“Deep, unspeakable suffering may well be called a baptism, a regeneration, the initiation into a new state”, George Eliot
“I have used the above title terms as those which haunt me on a daily basis. There can be little doubt that those of us with fibromyalgia suffer both physical and mental anguish on a daily basis. Which comes first is difficult to say with certainty. Most of us are high functioning people who have been broad-sided by pain and fatigue which causes the suffering and secondarily (my view) we suffer from the psychological after effects of living with the peculiar symptoms which plague us. There are many who believe that those with fibromyalgia have psychological problems that cause the fibromyalgia. My view is the opposite : I believe we have very active lives and then we are bomb-barded by the pain and fatigue which causes emotional uncertainty. However, it is obvious to me that we have many similar personality characteristics and our life stories usually reveal that we are highly sensitive people, many of us with damaged childhood experiences. I am somewhat uneasy about using the term ‘suffering’ as it reminds me of my early Catholic upbringing about ‘suffering up our pain’ to gain indulgences for heaven bound. Suffering mentally or physically (and I don’t know how to separate one from the other) is not a happy uplifting experience, nor in my view, should it be viewed as something that will help us in a presumed afterlife. With fibromyalgia it involves daily challenges and struggles.”
“Before I was diagnosed with fibromyalgia, I was sure I had lupus. The symptoms are extremely similar, and one of them that really had me convinced was hair loss. Every time I washed my hair, the tub was covered in it. Still, when I have flares, I leave more hair behind than my husband, who’s thinning a bit. (Good think he’s a saint so he won’t mind that I mentioned it!)
Eventually, I found out that hair loss actually is a fibromyalgia symptom – it’s just not one that typically makes the brief symptom lists you come across when you’re frantically scouring the Internet to figure out what’s wrong.”
I was glad to have found this article, because I experienced a very strange occurence this past week: my hair began to shed like crazy. A part of me was terrified. Another part of me was amused. Still, there was another part of me that said, “Oh, whatever.” Still, the excessive hair shedding remained on my mind.
Anyone who has known me for a long time, knows that I have taken care of my hair since age 18. I kept my hair natural, wearing loc’s for 14 years. Even since cutting and undoing my loc’s, I have continued to keep my hair in its natural state and have begun using natural products to take care of it. In other words, I am very particular about my hair.
Of course, when I noticed my hair shedding, my mind went to the fact that hair loss (alopecia) is common for Black women. Still, that did not seem to be the correct answer. Then I began to think about my levels of stress over the recent time period and I recognised that I had been highly stress (and still am). Then I thought about my fibromyalgia, and came across the linked article.
Work-in-progress, started November 3,2011, acrylic
These words by Nina Ellis-Hervey were important for me to hear today, especially as I have been dealing with managing my body and my illness. Sometimes I do feel like giving up and feel like I am alone in my struggle to reclaim my life from the grips of my illness.
Although Nina’s words are geared towards those struggling with weight issues, I believe that they are powerful word useful for all people who may be struggling with any illness, physically or mentally, that may cause daily struggle with your body.
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“…I am living life day by day and trying to do everything that way…I am trying to keep in touch with family, with my friends… I have a million and one stressors in my life. And in the past, those stressors made me eat, made me gain weight.
And so now you can see how all that stress could cause me want to want to relapse, to go back to not working out, to go back to not taking care of myself. But that’s not an option. It’s not an option anymore…
It doesn’t matter what excuse you have. You only have one life. You only have one body. And nobody can take care of it, but you. Nobody is going to be responsible for it, but you. And so for me, everyday is a struggle… The battle never ends. This is for the rest of my life.
For the rest of my life, I am going to have to think about where I came from and where I don’t want to go back to. For the rest of my life, I am going to have to think about the foods I put in my body…
I have to always think ahead…I have always prepare myself…and unfortunately, it is a repercussion of my past…and not wanting to go back there…not wanting to even ever let myself go like in the past. I will never do that again.
I owe this to me…You owe it to yourself… It gets to a point that you cannot even listen to outside people. What they have to say is irrelevant…
Your journey is your own…It is not just happy-go-lucky every day for me. I am not just kicking the breeze and skipping through the flowers and the grass.
Some days are hard for me. But when I get back in it, I remember what I am in it for. Adjusting to the new you, it is rough. Everybody is going to grieve the old you…
Anything you do carries. It carries some kind of baggage behind it. I can choose to look as my baggage as negative, or I can choose to let it motivate me to try and to at least do my best…”
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Below is the video of Nina. Again, it is dealing with her own struggles regarding weight. So, watch it if you feel it is relevant to you. In any case, the over all message is a possitive one.
The other day my sister, Michelle, posted the following to my Facebook page:
“Why are you skinny people doing this to yourselves??? I thought insanity was designed for overweight individuals???”
As you might imagine, the “insanity” to which she referred is the Insanity Workoutexercise program by Beachbody and led by Shaun T. Nine days ago, I decided to take the 8 week challenge and have been reporting my progress to friends and family via Facebook. I am happy to say that I have completed each day thus far and intend to continue so doing.
Now, back to my sister’s comment.
You see, she is right. I am not overweight and thus it would seem that I would have no just cause to take on such a workout program. Right?
FIBROMYALGIA (Photo credit: *SHESHELL*)
Wrong.
I decided to take on the Insanity Challenge, because I wanted to prove two points to myself:
1. I can achieve a high level of fitness as a person with fibromyalgia; and
2. I can take care of my body as I choose to without fearing input from others.
——
A world of secrets…
Back in 2008 when I was first diagnosed with fibromyalgia, my body had been changing rapidly. As I wrote in my recent posts, I had gain a significant amount of weight in only a couple of years. You see, before I started graduate school, I worked as a personal trainer and fitness instructor from 2002 to 2004. That period of my life was one in which I experienced a high boost to my body image. I was strong and healthy.
My weight then was higher than what it is now, but it was never a concern to me. My major concerns: strength and endurance. And if there is one thing that I have lamented greatly since having fibromyalgia was the loss of my physical strength and endurance.
With my weight gain came real health concerns, such as being warned about my blood pressure and having some other health issues being labeled as “due to excess weight.”
“If you had 5 minutes…,” collage with magazine and cardstock by Diedré M. Blake, (2010)
It was frustrating to find myself in that state and feeling that I couldn’t do anything physically about it…like exercise in the way that I had in the past. I was too tired. I felt too much pain. There was a bigger issue though…
Work.
As many of you know, I am an art therapist and counselor. I specialize in the treatment of eating disorders. This area of specialization developed from my second year internship and subsequent job. So, why would working within this area create a problem for me? Simply this…
How does a therapist embark upon a health improvement that would mean significant weight loss while reinforcing to her clients that their desire to lose weight was unhealthy?
For a long time, I did not have an answer. I worked in a place where there were strict rules on how food could be discussed and what foods could be eaten. Discussion of weight loss, weight loss programs, and diets was forbidden. This is not to say that these rules were always followed.
Also, there seems to be a very strange expectation, i.e. that all Black women are happy with being overweight. I write this because of various experiences I had while trying to manage my weight issues. The most memorable of these was an experience I had with an older White female nutritionist who worked at a local hospital.
I was given a referral to visit this nutritionist because both myself and my doctor believed that it would be good for me to have professional advice on how to safely and slowly lose my excess weight through diet, since exercise was proving difficult for me. At that time I was about 50 pounds overweight.
I sat with the lady and stated my reasons for coming to see her. From her lips came the following response:
“But you’re Black! Why would you want to lose weight? Aren’t all Black women a bit fatter that everyone else? Aren’t you people use to being like that?”
Now, some may believe that I am exaggerating…but I kid you not. Those were her exact words that are engraved upon my heart and mind. I was in disbelief.
There I was seeking help to lose the weight that was causing me severe health problems…and there was that lady telling me that I didn’t need to lose the weight because of my skin colour. Huh?
——
So, I realized that I had to do it on my own. I decided to take matters into my own hands as I wrote in my previous post. The thing was that at work, although I had explained to some that I was planning to lose weight, there was apparently discomfort that I had made such a choice.
Moreover, I did not discuss just how much weight I intended to lose, because that was no one else’s business except for me and my doctor. Looking back, perhaps it would have been better if I had simply stated a number, even though I did not have a number in mind.
The world in which I worked during that time became closed. I watched as people stared at me with curious and suspicious eyes. I listened as people made side comments about me. I answered as people kept asking me, “haven’t you lost enough now?” or “why are you still losing weight?”
And then there were the painful rumours regarding eating disorders and even my sexuality. It was a truly discouraging time. I often felt alone; and between having fibromyalgia and being the only Black clinician on staff as well as the only art therapist, I often felt misunderstood.
My studio space became a place of refuge during the last year of my weight loss. I watched as people, who were once willing to speak with me or were friendly with me, stop interacting with me. And, in all honesty, the decision to move to Italy came at the right time as who I had been no longer was. The new person did not fit in with my old world.
So, why have I written about this or about anything else?
Because it was time. Especially as a counselor specializing in eating disorders. You see, even counselors are human. 😉 Even we struggle with our bodies, including food concerns, weight and body image.
It is a strange paradox about the world of psychology. As a counselor you are expected to help others in overcoming their problems. At the same time, however, it is seemingly frowned upon by peers if you have problems of your own.
This Cold Hard Floor: II, watercolour and ink painting by Diedré M. Blake, 2006
some of us feel that there is a need to be invincible. That there is a need to hide what hurts us, to hide our struggles, to hide our true selves. We walk about attempting to be the tabula rasa (blank slate) for everyone, including our peers…and it just doesn’t work.
There is a reason why…
many of us, who were once bright and shining candles, finally burnout.
There is always a reason why…
I write about this, as well as the previous blog post, to write the truth about a topic for which I held tremendous fear: my weight loss.
I write because I believe that it is the job a therapist to be human and to show his or her client that there is always a path to be found out of the difficulties of life, not just via book lessons but through setting the example by how we live our own lives and how we take care of ourselves.
“True Mirror Image,” photography by Dolores Juhas (2010). Copyright (c) Dolores Juhas. All Rights Reserved.
So what happened after March 2009?
I decided enough was enough. I was sick, tired, self-pitying, angry at the world and at myself, and just generally feeling that I was inadequate that my existence was quite pointless.
I wasn’t able to participate fully in either my personal or professional live. It was hard. When I looked in the mirror, the image smiling back at me was still sad. I decided then that neither Fibromyalgia nor my mind nor my surrounding was going to stop me from finding a way to live.
I decided to do what I could do…take one step forward. I joined up with two other ladies to do a walk/run for 15 minutes for most mornings.
I decided to do Weight Watchers Online for three months to learn more about nutrition and to be inspired by others who were taking positive steps to make effective changes in their lives.
I decided to become vegetarian, slowly (and I mean very slowly) removing meat products from my life.
I decided to begin learning how to love myself as I was in that moment, not lament who I had been. I wasn’t always successful, and sometimes I still struggle with that.
I decided to become more natural with my medication, finding ways to decrease the amount of medications that I had to take. It took consulting with my doctors and taking time to research, but it was worth it.
I temporarily joined a Fibromyalgia Support Group (though I did not always find it supportive, especially when it came to improving my physical health).
I began to speak out more about my needs and take steps at work to make sure that others understood the nature of my illness.
Waiting, photography by April Rivers (Fall, 2010)
The Result?
After almost two years of doing this work, I found myself a bit more than 70 pounds lighter. My blood pressure which was unreasonably high was lower. My body that I could barely move most days began to move more. My mind was less foggy. I began to wake up to many realities of which I was not aware.
And finally, I became aware of something that I knew to be psychologically true…but never imagine I would ever experience. I became aware of the fact that people were angry about my changes.
I had to deal with rumours about my weight loss, i.e. how I lost weight, for whom I lost weight.
Of course, when you go from a larger size to a smaller size, you need new clothes. I was fortunate to receive some vintage clothing from April’s grandmother, which were more fitted to my figure. Wearing these clothing turned into gossip that I was trying to attract men…even though these people knew that I was married and highly committed to my marriage.
“The Revenge of Pride,” photography by Dolores Juhas (2010). Copyright (c) Dolores Juhas. All Rights Reserved.
There was also a humorous side to all of this (actually, I found the rumours humorous too). I discovered that suddenly people felt more comfortable giving me compliments. I even had someone say that they were surprised by how good I was looking lately.
Suddenly, too, many people were ready to chime in on my general appearance: how I should look, what I should wear, what my weight should be.
I guess you could say that losing the weight brought me both joy and distress. I was happy to be free from some of the physical difficulties posed by my weight gain…but I was equally distressed by the growing hostilities coming from various parts of my life. Still, I do not regret it.
And then…
I cut my hair and moved to Rome, which brought on a whole host of other issues, of which you can read about in earlier postings in my blog.
———
Until Next Time,
D.
P.S. Check out School Psychologist and Professor Nina Ellis-Hervey regarding mind and body well-being. Link to her website here. Also visit her YouTube site “BeautifulBrownBabyDol“…You won’t regret it.
Some time ago, I wrote a post regarding a professor who asked me to do creative writing about my experience of having fibromyalgia (FMS). It is true that I have written poetry that deals with the subject, and even began a somewhat semi-autobiographical novel some years ago. Still, I remain uncertain of retaking such paths. Instead I am now considering what it would be like to write about my process of change, i.e. change towards improving my life.
The reality of living with FMS can be one that is punctuated by a series of losses: continuous loss of health, loss of self-perception, loss of self-esteem, loss of employment, loss of status, loss of friends, loss of family, loss of supports, etc. The list could go on ad infinitum.
On a weekly basis, I take time to research the latest developments in the treatment of fibromyalgia. Typically, the titles are filled with words such as “fight,” “battle,” or “war.” Of course, I understand the desire to motivate those who are living with FMS by using such words. Who amongst those of us with FMS, hasn’t felt as though fibromyalgia were waging war against our bodies, our minds, or even our very souls?
27/365: fractured reality/grace under pain (Photo credit: Samie Harding)
Still, why fight against? Why scream a battle cry? Why wage war? For what purpose? Our bodies are the spaces in which we exist daily. Why should we be in conflict with it?
Mother Teresa said, “I will never attend an anti-war rally; if you have a peace rally, invite me.” I am in agreement.
I choose never to be anti-fibromyalgia. I choose, instead, to be at peace with fibromyalgia. It is a part of who I am. It is living within my body. Thus, embracing, rather than rejecting it, is the obvious choice for me. It is a matter of shifting one’s mindset.
So, what is this next step? Beyond having shifted my mindset, I have decided to take the step that I have been utterly avoiding for a multitude of reasons. I have decided to become vegan and live gluten-free (I am already vegetarian). As some may know, animal bi-products as well as yeast and gluten can provoke digestive problems, especially for people with IBS, which many people with FMS experience.
End of Summer Still Life (Photo credit: mystuart)
Moreover, I am letting go of other foods that can create disharmony within me, such as nightshade fruits and vegetables that aggravate pain: tomatoes, potatoes (not sweet potatoes), eggplant, and sweet and spicy peppers–yes, I know I am living in Italy. 🙂
Will this be challenging? Perhaps. Is it the right time? Absolutely.
At the start of this post, I wrote that fibromyalgia can be about loss. Well, that was my mindset about taking this next step. I was focused on losing.
In my mind, all that I could see was that I would be losing, once again, more foods that I love (in this case: milk, bread, and the above-mentioned fruits and vegetables). Furthermore, the thought of having to “lose” certain foods felt too much like “dieting,” of which I am not a fan, i.e. unless absolutely necessary for medical reasons.
I could not see the gain. I could not see the invitation for living a peaceful life with my body, and thus with fibromyalgia.
Yes, it is true that FMS can push one to leave behind old and unhealthy patterns, even places and people. Yet still, it causes us to arrive at a new understanding of ourselves, learning and using new and healthier patterns, experiencing new internal and external places, and meet new people who can support us as we make our journey.
vegan food pyramid adapted from recommendations made in “A new food guide for North American vegetarians” (2003) from the American Dietetic Association (Photo credit: Wikipedia)
I am excited to have taken this next step, and am doing so with the help of The Vegan Society that offers a mentor for 30 days (The Vegan Pledge). The next thirty days begin my journey towards a new way of eating and living. Over those days, I will update as I can, including places in Rome and in the U.S. that are vegan and gluten-free friendly.
Cheer me on, as well as yourself and others, on taking another step towards living peaceably with FMS!
What I have come to realize is that I am a fairly happy person when I allow myself to be. What I have come, also, to realize is that I can be a fairly unhappy person when I allow myself to be. What does this all mean?
Living with fibromyalgia involves living with, not only pain, but uncertainty. One is never quite certain what the next day will bring. Will I be able to get up? Will I be able to function well? I believe it is the uncertainty that can create the opportunity for unhappiness to develop, especially if there are predisposing factors.
The point of this post today, however, is not to get into a heavy psychological discussion. Rather, I wanted to point out that what I have found/find/am finding most beneficial to me in maintaining/accessing my happiness is taking care of my body.
Thus, I would say to others, who are dealing with fibromyalgia or any challenges physically or emotionally, find a way to take care of the physical you. Treat your body as sacred. Find new ways to make your body feel at its best.
This time it’s green tea. (Photo credit: Wikipedia)
Lately, I have been doing green tea facials, which has left me feeling more peaceful and accomplished. It is a small thing, but an important part of what makes me feel happy at both the start and end of my day. By doing this one action of self-care, I know that, at least, in one way, I am taking good care of me.
Also, along with taking care of the outer body, there are many books about the types of food that help people with fibroymalgia to feel better, such as
Yes, having fibromyalgia can mean doubting the capabilities of your body on any given day. It may mean that you may disappoint others because you are unable to do things as you have once done or promised to do. Simply remember this, when all else fails, try to K.I.S.S. your life. That is, try to Keep It Simple and Sweet. And never forget that…
Your body does not define your worth.
However…
How you treat your body does define your self-worth
The invitations have already been sent. The preparations have already been made. Nevermind why you have been chosen. Nevermind why you cannot refuse. Fibromyalgia welcomes you…and asks you
“How shall you live this life?”
The house into which you have been welcomed provides an entrance but no exit. The walls upon which you now stare are absent of windows. There are stairs placed here and there, but that lead nowhere.
And still the question lingers,
“How shall you live this life?”
The daytime brings some light but never enough to provide sight. The nighttime brings the descent into the darkest parts of your being. There is limited sight. And what cannot be seen must be felt.
Now the words come to your mind once again,
“How shall you live this life?”
Through the cold and the warmth of passing seasons, you use what provisions you have brought with you. Through the cold and warmth of passing reason, you understand that these provisions are increasingly dwindling.
Seasons (Photo credit: *~Dawn~*)
Yet still, the demand persists,
“How shall you live this life?”
There are times when you hear knocking at doors that you can neither see, much less open. There are times when a ray of sunlight shines through the cracks of the wall, reminding you that there is something more than this experience.
27/365: fractured reality/grace under pain
(Photo credit: Samie Harding)
There are times when you cannot sleep. There are times when you cannot eat. There are times when you cannot move. There are times when you cannot remember. There are times when you simply cannot… anything.
Then suddenly everything changes one morning. You open your eyes to see that you have never left all that you once thought lost. You open your mind to feelings of hope and joy. You open your arms to embrace family and friends. You open yourself to experiencing life at its fullest.
Black (Photo credit: Wikipedia)
Then suddenly everything changes one morning. You open your eyes to see nothing but the all-consuming darkness. You close your mind to feelings of hope and joy. You open your arms, only to close them around disconnection and doubt. You are closed to experiencing your life as you have known it. Thus…
By understanding that even in the darkness and emptiness of fibromyalgia, you can still find the tools to help you in reconstructing the house in which you now find yourself.
The reality is that no one can save you from fibromyalgia. No one can fix this house for you. No one else can live your life for you. There is no running away. There is no mental escape. There is only the fact that…
only you can make a home for yourself out of this house of fibromyaglia. And even the act of simply choosing to do so is the first step to finding the door.
Make this house of fibromyalgia your next Do-It-Yourself project, and have fun with it! Imagine what would make this house a home for you.
Toward the within... 