” Most of us have unhealthy thoughts and emotions that have either developed as a result of trauma or hardships in their childhood, or the way they were raised”, Steven Seagal
It would seem that those of us with fibromyalgia have developed the condition at an early age which may have taken a tremendous shock, accident, or crisis to bring about full-blown fibromyalgia. Some of us have had repeated crises in our sensitive lives and did not even experience a single unusual occurrence of the syndrome developing. Nonetheless, we are a group of people with specific personality traits that allow us to dwell on trauma that seems to be stuck in our minds/brains reactivating the experience more frequently than is healthy. So, how in fact can we find ways to train the brain to refocus away from past trauma? The work of Dr. Richie Davidson, neuroscientist, has presented us with the interesting option of “spending as little as 30 minutes per day training our minds to do something different” (p.52 Mindful August 214) which can result in changing the brain. To that end, I had decided that quilting was not the answer as I had previously tried that and not had much success (see blog Fibromyalgia and Multitasking, May 17, 2009). Instead, I would try my hand at writing about personal issues.
I have begun to write short stories about my life, exploring the reasons why I am the way I am, an anxiety-riddled person with a tendency to overreact to any kind of stimulation which then begins the vicious cycle of pain and fatigue flare-ups. Writing these 2 or 3 pages about events in my life, for example, about my first day of school, often brings about unhappy memories. So, I have been training my mind to do something different, but in fact, it is not exactly a healthy endeavor. Or is it? The two friends with whom I shared this first day of school story had different responses to it. Each is valid. One friend suggested it was a good practice, then after I had written bad stories, I should print, tear up and discard them forever. The other friend reminded me that I have written before about reactivating the amygdala to relive a bad experience, and writing about past trauma was not a good idea.
Ah, but back to Mindfulness– living in the moment- not the past nor the future, but the here and now. That is, after all, the idea that whether I am eating a meal, driving the car, or being with friends I am just being without judgment- I am conscious of the actual moment, not reliving past negative events. I have to train my mind to do something different that is pleasing and not anxiety-provoking. It should also be repetitive and creative. Hmmm, whatever shall it be?
” Our memory is in large part the starting point for how we think, how our preferences form, and how we make decisions”, Maria Konnikova
Several weeks ago on CBC radio upon hearing an interview with Dr. Konnikova regarding the science of memory, I became intrigued with the ways in which she has based an understanding of neuroscience upon the brains and memories of two fictional characters- Sherlock Holmes and Dr. Watson. Being a Holmes lover and extremely interested in how the brain works- as my readers will well know from my many blogs, I hastened to read this amazing book regarding these two distinct minds which she dubs the brain attics. This term she pilfers from Holmes who said: “I consider a man’s [sic] brain originally is like a little empty attic, and you have to stock it with such furniture as you choose” (cited in Konnikova, p. 26).
Chapter two regarding the concept of the brain attic was one that captured my intense interest as I have often referred to my own brain as one which is tired and needs emptying. I am hooked on wanting to change my brain and it’s bad/useless memories and having it become more like that of Holmes than Dr. Watson! The Watson attic (which in my case is constantly on high alert (the amygdala), is, in Konnikova’s words, “jumbled and largely mindless” p.29) and needs cleaning out. I need my brain attic to be more observant and recognize the memories which precipitate continuous anxiety/fear. More importantly, her emphasis on meditation training is in line with my own thinking about the ways in which meditation can clear out the brain’s attic memories, although as Konnikova says, it takes practice, practice, practice.
As with all the books I suggest as important reading material for people interested in how the brain and, especially memories affect those of us with fibromyalgia, I am leery about giving away too much in-depth information regarding the content. I encourage readers to read the book in its entirety. IT IS NOT A BOOK ABOUT FIBROMYALGIA– THE READER IS WARNED! It is a book about forcing the mind to be more observant and logical. Here I am trying to join together relationships that I have not been able to read about elsewhere.
Fibromyalgia is a mammoth puzzle and “your neck bone is connected to your head bone” ( a sentence from words to the song Dry Bones by James Weldon Johnson and J Rosamund Johnson). It is an appropriate analogy here. Let me tire you once more with the ways in which I have to this point, unraveled what for me has become some major aspects of the dis-ease. How to present it? A circle is not appropriate, nor is it linear so that visually one cannot uncover what I consider to be the gestalt, the complete picture. It seems to me I can only repeat words that are linked within a mishmash of brain/memories in a person who suffers from a Watson-type brain. What follows is my description of the fibromyalgia person.
First, there is the highly anxious individual who may or may not have developed anxiety in utero or in childhood (the old nature-nurture issue). This person has stored long-term memories in the attic’s ‘storage space’ which both Lars Clausen (in his book Fibromyalgia Relief) and Dr.Konnikova point out is calledconsolidation. It is likely that childhood trauma has been responsible for this storage. Every time a new stressful event occurs, the file (as Konnikova has coined it) is pulled out and more is added to this memory. The attic becomes more cluttered.
Secondly, this highly anxious person is at the same time the highly sensitive person whose fight–or–flight Watson- the brain is on the lookout for even more and more anxious memories to add to the file. It does not discriminate- “What’s stored is organized according to some associative system…” ( Konnikova, p.31), called ‘associative activation’. With the Holmes- mind one can acknowledge the emotion – in the case of fibromyalgia, it is fear/anxiety-but you cannot let it get in the way of objective reasoning (p.40).
Thirdly, we now have the body being affected by this constant hyper–vigilance of the central nervous system, from that part of the brain which is always on the lookout for new anxieties to add to the file. Other systems are affected, the muscular–skeletal seems to be the first to go! The immune system becomes compromised. Pain and subsequent fatigue begin, followed by a myriad of other disquieting symptoms, causing more anxiety to add to the memory pile up.
Clausen writes of memory reconsolidationwhich some neuroscientists are advocating. As Clausen has written: “Unless we reconsolidate the emotions we have of our past memories, we will continue reacting to the old emotion of each memory” (p.71). In other words, we must clean out the attics of our brains! Consolidation is considered to take place within the first few hours so it is necessary to stop these emotions from becoming part of the furniture of the attic! However, in spite of the controversy that surrounds the issue of reconsolidation, there are those who suggest that previous memories can be made labile through reactivation of the memory, such as Clausen’s technique of ICE (previous blog).
Konnikova advocates being mindful, but there is more to changing the brain and subsequently those unwelcome stored memories. The vast scientific literature that has been presented over the past few decades based upon the neuroplasticity of the brain points to other techniques as well as learning to observe diligently. Movements such as Chi-gong, yoga, dancing, taking on new tasks that are creative and repetitive, music, and art all feed into the realm of strategies that together can activate new pathways. We are seeking to develop a Holmes brain where “thoughts, properly filtered, can no longer slyly influence your behavior without your knowledge”, (.p21). But Konnikova warns: “It won’t be easy”, (p.21).
“The happiest women, like the happiest nations, have no history”, George Eliot
I have based my unproven theory about why more women than men are diagnosed with fibromyalgia upon a feminist analysis of the political and cultural roles of women in societies in general- both historically and at present. However, now that gender is currently socially constructed and is much more fluid, it has indeed become a complex issue and not as straightforward as I previously thought. I have begun to look less at statistics in regard to the ratio of women to men because I believe that fibromyalgia is a catch-all term that includes all genders who suffer from chronic pain and fatigue and it is under-reported by many who define themselves as traditionally female or male.
The concept of fibromyalgia developed as more and more women began to speak out about similar characteristics and symptoms which encouraged physicians to deem that it was primarily a condition that afflicted more women than men. There isn’t any way to be accurate about how much of the population of any country has fibromyalgia. In many places there isn’t even a term for the condition; more to the point many traditional men have been hesitant to report the symptoms to a health care professional for fear of being seen as less masculine. There is little doubt that for bi-sexual and trans-gendered people the issues are even more complex. But, things are changing as more military personnel are reporting post-traumatic stress syndrome, formerly known as ‘shell shock’ and then ‘Gulf War Syndrome.
It is widely known that traditional women, more so than traditional men, are more prone to seek medical attention for both their families and themselves. Furthermore, women are generally more sensitive to bodily changes and other nuances that are often difficult to describe. An example of this is the reported “sense of impending doom” that women often experience weeks or days before a heart attack (I can attest to that!). Yet, when women mention to their health care providers symptoms that should be suspiciously attributed to heart disease, there is still a general misconception that heart disease is primarily a man’s condition.
Conversely, when a woman discusses her chronic pain, fatigue, and other symptoms, the label of fibromyalgia is more readily applied. If a man admits to having chronic pain the affected areas are more likely to be vigorously examined and attributed to, for example- a disk, muscular strain, and so on. It is my view that emotions, in particular, anxiety, are responsible for fibromyalgia. Since emotions are culturally and socially defined, girls are perceived to be sensitive and emotional whereas boys are rewarded for being dominant. However, the differences are in how emotions are expressed rather than experienced.
So why is it that women and men are treated so differently within the health care systems, in particular with regard to chronic pain, fatigue, anxiety, and depression? It is true that fibromyalgia is not life-threatening, and in my view is caused by lifelong anxiety issues in highly sensitive persons, but given the large numbers of people affected by the condition why is the focus still explored as primarily a woman’s condition? Even more to the point why is it that researchers are keen to explore what they perceive as problems within the woman’s body which cause fibromyalgia?
I have written extensively about the highly sensitive person and fibromyalgia, which I believe to be the same as the highly anxious person. This, in turn, becomes a mentally unstable issue that is more likely to be primarily another woman’s problem as more women report and take mood-altering medications than men. Yet, in the last few blogs, I have written the ones who have come forward recently to write about anxiety have been (white, privileged, self-identified) men, which, by the way, takes a great deal of courage.
Sociologically women’s lot in life, worldwide, is and has always been more difficult, suffering more frequently and dramatically from sexism, domestic abuse, victims of crime, ageism, racism, sexual abuse, incest, violence, poverty, and the many inequities in economic realms. It is little wonder that women suffer more from lifelong anxiety and their spirits are often broken. The question I often ask myself is why this has become medicalized and the conditions of both anxiety and fibromyalgia are thought to be shameful when it is because of the socially constructed women’s role in life? Searching for a lack of this or that in the bodies of those with fibromyalgia seems to be the end result – the effects- of the condition rather than the cause.
The exposed heart in this oil painting is how I interpret the ways in which most women are vulnerable. Even at this young age, without professional training, Jaden’s paintings usually reflect the open, bursting heart of women. Are our young women intuitively aware that life will be more difficult for them? Do the pressures of beauty and fashion, sexual activity, struggles within social structures that are constraining, and the ‘glass ceiling effect’ in the workplace, perpetuate our lifelong struggles with anxiety, even in the most ‘stable’ privileged environments?
Even more to the point what emotions are not discussed in the fibromyalgia rhetoric regarding people of color, LGBTQ communities, in war-torn countries, street people, and other disadvantaged groups that lead to this dis-ease? Surely their pain and fatigue, among the other myriad of symptoms, areas under-reported as those of more privileged groups, such as white men, that is, those who themselves suffer from anxiety expressed as a different phenomenon, particularly those in the military who have fibromyalgia known as PTSD?
I know more about fibromyalgia now than I did ten years ago and I am more than ever convinced that while there are strategies we can employ to work with our anxieties the idea of fibromyalgia itself is socially constructed to mask as a disease, when in fact, it is an expression of wounds to our psyche from which all people suffer to a certain degree.
“Open your heart to your suffering”, Toni Bernhard
There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’. Often thought of as malingering, hypochondriac, weak, attention-seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system that cannot sustain itself in a healthy manner any longer.
It is as though we have overstretched the central nervous system just as a rubber band might become less elastic after constant overstretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become functionally abnormal.
In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue, and myriad of other symptoms with which we are faced.
I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be curedof the pain, fatigue, intense itching, depression, anxiety, nausea, flu-like symptoms, and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard:” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.
I want to encourage readers to read this book as the daily/yearly experiences of Toni Bernhard are so similar to many who write to me often (and painfully), wondering how to keep on keeping on. After reading her book I decided to practice her exercise which she calls “drop it”, similar to ‘letting go’. As my anxieties escalate during the day I deliberately think about the thought I am having at that moment then I consciously drop it.
I live with the focussed anxiety of having a flare-up from fibromyalgia/chronic fatigue, living with a huge painful herniated L4-5 disk, and worrying about having another heart attack, all the while knowing I must exercise at least 30 minutes a day in spite of the pain. So, for me, the anxieties are almost constant. Dropping the thought has been very helpful.
I can’t say it lasts a long time, but I have been keeping on track and repeating the phrase over and over. In short, as I have been writing about for years now- I am trying to change my brain and short circuit that trodden down path to another that is called ‘living in the moment, or ‘mindfulness meditation’.
I no longer speak of my fibromyalgia/chronic fatigue with health care professionals- the search for answers is fruitless. I can experience joy if I live in the moment and not look back to a life that I can barely remember- one without pain. I can not predict what tomorrow will bring. I only have it now.
There are many of us living with medically unexplained symptoms, such as those fibromyalgia/chronic fatigue, multiple chemical sensitivities, Gulf War illness, and post-traumatic stress disorders, most of which are also called somatization disorder, a label that can place us in the realm of psychiatric investigation and therefore denigrated by many health professionals.
As Toni Bernhard has written: “As you experience the unpleasant mental sensations of being treated in a dismissive manner by this medical person, instead of reacting with aversion, consciously move your mind toward the sublime state of loving-kindness, compassion, or equanimity– directing the sublime state at yourself”.
This is the essence of mindfulness meditation- being kind to ourselves- exploring our thoughts without criticism, without judgment. In the words of Jon Kabat-Zinn: “Mindfulness means paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally” (Wherever You Go There You Are).
There isn’t any other way for us to proceed: we can’t change our diagnoses by lamenting, ruminating, seeking one treatment after another, or depressing about our conditions. Now comes the difficult part- practice-practice-practice what I preach. Be kind to me and open my damaged heart to my suffering, without reproach or wishing for what cannot be!
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”, Maya Angelou
On June 3rd I heard a documentary on CBC radio talking about the mark of shame, the culture of shame, and how it makes one feel. There is so much about the visibilities of women’s bodies that cause us to hide perceived imperfections, in particular, the dyeing of our hair so as not to look old, plastic surgery to hide our wrinkles, overuse of cosmetics, whitening of our teeth, even the marketing of products to enhance the color of vaginas!
We can never measure up to the standards set for us by the big businesses of the multi-national corporations who prey on our insecurities. The cosmetic industry is constantly thinking up new ways to make us feel insecure and shameful if we do not keep up the appearances of a youthful women. We must always be thought of as sexually desirable dictated by our outward appearance.
That isn’t to say that I am morally judging those who use whatever means they can to feel good about their outward appearance. Rather, it is meant to point out that we are often prone to hide the fact from ourselves that we cannot stay or look like we are in our 20s forever.
While none of this understanding of women’s attempt to look like the Hollywood definition of beauty was any surprise or new to me, having taught in a women’s studies program for many years, nonetheless it got me thinking about conditions that areinvisibleand about which we have shame because we cannot measure up to standards of health, for example, with fibromyalgia.
Fibromyalgia is a syndrome about which people often sigh and believe we should not indulge ourselves in lamenting about our pain and fatigue, as well as a myriad of other symptoms, rather we should just smarten up, ‘suck it up in order to feel better. I believe that health professionals are among the worst as the condition cannot be diagnosed through the usual medical tests and there is no known ‘cure’.
But, family and friends also blame the ‘victim’, even though I hesitate to use that phrase as we are not actually victims. Of course, this attitude of others makes us feel shameful about ourselves and the self-critic, ruminating voice within believes we are malingering and should become less vocal about admitting we have such a dis-ease, that we are asexual and sickly creatures.
The disdain that many health professionals and many of the general public portray to those of us with fibromyalgia can make us feel like we are hypochondriacs. The syndrome itself is a stigmatizing label all the more so because it is invisible and we look healthy. In her April 13th blog, Carolyn Thomas (www.myheartsisers.org) writes about Healthy Privilege.
She quotes Dr.Ann Becker-Schutte who writes: “Many physical health conditions and all mental health conditions fall into the category of “invisible illness”. Furthermore Dr.Becker-Schutte writes about those who are healthy and do not “see or understand because they have some degree of what I am calling healthy privilege”. I have found this to be even more obvious now that I have two invisible conditions: fibromyalgia and heart disease.
Several years ago I decided to let my hair go grey and not blow dry it straight as I did every day. I let it dry naturally and do not blow heat on my head, letting the natural curl do as it wants. I do not use make-up and use only moisture cream that does not have any of the nasty ingredients that are so dangerous to our health and cause so many sensitivities and itching.
Eye make-up is not an option as I am sensitive to it and to light and my eyes will burn and water if I use cosmetics on them. I have gradually let go of all the social demands to try to look younger than I am. It hasn’t been easy. As I look back on these almost 100 blogs I am always stunned by the hundreds of comments on itching. Until I gave up on most cosmetics I too found itching to be a serious problem.
I know many cases of women with serious allergies who continue to dye their hair and wear eye makeup and other cosmetics that actually induce itching and sensitivities. In fact, I have given in to the shameful, stereotypical view of the older woman who appears to no longer care about looking younger.
While I can do this to my bodily appearance, I cannot hide the pain and fatigue from myself but I do often hide it from others. It can be a sign of weakness of character to admit I have a hyper-aroused central nervous system. I don’t like this label. My casual appearance these days is amazing to many who do not know me intimately. I am told over and over how well I look; how natural I appear; how healthy I look; how I do not look my age.
Many cannot understand that appearances are deceiving. The shame for me is that I relish these compliments. Why would I want to tell them I am suffering from post-traumatic stress syndrome five months after a heart attack, that I live with pain and fatigue from fibromyalgia, and that I am taking many medications for heart disease?
I want to belong to the club of those with Healthy Privilege, not the clubs of those of us with an invisible disease of the cardiac sort who often induce fear in others about their own hearts, nor the dis-ease of fibromyalgia which has a stigma attached to it. These are the challenges we face living with conditions that cannot be seen; how we handle them is a sign of both our vulnerabilities and our strengths.
“One out of two women are going to have, live with, and/or die from heart disease and stroke,…It is amazing women are still not getting that message, and one has to ask why.” Dr. Martha Hill
On January 19th I suffered a heart attack. For that reason, I have not written much in the past several weeks. Writing about the ‘event’ is not easy. I could not have survived emotionally without the wonderful advice, support, and assistance I received from healthizes.com. The owner of this website, Alexa Robber is an extraordinary woman and a heart attack survivor herself.
Women and heart disease have become a burning issue with me now. The problem as I see it with women and fibromyalgia is that we tend to think that all are related to our condition and negate symptoms that are seriously life-threatening. With me, it was shortness of breath and fatigue. I tended to think it was all due to fibromyalgia until it was too late; I had a heart attack and now must learn to survive with a damaged heart.
While there have been those who have written about fibromyalgia and heart valve issues, this wasn’t the case with me. I do know though that it is important to seek out information regarding the relationship between heart disease and fibromyalgia. There is so much that is unknown. My advice to you dear readers is to be very vigilant regarding your heart.
Heart disease is the leading cause of death among women. Please in this heart month, be sure not to mistake what you perceive to be fibromyalgia when it may be something even more serious. As a whole, health professionals tend to think of heart disease as a man’s problem. It is up to us to educate them and ourselves.
For now, I am on the road to a slow recovery with the help of family and friends.
“If you are experiencing strange symptoms that no one seems to be able to explain, they could be arising from a traumatic reaction to a past event that you may not even remember”, Peter A. Levine
Two words that are now often coined in conjunction with fibromyalgia are cognitive sensitization and somatic sensitization. I have been exploring the research in this direction for the past couple of years and have recently had another ‘aha’ moment. I am not sure which comes first but with regard to ‘cognitive sensitization’, because of the excessive degree of empathy for others and fear/anxiety for ourselves, there is vivid brain activity in the amygdala.
People with fibromyalgia worry excessively and our attention to health-related information is extremely high. The meaning that pain has for ourselves, the sufferer, or for others whom we perceive to suffer, poses increased threats which affect ‘somatic sensitization, that is, increased reactivity of the nervous system. In turn, this lowers the pain threshold and affects pain tolerance; the consequence is that the fibromyalgia syndrome develops.
The two are interrelated but what does that mean in simple language? One hears, in fact, seeks out, health-related information, subsequently, anxiety and fear develop (the amygdala is overreacting to perceived threat) increasing the overstimulation. Then a low tolerance for pain develops. Accompanying this pain is a myriad of other symptoms.
But is this too simply stated? What can this cognitive sensitization actually produce within ourselves? This is a process within the brain as it receives cues that bring about arousal from a past traumatic event, which becomes an actual sensitization of the neuro system. In what ways does this anxiety/fear invade our brains?
“The result, sadly, is that many of us become riddled with fear and anxiety and are never fully able to feel at home with ourselves or our world”, writes Peter A.Levine (p.21) in Waking the Tiger. With the nervous system being in a state of hyper-arousal, we become overly sensitive to light, sound, and weather conditions among other environmental factors that can cause pain, itching, tightening of the muscles, and fatigue.
We have difficulty with sleep, stressful situations, our startle reactions and we are hyper-vigilant. Often this dis-ease with our sensitive nervous systems results in heightened anxieties that become panic attacks.
Social neuroscience has explored the brain activity of many types of people and yet very little has been done with the over-activation of those of us with fibromyalgia. Our tendency to interpret and be in tune with verbal and nonverbal cues of others and be usually in a state of hyper-vigilance is worthy of intense research. it seems as though many of us with fibromyalgia are in caregiving roles such as nurses. We are addicted to giving care to others, too much empathy with the resultant overstimulation.
Central sensitization seems to be the view of the researchers on fibromyalgia, that is the central nervous system is usually on high alert and overly sensitive. The sudden surge of extreme fearfulness, heart pounding, shortness of breath, tingling sensations, and feeling of being in danger can develop anywhere and at any time. This is how a panic attack feels. We are chronic worriers for ourselves and for others leading to catastrophic thinking and being afraid of fear itself is what leads to panic attacks. When did these symptoms first begin to take shape in our psyche?
As Levine and Scaer have written (see other blogs on this topic) we have been subject to psychological trauma that produces bodily sensations that appear to be a bona fide disease, instead of the dis-ease of the scars from these traumas. Whether or not these lifelong traumas have developed even in utero or in childhood, it seems as though our hypersensitivity has led us down this path.
We can change those brain pathways if only those who were quick to medicate us or find a cause that is not psycho-social in nature were supportive in our quest to find ways to heal ourselves. Both Levine and Scaer (among others) are pioneers in this respect and their work brings hope to those of us with this central sensitization.
Having Fibromyalgia is like a roller coaster ride. Most days I just don’t know how I am going to feel. I try to have a positive mindset and I find it helps when I’m around others with a positive mindset as well. However, I realized that not everyone wants to hear or see positivity right now. Frankly, I can understand that – I use to feel that way too. I started to realize I have a choice in either suffering from fibromyalgia or fighting it.
I was not always positive about my attitude towards my illness. In fact, you can read my first article on admitting I was sick publicly, Coming Out With An Invisible Illness. In addition to not being positive, I didn’t want anyone to know I was sick. It was like my dirty secret.
Telling people I was sick was admitting it to them and myself.
Admitting I was sick might mean I wasn’t able to fulfill my goals.
If I admitted I was sick I might have to slow down and put myself first.
How can I put myself first, when for so long I have put others first?
If I put myself over others, I would feel selfish.
I said a main reason was I didn’t want people to feel sorry for me. I said that because really, I felt sorry for myself and was ashamed of that feeling.
If people knew, they might think I was weak.
Staying in denial meant I didn’t need to make any changes.
My self-esteem was too caught up in how others viewed me (still is). If they thought differently of me, like I was less than I used to be…. maybe I was less than.
This way of thinking only made my illness scream louder at me that I needed to stop. Fibromyalgia is hardly ever on its own. On the contrary, it has a web of other illnesses that usually come with it. So pushing my mind, body, and soul beyond its limits is something Fibromyalgia does not like. When my body finally gave out on me, I had to face my illness and myself. Doing something like this makes a person go through the stages of grief. So, one of those stages is finally acceptance, right? That is what happened, I accepted I was sick.
In doing so I became very depressed. I did what I had been dreading, I felt sorry for myself. The negative self-talk was going like crazy at this point.
“I don’t know how I’m going to do my job anymore”
“I’m a horrible mother, I can’t even take my son outside for a walk”
“How can I finish school? I can’t! I’m going to have to quit”
I know you can relate to some of these. Honestly, this way of thinking and living can take a person down a dark path. You might be asking, “Why are you telling me all of this?” Well, friend, I am telling you to show you how deeply negative my thinking can get. So, how do I pull myself from the negative to the positive you so often see from me?
Yes, I make a choice each and every time. I choose to find some light in the darkness and so can you. It takes practice and a little effort, but I’m confident you can do it. Here are some steps to help you through.
Write down all the positive qualities about yourself and save this for later.
Mine would be: sense of humor, kindness, wit, intelligence, & empathy.
When a negative thought appears, pull out your list (if you need to).
This is where you remind yourself of the positives from your list.
Yes, I have fibromyalgia and I’m in pain. However, I am also funny and can laugh at myself. I got this!
Yes, I am feeling depressed right now. It seems to be pulling me farther into the darkness and all seems hopeless. However, you have pulled yourself out of darkness like this before! You are strong-willed and determined and you got this!
Put this on repeat (believe me it takes practice).
Now you may be saying this is great, but this alone can’t change my negativity. This is true. There are more tools you can use to keep yourself positive.
Mindfulness– yes, meditation can help keep you focused. There are many different types of meditation available. I encourage you to pursue one and make it a daily ritual.
Gratitude– I learned in my positivity psychology class, that one of the ways to pursue happiness is to show gratitude. Give it a try by writing a letter to someone you know that did something nice for you. Simply put, let them know how much that gesture meant to you and thank them. Trust me on this- it will feel good.
Goal setting– You might be thinking this is where I lose you. This one will be different for everyone. Some of us are really very sick and can barely function. I know there is a goal you can set for yourself though. I recently set a goal of walking for 5 minutes every day. To those who can easily walk longer, that might not seem like much. However, to those who can’t even walk 5 minutes you know how big that can be. Making your goal small and obtainable will leave you feeling positive when you accomplish it.
So, are you fighting your chronic illness? Or, are you suffering from your chronic illness? This is a choice only you can make. It is personal and individual and there really isn’t a right or wrong answer. You can even do both sometimes I know I do.
Fighting your chronic illness means that every day you choose to keep going, even when you think you can’t anymore. It means that you consciously turn your negative thoughts about yourself and your illness into something positive. Lastly, fighting your chronic illness means that you will not be its victim.
Suffering from your chronic illness means that you let your illness control you. Don’t get me wrong, our illness always controls us in some aspect whether we like it or not. However, when we suffer, we have no choices, we are the victim.
As you can see, in both these scenarios we have the same illness. In one we feel more in control than we do in the other. As I said before, there are days I am fighting fibromyalgia and days I am suffering from it. The difference is the way I choose to look at it, with positivity or negativity. We can’t control that we have a chronic illness, but we can control how we handle it from here.
Fibromyalgia is such a complex condition. It affects you physically, cognitively and emotionally. Sometimes, if forces us to change who we are or suffer the consequences. This is where I have a hard time because I have dreams and goals and I’m not ready to give them up. Today I woke up feeling the weight of fibromyalgia on my body and my soul.
Most people hate getting up in the morning. I know very few people that just jump right up and seize the day. It is a process, am I right? Most days are hard to get going for me, as I’m usually stiff and hurting as soon as my eyes open. I try to do some stretches in bed to help ease it but some days are harder than others on that front. So I pull myself up from lying down and sit there for a bit, trying to gain strength to move my body. The weight of myself feels unbearable.
On days like this deciding to take a shower or not is a major decision. I think on one hand it could help loosen my muscles and relax me. On the other hand, it could take so much of my energy I might be done for the day. I try to get up two hours before I have to leave for work so I have time to adjust to the whole mess. Then there is the catch 22 of if I’m having a really hard day it is almost impossible to get myself up that early.
It isn’t just the weight of my body that is causing me trouble. It is my mind as well. I can’t seem to think to make a decision as simple as taking a shower or not. It is like a weight is being put on my brain and I just can’t lift it no matter what. It is days like this that I fear driving myself to work. Will I be able to react as quickly as I need to? Will I remember where I am or where I’m going? These are valid concerns that I’m sure any fibromyalgia warrior can relate with.
This weight continues on throughout the day making finding words difficult. Sometimes I feel like an idiot as I try to stammer through a conversation where I know I sound stupid. But I am NOT stupid and you are NOT either. This is what fibromyalgia does to us though. Being cognitively impaired is a result of the weight of fibromyalgia.
The impact fibromyalgia has on my emotions is sometimes greater than all others, especially on days where I have been struggling consecutively. As I have explained in my article Fibromyalgia and Mental Health, I have been battling depression my whole life. Fibromyalgia can take that depression and increase it tenfold sometimes. The weight of fibromyalgia on my emotions plunges me into darkness and it takes a lot of strength to pull myself out. The anxiety and worry over everything get to be too much and make me more exhausted. All the while, I have to push through and go to work each day because I have to, not necessarily because I am able to.
In the end, the weight of fibromyalgia hurts my soul. I tend to be a pessimist however, I work really hard to stay positive or at least re-direct my thoughts. My soul captures all this pain, agony, and fatigue and I have to decide what to do with it. Do I let it drag me down further? Or do I give up? Do I call out sick and lie around and feel sorry for myself? For me personally, the answer is NO!
I know I’ve painted a pretty grim picture, but it is my truth and probably for some of you reading this as well. The above is how I feel almost every day at some point during the day. How do I get through it? Well, one foot in front of the other my friend, one foot in front of the other! I feel I have no choice but to keep fighting, keep re-directing my thoughts, and keep finding ways to take the weight off of me. Here are some steps I take to pull myself out:
Exercise: I know with all I said, you might wonder how. Believe me, sometimes I wonder as well. I modify my exercise to the daily ability I have. If it is a tough day, maybe I just walk in place a few times throughout the day and add in some stretches. I give some ideas on how fibromyalgia warriors can exercise in The Spoonie Exercise Challenge.
Healthy Eating: I have found that I overall feel much better when I put whole, real foods into my body. This may seem like a no-brainer, but when you are addicted to sugar it can really be a hard challenge. In a couple articles I have given some ideas on Healthy Breakfast Ideas and also How To Start An Elimination Diet if you want to check those out.
Planning: This is a tough one, because you can’t always plan for a flare or know you aren’t going to feel well. I plan my meals out each Sunday and try to prep as much as I can. I enlist the help of my family in all areas they are willing. This is also often where I have a hard time as asking for help in the right way can be a challenge for me. I use my planner and write out all my responsibilities for the week. This helps with the brain fog and just keeping myself as organized as possible.
Meditation: Admittedly, I don’t use this one as much as I should. But, it has helped calm and center me. I like to do breathing exercises to calm myself and take my mind off my anxiety at the moment. Sometimes, when I am at work and the weight of everything feels too much, I just close my eyes and focus on my breath for a few minutes. It doesn’t fix everything but it does help get me through the moment.
We talk a lot about how fibromyalgia affects women but did you know that men can have it too? I want to introduce you to Ted Hutchinson, That Gaming Dad! We had a really good conversation about everything from getting diagnosed, living with fibromyalgia as a man, and advocating for our community. He not only tells us how much harder it is to get diagnosed as a man but how to re-create your life after a fibromyalgia diagnosis.
Ted talks about what goes on behind the scenes for someone living with a chronic illness like fibromyalgia and CFS.
Ted explains to us that he initially was treated for “acute injuries” and it took eight years to finally get diagnosed. His symptoms started with back pain and exhaustion. He had to finally find a doctor who had experience with fibromyalgia to get diagnosed. This is when he realized there wasn’t a simple fix he remembers thinking, “cool….we can take care of this and I get back to my normal life, right? Unfortunately, that wasn’t the case and it has been a very long road.”
For Ted getting off the pharmaceuticals and finding holistic ways to improve his symptoms has been key. The medicine he had been on had made his life worse than they helped. He has found cannabis and Kratom to be the most helpful for his symptoms. Ted tells me that Kratom is a cousin to the coffee tree and has different strains that have different effects. Some strains help with anxiety and depression, some are like an opiate replacement, and some are a coffee strain. It can be addictive and should be used in moderation. It comes in many forms like powder, capsules, and leaves and can be digested.
“My pain never goes away, but I can take the edge off it to at least know that I’m not going to overexert myself.”
“I was addicted to opiates and that was something that happened through doctor prescriptions…Cymbalta! I would rather go through opiate withdrawals than ever come off Cymbalta…that time of my life was some of the worst hell I ever felt.”
Ted tells us what it is like when there is a stigma around the man being the breadwinner of the house. “There is a myth that men can’t get this type of illness and it just isn’t true. He goes on to tell us how he sees the issue, “You just have to re-create your life. For me as a man, it was important to just put myself out there and share my story and just explain to people why this can affect anybody, really.”
I think you will walk away from watching this video and feel inspired that you can still find a way to live a fulfilling life. I have given some quotes from the video here, but honestly, they are best heard directly from Ted in the video.
“Everyone has a path…you’ve got your own journey to go on. For me it was my gaming, my advocacy, it was sharing my story…I can still do it in this capacity, just when I’m well enough, right to be able to share my story.”
I had to share this quote in its entirety as I felt it was so inspiring. This is Ted’s response to being asked what advice he would give someone with fibromyalgia:
“Have faith in yourself. Have faith that you have the capacity to be able to overcome whatever it is that you have to go on. Does that mean you are going to overcome and go right back to being the construction worker or working 50-60 hours a week? Maybe, maybe not who knows. But Have faith in yourself that you can re-create a life for yourself and create things that are positive influences not only to yourself but the people around you. So, while you may get this heavy burden that has been put upon you. You have a duty to be able to take that burden and hopefully be able to lighten that own load for yourself. You yourself don’t’ deserve to have to carry that all by yourself. There are people out there that love you and people who do support you. You just have to be able to step outside your own self and look at the big picture and have faith that you can overcome anything. Not even in a religious aspect just faith in yourself. Believe in you!”
Ted has built a community with his video gaming on Facebook. His community talks about important issues while playing. He also uses this platform to connect with his kids and bring those in the chronic illness community closer together.
“Even if you are sick, even if you have things going on you can still make a name for yourself and you can still put your name out there and you can still make a life. It just may be a different life than you were used to.”
