Category: Health

Why I changed my life. (Fibromyalgia)

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Photo by Nandhu Kumar on Pexels.com

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(⁠^⁠^⁠)

Self-Care| Letting Go of Promises & Finding Peace of Mind

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Untitled. D. Blake, 2017

It’s a grey day, I’m at Starbucks, eating a strawberry cheesecake scone and drinking iced tea, and I feel a little tired. I started my morning by taking a long walk, looking at flowers, and listening to The Tao of Fully Feeling by Pete Walker. Yesterday, I finished Walker’s Complex PTSD: From Surviving to Thriving. On a daily basis, I consume books, articles and videos on childhood and adult trauma, self-care, fibromyalgia, personality disorders, and how to keep it together when you’re broken and involved. It’s a healthy diet of I’m ready to change.

This year marks a decade since I received my diagnosis of fibromyalgia. However, it’s been a life marked by a host of diagnoses: depression, SAD, OCD, PCOS, IBS, Raynaud’s syndrome, overweight, underweight, high blood pressure, etc.; and I was a walking pharmacy–there always seemed to be some new and improved medication to fix whatever was broken inside me.

All the while, I was doing the arduous work of unpacking my childhood, being therapized and therapizing myself, while codependently trying to fix everyone else’s problems, whether they wanted me to or not. I was without clear boundaries in my personal life, struggling with a compulsion to solve sadness, my own and others.

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Places to go. D. Blake, 2017.

Letting Go of Promises

You see, I made two promises a long time ago–not to myself, but to my family. I can’t recall my exact age, but I remember the moment with clarity. An incredible argument took place between one of my older siblings and my parents. Without going into the details, that moment represented the totality of my family’s dynamics: unbounded dysfunction.

Nothing was ever a discussion, always a war zone…and the children were used as  landmines against each other and seen as acceptable collateral damage. I made a promise aloud to my mother on that day. I told her that I would 1) become a therapist and 2) fix my family.

I had forgotten about those promises for two decades. Unearthing them again in a therapy session, back in December 2014, shook my world. I had to face the fact that I had been unconsciously living a life based on these promises…

In 2006, I became an art therapist and mental health counselor. I spent years, prior to and thereafter, confronting my parents on their unacceptable behaviors towards my siblings and me. I tried to create dialogue. I tried to be a bridge. I tried…until I realized, in 2016, that I couldn’t do that anymore.

I can’t keep these promises that my younger self made. I can’t undo what was done to my siblings and me. I can’t fix my parents, nor do I wish to anymore.

Still, I was raised to cater to others. I was raised to take the blame for others. I was raised to disregard myself and defer to others. It’s no simple task living within and for myself.

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Self-portrait, D. Blake, 2017

Peace of Mind

So, I’ve been reading, watching, confronting and comforting myself. I take daily walks, I remind myself that change is a moment by moment act of meeting yourself wherever you are. I can’t walk back my childhood nor the harrowing moments of my adulthood. However, I can walk toward the type of future I would like to have and the future self I would like to be.

In the past, fixating on the emotions of others and even myself, and trying to control the outcome of everything was what brought me a sense of fragile peace–as long as I knew what someone was going to do or what was going to happen next, then everything was okay.

Now, it’s the simple things that give me peace of mind: flowers, stones, water, changes in the weather, the sound of laughter, singing, and dancing–flowing with what is rather than what I would like to be.

Change seems to happen with the smallest and simplest of actions…at least, this is what trying to live within myself has been showing me lately.  If you’re on a similar journey, then I hope it’s the same for you.

Until Next Time,
D

Reconnecting

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own-sunshine

Another grey summer day in Japan and life continues on. I wake up to a wall of clouds outside my window, the sounds of money being earned with each passing car, and the hazy whispers of my partner. It’s barely 6 AM.

I consider 24 hours earlier: I was standing in her apartment, face unwashed, clothes disheveled, emergency backpack straddling one shoulder, and wondering if this was our last moment together–North Korea had launched a missile towards the north of Japan.

A few months earlier, I arrived in Japan with a baseline plan of refocusing myself, laying the groundwork for accomplishing future goals, surviving earthquakes, and embracing the unknown.

This morning I am content with waking to a winter-like sky, watching my partner eat leftovers for breakfast while taking pleasurable sips of a Starbucks’ soy green tea (matcha) latte, smelling burning sandalwood incense, listening to passing cars and The Last Word with Lawrence O’Donnell on YouTube, and wondering and planning what else the future holds.

I am moving forward with writing, with loving, with being loved, with enjoying the simplest aspects of life while appreciating how complex life can be. For now, I’ll return to daily blogging, sharing my thoughts about life in Japan, how I’m managing my fibromyalgia, and whatever else that comes my way.

Until Next Time,

D.

 

 

On silence, healing fibromyalgia, dealing with narcissism, and learning a whole heck of a lot about myself

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First, thank you to my followers, both new and old, for continuing to bless me with your support.  I have not been around much, nor have I posted much of anything personal. Still, you continue to stick with me. Thank you!

 

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“If you have nothing [nice] to say…”

Over the past year and a half, my life has changed dramatically. Some of those changes were good, others were not so good. Still, I try my best to take changes as they come, learn from them what I can and keep taking steps towards achieving my goals. In my opinion, that’s the most effective approach to living my life.

Part of the process of accepting change is observing change. And I truly believe that observation is a silent process. It’s hard to observe and act at the same time–at least it is to me.

So, I’ve been in observation mode, mostly observing myself and my reactions and actions in dealing with myself in my environment, as well as just the environment itself. I’ve spent a lot of time in my head and subsequently in my body, i.e. I’ve been sorting through my mental blocks (negative self-talk/thinking) and how they impact my health and prevent me from quickly reaching my most important goals.

On the subject of health: I’m glad to state that my health has been truly awesome, and that my fibromyalgia symptoms have diminished significantly. I’ve had fewer flares, fibrofog moments and have been getting enough normal/restful sleep (between 7-9 hours). Also, I’ve been walking for about 1 hour almost daily and have recently started the BeachBody On-Demand 30-Day Free Trial that has a great deal of exercise programs for people of all levels.  If you have fibromyalgia and are interested in starting or improving an exercise program, I would say check it out because it allows for you to select programs by type: cardio, muscle building, less than 30 minutes, slim and tone, dance, low impact, and yoga. Personally, I am sticking with less than 30 minutes, low impact, dance and yoga.

I think my greatest challenge is that I consume news and, as a person of colour, it stresses me out…then again, who isn’t stressed when watching the news. Still, it’s important to stay informed, and I try to do so without being inundated.

So, what have I learned during my silence? A whole heck of a lot. Here is a list:

So, that’s it. It’s good to be writing again.

Until Next Time,

D.

 

 

 

 

 

 

 

 

FIBROMYALGIA & BEING A SOCIAL PARIAH: REINVENTING YOURSELF AFTER LOSING EVERYTHING (PART 2)

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typing on the computerWhat if you never had fibromyalgia? How would you have lived your life up until this moment? What dreams would you have already fulfilled? Better still, who would you have created yourself to be?

Here’s the deal, regardless of whatever your chronic illness is, there are likely many questions like the ones above that you have asked or are actively asking yourself right this very minute.  It’s human nature to wonder about the possibilities, especially when it comes to your own life (and if you aren’t wondering, please, ask yourself why).  Maintaining our curiosity, that element of wonder, about ourselves and our the world around is key to making any significant change in the way we live.  When we shut ourselves down and shut out the world, we are essentially denying ourselves access to the power that subjective and objective knowledge can bring to furthering our self-understanding.  And increasing self-understanding means increasing our ability to achieve self-mastery.

When we think of self-mastery, we may think of complete control of the self, i.e. control of thought which leads to control of actions, which means better ability to respond (not react) effectively to the world around us.  Simply put, self-mastery, self-understanding, and self-awareness go hand in hand, best summarized by this quote:

Watch your thoughts, they become words;
watch your words, they become actions;
watch your actions, they become habits;
watch your habits, they become character;
watch your character, for it becomes your destiny.

14533091400317-e1453308786450If you have fibromyalgia, then you know that one of the first thing you lose is control.  You lose control over your body and your mind.

The physical activities that you used to do with ease now prove difficult. The memory that you once prided yourself on now has sticky notes all over it marked fibro fog.  That’s just the way it is. There’s no shame in it. Having fibromyalgia means 1) losing control over the physical vehicle that transports who you are (body), and 2) losing control over the mental vehicle that relays your who you are to the world around you and to yourself (mind).  Of course, the severity of the loss depends of the severity of your fibromyalgia…and your engagement in self-care.

You’re Not Broken, Just Different

Anyone who knows me well knows that I do not believe in regret. Truly, I don’t. I believe in lessons learned.  I think regretting your life, in any shape or form, does not help you to move forward from wherever you are, especially when you have a chronic illness. The fact is the past is in the past. Yesterday is already the past. And today will be the past quite soon. So, here are the only questions that you need to ask yourself today:

What step(s) will I take to move my life forward today?

What step(s) have I taken to move my life forward today?

They are really simple questions with big implications. They imply choice.

You did not have a choice in having fibromyalgia. You do have a choice in whether or not you will allow it to control your life. Although you may feel broken, unwanted, used up, without purpose, or simply helpless, you are not.

You are not broken. You are different. 

The person you knew yourself to be is in the past, along with yesterday and all the days before that.  The high points and the low points of that person is gone. Keep her or him in your memory with fondness, but do not dwell.  Like how you may think fondly upon your teenage self or child self, think so upon who you were. But get excited about who you are and who you are crafting yourself to be.

Remember how when you were a teenager or a child, you couldn’t wait to see what type of adult you would be? Perhaps you became that adult, perhaps not. Either way, it’s time now to tap into the curiosity, to apply today that wonder that you had about the unknown you. It’s time to tell yourself that there is nothing to fear in being someone you don’t know or cannot yet imagine.

This is the first step in reinventing yourself: getting to know the new you. 

How do you do this? Ask yourself the first question I proposed above (What step(s) will I take to move my life forward today?), then take the quote above as inspiration: watch your thoughts. Listen for an answer. What does your new self want to do? Be curious about that self. Work to understand that self.  Be kind to that self.

Look out for Part 3: The Naysayers & Other Emotional Vampires

Read Part 1:  Reinventing Yourself After Losing Everything

Fibromyalgia & Being a Social Pariah: Reinventing Yourself After Losing Everything (Part 1)

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Image linked from WordPress.com gallery.

There is nothing more sobering than experiencing significant loss, especially when that loss hits very close to home.  At those times, knowing what to do can be challenging, and finding support may prove difficult.  These are the moments that can have the greatest impact on how you define yourself and your relationships with those around you and the world as a whole.  More importantly, significant loss forces you to realize that you may be, after all, alone in this world.

There are some who will disagree with the following statement: when you experience significant loss, the likelihood of becoming a social pariah increases dramatically.  You don’t have to look very far to see the truth of it. Just look at the rise and fall of celebrities.

The fact is that when you have everything or are seemingly rising to the top of the social strata, you will find yourself surrounded by more people, for good or ill. Conversely, when you lose everything or are seemingly hitting rock bottom, there will be fewer people remaining by your side. It’s a harsh reality, but a truth that each person going through or who has been through significant loss has to face: you might just be very much on your own.

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I decided to write about this because of my observations and personal experiences since becoming ill with fibromyalgia.  As I have written many times, having fibromyalgia means experiencing significant loss, especially of self. However, you gain a great deal alongside that loss. You find out, for example, who your true supports are and what really matters to you in life.

Fibromyalgia forces a mental housecleaning (if you allow it) and life cleaning. It forces you to question the reality that you have chosen to live and then asks you to prove the worth of that reality, i.e. is your reality one that is worth enough for you to fight for it?

While you attempt to answer that question, those around you will have to answer this one: is this person worthwhile to keep in my life? Of course, the question may not be so direct in nature, but that is what it comes down to: your worth = potential benefit in their lives. If you worth is diminished, so is the benefit that they experience.

Whether or not anyone wants to agree, the fact is that, for some people, relationships are based on benefits. There are relatively few relationships that I have observed that function solely on selflessness.  Some people care as long as there is something to benefit from giving that care.  However they define benefit doesn’t matter.  The key thing is whether or not they are still capable of receiving that benefit if they maintain a relationship with you.

I have found that having fibromyalgia or any chronic illness can make you become completely self-focused because you are having to, maybe for the first time, expend a lot of mental energy on understanding how to improve your health and how to survive on a daily basis. During that period, your ability to care for your relationships, work, and other commitments declines.  However long you spend during that period of uncertainty has a direct impact on your relationships, work and other commitments.  Given the recurrent and potentially severe nature of fibromyalgia symptoms, you may will find yourself repeatedly going through this experience.

After some time, you may find yourself friendless, jobless and uncertain of what to do next. Perhaps you are already at that point.

Keep faith and do not despair.

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There is a flip side to losing everything, to hitting rock bottom, and to being utterly uncertain. Beyond choosing to remain where you are, there is the other option: gaining everything, reaching for the sky, and becoming driven. 

All it takes is deciding to see yourself in a new person.

Too often we get bogged down in the identity that we have created or accepted for ourselves.  To truly move forward after losing everything means accepting that you are no longer who you used to be.  It means shedding your old identity.

It doesn’t matter what age you are when fibromyalgia entered your life, you can still reinvent yourself. In fact, I think the older you are, the more important it is to choose to reinvent yourself. No matter how difficult it may seem.

Reinventing yourself is what I call a process-decision. It’s an ongoing experience of deciding and allowing for various internal and external processes to occur to manifest change.  It begins with simply stating to yourself that you are have already changed and are constantly changing.

Of course, there are many practical steps that you can take to begin that process now.

Look out for Part 2

Until then,

D.

Check out my latest Vlog post on dealing with depression and anxiety. 

 

 

 

May 12 is Fibromyalgia Awareness Day, But I’m 10 Years In.

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This Thursday, May 12th, will be a quiet day for me. It’s Fibromyalgia Awareness Day.  I’ll do what I usually do: strive to thrive, make it through another day, try to find ways to make a living, find balance, take better care of myself, wonder what the rest of the world is doing beyond my computer screen, etc.  Still, this year’s theme is “Your Voice Matters”, so I am writing today because I will likely not remember to do so on Thursday, whether by natural absent-mindedness or fibrofog.

However, there isn’t really much that I have to write about fibromyalgia today beyond the fact that it annoys me that WordPress’ word processor does not recognize the words fibromyalgia and fibrofog. Then again, it doesn’t even recognize the name WordPress, so perhaps I ought not to complain.

Well, I am ten years (by my symptoms) or eight years (by diagnosis) into this illness. Because of fibromyalgia, each day presents unique opportunities for me to learn more about myself, particularly my level of tolerance for the world around me and my position in it.  Even though I have had to make unexpected changes in my life and goals for my life, I am a far better human being because of it.

I cannot stress it enough: my illness has made me more human.

When you are usually on top, it is easy to spend your time looking down on others without ever realizing that you are doing it.  When you always have, you don’t understand the perspectives of those who do not.  When you only know yourself as competent, you cannot fathom the handicaps of others. When overachieving is all you ever do, you can never understand the satisfaction of mediocrity.

Fibromyalgia has taught me about my blind arrogance. It has shoved me off a very high platform and asked me to find my way back up.

I have accepted that challenge.

The challenge is neither to become blind once more nor to fight against fibromyalgia.  The challenge is to love, learn and live, embracing who you are, who others are, and especially who you decide to be.

On may 12th, if you have fibromyalgia or know someone who does, take a moment in your day to pause and appreciate what you have, who you are, and what you can do to make a difference in the lives around you.

Until Next Time,

D.

 

Happy Monday!…Are You Happy?

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“Happiness is letting go of what

you think your life is supposed to

look like and celebrating it for

everything that it is.” – Mandy Hale

– Mandy Hale

Being happy, walking that path, has been my primary goal in life.  For a long time, I thought that being happy meant being a part of something or living wholly for someone.  In essence, I thought that being happy meant being in a relationship.  What I did not realize was that, although happiness can be found interpersonally, it must first be found intrapersonally.  I needed to learn to be happy with me.  Moreover, consistent self-happiness can take incredible daily effort, especially if your environment is far from conducive to promoting a healthy mental state.

Still, I believe that experiencing happiness can be as simple as taking your next breath or becoming aware of your senses. Self-happiness does not have to start with an internal examination of self, where you check off all the ways that you are sound psychologically, intellectually, and spiritually.  No, it can begin with an external examination, i.e., physically.  That you physically exist, regardless of form, is something about which you can be happy.  Paying attention to and celebrating how your body

Paying attention to and celebrating how your body does work, instead of how it does not, is important to feeling happy, especially if, like me, you have a chronic illness.  For example, I find joy in wriggling my toes when I’m wearing socks.  The sensation of the cloth restricting my toes makes me aware that I have toes, and that is something for which I truly grateful.  When I experience gratitude, I also experience happiness.

Starting off this Monday, why not take a moment, in whatever way, to show yourself gratitude that you are, that you exist.  And by just existing, despite the opinions of others and your physical surroundings, you have the potential to create an even greater happiness for yourself.

I know that I will be doing that.  I hope you will, too. 🙂

Until Later,

D.

Writing, Fibromyalgia & Building Confidence Byte by Byte

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typing on the computer“Just what could you be doing for so long on the computer?”

It was an unexpected question, but it was not surprising, especially coming from my mother. It is true that I spend many hours strapped to my laptop, either clicking the mouse or clacking away at the keyboard every day.

So, just what could I be doing?

The simplest answer would be “Communicating.”

I am communicating with the world around me and with myself.  I am allowing my voice to travel to places where my legs, at the moment, cannot take me.  I am building confidence in my presence in society and my voice.  I am reshaping my identity instead of fighting my reality.

My reality is that of being a person with a chronic illness who, despite her desire for it to be otherwise, cannot rely on her body to function at 100%. For whatever reason, something inside me has become knotted and twisted, broken and weary, and likely will never heal.  That is just the way it is.

Also, it does not help that I currently live in a small town with limited public transportation, and I dislike driving.  Still, living in a small town has its benefits, especially for writing, which is what I have been doing since I returned home.  Moreover, it is forcing me to reach out more and be a part of communities, even if they may only be virtual at the moment.

Although having a chronic illness can be an isolating experience, it does not preclude me from understanding and achieving my goals, one of which is to be a published author and poet.  My illness is forcing me to deal with my worst enemy: myself.

 

 

For most of my life, I have been called an overachiever. I can be obsessive and perfectionistic, but I did not always realize that. I prefer solitude in most aspects of life but am loyal to my associations and make a good team player. My creativity is stifled when I am stressed, and  I am prone to high-level procrastination.  Without structure and goals, I become self-hindering.  In other words, having fibromyalgia has meant dealing with the perceived weaker aspects of my personality.

Fibromyalgia is not just confronting the reality of pain, fatigue, and fibrofog.  It puts center-stage your very self.  And if you happen to have Type A more than B personality, then having fibromyalgia might cause you to feel a bit like Alice falling down the rabbit hole and landing in an unrelenting and even more nightmarish version of Wonderland.

Still, living in surrealism is not so terrible, if you keep hold of yourself and continue to build self-efficacy, which brings me back to spending a seemingly inordinate amount of time in front of my laptop.

Writing, communicating with others, researching and even watching my favourite cartoon or comedy–all of these things are available to me online.  However, the internet has also become my temporary legs to take me to places known and unknown.  Through it, I am able to keep my eyes and my world open.  I can explore different aspects of self and remain (almost) free from judgement.

Ultimately, it reminds me that there is a world beyond my illness, whether that is a fictional world created through storytelling or the real world filtered through a screen. This mishmash of zeros and ones and  bundles of connected wires is allowing me to rebuild myself and to shape my future.

And there is nothing wrong with that. 😉

Until Next Time,

D.

Fibromyalgia: What They Don’t Tell You.

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Even before you have a name for your illness, you know how lousy it makes you feel.  Naming it fibromyalgia does not change much of anything.  You will still be bombarded with more medications to try, more questions to answer, and have days when you imagine that being run over by a bus would feel better.  You get accustomed to the pain, the tiredness, the nausea, the insomnia, the forgetfulness, the isolation, the medications, the questions, and the never-ending worry.  It becomes the lens through which you greet life and life greets you.  There is nothing rose-tinted about this.

During the period when most aspects of life seem to be one giant flurry, your mind may lose track of one certain factor: you have been forever changed.  However you have understood yourself is now, at best, moot.  Of course, this does not have to cause despair. It simply means making adjustments, challenging yourself to seeing you in a new light.

This is what the doctors will likely never tell you.  This is what loved ones may not understand.  This is what you could struggle to accept. You will never be the you you once knew.

Fibromyalgia is an illness that takes.  Yet still, even as it takes, it gives. What the doctors may never tell you is that it is your job to discover what fibromyalgia gives. It is your job to learn how fibromyaglia helps you to grow as an individual, how it gives you the opportunity to understand the world around in new ways.

I have met women who believe that fibromyalgia is a sort of death sentence.  I have even met women who see it as their ticket to receiving permanent care from others. Personally, I cannot fathom living like that.  Fibromyalgia is but one aspect of who I am.  It does not define me.  Do not let it define you.

Until Next Time,

D.