about “The Spoon Theory” by Christine Miserandino

Click here to read articles I’ve written over on my original blog

About Fibromyalgia Awareness Day

Did you know that Fibromyalgia Awareness Day was started right here at the NFA in 1998? Since then millions of people have embraced May 12th as a day to share with others what it is like to live with fibromyalgia. Now, 20 years later, the National Fibromyalgia Association is still working hard to bring awareness across the globe through Awareness day.

About Calvin Eaton

(he/his/him) Calvin Eaton is a disabled community educator, content creator, and social entrepreneur, whose area of expertise includes antiracism, equity, justice, instructional design, and program development. In 2016 Mr. Eaton founded 540WMain, Inc. a virtual non-profit organization and antiracist education brand that promotes justice for all. The organization encourages individuals to broaden their horizons and learn more about multidisciplinary issues and topics that impact the world. 

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.

cbd oil bottle and cannbis leaf in white background

What is CBD? Part I | Living with Fibromyalgia

If you follow me on Facebook then you know that it has been about one month since I started incorporating CBD into my daily life and management of fibromyalgia. My foray into CBD has not been a fly by night decision but has been in the works for many years. Recently an incident with my now former primary care physician was just the push I needed to finally move into the direction of using CBD; which up until now I had just been dragging my feet on.

Why the Delay

Not so much because I wasn’t convinced that CBD would work for me but more procrastination.  After finally finding a medication regimen that worked for me after many years of trial, error, and failure, I had been lulled into a comfortable rut of using a prescription cocktail that was more or less working and to be honest I just did not want to interrupt a regimen that worked.

“I just did not want to interrupt a regimen that worked”

Yet, deep down I knew that a change was on the horizon.  Cymbalta was one of those medications in my cocktail and even though it was ‘working”  so were the “the side effects; and these were less than ideal. Additionally, it has been a long term goal of mine to be as natural as possible as I approach the ten year mark of living with fibromyalgia. But before I can tell you all the ways CBD has helped me (even in a short amount of time) I have to tell you what CBD is. Fortunately, my friend sand partners at Endoca have done a great job articulating what is CBD.

What is CBD?

Read the rest here

About Endoca

Endoca is a cannabis production company and leader of organic cannabis products has a  mission to make CBD available globally and affordable without compromising on quality.

This post is sponsored on behalf of Endoca. The opinions expressed are my own. 

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

Four Herbs to Calm Anxiety | Guest Blog by Noor Najam

Hello there! Feeling anxious lately? You would do well to know that anxiety does not only represent itself as a feeling or a state of mind, anxiety has negative impacts on your body as well.

For example, your heartbeat gets faster and you sometimes lose your appetite as well. There are so many other effects of anxiety that make you unproductive and totally take away your motivation to do anything. So, the very first thing anyone will recommend is taking your anxiety medication but so many of us have problems with anxiety medication, right? It’s addictive, has so many unknown chemicals and let’s not even get into the side effects!

So for people like you and me, who shy away from medication, fresh and healthy food also comes to the rescue! In this case, it is herbs:

Chamomile

My personal favorite herb of all is chamomile. It works wonders for relieving your anxiety and de-stressing you all over. Sometimes when I cannot sleep at night because I am too busy fretting over small things, a small cup of chamomile tea with honey is all I need to fix myself and get back on my feet.

I understand some people cannot stand tea, so there’s no need to worry; there are many other ways to take in chamomile. For example, you can take chamomile herb supplements with your food. Chamomile essential oil is also easily available in the market so you can just use it as massage oil or in a body scrub!

Kava-kava

Chamomile is for people who suffer from small bouts of anxiety from time to time. Kava-kava is much stronger than chamomile when it comes to relieving anxiety. There has been a lot of research on this drug and studies have shown it to dull the effects of anxiety greatly.

There is one problem though, kava is said to be quite dangerous to the liver. So we recommend you do not take its supplements often and never consume it with alcohol or if you have any liver problems at all.

Passionflower

Passionflower is another somewhat mild herb that is said to relieve anxiety in people. It is said to have the same effect as some anti-anxiety drugs like diazepam or oxazepam. It is supposed to work slower than the medication, though.

The difference is in the side effects. Passionflower may cause slight drowsiness to the user but it can be overcome easily while anti-anxiety drugs are usually addictive and may harm the nervous system as well.

Lemon Balm

Lemon balm lies in the same category as passionflower and chamomile. It is said to have a fresh, lovely scent which helps in making you feel better as well. Lemon balm can also be taken as a supplement or consumed as a tea.

Ashwagandha

Ashwagandha is an Ayurveda herb that is being used in therapy for centuries now. In recent studies, it has also been found that ashwagandha supplements also improve the effects of anxiety in people. This herb also has minimal side effects and is quite safe for consumption.

About Noor

Noor Najam is a 22-year old student who loves to explore food delights and ever-growing new tastes of different regions. She likes to stay fit and make healthier food choices. She thinks she should have studied a culinary related bachelor’s degree instead of her current bachelors in Social Sciences. She regularly posts on https://pateeri.com/.

 

Losing My Mind: The Debilitating Effects of Memory Loss | Living with Fibromyalgia

For most living with fibromyalgia it takes many years to come to grips with the fact that the person you once were eventually dies and a new version of the person is reborn. The checklist of what fibromyalgia steals from you mentally and physically seems to grow longer with each passing day. Early on in my journey when I was passing through the five stages of grief, anger was a common emotion as I watched my life change from the inside out and was able to do very little about it.

“Losing my memory along with everything else is simply to much to bear and I am terrified”

As I approach my tenth year living with fibromyalgia I can say that I’ve made peace with and accepted the fact that I am a new person and will never ever exist how I was prior to fibromyalgia. Still I would be lying if I didn’t say that I am extremely concerned and terrified at the fact that I am losing more of my short term memory with each passing day. But before I get into my personal challenges with memory loss, let me share some of the general facts about fibromyalgia and memory loss.

Memory Loss & Fibro

According to the National Fibromyalgia Research Association, 46% of fibro patients suffer from both fibromyalgia and impaired memory. The National Fibromyalgia and Chronic Pain Association explains, “…we have found that FM patients perform more poorly than age- and education-matched controls on tests of several different types of cognitive function.”

According to a 2015 review in Rheumatology International, some patients report that the loss of mental clarity can be even more devastating than the pain and fatigue associated with fibromyalgia. Fibro fog can manifest itself in different ways in different people but some of the most common symptoms include:

  • short term memory loss
  • misplacing objects
  • becoming easily distracted
  • forgetting plans
  • difficulty carrying on conversations
  • inability to remember new information

One study from Korea, published in 2012, concluded “that the working memory deficit found in FM patients may be attributable to differences in neural activation of the frontoparietal memory network and may result from both pain itself and depression and anxiety associated with pain.”

Another study showed that fibromyalgia patients are not receiving enough oxygen to different parts of their brain. The Arthritis Foundation speculates that a possible reason for this could be that a fibro patient’s central nervous system is off kilter which leads to changes in the brain’s blood vessels. Thus, impaired cognitive function.

Although cognitive difficulties have sometimes been thought of as “all in a patient’s head,” a 2015 study in Arthritis Care and Research found that fibro fog is a real issue. In a study of 60 individuals – 30 with fibromyalgia and 30 without fibromyalgia – researchers found various impairments of attention and memory in fibromyalgia patients when compared with healthy controls. What remains unclear is what is causing the cognitive challenges.

So the studies are conclusive living with fibromyalgia includes so much pain, depression, and anxiety that individually and collectively cause the brain to behave abnormally. Indeed, the study went on to add that “memory and concentration problems in FM patients were related to impairments in their ability to organize and plan ahead, express themselves, respond quickly to questions, and to drive.”

The memory loss and “brain fog” that I have experienced for years but seems to be more noticeable over the last two years is not all in my head but very tangible and real.

What Happened to My Memory

My experience has largely fallen in line with the research and facts listed above. Over the last few years I’ve found myself stumbling over words when I am speaking, constantly losing my train of thought, and literally losing my short term memory. A few years ago I was in denial and tried to overlook these issues. I refused to believe that the only thing that I had left to rely on (“my mind”) was also being affected by this insufferable disease.

I pride myself in having the mental fortitude and stamina to have been able to turn my negative experiences living with fibromyalgia into an outlet and platform that has allowed me to share and sustain myself. Writing books, running a blog, and creating content all require a immense measure of mental fortitude that up until recently was in tact despite the chronic fatigue that when flaring limits my stamina physically and mentally. This truth was something I have been able to overcome. But losing thoughts, forgetting if I did something, and needing to rely more heavily on notes, journals, and calendars is quite different. This means that the content if I do not capture it immediately simply will not be there. Coming to grips with the harsh reality that my mind is not as resilient as it used to be and at just 32 years old I have to worry about the real and tangible effects of memory loss is very challenging.

Even though I’ve lived with fibromalgia long enough to know that I will do my best to rise above this symptom as best as I can, I would be lying if I didn’t share that I am tired. Tired of pushing through. Tired of the pain. Tired of rising above. Tired of being tired. Losing my memory along with everything else is simply to much to bear and I am terrified.

Source(s): Fibromyalgia Treating | Fibromyalgia News Today |National Fibromyalgia Research Association |Plos.org|Arthritis.org

May Days & Productivity | Living with Fibromyalgia

Happy May to you!

I don’t know about you but I am more than relieved that we seem to finally finally be across the threshold of the iron clad lock winter 2018 has had our our region. Every year my body laments the inconsistency of our weather patterns here in Upstate NY and even though we have officially entered into the spring/summer season of the year “the fibro monster” inside me now has to acclimate to a sudden spike in temperature, barometric pressure, and pollen!

Still I try to count as many blessings as possible and warmer temps and sunnier skies are a welcomed change despite the ills of chronic illness. For me the change in season means a change in mindset and understanding that my levels of productivity are as vaccilating as the weather. I try to roll with the punches as much as possible but would be lying if I didn’t share that it is extremely frustrating to be bed bound on the gorgeous days we have been experiencing. I haven’t really bed outside my house let alone my bed since this past Sunday.

A Spring Epiphany

Speaking of productivity the last few weeks have seen me more productive than ever; mainly due to my decision to finally and fully make substitute teaching my (extremely) part-time career and mentally focusing the bulk of my mental and physical energy of growing 540WMain. This process is one that has been on going and in flux since 2016 and since founding the organization I have battled with internal and external pressures to keep one foot on both sides of the fence so to speak. What do I mean I mean you ask?

What do I mean I mean you ask?

Well, being a very non-traditional person in more ways than one and living in a society and among people that do not fully understand the entrepreneur spirit or what it means to live with a chronic illness; I have found it challenging to stand up to family and peer pressure to work in a job and a career that I’ve been told is more stable and consistent than creating and building my own organization. Even though most of this feedback comes from a place of love and care; it created a tension and anxiety within me that has made me try to keep the best of both worlds so to speak. Teaching and educating is my passion and because of this I am very good at it. Working in the public education sector in many ways is more consistent and offers certain benefits that I you just do not have when you are building a grassroots organization. I could go on, but in an effort to keep the story on point; I made the huge step in mid-April to only substitute two days a week and give the rest of my energy to the sustainability of 540WMain.

On the outside this decision may look like a huge risk. Living with a small personal income while committing myself to an organization that is growing and makes me no personal money (yet) takes a level of sacrifice, courage, and risk that most people will never understand. Still, the universe has blessed with with many signs over the past four weeks that have told me that this decision was one of the best I could have made.

What’s Going On

As 540WMain’s leader, I’ve been able to engage in community events and networking that is vital to the sustainability of this organization. I’ve been able to have more mental and physical productivity in writing grants and reaching our to corporate funding streams. I’ve been able to hire a second part-time staff person; Jake Sell Hicks 540WMain’s new Community Organizer. I’ve been able to reassemble 540’s Ambassador Team (Board of Directors) and create a stronger internal infrastructure. All of this in addition to managing a chronic illness which is quite literally a full-time job by itself.

The fruits of this labor have not quite come to fruition. But the seeds are being planted one day at a time every single day and I look forward to sharing more of 540’s growth with you as we approach it’s 2nd anniversary in June 2018. Having the schedule and capacity to make myself more present allows 540WMain and the brick and mortar space to be available for last minute bookings like the Community Meet and Greet w/Jumaane Williams that was sponsored by RoCitizen on Friday April 27th. This event probably wouldn’t have happened at 540WMain had I not been available. This is just to tip of the iceberg of the work that I’ve been doing to maintain the 2018 focus and vision of “sustainability” and as always I thank you for all your support in helping 540WMain grow.

Share this post. Donate to 540WMain. Like 540 on Facebook. Register for a class.

xoxo