” The greatest heroes are those who do their duty in the daily grind of domestic affairs whilst the world whirls as a maddening dreidel”, Florence Nightingale
A dreidel is a four-sided spinning top. I loved the above quote but knew not what that word meant. It makes so much sense to me now as the world is certainly spinning out of control and it is the hyper-sensitive, traumatized person who suffers the most, especially if she or he works in a high-stress environment.
This week we celebrated the birthday of Florence Nightingale and I am reminded of the many nurses who write to me on this website suffering from fibromyalgia. There is little doubt that Nightingale herself was plagued with this condition. Those who do their work as responsible caring people live with the daily suffering and the trauma of others. While absorbing the pain of their patients they are often living with their own.
Those of us with fibromyalgia have an overabundance of empathy. It is not easy to disregard the emotions of others; we always anticipate the needs of people in real or perceived distress. Nurses are at the forefront where fear and anxiety are paramount and living with fibromyalgia intensifies the daily challenges. As patients suffer from anxiety their struggles are inter-meshed with their own. Oftentimes it is impossible to separate the two.
I have just completed a book about nurses in training in the 1950s and it is currently at the printers, due for release in June 2018. This book describes the lives of student nurses who worked under harsh conditions while working/studying to become RNs. They are stories of the difficulties these women experienced during their three-year training period.
The devotion to their profession and the uncomplaining ways in which they did their duty is awe-inspiring. Nurses exemplify the best of human qualities. But sometimes their own emotional capacity is overwhelmed and too anxiety-provoking. While this book is not at all about fibromyalgia, nonetheless it does exemplify the intense devotion to the caring work of those who make up the vast number of health professionals. Nurses are unsung heroes and heroines.
” To be seventy years young is sometimes far more cheerful and hopeful than to be forty years old”, Oliver Wendell Holmes
As we age each new year brings hope of change in a positive direction. Less pain, less fatigue, and better quality sleep are the things I wish for. The new resolutions: try not to overdo like I always do on days when a flare-up has subsided; daily gentle exercises if only for a few minutes off and on each day; maybe take a music appreciation class (not like the class I tried to take to relearn how to speak French and had to attend class all day from 8 a.m. till 4 p.m conjugating verbs, ugh! The teachers were terrific, and the program was lovely but I had brain fog.
After one week I quit, exhausted). My new year’s resolution is to practice meditation more regularly; try new creative things but only gradually, not like I did with the quilting (I had never quilted before and by hand I sewed 4 quilts since Easter, without a sewing machine, now I suffer from carpal tunnel syndrome!). That seems like enough for me right now, the quilting (notice the Betty Boop quilt which is very uplifting!)and the French classes did me this year.
Some say that as one age the nervous system of the person with fibro subsides and there are fewer and fewer flare-ups. It seems as though the idea is that as the children leave home, lives become more controlled and pleasant and therefore less to be anxious about. I talk about that research in my book. I want to go on record as saying that for me this has not been the case.
This past year has been spent caring for 92-year-old parents, worrying about my adult children and family relationships, the economy and the impact that has had on my children and will have on my grandchildren, and concern about horrific wars, economic disasters, climate change, and of course as we age there is the growing concern about one’s own mortality and those of people we love.
So I would say that as we age fibromyalgia does not become easier. Living as I do in a cold climate there is always the weather to contend with as arthritis sets in to make the pain even less tolerable during the winter months. I often wonder if the brain fog is just part of the aging process and not necessarily from fibromyalgia? The pain I experience upon exercise could also be from growing older.
In spite of this gloomy perspective, I do have cheerful hope for a better year as I am always looking for the silver lining and I know it is out there in the hands of the neuroscientists who are finding ways of changing the brain and especially working with chronic pain. Don’t miss those PBS documentaries on pain and the brain and keep looking for positive and optimistic messages they convey for those of us who suffer from this demon, no matter what our ages happen to be! It IS easier to change the brain of younger people but it is NEVER too late to teach an old dog new tricks. It is just a slower process.
Happy new year to us all; 2018 has a nice ring to it! I have hope that in this new decade more and more people will gain insight into this dis-ease that afflicts us with such challenges and struggles.
“Caring is pivotal to keeping the human enterprise going, yet its function is invisible in the organization of our daily lives”, Sheila Neysmith
This is my 50th blog and I have never yet discussed male caregivers! In my book, I discussed with the women living with fibromyalgia the issues regarding the people who supported them (or in many cases, those who did not provide support or understand what it meant to be living with fibromyalgia). Their answers often surprised me. I am one of the fortunate ones who has a husband with a caregiving nature.
He is my biggest supporter and without him, I don’t know how I would survive the pain and fatigue. I generally feel guilty about the limitations of my life and how they have impacted him. I have long wanted to write about the caregiving strain of coping with people who have invisible diseases while the work of the carer is itself often invisible.
It can’t be easy since those of us with fibromyalgia usually look healthy, and even the caregiver must wonder at times if we really are suffering as much as we say we are. The irony of all this is that women with fibromyalgia are usually in this state of hyperarousal of the nervous system because they themselves were once super-carers of others! Furthermore, the guilt we experience because others are taking care of many of our needs is a conundrum we are forced to live with.
Before I retired from my life as a university professor I supervised several graduate students who wrote their thesis about the caregiving strain on women, caring for elderly parents. I knew all the symptoms: exhaustion, lack of support, resentment, guilt, limited time for oneself, and so on, but it was generally about women in the sandwich generation, caring for elderly parents while still having children they were responsible for on a regular basis.
Since it has been widely researched, about this issue of women as caregivers, I now find myself in a reverse position of living with a husband who is the primary caregiver in our home. I can watch my spouse firsthand and see much of the publicly invisible work he does as a carer. I am constantly wondering what he must be feeling when he hears another complaint from me about having a bad day, my frequent bouts of hopelessness, my groans of pain, and my sleepless nights.
The guilt I feel when I can’t go hiking with him, paddle a canoe, or have travel insecurities and worries is the guilt I can’t control as it is based upon loss of control. I know how fortunate I am to have such wonderful support and my heart goes out to those of you without that help and going it alone on this challenging journey. I often wonder what he is thinking as he rarely complains about my constant malaise! Many caregivers suffer in silence and worry privately about the fate of their loved ones.
Recently I discovered a site in the UK for males who are taking care of their wives/partners with fibromyalgia. One such person is Maurice. His website is of particular interest to me. I have asked him if he would be so kind as to allow me to interview him regarding his own role in the home since his wife has fibromyalgia, and as well to speak of the issues that are of most concern for him and other men in his support group. He has kindly agreed to do this and his wife Mary has agreed to allow him to share his feelings with us. Thank you, Maurice and Mary.
Maurice: What specifically inspired you and Mary to begin a support group for spouses of women with fibromyalgia? Please respond in the comment section of this blog.
” These are exciting and challenging times for the manual therapy professions. I believe that the pain science world is handing extremely valuable information to clinicians. We now have a greater understanding of the behavior of pain states and we are becoming aware of the molecular targets of manual therapy”, David S. Butler
Dear readers, I apologize for not writing a blog last month, but I have been sick with a cold that would not abate. Nonetheless, as usual, I have still been pondering about the many issues that plague those of us with this demon that can be so debilitating. I search constantly for strategies that could be effective for pain management and my readings and searches often take me to places I had not been before. But no matter where I research I come back to pain and the brain and evidence/research-based strategies. I will never find the cure for my own chronic pain. It is a question of what practices work somewhat and which ones would do more harm. Most importantly how I can avoid flare-ups and not identify myself as my pain to the point where I don’t move coming from a place of fear.
Repetitive actions, long workouts, and strenuous exercise are often harmful, not only to those who have fibromyalgia but to most of us. I remember meeting my physiotherapist Nick Matheson for the first time and telling him I was aiming to speed walk for one hour a day. (I have made reference to Nick on other blogs). His question to me was” WHY?”. Now, I understand the reasons ‘why not. It isn’t that walking for an hour cannot be pleasurable if one is so inclined and the weather is agreeable. It can even be relaxing and have direct positive effects on our brain. But to take this on as a long trek and as something that would provide physical benefits, the research has shown that after about 15 minutes repetition ceases to have many (if any) results. Living as I do in a climate that is rainy, damp, and foggy, walking outside is not often a positive experience. Walking in a gym for that length of time is less than helpful for strength building and boring! So, I have abandoned both inside and outside walking for more than 15 minutes at a time. Evidence has shown that these short walks once or twice a day are more beneficial than a prolonged walk.
I have been thinking about this blog on and off for weeks now and it is difficult to summarize where it has taken me, in spite of the fact that I know it is directly related to pain control/management. One interesting experience I have had recently involves an elderly couple who have found pain control using a ‘foam roller’. Their stories about this apparatus intrigued me and so of course I had to immediately research the topic. It turns out to be something I had used in yoga classes two decades ago and in fact, own a modified version of it myself. Basically, it is a very hard bolster that one rolls on to release soft tissue. One must be very strong to avoid pressing on bones or joints which could be damaged during the process of using it. Foam rollers seem to have been popular two decades ago in Canada among some physiotherapists, influenced by the yoga community and the “core strengthening” craze. In fact, it is a process of self-massage. According to the manufacturers, one must not have chronic pain to use it safely (that is, the pain must be an acute episode), nor any history of cardiac problems, such as taking heart medication, high blood pressure or blood clots and the person must have the strength to avoid coming in contact with joints or bones. Fortunately, this couple is very strong physically, does not have a history of any cardiovascular problems, and can avoid damaging themselves using the foam roller. For them, it has been highly effective in eliminating pain from their lives. Those of us with fibromyalgia could not safely use it, given our weakened muscles, and so that story ended, along with any other kind of apparatus intended to help with pain management in fibromyalgia. While it is possible for those of us with fibromyalgia to build strength, it takes a while, particularly if we have had the condition for a long time. Obviously, the younger we are the better our chances of developing strength at a faster rate.
I know that all of us have heard of various strategies that could help with pain other than medication and off we go to try a new technique or gadget only to find we have a flare-up. I believe it is part of our hope for release from pain that we find a so-called expert, or become enthused with the excitement of someone who has had a positive experience with pain control that leads us down a particular path. I think I have tried it all: acupuncture, yoga, Chi Gong, Chinese herbs, homeopathy, chiropractic techniques, massage therapy, naturopathy, reflexology, flower essences, jin shin, tens machines, osteopathy, Feldenkrais, the list is endless and of course expensive. Finally, after many years I have found that the issue of pain control lies within our own brains. It becomes our own responsibility to use the strategies that those neuroscientists and physiotherapists who have done the research and found the most effective ways of managing the pain on a daily basis. Once again, on my bandwagon: light exercise that can progress to more moderate, movement, meditation, relaxing techniques, quiet, peaceful hobbies that bring joy and are creative for us are among the strategies for those of us with fibromyalgia. Not easy to incorporate into our daily lives, not frenetic, requires discipline, avoidance of alcohol, caffeine, and sugar, keeping stress to a minimum are the ways in which serotonin will be released and pain will be managed if not obliterated. Struggling with pain and taking on the view that it must be conquered cannot do much except exacerbate our anxiety. The idea of being in pain can become hard-wired in our brains; we need to believe in our own capacity to change this image of ourselves and work through it. For me, it involves working on optimism rather than pessimism; not an easy task!
The issue of pain management is difficult for the layperson. I am challenged to understand the vast amount of research on pain and its relationship to the nervous system. The work is undertaken by those in the Noigroup, Soma Simple, Adiemus, Diane Jacobs (all found on FaceBook), and those I have previously cited bring us up to date on the neurobiological evidence, but it is nonetheless not easy to comprehend.
I have been muddling through this one by David Butler and the other books suggested to me by Nick and other international physiotherapists, occupational therapists, and neuroscientists for two years now and it has not been an easy task. This month being National Physiotherapy month, Nick was interviewed on TV this a.m. For several years he has been awarded “The Best Physiotherapist in Halifax” by The Coast magazine. I have been most fortunate to have learned so much from him and some of my other colleagues at Dalhousie University with whom I worked closely for many years. These are evidence-based, PhDs with their own research programs, many of whom are bringing about change to old ways of thinking. I wish for all of you a physiotherapist who understands and, even more, one who can explain neuroplasticity and pain. If one is stuck in the old physio tradition one cannot proceed further unless time is spent by the therapist explaining in lay terms the ways in which one can train the brain and the strategies to employ so that one does not always rely on professionals. If your physiotherapist/physical therapist does not, or cannot explain neuroplasticity to you, search for one who can. It is the way of the future for those involved with helping people in pain. My own fibromyalgia flare-ups have decreased by half during the past two years; for that I am grateful. But of course, we are now faced with two dilemmas. First, what if a person cannot afford a therapist? For them, I would advise that they either go online or get the books I have highlighted over the past several years from the library. It is difficult to do reading by oneself, trying to understand the technical language of pain and the brain. PBS, among other TV stations, has presented many documentaries on the brain which are very helpful. FaceBook information is also available and up-to-date research is forthcoming on FB from the experts around the world. The second issue to be addressed is how to do strengthening, including aerobic exercise without becoming extremely fatigued. Once again, 15 minutes twice a week can suffice initially, longer only becomes repetitive. Those of us with fibromyalgia are subject to great fatigue, so we must proceed with caution and let our common sense guide us. The high-tech gym with the ‘appropriate’ fashionable clothing has been part of the hype of the youth culture. The less we feed into it the more sensible we become. Frenetic activity, wild perspiring, hour-long puffing is not the sign of a healthy person, but rather one who is pushing to excess. Walking is still the cheapest and best way to begin a regime of getting fit.
“Sometimes we stare so long at a door that is closing, that we see too late the one that is open”, Alexander Graham Bell
In so many ways we are fortunate to have access to valuable information which then allows us to take more control over our own lives. I can only speculate about what it must have been like for those who suffered from fibromyalgia for decades without a diagnosis, recognizing what the causes were, or how to work with chronic pain and fatigue. Even worse would have been the cost of trying to find someone who could alleviate the worry. It would have been a time when communication with others who suffered from the same condition (that is, those of us with a highly sensitive personality trait, causing our fibromyalgia) would not have been as accessible.
Before medicare in Canada, it is likely that people could not afford to go from doctor to doctor hoping for a name for this invisible dis-ease. It must be dreadful in those countries whose citizens are not insured and cannot afford visits to physicians. Still, in every country in the world, not just those who do not have access to health care for all, many of us with such conditions as fibromyalgia experienced health professionals who are dubious about the very existence of this dis-ease. So, the question arises: what do we do when we encounter those who do not believe there is such a syndrome as that which we live with day after day? How do we deal with the constant demands of others who do not understand that while we look healthy we are not able to participate in the usual activities that others enjoy? It is only ourselves who can take control of our own situation with those doubters. It isn’t easy.
Summertime when there are crowds at concerts, museums, or on beaches where the noise level can be high becomes especially problematic. It can be overwhelming to even attend family barbecues/reunions when there is perhaps music and laughter and our nervous systems then go into overdrive. Children, young nieces, and nephews, grandchildren whom we love, are by their very nature easy to arouse and excite us.
Sometimes it seems like we have to be in a cocoon just to find peace, while at the same time feeling happy and depressed simultaneously at gatherings that should give us joy. The difficulty is how to set limits on those occasions which over-stimulate us without offending anyone or embarrassing ourselves. Finding a physical space where we can escape for a few minutes and calm ourselves is not often easy, but is so very important to our well-being. Those of us who recognize that the few moments of quiet are necessary to avoid flare-ups must become experts in finding that private space. It’s all about setting limits to what we can tolerate, which at times seems impossible. It is then that we must bring on our strategies, such as taking time to deep breathe, finding a place where we can do a minute meditation, and avoiding as much as possible those who are particularly excitable and cause us to go into overdrive. Practicing these schemes of relaxation can open doors for us that we once thought too difficult to enjoy.
The summer is almost over. Time to gear up for the cool autumn! Relax, breathe, take time to open up a new way of being in the world, think positive thoughts, and move that body as much as possible.
“America is one of the few advanced nations that allow direct advertising of prescription drugs, Robert Reich
BigPharma makes huge profits from those of us suffering from chronic pain, fatigue, depression, anxiety, itching, and digestive issues- to name a few of the common symptoms of fibromyalgia. Every day we are inundated with advertisements about prescription drugs that would alleviate these symptoms. Equally as rich is the vitamin industry which advocates specific supplements for the treatment of fibromyalgia, a few of which are science-based. Generally, we take them willy-nilly without any idea if they are helpful or not.
There is hope with a slow movement to de-prescribe medications, which is especially relevant for those of us with several painful and chronic conditions. However, for those of us living with fibromyalgia, we are used to not being listened to by health care providers. Many would prefer to prescribe a ‘pill’ (or several pills) to help with our ailments in spite of the fact that we are often over-medicated and highly sensitive to medications. Dr. Jaye Cohen advocates “go low, go slow”, and I am a big advocate of that philosophy. Taking medications on a daily basis when they are necessary for life-saving measures is crucial, but even then, what if the quality of life is compromised? What if, like in the case of fibromyalgia, the condition is not life-threatening? The answers to these questions are ones we have to grapple with constantly as we are the final decision-makers. Many of us have sometimes two or three serious health conditions and the medications for each conflict with one another in spite of the goodwill of pharmacists checking on their interactions. The experiences of people with fibromyalgia are unique and even more so among the community of fibro sufferers. One size does not fit all.
A review of the hundreds of comments I have posted over the years could be a rich source of data. I can attest to the vast amount of anecdotal accounts of medications prescribed that have resulted in what can be deemed over-prescribing and a prescribing cascade. The latter is when a new medication is prescribed to counteract the bad effects of another drug. Fibromyalgia is not a disease, but a dis-ease of the central nervous system. Medications have been found to have only limited positive results. Lyrica and Gabapentin are heralded as the medication for fibromyalgia. The TV ads are plentiful and daily about Lyrica. I have taken both in the past, but the serious weight gain has been a side effect and I found that I needed to constantly increase the dosage for the medication to have any results, often with more side effects. But, we are a desperate and frustrated group of people. We are willing to try most anything, hoping for relief. For some the above-mentioned drugs are beneficial; for many, not many works. The above picture is what I had been taking every day, some more than once a day. I worry about the impact on my liver and kidneys. I have decided to come off Gabapentin and in fact, there is not much change to my pain level. Hopefully, it will help with my weight issue. As far as my heart medications I adhere to those prescriptions since to this point in science they are, for the most part, evidence-based. While I worry constantly about a statin, I am searching for one that does not have side effects like the one prescribed for me in the hospital. But as far as fibromyalgia medications there are none that are effective for me, even though I thought for a time that Gabapentin was doing the job! Now, in hindsight, I believe that for me it was the placebo effect. Many though have found it to be helpful and I don’t want to discount their positive experiences.
The books warning of the dangers of polypharmacyare plentiful and many of us want to take control of the chemicals we are taking into our bodies.
But these cascading effects result in multiple prescriptions– one for anxiety, another for sleep, one for depression, another for pain, while still another for digestive complaints, and so on. Please read some of the older blogs’ comments ( there are 110 blogs!) and you will probably be aghast, like me, about the ways in which we have abused our bodies with these chemicals. Do not misunderstand me- many prescriptions are absolutely necessary as life-saving measures, but those for fibromyalgia are not. I am not blaming the victim. We do what we have to do to find relief.
I have tried it all, homeopathy (which has been shown to be merely water!), acupuncture, herbs, vitamins, supplements- I believe I have partaken of all of the alternative/complementary therapies. None have worked. Much money was spent, time wasted, hopes dashed. What is to be done? We must be advocates of our own health, pay attention to science-based prescriptions, watch for side effects, and concentrate on other nonmedicinal or supplemental remedies such as light exercise, watching our diet, mindfulness meditation practice, and avoiding stress. In the end, there is not much else we can do other than train our brains (read: central nervous system) and stop thinking we have a disease, but rather a dis-ease. I have heart disease. I have fibromyalgia which is a dis-ease. There is a big difference, but both of which cause worry, pain, and multiple symptoms, oftentimes I cannot differentiate between the two, which is very frustrating. Many of you dear readers have other chronic conditions alongside fibromyalgia. It isn’t easy living with them all. But, I do have a lighthearted quote I will enjoy sharing with you:
“I believe gelato is meant to be treated as medicine and taken daily as a prescription”, Betty Brandt.
The following birthday card may be somewhat funny, but there is a sad element of truth in it:
“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.
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.
I graduated from Central Michigan University with a Bachelor of Science in Psychology in 2009. I went on to graduate from the University of Michigan in 2013 with a Master of Social Work degree. I became a School Social Worker for 3 years working mainly with students with emotional and behavioral disabilities. Throughout this process, I became diagnosed with several autoimmune diseases. This not only changed my life, but it also changed my perspective. I learned firsthand that there are few supports to help emotionally cope with this major life change. After 3 years of struggling I took my wellness into my own hands through research and finding ways to not only manage my disease outside of the doctor’s office, but to ultimately create a life for myself I could still be happy and fulfilled by. Having been successful in doing this and reflecting on my purpose, I made it my mission to help others experiencing the same difficulties.
In my practice, I provide a validating space for people with chronic illness to make sense of their experiences. I help them work toward effective disease management, process the difficult emotions that come up, and learn skills and tools to help them be successful living life with chronic illness.
I started my practice in 2017 – The idea came from my own personal struggle finding a therapist’s support when I was trying to navigate my first job after my diagnosis. I couldn’t find a therapist who I felt really understood what I was going through or that could offer me tangible skills or tools for managing my illness and figuring out how to integrate it into my life.
I work with a variety of modalities depending on what I feel would be most helpful for the client. I strongly believe in Cognitive Behavior Therapy, as it is heavily supported by research to be helpful for managing chronic illness and chronic pain. I also incorporate Mindfulness, Ecotherapy, encourage creative expression, Exposure Therapy where necessary (a type of CBT), Solutions Focused Therapy, and Narrative Therapy techniques.
We essentially create a plan of action to address the concerns that the client views as most distressing and work from there. Some major areas of interest are typically stress management, grief/loss specific to chronic pain/ illness, communication, problem-solving, relationships, and symptom management, or overall disease management.
Therapy can help through creating a plan unique to the person’s concerns (because these look different for everyone) as well as just having a supportive space to talk about and process everything that has happened, is happening, and will happen. They can build skills for symptom management, get resources and problem solve with a professional as things come up for them in real-time. Therapists can also help with pain management, relationship difficulties that arise inevitably from the added stress, and lifestyle changes required after diagnosis and put together a stress management plan to help reduce added distress. Seeing a therapist does NOT mean or support the belief that fibromyalgia is ‘all in your head’, in fact, it can be empowering and help you regain control over something that feels so uncontrollable at times.
In my area finding a therapist that takes new patients and my insurance is nearly impossible. In addition, finding one that also has experience helping people with a chronic illness like fibromyalgia is even more of a challenge. Therefore, can you recommend techniques that a person can use on their own?
This is a challenge regardless of specialty, mainly because therapy is undervalued and therapists are underpaid by insurance companies. This is a whole other issue, but it trickles down to the client. There ARE more and more therapists specializing in this area though, and I think they need is becoming more and more visible. Most therapists I know who specializes in this area, do so because they have a chronic illness themselves. We are very good at referring to each other around the country where we can because we understand the need for clients to feel supported by someone who understands this unique struggle.
I recommend searching Psychology Today in your area and looking under the therapist’s specialty areas to make sure they specialize in chronic illness. In regards to insurance, there is a great resource called Open Path Collective which is a national lifetime sliding scale program where you can find a therapist for the rate of 30-60$. You pay a one-time fee and belong to it for LIFE so if you ever move and have to switch therapists, you can jump right back on there and find someone who will honor the same fee.
First, ask yourself, ‘What do I want the focus of therapy to be for me?’ Usually, therapists offer a free 15-minute consultation via phone or video, which is a great way to get to know if they are a good fit. During the consultation, they may ask you what your top 3 concerns are, and these can become your goals to work on in therapy.
You can also ask if they have previous experience supporting clients living with a chronic illness, and what their approach for this population of clients typically is (if that is what you want the focus of your therapeutic work to be on).
Also be aware that for us, it is unethical to ask for or elicit testimonials or reviews from past clients, so if a therapist doesn’t have a lot of ‘reviews’ online, this is why. It is not necessarily a reflection of their ability or work.
Absolutely. One of the things I educate my clients about is the fact that Depression is the number 1 co-diagnosed condition with ANY chronic illness. I also let them know that both anxiety and depression can be a part of their symptom cycle and a result of the circumstance of living with a chronic illness. I also see a LOT of trauma related to medical experiences and stigma, which can result in PTSD or anxiety relating to medical situations or events and navigating society with a visible or invisible disability. This area doesn’t get a lot of mainstream attention, but it’s more common than you’d think in the chronic illness community.
I speak at local support groups for all sorts of chronic illness populations and am always happy to speak or present if I’m available. I’m located in the state of Florida and offer telehealth or virtual sessions, which is a great convenient for people whose conditions fluctuate unexpectedly. I also have an in-person office in St. Petersburg, FL, and am currently working on an online school filled with courses and tools for people with chronic illness to access anywhere, anytime. I take Medicare and private pay and offer superbills for people who have access to out-of-network reimbursement with their insurance. I also am an Open Path provider and offer a sliding scale to a limited number of clients as available.
