Writing, Fibromyalgia & Building Confidence Byte by Byte

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.

Overcoming Fibromyalgia

 

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Found via Google image search.

Over the years, I have found that physical illness involves three aspects of self: body, mind, and emotion.  It is not  just about the body healing itself.  It is also about the health of the ongoing dialogue that occurs between the body  and the mind, and the resulting emotions.  Of course, the body heals in its own time, but our thoughts can also assist in how healthy we perceive ourselves to be and ultimately are.  This is what might considered as “thinking our way to good health.” Visualizing a healthier version of ourselves can do wonders to begin or continue the process of actual healing.  However, the reverse is also quite true.  Beyond whatever factual illness we may have, our minds can contribute a hefty dose of additional symptoms, with which we must also contend.  Some might refer to such occurrences as psychosomatic symptoms.  For example, depression is not just something that impacts the mind.  It impacts the body’s ability to function effectively as well.  Depression is associated with physical symptoms, such as chest pains, fatigue, muscle and joint aches, digestive issues, headaches, weight loss and gain, and even back pain.  Add to that sleep disturbances and sexual problems, it might seem as though I have been describing fibromyalgia because the symptoms are quite similar.  These physical symptoms of depression are temporary, however, while fibromyalgia symptoms are chronic.

For a long time, the general consensus among doctors was that fibromyalgia was all in the mind, that it was merely psychosomatic, that it was not real.  Although there are still some who maintain disbelief, research has shown that fibromyalgia, the second most common rheumatoid disorder, is “now considered to be a lifelong central nervous system disorder, which is responsible for amplified pain that shoots through the body of those who suffer from it.”  Fibromyalgia is not something that you can just think away. No amount of visualization will permanently remove the impact that fibromyalgia can have on its sufferers.  That is the reality.

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The Broken Column, 1944 by Frida Kahlo. Image from noijam.com, found via GIS.

As the illness progresses, daily life can feel quite surreal. Perhaps you felt great yesterday, but today you feel as though you are broken in many places.  It may feel that there is no way to hold yourself together.  It is not just the pain that hurts.  It is ever-increasing isolation, diminishing self-sufficiency, and the loss of words that comes with the fog that overtakes the mind.  It is also the ongoing disappointment as you begin saying “no” to work, loved ones, and even yourself.  Having fibromyalgia means being broken, being scattered into tiny fragments of self that you try each to recover and bind together

S0, how does one overcome this?

Until there is a definitive cure found by medical experiences, there is no way to overcome fibromyalgia.  At least, not in the sense of the illness ending.

Instead, see overcoming fibromyalgia as a daily process.  For example, on days when you wake up to a flare, challenge yourself to do more than you think you can–perhaps that might be sitting up in bed, or talking to a friend on the phone.  On days when you feel great, challenge yourself to do less than you think you should–perhaps that might be leaving work on time or a little early (if you are still working), instead of staying late because you are trying to make up for lost time.  This is basically opposite to emotion action, a DBT skill that asks practitioners to 1) acknowledge and allow for their emotional state, and 2) act in the opposite manner than their emotional urge would prefer. For example, if you are angry and your emotional urge is to hit someone, opposite to emotion action would have you choose an action that is opposite to your emotional urge, so perhaps hug someone.


When we allow ourselves (mind, body, emotions) to give into illness, we allow for that illness to have enormous control over how we experience life.  Yes, you may feel ill today, but instead of focusing on feeling physically ill, try focusing your mind on what can you can do (in spite of your illness).  Contrarily, you may feel physically great today, but instead of focusing on feeling great, try focusing your mind on what you can do to ensure that you feel better tomorrow (this may mean holding yourself back a bit).

 

If we acknowledge our limitations and challenge our thinking, then this may be helpful in avoiding compounding our physical illness with our emotions.  Depression can be resulting factor of chronic illness.  For those of us living with fibromyalgia, learning how to cope with feelings of depression is vital to our survival.  Thus, finding ways to celebrate ourselves and the steps we take to feel better is key. Every day try doing to following (in no particular order):

  • Create an action plan (a.k.a. To Do List) based on your current physical state
  • Journal about your physical symptoms and your emotional state
  • Exercise in whatever way possible, whether that is doing a light stretch or going for a walk.
  • Eat well. Avoid foods that exacerbate symptoms.
  • Talk to someone, whether in-person, on the phone, or online.
  • Smile for no reason. Trust me, it helps.
  • Be mindful in each moment. Be aware of your thoughts and how your thoughts are influencing your emotions and actions.
  • Pay attention to the calendar. Know the month and day you are in.  It is very easy to lose track of time.
  • Set long-term achievable goals (but challenge yourself).  What is it that you believe you can no longer do/achieve because of fibromyaglia? Try to find ways to modify what you wanted to do so that it accommodates your illness.
  • Feed your spirit.  This does not mean join a religion. Do something to help others.

There is no guarantee that the above will work for you.  These are just the steps that I have found helpful along the way.  Yes, every day, I find that fibromyalgia diminishes some aspect of me.  Sometimes it is very difficult to see the positives in each moment. Still, if I do not try to make my reality better for me, then who will?

I hope these words offer comfort to anyone who is having a hard time today.

Until Next Time,

D.

 

 

Fibromyalgia & Maintaining Hope

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Maintaining hope is a matter of discipline.  Hope isn’t not magically bestowed upon you. It’s not something packaged in the form of the latest prescription your doctor wants you to try.  You can’t purchase it from your neighbourhood 24-7 pharmacy. You learned it from someone somewhere at some point in your life, oftentimes in childhood.  Hope is a skill.  As such, the old adage of  use it or lose it applies to it as well.  This is especially true if you have a chronic illness.

Having a chronic illness isn’t the end of the world, although it may feel like it.  To be blunt, it sucks to have a chronic illness.  However, in the difficulties that having any illness can bring, there is wisdom and compassion to be gained.  Still, being constantly ill or never knowing when next illness will strike can create feelings of hopelessness and helplessness, which can lead to or may signal depression.    In fact, despite being a mental health counselor and expressive therapist, I have felt hopeless and helpless at various points in my illness–a good portion of it being related to having to redefine my self-concept, rather than the illness itself.

I found that the more I refused to let go of what/who I was, the more frustrated and sad I became.  However, each time I conceded to a limitation and took steps to adjust to it, I felt freer and more hopeful.  As I have written many times, chronic illnesses take away many things from you, but they also give something to you.  Whether or not you choose to understand that there is a gift (or gifts) is up to you.

Chronic illnesses, as much as they can create havoc in your life, they also can make things really simple, especially decisions. Still, you have to see through the chaos of your symptoms (physical and mental) to the clarity of your will.  To help myself see beyond the difficulty of the any moment related to my fibromyalgia, I ask myself the following question:

Will I allow my illness to devour me?  

The answer is always no. I refuse to be held hostage to my illness.  Like all other things about myself that I cannot change, I have accepted that my illness is a part of me.  I don’t need to focus on changing it.  I need to focus on living with it, learning from it, and moving beyond it.  This is how I maintain a hopeful attitude about my life and my illness.

I no longer see my illness as something I need to or can fix.  If the experts come up with something definitive in the future that will alleviate me of my illness, then great.  Otherwise, I choose to focus on making peace with having fibromyalgia, rather than fighting it.  In those moments when I am feeling my worst, I choose to focus on how my illness is helping me, rather than how it may be hindering me. 

My hope is grounded in the belief that I can live successfully with fibromyalgia, regardless of what it takes away…because I believe it always gives me something in return.  Because of this belief, I also know that I can and will always find a way to help myself, even if the way is not immediately shown to me. I suppose what I’ve learned is that

Hope is about riding the waves of uncertainty…with a keen sense of direction. 😉

  D.

Check out this post by a fellow  Wordpress blogger: When Chronic Illness Causes Depression

5 Positive Negatives of Fibromyalgia…

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Yeah, I said it. There are some good things about having fibromyalgia…It’s just took me a while to figure out what they were.

  1. I can now predict bad weather.  That’s right. You no longer need to watch the news or visit weather.com, just call me (maybe I’ll answer) and I’ll tell you, because from the moment there is a shift in the weather my body knows it.
  2. I can relate to older people. You’ve got a pain in your back, side, arm, elbow, neck? Feeling weak and creaky? Can’t remember where you left…wait, what was it again? Wonder why everybody is moving so fast?…Well, I do, too. Let’s commiserate and wonder how we got here.
  3. I’ve hit a personal low. So, I can only keep going up from here on out.  There’s nothing quite like losing utter sense of self, having your livelihood stripped from you, and becoming reclusive. It put so many things in perspective, which leads me to…
  4. I’ve learnt to keep things real simple. Drama? No, thank you. I’m interested in the direct line from point A to B. Fix the problem or remove it.
  5. I’m mentally stronger.  Oh, I used to get bogged down in so many emotional situations that I really had no business being in…just because I thought these four little words: I can handle this.  I applied those four words to all sorts of situations: work, relationships, life changes, etc. What I’ve come to learn is that even if I am capable of “handling” a situation, it doesn’t mean I should.  In the end, the stress of unwarranted drama (i.e. drama for the sake of drama) only leaves me feeling emotionally and physically ill.  And no, I do not think you are mentally strong if you subject yourself to situations that will only increase your stress levels. Mental strength, to me, means being able to make the tough decision of not getting involved when there isn’t a need.

What about you?

What is it about having fibromyalgia that you have come to appreciate?

 

CW | Saying “Whatever” to Fibromyalgia’s Grey Days

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“It must suck to have fibromyalgia,” says [Insert Name Here].

The sky is grey today.  I knew that before I properly woke up.  I could feel the grey grinding my bones, shaping my body into something that it wasn’t just a few hours before. Like the darkening clouds, the grey attempts to conceal my memories, blot out what I meant to today.

The grey binds itself to my feet, my arms, my head, my stomach.  I smell the grey, taste it, and touch it as I rub my limbs, my temples, my chest.  I hear it blend in with persistent beats of the hot water that pours down my back.  I see it etching whatever into the lines on my face, or perhaps that could just be an issue of age.

I cannot help but laugh–It’s a never ending competition between us, grey and me.  Grey tries its best, and so I must try even harder.

I’ll wear black today.

 

 

 

 

 

 

Fibromyalgia | A Hungry Illness

This Cold Hard Floor: II, watercolour and ink painting by Diedré M. Blake, 2006

This Cold Hard Floor: II, watercolour and ink painting by Diedré M. Blake, 2006

It’s sunny with a gentle breeze today in Rome, and the streets are filled with all sorts of people: tourists, vendors, eco-friendly bicycle transporters, fake gladiators, and me, wearing my too-bright 1970’s dress and carrying a somewhat worn red Chinese umbrella.  As I walk through the city, my mind registers that I am alone…no, not just alone.

I look around at the people who are busy making something of their lives or trying to.  I see their desperation, from the vendors hoping to sell their wares to the couples hoping to purchase romance.  Everyone is hungry for something.  What about me?

When I first came to Rome, I felt out of sorts, as though I had no self-concept, no sense of self.  My self was wrapped up in my illness, and bogged down by one word that represented the annihilation of my reality: fibromyalgia.  Fibromyalgia ate whoever I was, and she was no longer me.

Still, clinging to a part of self that no longer exist makes no sense.  So, I let go and became no one.  As no one I had nothing, no place, no connection, just some vague notions of a past and some hope for a future.  The only thing that existed for me was my illness. Fibromyalgia was my reality, although it was not my self.

However, fibromyalgia is a hungry illness.  It takes and takes and takes and takes…and it has taken many things from me.  It has gorged upon my confidence. It has satiated its thirst with my tears. So much so, that there is no a void, waiting to be filled.

Gelato, bottles of iced water, freshly squeezed juice are all sold along Via Fori Imperiali.  Fresh water runs freely from the fontanella in front of the Colosseo metro station.  I am thirsty. I am hungry. I am tired.

I’ve only been out of my house for 5 hours, but I am desperate to go home, hungry for quiet and the peace that comes from being alone with whatever and whoever I am and am not.

Until Wednesday,

D.