Fibromyalgia | 15 Years Later…

Orchid and Droplets

Recently, as in today, I have been listening to the music of Wardruna, a Norwegian band focused on sharing Old Norse traditions, reclaiming it from those who have misappropriated it. Let’s make it quite clear, I am rather ignorant of many aspects of Old Norse traditions.

The closest I came to learning anything about Old Norse tradition was taking a course on Germanic languages (thank you, Professor Robinson) and studying the rune poems to learn about the runic alphabets. That’s it.

Still, I found myself entranced by the voice of Einar Selvik singing the poem “Völuspá,” which tells the Norse creation myth. Certainly, I understood nothing of the words, but the passion of his voice brought tears to my eyes. Such is the power of music.

Völuspá tells not only of the birth of world, but also its death and rebirth.

Fifteen years ago, I realized that something was terribly wrong. I felt tired, sick, and in pain. For two years, I searched for an answer. At various points, I was convinced that I was just psychosomatic, it was all in my head–it didn’t help that my doctor was dismissive of my condition and did little to help. Ultimately, I learned the name of my condition: fibromyalgia.

I wrote quite a bit about my journey with fibromyalgia between 2011 and 2015. For the past six years, I have remained relatively quiet on the topic and this blog for a variety of reasons. However, I would like to share with you a little about my journey.

Contrast Petals

If I think back to 2008, when I first received my diagnosis, my mind immediately remembers the laundry list of medications I was asked to take just to function. I spent more time at hospitals and clinics than at any other time in my life. I joined a support group that caused me to realize that there was some other way that I wanted to live…

I wanted to find a path to living a life that held meaning to me and not one defined by my illness. I believe I found it.

I became vegan (now pescatarian), started meditating, doing yoga, and taking walks regularly, and began scaling back on the medications I was being asked to take. Ultimately, I went from taking approximately eleven medications to taking three. And for the past four years, I take only one…and it’s not for fibromyalgia. Instead, I go regularly for acupuncture or massage to help with pain management.

Choosing to Do Things Differently

Living with fibromyalgia means living with uncertainty: uncertainty of what one can do, how one will feel, etc. It is understanding that one’s sense of self-efficacy will be shaken if not shattered. There is nothing quite as humbling as waking up to realize that one can neither move because of pain nor remember a particular word (or two) due to brain fog. One’s body can become an enemy as it seems to work against one’s mind. As a result, one’s self-concept may begin to unravel–it certainly did for me.

I’ve spent the past decade redefining myself, constructing a new self with the fragments of self that survived pre-fibromyalgia, filling in the missing parts with who I have become. Certainly, everyone changes over time. However, developing a chronic illness in adulthood, in particular, means having to accept a change in a well-established sense of self-concept as well as deal with the potential fallout of being ill. A long-term battle between who one is and who one used to be can ensue.

Blossoms…Warmth

So, what can you do?

Choose to experience life differently.

For a long time, I was unhappy with my very nomadic life of living for only few years in any one place. However, now, I believe that my nomadism has been beneficial to my understanding my life with fibromyalgia. With each new place I have lived, I have had a chance to experience the world in a new way. Eventually, I came to the thought: why not remain open to experiencing myself differently, not just the world?

The challenge was no longer to hold on to an old concept of self, an old identity–it was to see and embrace a new aspect of self. Who am I now? How have I changed? What have I learned? Where do I want to go now on my journey?

Choose to ask yourself questions that open yourself to a newer you.

I realized that there was nothing to fear in being different from who I was. In the uncertainty of my condition, I found certainty. Having fibromyalgia has taught me (repeatedly) to be mindful of my physical and mental limits. It has confirmed for me certain goals and allowed me to discard others. I have become a kinder person to myself. Also, I am very curious about how my illness will continue influencing my perception of the world around me.

Remember: be who you are, embrace who you will become. In the interim, work on creating a life full of meaning for you. Let it be a life not defined by, but informed by your challenges.

Look forward to your rebirth.

Until Next Time,

Diedre

Today On My Kindle:

Music & Storytelling: Troye Sivan

 

First, I came across Troye Sivan‘s music by accident while on tumblr.  His song “Fools” happened to be playing on the page that I was viewing.  That led me to YouTube, where I discovered that “Fools” was the second part of a three-part story told through music videos (in order: “Wild,” “Fools” and “Talk Me Down”). If I understand correctly, these songs/stories are a part of a larger story that is called “Blue Neighbourhood” (the name of his album).

Beyond the fact that the songs are quite enjoyable, very mainstream pop with a bit of R&B (at least, this is how I describe to myself), the songs tell a poignant story of two gay teens and their tragic love affair.  Really the videos left me at a loss for words–not only is the music awesome, but this a very direct display of gay teens and the struggles they deal with.  Sivan, himself, is gay and actually a very famous YouTuber.  Check out the videos, and then go buy the album! 🙂

 

 

 

Far From Mainstream: New Music Loves!

istock_000019172228xsmallI’ve been listening to a lot of new music over the past year. From dubstep to hardrock.  Luckily, most of what I’ve heard, I’ve liked.  So, on that note, I thought I would share with you to songs I really like.

First is the song “Surprise Reprise” by the band Boom City.  Second is  “Feel Me Why Don’t You” by actor/musician Asahi Uchida.

Two completely different genres of music, but both really amazing.  Hope you enjoy them. 🙂

Travel | Listen to Hang Drum Street Music in Vatican City

Although, due to policy changes, there are fewer musicians these days, Rome continues to have a very vibrant street music culture.  Every now and again, I come across some a musician playing an uncommon instrument, e.g. didgeridoo or (in this case) the hang drum.

Alessio playing the Hang drum on the streets of Vatican City. (Image by D. Blake)

Alessio playing the Hang drum on the streets of Vatican City. (Image by D. Blake)

Take a moment to listen to this wonderful instrument being played by Alessio, a young musician I came across while hanging out in Vatican City.

 

Quick Note | I’m Back!

“No Excuses. Right?” (Image: http://krnb.com)

To My Readers & Followers:

My apologies for not having posted over the past 12 days.  Let’s chalk it up to being overwhelmed and morphing into a proverbial hot mess. 😉  It happens, and probably even more so when you have FMS.  Who knows?

Either way, I am back and getting myself and blog sorted out for the month of October.  Of course, NaNoWriMo is on its way next month, in which I will participate, and I hope you will too.

Also, I did keep up with my ATR Challenge and Prayer/Meditation Challenge, both of which are still going strong!

Look out later on for a regular post from me.  In the meanwhile, enjoy this video (with an adorable little girl  doing some incredible dancing) I found lately by Japanese actor and musician Asahi Uchida. 🙂


Until Next Time,

D.

Season of self-love…

It is cold today.  The kind of cold that reminds me of walks in northern Massachusetts on a windy autumn day.  It is that kind of cold.   My mind is filled with images of warmth:  blankets, fires, good books, family and friends.

I also have a cold today. It is not the worst one that I have had in recent memory.  It is enough, however, to cause my mind to feel sluggish, my fingers to ache, and my creativity to diminish.  Sometimes life is like that, right?

Sometimes life forces you to stay still.  Sometimes it reminds you that no matter what you think you ‘should’/’must’/’need to’ do, you can only do as much as you can do.  It reminds you to make decisions that take into account where, who, and what you are.  I am glad for this.

It is in these moments of pause that I remember that… You know what?  Physical and psychological hardship are experiences a part of the ebb and flow of life, and they are possible to overcome.  And what’s wonderful is that they can be easier to overcome when you acknowledge their presence in your life…

More importantly, they can be easier to overcome by allowing others to understand that this is your present experience, and furthermore…by allowing others to help you.  Well, I am off to play piano, write, study, work, and be with friends.  In other words, I am off to experience the rest of my life not just my illness.

Happy Weekend All!

Until next time!

Best,

D.

Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love?
How about love?
How about love? Measure in love

Seasons of love. Seasons of love

Packing the playlist…

“Fragments of Freedom,” photography by Dolores Juhas (http://www.dolores-juhas.tk)

As I prepare for NaNoWriMo and am engaging in studying for exams, listening to music is becoming a more prominent feature of my daily experience.  Whether it is listening to Vivaldi’s Four Seasons or Gotye‘s Heart’s A Mess, I find that music helps me to focus my mind, and streamline my thoughts and emotions.

And so….I’ve been trying to put together  a playlist specifically for NaNoWriMo.

Selecting music for a playlist is a bit like packing a suitcase for a long trip.  You need to make sure that every item there serves a purpose.  I am still not certain of my list as it stands.  Thus,  I am looking for suggests for instrumental as well as vocal music.  Ethereal and dark sounds are welcomed.

I have about fifty selections at the moment (even though there are only forty listed below).  I would like to make it an even hundred (100).  So, make some suggestions!  At the moment, my playlist is as follows:

  1. 3 LibrasA Perfect Circle
  2. Rolling in the Deep – Adele
  3. Con Te PartiroAndrea Bocelli
  4. Moonlight Sonata – L.V. Beethoven
  5. Invasion – Bleach Soundtrack
  6. Morning Remembrance – Bleach Soundtrack
  7. Short Skirt, Long Jacket – Cake
  8. Hello AloneCharlie Winston
  9. In Your Hands – Charlie Winston
  10. Viva la Vida – Coldplay

  1. Lovesong – The Cure
  2. Makedo – Darko Rundek
  3. Titanium – David Guetta
  4. Didn’t Cha Know – Erykah Badu
  5. Here Comes The Rain – Eurythmics
  6. Cosmic Love – Florence and The Machine
  7. Trista Pena – Gipsy Kings
  8. Un Amor – Gipsy Kings
  9. Eyes Wide Open – Gotye
  10. Heart’s A Mess – Gotye

  1. Somebody I Used to Know – Gotye
  2. What Do You Want? – Gotye
  3. Now We Are Free – Lisa Gerrard
  4. Anna Molly – Incubus
  5. A Long Walk – Jill Scott
  6. Really Believe – Theo Eastwind
  7. Still Doll – Kanon Wakeshima
  8. Michiyuki – Kaori Hikita
  9. Got the Life – Korn
  10. Bram Stoker’s Dracula Soundtrack

  1. The Piano Soundtrack – Michael Nyman
  2. Little Earthquakes Album – Tori Amos
  3. Desert Rose – Sting
  4. What You KnowTwo Door Cinema Club
  5. MapsYeah Yeah Yeahs
  6. Heads Will Roll – Yeah Yeah Yeahs
  7. Not in Love – Crystal Castle feat. Robert Smith
  8. November RainGuns ‘N’ Roses
  9. Live at the Acropolis Album – Yanni
  10. Lord of the Rings Trilogy Soundtrack

Vrijeme po mom satu, (Photo of the year: Cahayabox – http://www.cahayabox.net), photography by Dolores Juhas ( http://www.dolores-juhas.tk )

Photographs are by Croatian photographer, Dolores Juhas, whose work has been featured in such magazines as Italian Vogue.  You can visit her website at http://www.dolores-juhas.tk or email her: d_juhas@yahoo.co.uk.  She has her own blog at http://themax.bloger.hr

Hearing my voice again…

Suppleness Of The Moment, photography by Dolores Juhas (http://dolores-juhas.tk)

It is cold today.  The kind of cold that conjures to the mind apple orchards, pumpkin pie, and children running around in costumes.  It’s that kind of weather today, and I am sitting outside.  Perhaps I shouldn’t be.  Perhaps I should go inside.  I won’t though.  At least, not until I have finished enjoying the feeling of being outside.

Living in the moment is an art form.  Being able to say “Yes, I will acknowledge you” to the goings-on around and within you is not easy.  It takes time to soothe the fear of the unknown known, or to learn how to live comfortably with it.  I believe it is a lifelong self-dialogue.  Today, I was able to give an affirmative to myself when I felt the desire to sing and play guitar.  I worked through the fear of having others overhear me, or being disruptive, or sounding like crap, or whatever.  I am glad for it.

Singing today brought about the realization that I have long missed this mode of expression.   To find the right sound, the right words that reach within to evoke all that is so very difficult to state in regular speech, or in poetry, or in stories…

The sound of my voice has changed over the years.  It is more  melancholic, darker…still, I hear that clarity of old, which is something about which I can smile.

Now, if I could only sing like this… 😉 piano…piano

Until Next Time!

Best,

D.

 

Self-portrait by Dolores Juhas. Copyright (c) Dolores Juhas. All Rights Reserved.

Photographs are by Croatian photographer, Dolores Juhas, whose work has been featured in such magazines as Italian Vogue.  You can visit her website at http://www.dolores-juhas.tk or email her: d_juhas@yahoo.co.uk.  She has her own blog at http://themax.bloger.hr

Something that makes me smile…

So… I’ve been learning Italian. For the most part, I think it is going fairly well… Well, at the very least, I will say it’s been a process.

One of the most wonderful experiences in learning this beautiful (but quite challenging for me) language happened last semester during my intensive Italian course.  We had the fortune of being introduced to (and listening a couple of times per my request) to the song, “La Gatta” by Gino Paoli, … and it made me smile 🙂

It still does… Thanks, Professor B.!

I hope it will brighten your Saturday too!

————

Excerpt from “La Gatta” Lyrics

C’era una volta una gatta

che aveva una macchia nera sul muso

e una vecchia soffitta vicino al mare

con una finestra a un passo dal cielo blu.

Se la chitarra suonavo

la gatta faceva le fusa ed una

stellina scendeva vicina, vicina

poi mi sorrideva e se ne tornava su.

Ora non abito più là,

tutto è cambiato, non abito più là,

Ho una casa bellissima,

bellissima come vuoi tu…”  – Gino Paoli

(Lyrics found at http://www.lyricsmania.com/la_gatta_lyrics_gino_paoli.html)


Until next time!

Best,

D.