Why I changed my life. (Fibromyalgia)

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Eleven years ago, in 2011, I began this blog to document a new phase of the journey of my life. To be honest, the new phase started in 2008 when I was first diagnosed with fibromyalgia. In 2010, I made a significant decision, the kind that is not easily reversible. I decided to walk towards the unknown. I decided to step within and uncover or discover a different way to live.

Flying to…

Certainly, walking towards also means walking away from. I left behind a life I worked hard to create and tried to live. The reality, however, was that life threw me curveball in the form of fibromyalgia. Back then, I had many reasonable feelings and perhaps some unreasonable thoughts about developing this chronic illness.  

My feelings ran the gamut, from anger to fear to sadness to happiness (after all, life can always be worse). My thoughts were both pratical (how can I survive like this?) and seemingly impractical (how can I move to Italy?).

Only two things were certain: the present could no longer exist, and whatever future I have, I would need to trust to instinct and chance because I could not trust my body to function as usual. I needed to learn to accept that I was no longer who I once knew myself to be.

New Cover Art for YouTube. Click to Visit Vlog: Rome Off the Beaten Path.

You may be wondering why I decided to write about this topic today. Recently, a friend told me that they were asked by someone else, “So, why did Diedré leave her previous line of work (considering the renown of the hospital)?” It made me realize that it may be difficult for others to understand my path.

Sometimes in life your life may seem ideal to others. They may think, “You have everything I would like.” This way of thinking is not inherently wrong. It is merely uninformed. We cannot fully know or understand the intricacies of anyone’s life. It is enough to take on the challenge of knowing and understanding our own.

Ajigaura Beach, Hitachinaka, Ibaraki, Japan

So, why did I decide to go towards the within to the unknown parts of myself? Because I needed to find a new way to live, to understand myself, and I am naturally curious about the world around me.

Thirteen years ago, I sat in a fibromyalgia group support meeting. I was the youngest member of the group, by about 10 years. Listening to the group members, I learned how much fibromyalgia had changed their lives… for the worse. They could no longer work, had difficulties with daily functioning, were angry, sad, and frustrated with the hand that life dealt them.

I didn’t see their path as mine. I decided to find a different way, even if others may not understand it.

Hitachi Seaside Park, Hitachinaka

I am now in same age range of those fibromyalgia group members. Over the past decade, I have travelled quite a bit, studied, and am now working full-time. It is a very simple life that I have crafted based on my abilities and health.

I don’t know how life would have been if I had continued on my original path. I do know that the path I chose has led me to learn more about the world and myself.

If nothing else in life, know this: only you can live your life, and only you can change your path.

Until next time.またね(⁠^⁠^⁠)

With What Time…

Photo by Ian Lai on Unsplash

And so I break my silence. It’s been more than a year since I posted. In the interim, I have been on a new journey in Japan. I moved to a new city, am trying new things, and learning more about the world in which I live. Life, with all of its many intricacies, is wonderfully fascinating–when we slow ourselves down enough to appreciate the ease and challenge of it all.

まだ静かなりたくないです。声まだがりますだから。命は本当に面白いですね。。。でもよく私たちは気に付きません。毎日働きまして心配して食べすぎる飲みすぎる「これは命です」と言います。そして。。。

Ich wünsche mir, dass wir einen anderen Weg finden können. Jeden Tag versuche ich zu verstehen, was eigentlich der Sinn meines Lebens ist. Ich habe noch keine Antwort. Jedoch bin ich glücklich.

A volte mi chiedo dove dovrei andare. Dove potrei trovare la mia casa, la mia famiglia, me stessa? Dove sarò domani o dopodomani? A volte sembra che qualsiasi cosa facciamo e chiunque siamo o scegliamo di diventare non sia mai abbastanza per gli altri.

Still, I am enjoying the process of it all. As such, I have decided to begin writing again. I am still working on teaching myself Japanese, trying my best to keep Italian and German.

Also, every now and again, I remind myself that my thoughts exist in English, too.

With What Time I Have

let the snowflakes fall,
turn my hair from black to white,
smiling, I drink tea.

Con il tempo che ho a disposizione

I fiocchi di neve cadono, trasformando i miei capelli da neri a bianchi –
sorridendo, bevo il tè.

Mit der Zeit, die ich habe

Schneeflocken fallen und färben mein Haar von schwarz zu weiß –
Lächelnd trinke ich meinen Tee.

この命の時間に

雪が降って、私の髪を黒から白に染める -。
微笑みながら、お茶を飲む。

Sometimes we cannot understand our paths as we walk. Sometimes we are judged, rightly or wrongly, for what we choose. What I have come to understand is that the most important thing that any of us can do is live…and live now.

So, with what time you have, how shall you spend it?

As for me, I am enjoying my tea and watching the seasons and myself change.

Until next time…

Life in Japan | Autumn (Poetry) #Japanese #English

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雨が降ていました。

風に紅葉が吹きました。

私の声が静かになりました。

私を寒さや静かさが流れてきた。

It was raining.

The wind blew the autumn leaves.

My voice became quiet.

The cold and quiet flowed through me.

Life in Japan | It’s Okay to Cry… Really.

Hitachinaka, Ibaraki, Japan. I cried today. It’s my way of coping with difficult situations, especially those in which I have limited freedom to speak my thoughts.

Surely, we can say whatever we want to whomever whenever…as long as we are willing to deal with the consequences. I prefer to let my tears speak rather than my mouth because I would rather the judgment of my tears than the recklessness of my words.

For many years, I felt ashamed of my tears. I thought crying made me inherently wrong and weak. I wanted to be stoic because that symbolized emotional strength, the ability to “endure pain and hardship without showing [one’s] feelings or complaining.”

In my experience of living in Japan, being stoic has been elevated to an art form. It seems to be the preferred business stance. It can make showing emotions seem not only embarrassing but potentially job threatening.

Still, I am learning that it is far more important to me to be myself, whatever and however that self is. I cried today at work and will likely cry again in the future. Expressing my emotions through tears is just the way I am. I cry when I happy, sad, angry, and fearful.

And nowadays, when I finish crying, I feel a profound sense of relief and release. I can breathe and move freely once again.

Life in Japan| Envy & Other Uncomfortable Emotions

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Hitachinaka, Ibaraki, Japan. It’s been a long day, and I’d like nothing better than to go to bed. However, I want to spend a little time discussing a topic that has been on my mind: envy.

The American Psychological Association defines envy as “a negative emotion of discontent and resentment generated by desire for the possessions, attributes, qualities, or achievements of another.” It can often be confused with jealousy, which requires a third party to be involved. And it can be very challenging when you experience both simultaneously.

There are various reasons why one might feel envious and/or jealous. At the core of these feelings, however, lies insecurity, which brings me to the main point of this post: difficult feelings (negative emotions), like envy, are just an indicator that you need to stabilize your sense of self.

Your foundation, for whatever reason, has become shaky, weakened and in need of repair.

Yesterday, while roaming the streets of Tokyo, I spent time talking with my friend about her experiences with envy and jealousy. It gave me pause for thought about my journey over the recent years. To say that I felt insecure would be an understatement. I lived with a number of uncomfortable emotions, including envy and jealousy.

Photo by Jacob Prose on Pexels.com

Instead of denying these emotions, pulling away because they were undesirable (negative) emotions, I chose to be curious about them. I leaned into them. I wanted to understand why they existed within me. Why did I feel envious? Why did I feel jealous?

Surely, there were external factors and a childhood history that created the perfect breeding ground for such emotions to thrive. Furthermore, I understood my experience of jealousy better than envy because I had encounter this feeling in an early relationship. Being envious of someone was new and, to be quite frank, nonsensical–I had no reason to feel envious. Thinking about it with a rational mind, I could see that there was nothing about which I needed feel envy. Still, I did feel envious…and so I tackled it head on.

Overcoming uncomfortable emotions takes a willingness to self-confront, nonjudgmentally and with grasp on the concept of taking ownership of your feelings. Regardless of what has been outside of your control, you always have the choice to take control of you, of your mind, body, and emotions. By taking control, by understanding that your next step forward is in your hands, your feelings of insecurity can begin diminishing.

Of course, it’s easy to write the above. It’s far harder to live it. Still, one has to decide what is more important: living with the burden of these uncomfortable emotions or living freely and comfortably as who you are.

One key tip: it is far easier to stabilize your foundation and heal when you remove/separate yourself from the toxic relationships in which you have chosen to engage. Do that, and a great deal of change is awaiting you.

Life in Japan | Day Trip to Tokyo & Mental Programming

Pedestrian Crossing, Shibuya, Tokyo

Somewhere, Tokyo. For some time now, I’ve been decoding and rewriting my mental programming script. It’s been a slow and challenging process, but an exciting and rewarding experience. Today represented the rewriting of another line of code: I went to Tokyo.

Since arriving in Japan, I have travelled little outside of my prefecture. However, the few times that I have ventured out have been marked by emotionally and mentally difficult experiences. Tokyo (or the thought of spending time there), in particular, has been a trigger for unwelcomed memories, anxiety and thoughts and feelings about self. So, I decided it was time to tackle that. I made a plan with a dear friend to meet in Shibuya for lunch and shopping.

109 Mall, Tokyo

The morning started early for me (I left home at 5:00 to catch the train), and I could feel my anxiety level rise with every step I took to the train station. Luckily, I brought my knitting and crochet to help manage those feelings. By the time I arrived in Tokyo, I felt ready to see the city with an open mind and without the weight of the past.

I met my friend as planned, walked around the city, visited shops, had a great lunch, and laughed a lot. It was fantastic! I felt…happy. More importantly, I felt strong, confident about myself and my place in the world. I am truly grateful to my friend, who has been a like a ray of sunshine for me on emotionally cloudy days. Thanks!

I am proud of myself today in many ways.

Fibromyalgia | Its Impact on Body Image & How to Improve Yours

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Scale? Check. Tape measure? Check. I’ve got some basic tools for body assessment. Oh, I forgot…I have a full length mirror, too. Check. My eyes, armed with a pair of glasses, seem ready for the task of looking, with extreme subjectivity, at my physical self.

Body image. I’d like to spend time talking about my own today.

Over the past decade, there have been some studies done on body image and women with fibromyalgia. What the research shows is that women with fibromyalgia experience a disturbance in their body image due to how fibromyalgia negatively impacts “self-identity, mental function, activity limitations, healthcare experiences, and quality of life.”

First, however, what is body image? The National Eating Disorders Association (NEDA) defines body image as “how you see yourself when you look in the mirror or when you picture yourself in your mind.” This encompasses 1) what you believe about your appearance, 2) how you feel about your body overall, and 3) how you sense your physical experience of your body within space. The story that accompanies our perception stems from the messages we received in childhood about our body and the bodies of those around us. Body image, whether positive or negative, can change over time due to various factors. Body image isn’t static, it’s a journey that we are all on throughout our lives.

Given my background as an expressive therapist, specialized in the treatment of eating disorders, I have avoided discussing my body image journey. However, in light of the growing awareness and conversation about this topic, I would like to share some aspects of my experience.

The Journey

Prior to my diagnosis, my body image was more on the positive side of the spectrum. I saw my body as quite strong, flexible, and healthy, having spent the years prior devoted to weight training, yoga, and maintaining a fairly decent diet. My weight would have been considered on the higher end of my weight range for my height. However, I was not concerned about this due to my muscle to fat ratio. In essence, I perceived myself as a healthy 20-something-year-old with love for dancing as many days of the week as I could.

When I began feeling ill for the first time in 2006, I felt confused and tried to find answers. My weight began to steadily climb upwards while my body’s abilities began a downward spiral. By 2008, I could barely recognize myself in the mirror. My body was no longer fit and the scale showed a number that I could never have imagined at that time. More importantly, my body couldn’t do what I expected it to be able to do.

For the first time, as adult, I felt ashamed of my body…and at a lost as to what to do.

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The immense daily pain was unreal and unwelcomed. The fatigue, however, was the thing that made life unbearable. In my mind, I thought I could push through the pain. However, if I couldn’t even get up to begin that process, then what was the point? Luckily, my resilience has always been high. I made a plan to take control. Unfortunately, my focus was solely on my weight, not on the impact that my illness was having on my mind. Furthermore, I didn’t considered the consequences that losing weight would have on my intrapersonal and interpersonal relationships.

I became vegan and began walking for an hour every day. Over a period of two years, I lost twice the amount of weight that I had gained. I removed the word strong from self-description and added weak. I felt weak, tired, and in pain. I was, however, not as heavy as before. However, the years spent with the scale as a companion had had a severe impact on my mind. In addition, when I looked in the mirror, I didn’t recognize myself. It didn’t help that, at that time, I was also in the midst of some major life changes (separation, resignation, moving abroad, etc.).

I made the one mistake that I knew better not to make: I thought, “I don’t have time right now. I’ll have to figure it out later.”

It took almost a decade, but later finally came.

I prioritized creating my new life in Italy, leaving the old life in Massachusetts behind, and disregarding the reality of my increasingly fragmented self. In essence, I didn’t want to deal…and so I didn’t. The alarm bells began sounding about 5 years later when I found myself living in America once again. My weight had dramatically increased once again due to poor self-management while living in a stressful environment. Still, I decided to take the old approach–focus on the weight gain and not the mind. It was easier to focus on that rather than unravel the chaos of my internal and external world. As such my weight went down then up and then down again, while my body image continued its descent to rock bottom.

When You Hit Rock Bottom: There is Only Up

Just over two years ago, I hit rock bottom in multiple areas of my life (with the exception of work). I became aware that I had been choosing a very toxic, self-sabotaging path. So, I decided to change one thing at a time, including my relationship with my body.

If you do a quick internet search on improving body image, you can find countless articles on what steps to take. From what I can see, most of the advice is on point and doable. They are effective, if you are in the mental space and emotionally regulated enough to do them consistently. Fibromyalgia, however, can leave your mental space feeling limited and your emotions seriously dysregulated. So much of your time is spent managing fatigue or pain or both…and trying to manage the emotions that arise as a result.

Once I made my decision to improve my body image, I started with only one thing in mind:

shifting my focus.

I shifted my focus to what my body can do in the moment (not yesterday or tomorrow, etc.)–just here and now. In addition, I created goals, answering the following question: what do I want my body to do?

I put away the scale. I returned my tape measure to my notions container, put a message of affirmation on my mirror. I realized that I had stopped looking at myself in the mirror. Now, I make it a point to look at myself twice a day in the mirror. This is done with curiosity and without judgement.

I decided to become friends with my body. It’s a pretty cool body that can do many things. I want to learn more about what it can do, what it likes, and what it needs. I have also started getting clothes that fit properly and feel good. I want to understand more about my body’s style preferences.

Most importantly, I am grateful to my body for its strength. Despite the high levels of stress, the ongoing pain, and staggering fatigue, my body keeps going. Thanks, body!

Improvement Tips

Beyond the many lists I have only two tips:

1) become curious about your body, and

2) become your body’s best friend.

We spend a lot of time within our minds instead time within our bodies. We try to use our minds to control our bodies. We may think that we have a problem with discipline, not exercising enough or eating too much. Well, how about just stopping to listen to our bodies? How about letting your body tell you what it needs? Maybe it needs more sleep, massage, acupuncture, stretching, or to go for a nice walk.

You won’t know until you to stop to listen to your body.

Life in Japan | A Strange Welcome to November… A Late Night Fire

From My Balcony

Hitachinaka. Let’s begin with the title of this post. The above image is from late last night. I woke up to alarm chimes and sirens, the intensity of which caused me to get up and take a look.

What I saw caused my heart to sink…My neighbour’s home was on fire. I said a prayer for my neighbour and watched as the emergency services frantically worked to manage the situation. Other neighbours gathered and looked on with horror while a news photographer ran swiftly to capture the unfolding event.

As of this morning, a lone fire engine remained; the firefighters seemed to be investigating the little left of what was once there.

It is a sad reminder that this is also life: managing catastrophes and surveying the damage to make sense of and learn from what has happened.

A New Friend

In contrast to last night’s sad event, I have been spending time considering the concept of home. For most of my life, I have never been able to define it, with little success until now.

I’ll be honest, the thought of defining home has been terrifying. Home, up until recently, brought forth nothing positive in my mind. Like Deirdre of the Sorrows, home represented conflict, isolation, and unhappiness.

Home was a structure filled with the intentions and will of others, a place in which I acted a part that fit the psychological and physical needs of others.

Natural Bamboo Speaker

In my previous post, I wrote about my issues with codependency. So, let’s be clear: I chose, whether consciously or unconsciously, to live in this manner. As an adult, I have always had a choice in how I live my life and with whom.

For over two decades, I chose to avoid creating my home, internally and externally. The past, luckily, remains the past.

What matters now is now.

My life in Japan has taught me that I can create home, a home that is peaceful and filled with harmony and love. More importantly, home lies within me. I can take it wherever I go, recreate as I choose because it is mine.

Perhaps one day I will decide to create a home with someone else, one that can hold the love and happiness as well as the challenges of a family. Even then, my home would still remain.

My Shrine Book (御朱印帳)

Home is a sacred internal space that one manifests externally.

As my neighbour’s home burned, I thought about my physical home and felt calm. My home is within and so can be recreated. Thus, I live free from the suffering of worry of losing home.

To my neighbour, I continue to offer my prayer and hope for the safety of all. Let the sorrow of this moment pass as all emotions, with time, do. Homes can be rebuilt. Let the next one be filled again with love and happiness.

Life in Japan | Learning to be real and letting go of codependency

Kasama, Ibaraki. It’s another grey day, the kind of day I find ideal for self-reflection. I have travelled to another city to see the local chrysanthemum festival. It’s not a long journey, about an hour and a half from start to finish…a little less if you count the mad dash I made to catch the bus to the train station.

After four and half years of living Japan, I have begun truly exploring my world. Sure, I visited Tokyo and Kyoto, got close to Mt. Fuji and visited some famous shrines. However, I was never really invested in visiting those places.

I was simply following along with the desires of others. This has been one of my biggest challenges in life: unlearning my codependency.

I was raised to be self-sacrificing, trained to be self-effacing, and taught that I was unworthy of unconditional love. With poor attachment and thus even poorer boundaries, I tried to navigate life through pleasing others in a bid to find acceptance, a place of belonging.

Some young version of self had been desperate for someplace to call home and for someone to call family. Some of you may be familiar with this feeling.

My navigation has led to a thoroughly interesting life that has provided (and continues to provide) me with opportunities for self-development. If living in Italy taught me about the importance of connecting with others, then living in Japan is teaching me about the importance of putting forth my authentic self.

In a culture that values the public face (建前), I have decided I no longer need my masks…because I am who I am. There is a beauty to being exactly who I am at all times. I laugh, cry, feel frustration and anxiety…sometimes all at the same time!

Expressing my true self, my “true sound” (本音), is my daily flow now. I am listening carefully to myself for the first time. I am giving myself the attention that I gave so freely to others in the past.

I feel zero shame or guilt for having been codependent. Codependency was my tool for surviving life. Certainly, I am glad that moving forward I don’t have a use for it.

I am a highly sensitive and empathic person who has spent enough years trying to conform to expectations of others, regardless of those expectations. It isn’t and wasn’t healthy.

Understanding how and why codependency serves a purpose in your life is key to making the changes necessary to shift your life from one of merely surviving to one of meaningful thriving.

Letting go of codependency doesn’t mean that you stop caring about others. It means that you have started:

  • caring about yourself
  • listening to your needs
  • honouring your feelings
  • clearing internal and external sources of toxicity (psychological and physical)
  • learning about yourself
  • focusing on fully crafting your own life, and
  • putting yourself first.

This list could be longer. However, I think you get the point. Overcoming codependency means acknowledging yourself as a being worthy of good things/experiences…and that you can give yourself those things/experiences.

Umbrellas, Kasama Inari Shrine

Codependents are like chameleons, changing their outer expression of self to adapt to their environment, hoping that they will not become prey for predators. If I change, blend in just enough, then all will be well. It won’t. You will only lose yourself in the process.

Did you know that chameleons in their natural states are lovely shades of brown or green?

Letting go may not be easy. However, it is worthwhile. Seeing yourself for who you are, understanding what drives you, and loving yourself for all that you are and are not is the reward for choosing the process.

Be you, whoever that may be. Let others be themselves. Create strong boundaries and never lose sight of yourself.

Many thanks to those who have helped me to arrive at this point in my development. It’s been quite the journey to loving myself as I am. I will continue to create my path and share my process.

Now, it’s time to return home.

Life in Japan | Begin Where You Are

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Mito, Ibaraki, Japan. Weather: Rainy.

I’m sitting in one of the many cafés I consider a second home, watching passersby struggling with or embracing the rain. It’s Sunday morning and early enough that the late night clubgoers are still heading home. I am in awe of the high schoolers heading off to club activities and the salarymen who are likely heading to work some more. An obaachan holds on to her umbrella for dear life, her hands look gnarled yet strong and her bent back has seen its fair share of field labour of potato and rice harvesting, I imagine. That’s right, I am imagining, imagining the lives of the many people who happen by and who will likely remain unaware of my observation. What about my own life?

Recently, I have taken another step, shifting away from simply observing to taking action. A life lived in limbo is a life left on pause. I decided it was time to press my play button and see what happens. It’s a wild yet freeing feeling. I am learning to make peace with who I am and where I am in my life. Beginning where I am as who I am…what a crazy notion, at least for me. And it all began with a simple question: who would I have been if [insert whatever traumatic experience] didn’t happen?

Upon waking, I thank the universe that I have another opportunity to continue on this interesting journey called life. I am grateful for my breathing because I know that I am here. I make my bed with pleasure. I stretch for a moment and then clean my apartment…and then stretch some more. My body still feels heavy because of old experiences and thought patterns. However, I am feeling lighter in my heart and body as each day passes. I make a simple breakfast and lunch–I am practicing letting go of greed. I am letting go of suffering.

Photo by Nandhu Kumar on Pexels.com

Actions taken without worry, without the nagging inner critic or concern for the outer critics. This is the type of life that I am creating…and it is empowering. I am learning how to listen to feedback, whether from self or others, nonjudgmentally, taking from it what I find necessary for self-improvement and letting go of the rest. Freeing myself from the suffering of shame, the feeling of being inherently wrong as a human being, is my work now. I have discovered that my mind left without self-compassion is a dark and seemingly unruly place. I have also discovered that I am not my mind, nor am I my body. I am who I am.

Understanding that I am and am not has been crucial to pressing the play button on my life. I can observe the parts of myself, my mind and my body, with curiosity and then with intention. How shall I shape my mind to think? How shall I shape my body to move? My mind is my canvas, and I am the painter. My body is my clay, and I am the sculptor. In this way, I am choosing to move forward with my life.

Recently, a friend shared with me her knowledge of kintsugi (金継ぎ) or kintsukuroi (金繕い), the Japanese art of mending broken pottery using gold, silver, or platinum. She said to me that she thought that it was a lovely metaphor for when we are feeling broken in our lives and trying to mend ourselves. That is, that we can choose how we mend those places in which we have experienced hurt, to make those places and our overall sense more beautiful and stronger in the process.

So, in letting go of suffering, taking action in our lives through acknowledging ourselves, not just as mind and body, we can begin where we are on our journey and heal those places in which we have experienced hurt. We can begin creating new paths to an authentic self.

Have a beautiful day today and every day.

D.