Poetry: And Yet Fibro Remains!

This shell of a body,

Which once was fit and strong

And let me soar, oddly

Keeps me trapped all day long:

Limbs are heavy and weak;

Bones cry out from the cold;

Joints and muscles e’er creak...

Making me feel so old!

Skin breaks out in rashes,

And it almost always hurts.

Energy e’er crashes

And returns in small spurts.

Memory is broken,

Many thoughts get mixed up.

Many fears unspoken

In a nightmare closeup.

Anxieties abound;

Doubts have dampened my soul;

Manic anger resounds

As I fight for control!

Head is stuck in a vise

And struggles with migraines.

Mind is filled with ‘advice’,

And yet fibro remains!

© 2013 Amanda R. Dollak

I Act Like a Moron Sometimes

I am always one who tries to focus on the positive and what is healthy.  But, sometimes, we all occasionally need to hear the bitter truth, and I am no exception  That is why I am going to admit today I sometimes act like a total moron.  Yep, I said it.  I own up to the sad truth, so I can learn from it and move on.

Most of the time, I am an intelligent and sensible woman.  I have book smarts, common sense, and plenty of life experience for someone my age.  But to be completely honest, I do dumb things sometimes...things that leave me shaking my head in total disbelief.

My latest walk with stupidity is health related.  I have had fibromyalgia for years, and it has been severe for the past 5 years.  Since traditional medicine didn't work out, I've experimented with many lifestyle changes.  One of the things I've found which helps improve my symptoms and my quality of life is supplements.  I take vitamins B, C, D, and E daily.  Each morning, I also take magnesium and calcium supplements and probiotics for my IBS symptoms and urinary health.  That equals 9 pills to take every single morning.  Yes, it is a hassle to choke all those pills down daily.  I'd much rather be doing a thousand other things

.

However, without them, I'm back to being stuck in bed and miserable.  So, why do I keep forgetting them?  Why do I not make my supplements a priority?  I went a week without taking them--again--and I feel awful--again!  I knew this would happen.  Yet, I kept putting my supplements off again and again.  Does this make any sense to you? It doesn't to me, so I can only conclude that I can be a total moron at times!

So, once again, I'm making a pact with myself to make time every morning to take my supplements, no matter how disgusting they are or how busy life gets.  My body isn't going to take care of itself.  No, it is MY responsibility.  My body is precious and irreplaceable, so I promise to take care of myself today and always.  All of the hard work and discomfort will be with it in the end because letting my health go will only lead to worse and much, much more unpleasant consequences.  I'll thank myself later!

Have you ever forgotten your supplements or medications, as well?  If so, do you have any special  techniques that help you remember?

Writing Poetry Helps My Fibromyaliga

Dealing with fibromyalgia on a daily basis is messy business! It can be maddening and infuriating. Your friends and loved ones often doubt you and hardly understand what you are going through. Sometimes, you even doubt yourself or have a difficult time understanding this chaotic condition (even though you deal with it firsthand all the time).

It can be lonely and full of grief. Fibromyalgia can leave you mourning friendships, intimate relationships, and careers, which were once the center of your life. Your inability to be as mobile, energetic, and available robs you of people and things you love. Before you know it, you wake up and find your life is now a shadow of the full and robust existence it used to be.

And it can be overwhelming and stressful. During a fibro flare, even the smallest of problems and obstacles can seem insurmountable. Because your symptoms require so much extra time and fibromyalgia leaves you forever exhausted, you are always feeling pressed for time--as though you are running weeks, months, or even years behind. Even the smallest of task can be impossible on bad days.

Fibromyalgia can create so many negative and strong emotions, so it is imperative to find a way to purge yourself of all this emotional turmoil on a regular basis. One of my favorite outlets for my fibro’s emotional baggage is writing poetry. Composing all the words and lines gives me a constructive way to purge myself of the negativity that loves to haunt me. In my poems, I may start out dark and dismal, but by the end, I find hope and strength again. I feels amazing to work that all out on paper!

I also love writing poetry about my fibromyalgia because my finished poems serve as permanent reminders of how I’ve wrestled with my chronic illness and still always manage to end up on top. By writing down the little insights and encouragement I find while composing my poems, I can ensure I will have more positive insights to fall back on during future setbacks and bad days. Ultimately, writing poetry is a wonderful way to cope with fibromyalgia now AND in the future.

What helps you to cope with your chronic illness?

Check out my latest fibromyalgia-inspired poem here.

V...Verbal Venting

Since chronic illness involves so much negativity and feelings of frustration, anger, and grief, it is very important that we find a constructive way to vent. If we go through life pretending that everything is fine or that each day isn’t a battle, we’re setting ourselves up for more problems or even a meltdown. Trying to contain all the negativity and emotional baggage is unhealthy. And eventually you’ll explode because one way or another, your body knows it needs to purge itself to survive.

Unfortunately, though, inappropriate venting endangers our relationships and may actually spawn more negativity. If all we’re talking about is how bad we feel, how much we resent our illness, and how difficult life has become, no one will eventually want to be around us. Focusing too much on how badly our chronic illness has affected our lives will only leave us bitter, angry, and alone one day.

Because of this, we must find a balance. We must discover healthy and beneficial ways to vent. First, we must remember that it is good to verbally discuss our problems with close friends and family members. We need to remember, though, we shouldn’t use this as our only means of venting. When we find that our chronic illness is the subject of even half of our conversations with loved ones it is very unhealthy and is endangering our relationships.

That is why I have come up with some other useful ways to vent about my fibromyalgia. One wonderful way of purging myself of my chronic illness baggage is my personal journal. I created an online journal simply for jotting down my most negative thoughts, feelings, and fears. When I feel overwhelmed, like my life is spinning out of control and I can’t take it anymore, I sit down and write it all out in my journal. Then, I close the entry down and never revisit it again. This allows me to discard the negativity and push forward with my life.

Another constructive way I decided to deal with my illness was to create this blog. One of my biggest desires is to make a difference and to be there to support others with chronic illnesses. So when I come here I may feel discouraged and hopeless at first. However, after starting a new blog post, I find I can’t stay negative for very long. My desire to uplift and support my fellow chronic illness warriors always wins. 

There are many ways that we can rid ourselves of the negativity buildup. Exercise, yoga, volunteer work, arts and crafts, and music can renew our sense of purpose and accomplishment. Basically, if we do the things that make us happy, there will be no room for all the negativity. A happy, content mind isn’t fertile ground for all the darker things in life. When negative thoughts and emotions try to invade there won’t be a dark corner for them to fester.

U...Unbreakable, Unshakable, Unstoppable You

Sometimes we get so caught up in how our chronic illness hinders our lives or has harmed us that we can’t see beyond all the negativity. Yes, our health problems have robbed us of so much and make our lives incredibly challenging. But I want you to set that all aside right now and consider how it has inadvertently made you stronger. So many people are ashamed to admit that they suffer from a chronic illness. They are afraid that others will assume that they’re weak and pathetic. In reality, though, chronic illness is never for the weak. Because we must come back fighting every single day, we grow stronger and better in spite of it.

Since I’ve been diagnosed with fibromyalgia, I’ve noticed that my strength of will and determination have greatly increased. I decided early on that I wasn’t going to allow a chronic illness to ruin my life. I am far too young and I have too much potential to bow down to fibromyalgia. It would be so much easier to just stay in bed and not push through my symptoms. But what kind of life would that be? I don’t want to go to my grave knowing that I never really gave myself a chance to live.

Fibromyalgia has also made me a more caring and considerate person. With my health problems, I see every day just how difficult life can be and how much pain someone can be in while still looking normal. I can now truly understand other people’s pain and struggles. And now I have the desire, more than ever, to help people, especially those dealing with fibromyalgia and other invisible conditions.

The fact is life with a chronic illness is never going to be fun. We are forever going to wish that we could be well. However, we have a choice whether we will allow it to make us bitter and resentful or we will choose to let it make us a better person. I know it is difficult to focus on the positives in life when you’re constantly in pain. Believe me, I struggle with it as well. But I choose each day to make the most of the life I’ve been given. Sometimes that means taking a timeout, reassessing my reactions and attitudes, and then forcing myself to see beyond the negative. On my better days, this can take little effort. But on my worst days, it can be a constant battle.

Ultimately, it is up to you how much you allow your chronic illness to dictate your life. It may affect you in many ways, physically, mentally, and emotionally. But don’t allow it to steal your entire life. Reach for your dreams. Live hard. And enjoy the blessings of life.

P...Perfectionist Purgatory: Park Your Nitpicking at the Door!

I am a horrible, horrible perfectionist. I love to nitpick and criticize even the smallest of flaws. But most people don’t even realize this because to others, I try my hardest to be caring, forgiving, and lenient with those around me. When it comes to myself, though, I am brutal. I get so angry and frustrated with myself when I make a mistake or can’t meet my standards, which at times, are insanely too high to reach. The worst part is since I now have a chronic illness, I must deal with even more limitations.

To preserve my sanity, I have been slowly retraining my thought processes and expectations. I still have quite a long way to go before I can willingly cut myself as much slack as do with others. Nevertheless, I am happy to see I am not as critical as they used to be. Essentially, it was either do away with the perfectionist or sink myself deeper and deeper into the abyss of fibromyalgia. Fibromyalgia is a brutal condition that can create a dangerous cycle that spirals your health more and more out of control. The more you fight it and try to act normally, the more it drains your energy and your life. Only with moderation, understanding, and self-forgiveness can we break the cycle and start reclaiming our lives.

If you were recently diagnosed with fibromyalgia or another chronic illness, I encourage you to leave your inner perfectionist at the door. A chronic medical condition has no room for mentally and emotionally picking yourself apart. I know that old habits die hard, and it isn’t very easy to overcome the negativity. But when you are fighting a battle within yourself you must focus your strength and energy solely on lessening your condition’s hold on your life. With part of your mind constantly nitpicking, criticizing, and insisting that you are worthless, you’ll be fighting two battles: one with your chronic illness and the other with yourself. How far to you really think you will get if you fight against two enemies?

F...Fibromyalgia & Fatigue

What seems like another lifetime ago, I used to wake up every morning feeling refreshed and energized. As soon as my alarm went off, someone knocked on my door, or the cheery sun peaked into my window, I was alert and ready to take on the day. Each new day seemed so exciting and I couldn’t wait to make the most of every moment!

Nowadays, I find myself in this exhausted, drained, and worn out rut that I just can’t get out of. I feel like I haven’t slept in days, even though I usually get a full night’s rest. There’s probably a hundred different ways that I could describe how I look and feel every morning. However, nothing probably comes as close to describing my morning zombie-hood than one of my late father’s favorite similes: hammered dog poo-poo (although he preferred a much more colorful ending to that description). I simply feel so beaten, worn, pounded, and ragged that I can certainly identify with that image.

Now, don’t get me wrong. I am not here to complain or spread the negativity. Rather, I’m putting this all out there for every person who has passed judgment on fibro sufferers and insisted that we are lazy or just don’t try hard enough. Do you realize how hard it is to get out of bed in the morning with every molecule of your body screaming for more rest? It is pretty darn difficult! But you push on and through it because you have places to go and people to see.

Yet, what if you never actually pushed through it? What if it kept repeating? What if this horrible morning haunted you every single day for the rest of your life? Would you keep pushing on day after day after day? Or would you eventually want to give up?

Tell me…after Day 1,000 would you be just as determined and sure that you could get on with your life as you were on Day 1? I don’t think so! And yet, we fibro sufferers must do just that, while enduring all your flack and criticism. What we lack in physical strength and energy, we make up tenfold in inner strength and determination.

Yes, we have bad days, and some days, we stay in bed to try to recoup for another fight against our chronic illness. We readily admit that we get discouraged, frustrated, overwhelmed, and depressed at times. However, we don’t stay that way. It is not in our nature to give up or give in to our fibro. We will fight, struggle, and push against fibromyalgia until the day we die…or at least until our war against chronic illness is won!

D...Doubts, Disappointments, and Deflated Dreams

Chronic illness is a difficult thing to swallow. It can be challenging to treat, usually can’t be cured, and often haunts us until the day we die. Although I try every day to be as positive as possible, I, too, am not immune to the doubts, disappointments, and deflated dreams that chronic illness brings. Just like many of you, I have my low moments, times when I focus a little too much on the negative side of things. I cry over dreams that may never come true. I mourn the loss of the life I once knew. I worry about the days ahead and struggle with doubts that I will ever live a productive life.

Right this very moment I am struggling with my fibromyalgia and the effects it has on my dreams for my writing career. My heart, soul, and mind are overflowing with ideas, inspiration, and determination to reach my goals. Still, my body is weak, and the fibro is winning today. I have so much to write, so much to share, and so much to do. But fibromyalgia has my body so sore and worn that I am typing this with only 3 fingers. The strength and will of my hands left me yesterday because of this enemy within.

In time, I know the blunt of my fibromyalgia will decide to migrate on to another part of my body and most of the strength will return to my hands. It always does. And I will be back to typing fast and easily at my keyboard. In the meantime, I simply need to put the doubts and fears away and to continue pushing through as best I can.

My late father always loved to remind me that defeat doesn’t last very long if we stay strong and never give up. But if we stay down and feel sorry for ourselves for too long, defeat will take root and make it harder and harder for us to throw it off our backs. Some people might call it foolishness or stupidity, but I will keep bouncing right back, no matter how many times my chronic illness knocks me over. Struggling with fibro has gotten me this far. I’m not going to back down now!

Spreading My Fibro Story

I just started writing for a new site called Bubblews.com.  As my first article, I submitted a piece about the top 3 things I feel everyone with fibromyalgia should not live without.  I am hoping by spreading the word about fibromyalgia on more sites, understanding will grow and more people will receive the proper support they deserve.  If you are new to fibromyalgia, have a loved one suffering from this difficult condition, or are simply curious, stop on over and read a little more about my story and my take on coping with fibromyalgia:

Top 3 Fibromyalgia Essentials
Submitted by ARDollak on March 08th, 2013
Category: Health

The National Fibromyalgia Association(1) explains that fibromyalgia “is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue, and often psychological distress.” As a fibromyalgia sufferer, I personally know how difficult and frustrating this chronic condition can be. It can turn your entire life upside down, leaving you feeling lost, hopeless, and alone. It affects your relationships, your work life, and even the simplest of chores. You can go from a completely happy and active individual to someone who can’t even make it out of bed on the worst of days. Because fibromyalgia is a difficult syndrome to treat, there are 3 things that are vital for those with fibromyalgia.

Continue reading here.

Don't Allow Fear of Failure Steal Your Life

There's light at the end of the darkness...

Why are we so afraid of failing? Why do we allow our fears to hold us back and limit our potential? When will we finally realize that only true failure happens when we never even try?

At times, I am fearless. I’m proud to be a unique individual, and I thrive in my distinctiveness. I take pleasure in being me, no matter how silly, goofy, or weird I may get at times. Life wouldn’t be nearly as much fun if I tried to be more ‘normal’!

Yet, for some odd reason, I’m a lot less bold when it comes to my talents and dreams. Fibromyalgia has made me even more so. The daily headaches and frequent fibro fog have left my mind in turmoil. Once upon a time, I was able to do complex math problems in my head. Now, I forget things left and right.

The pain and fatigue (not to mention the multitude of other symptoms affecting my body) have robbed me of a lot of my strength, stamina, and endurance. Years ago, I could hike over 14 miles and feel tired but exhilarated. These days, though, I have moments when I struggle to do the simplest tasks and just the idea of leaving home can be tiring.

When you are reduced to something smaller than you used to be it’s so easy to feel discouraged and to wonder if you are still useful. I would be lying if I said that I didn’t struggle with this, too. In fact, I fight it on a daily basis.

There’s always that annoying voice that loves to spout negative thoughts and fear. If you don’t learn to confront it regularly, that obnoxious, whiny little voice eventually won’t be so little anymore and will slowly take over the rest of your thoughts. I know because when my fibro flare first hit, I was bedridden for days at a time and was stuck listening to the Gloomy Gus lurking in my head.

Oh, he’s still in there, trying to needle his way into my every thought. Over time, though, I’ve learned to drown him out a lot.  And when he decides to throw a little temper tantrum to make his ideas known I’m not above looking myself in the eye in the mirror and telling him out loud what a liar he is. Yes, folks, I’m a strong advocate of talking to yourself.  It can be very good for your health.  Sometimes the negative thoughts and feelings get so loud that only a verbal confrontation will do!

If you are struggling with questions about your self-worth or wondering if you are a complete failure, please know that you are not alone. Those of us dealing with chronic illness have been here on quite a few occasions. It's important to remember that no matter how long we’ve been in this sad place or how many times we return here, we are NOT failures! God loves each and every one of us and has a special purpose in mind for our lives. We must have faith that our struggle is not in vain and that God is constantly working behind the scenes.

The truth is we may never know why God is allowing chronic illness into our lives or what good he will bring out of our pain. But we must put our fears of failure and worthlessness aside and live the best we can every day. We cannot live our lives hiding. That won’t get us anywhere. We will still be stuck in the hole that our chronic illness has dug for us, and it will eventually become our graves…if we allow it.

Please, NEVER allow it! Rather, join me today and press on bravely into the unknown. We may inch along slower than a snail’s pace, but at least we will always know that we stood up to our health problems and refused to surrender or bow down. We are the masters of our bodies—of our life’s journey-- and chronic illness never will win!

Fibro's a Pain in the Neck!

Sometimes life sends us in circles...

Fibromyalgia is a pain in the neck…and the back…and the head…ok, the whole body for that matter. This figurative and literal pain can drive us insane at times! Living with a chronic illness--particularly one with chronic pain--requires a lot of patience and learning to be as positive and determined as possible. But sometimes we just have to let all the built-up negativity and frustration out.

During these moments, we long to scream, curse, rant, and rave until our invisible battle is uncovered for all to see. We only want some understanding, a sympathetic ear, and a reminder that we have not been forgotten. Chronic illnesses can be such a lonely, desolate journey as we watch the world pass us by.

I think that that is one of the things that bothers me the most. I fear that the world will continue to race on by while I creep along…until one day, all that I love and hold dear is gone forever. I know; sounds like a pretty irrational fear, doesn’t it? I’m still here. The world is still here. We all exist on the same plane. Time doesn’t pass faster or slower for one or another. Life still progresses at the same chronological rate as it has since the beginning of time.

But as human beings, we are more than time and space, aren’t we? Our bodies may still be in the here and now, but our minds, hearts, and souls can be anchored in the past. Part of me is still being held captive by the beginning of my major fibromyalgia flare (about 4 years ago). And every day, I feel as though I’m dragging this enormous weight, desperately struggling to catch up from the last few years of my life.

It’s an infuriating feeling! Do you know that feeling you get when you sleep through your alarm on a busy day and wake up an hour or so late? You are left scrambling from one appointment or task to the next, trying so hard to make up for that lost time. However, rarely can that time be recovered. It is usually lost forever and puts into play a chain of events that leaves you feeling out of sorts and rushed the whole day through.

That, my friends, is often how my life feels these days: so often tardy for the party. Now don’t get me wrong. I’m thankful for every day that I am blessed with. I’m lucky enough to have been diagnosed with something that may alter my life and aggravate me to no end. Still, ultimately, I will win the war because it can never take a day away from my life if I don’t allow it!

On the other hand, though, it is so annoying to always feel late for one’s own life! I long for the day when my to-do list doesn’t include unfinished projects from years past. And I’d give almost anything to be able to afford a day off, a day to just relax, enjoy myself, and have fun without this nagging feeling that I should be somewhere else playing catch up.

Over the years, I’ve learned to lessen that accumulated load by allowing frivolous and unnecessary tasks to fall on the wayside. When life becomes a more difficult and tiring journey it’s essential to lighten the load from time to time. Perhaps, as I grow and evolve, I’ll find more things that no longer matter and my load will continue to grow lighter still. And even though I might stop every now and then to voice my complaints with the condition of the road on this journey, I will NEVER give up. I know one way or another, I will push through, and perhaps one day, I’ll even be early for a party or two!

Why Keep Fighting Fibromyalgia?

I must keep writing, no matter the obstacle!

Sometimes fibromyalgia makes us doubt ourselves and the things that we do. It is so easy to wonder what’s the point of fighting every day when it is so hard and doesn’t seem to be getting us anywhere? Wouldn’t it be simpler to just give up and only do the bare minimum? Fibromyalgia saps so much energy in the first place, so why should we waste what little we have left?

Every now and then, this annoying train of thought gets stuck in my head, particularly whenever I have problems sleeping. This week I have struggled with these thoughts quite a bit. I’ve been achy, twitchy, and throbbing from head to toe for days, making good sleep impossible. I’ve been up until 1, 2, even 4 am this week, trying desperately to get my mind to ignore the endless, chaotic messages my body is currently sending to my brain.

But on top of this, inspiration has been bombarding me, as well, these last few nights. Countless ideas, poetic lines, and new projects have been popping into my mind…and being the creative person that I am, I can’t possibly ignore a single one! Yet, being the exhausted, cranky person that I become when I have too many restless nights in a row, I’ve started doubting and attacking my writing again:

I should be sleeping, so why am I allowing myself to get distracted? Where has my writing gotten me so far? It seems to cause more trouble than it’s worth these days since it’s keeping me up at night and sapping precious energy. I can’t work at it full time, so why even try?

Yeah, it would be pretty easy for me to call it quits, and the ideas would slowly fade away as I chose to ignore them time and time again. Still, where would that really leave me? Fibromyalgia has taken my college education, made it null and void (at least for now), and rubbed it in my face more times than I’d care to recall. I can’t physically handle a job outside my home. But at least with freelance writing, I still get a sense of purpose, usefulness, and satisfaction…despite my life-altering chronic illness.

Additionally, I can’t forget that writing is a big part of who I am. Cancelling my regular writing time is one of the worst things for my health and state of mind. If I don’t write and share my thoughts, ideas, and experiences, I emotionally get all clogged up and I feel completely off. I suffer from mental constipation, too. All in all, I’m a cranky, stressed, and off-balanced individual when I ignore my natural desire to write. I’ve been there and done that…and I don’t plan to go there ever again!

Lastly, who am I to stand in the way of what I am meant to be doing? If I have the desire and the ability to write, there has to be a purpose. God doesn’t give us gifts and talents without a reason. I haven’t a clue what he might have in mind for my writing abilities, but I’m going to do everything I can to follow my heart. It may be hard at times as I struggle with fibromyalgia’s multitude of annoying and sometimes debilitating symptoms, but I’m going to be true to myself and write every chance I can. There isn’t any other possible way for me to live my life and still be happy.

Fibromyalgia: Life Changing, Not Life Stopping

One the most difficult aspects of having a chronic illness like fibromyalgia is the realization that I can’t do it all.  Almost 10 years ago, I was fresh out of high school.  I didn’t have everything figured out, but my optimism was high and my dreams even higher.  There was so much I wanted to do with my life, and I was confident that with time and hard work, just about anything was possible.

Like the butterfly our lives are full of mysterious change...

When life left me a single mother of two children under two, still in college, and struggling to make ends meet I didn’t bat an eye.  I rose to the challenge and pressed on as best as I could, sleeping sometimes only 3 or 4 hours a night.  It was hard.  I wanted to give up a thousand times.  And I many times questioned whether I was really meant to finish college.  But in the end, I made it through because I constantly reminded myself that sometimes sacrifices need to be made now to have the life we want for our families later.

Now, though, fibromyalgia has taught me all too well how fragile and limited a person actually can be.  At first, I raged and fought against the chains fibromyalgia had placed on my life.  I was furious and ashamed of what I was reduced to because of an invisible, cowardly condition.  I was angry with God.  How could he punish me like this?  Didn’t I already have my share of problems already?  If he is so good and loving, how could he put me through such suffering and pain?

And then I become enraged with myself.  What had I done to deserve this?  Why hadn’t I taken better care of my health?  Why couldn’t I struggle harder and beat this thing?  What was to become of my life now that I was nothing?

I went from being an honors student all my life to becoming a graduate school flunky.   Once I prided myself in being a hard worker, always giving 100%, but I was reduced to a pathetic being that could hardly get out of bed.  Except for my children, I felt like I no longer had any purpose in living.  And I lied awake many a night begging and pleading to God for help because I knew I couldn’t possibly support my kids broken and shattered like this!

Years later, I thank God that I’m no longer in that dark place.  No, I don’t have the life I had before back.  I’m still in pain every day and must deal with intense fatigue and a multitude of other symptoms on a regular basis.  What has changed is my attitude towards my fibromyalgia.

No matter how difficult my symptoms may get, I have vowed to NEVER give up!  We only have a single life to live, and it is a precious gift.  We can’t control what unfair hardships and struggles life hands out, but we CAN control how we handle those situations.  When life knocks me down I get right up and push back harder!  My fibromyalgia might set me back for a day, but I refuse to let it hold me back forever.

No longer do I reach for impossible dreams laying somewhere in the distance.  Instead, I hold on to the here and now—whether it be today, this hour, or even this very second—and try to make the most of it.  I still have some my life dreams, but I’ve had to become more realistic and a lot more creative.

If my fibromyalgia doesn’t improve anymore, I know a traditional job is out for me.  However, my little hiatus has allowed me to rediscover my first love: writing.  In the hustle and bustle of everyday life, I had forgotten how happy and relaxed writing makes me feel.  Part of me thrives only when I put my thoughts, feelings, and ideas down on paper.  If I don’t write regularly, I just feel off balance and out of whack.  Ultimately, I’m not myself when I’m not writing.  So, in a sense, in the midst of this health crisis, I have re-discovered my true self…and that part feels amazing!

Yes, I get discouraged and wish I had my healthy self back.  Yes, I have bad days when I’m stuck in bed and don’t get a single productive thing done all day.  But I’ve come to realize that I will never truly lose my life to fibromyalgia as long as I pick my priorities carefully, regroup, and come back fighting another day.

The Best of Intentions

Growing up, my father always lectured me on finishing what I start.  He drilled it into my head over and over again that if you begin a project, you must not leave it incomplete.  I love my dad dearly, but he was a horrible perfectionist who believed that it was better to never start something in the first place than to leave it forever unfinished.

Although I do agree with my father's philosophy to some degree, I have to say that sometimes it isn't about the final destination but the journey itself. Sometimes, it is more important to start the journey and to see the different places the road might take you than to constantly worry about where it all might actually end.

A few months ago, I began this blog with a very specific destination in mind.  I hoped to use this blog to share, explore, and find a new and better me...one that is happier and healthier, whether or not my fibromyalgia ever decides to go away.  In the beginning, I was extremely inspired and had great ideas in mind for this blog.  Honestly, I had high hopes and the best of intentions to see this journey to an end.

However, life soon got in the way and distracted me from my original intentions.  The late summer heat sapped my energy and left me with uncomfortable migraines.  Then fall came upon us, bringing a new year of cyber schooling my 2 young children and my yearly autumn flare.  And now I am in the middle of vast changes in my life with the purchase of my family's first home.

To be completely honest, I'm super exhausted and overwhelmed by the magnitude of life changes I have endured the last three months with conquering clutter, packing up an entire household, moving it all to our new house, and now unpacking to make this new house a home. Yet, all these changes have reminded me again of how important this journey of self discovery and self improvement really is to me and why I wanted to share it with you all in the first place!

After I first was hit by this fibro storm about 3 1/2 years ago, I felt totally alone and helpless.  I seriously felt my life had ended and no one cared.  I didn't know what was wrong.  My doctor was as clueless as I was.  And my family and friends seemed to look at me like I had lost my mind.  I have come a long way since that awful, lonely time, but I still have far to go.  And if this blog helps even a single person to avoid the dark, desolate hell that I endured because no one understood or believed me, then every single second and iota of energy that I put into this will be worth it!

No, this blog probably will not be the spectacular, clear-cut journey I had envisioned at the beginning, but it's still a worthy journey that I must take.  Please bear with me as I fight my fatigue, migraines, pain, and brain fog to bring you my thoughts, experiences, and helpful fibro tips.  I can't promise you daily blog posts or amazing insights, but we are in this journey together...through thick and thin.  If and when my best of intentions fail again, I promise to come back fighting as strong as ever.  We can do this together and we shall prevail; here's to a fantastic, fancy-free future for us all!

A Holiday From My Holiday

Fireworks Grand Finale

Yesterday was Independence Day, one of my favorite holidays. I spent the day with my family. We had a cookout at my future mother-in-law’s home with lots of good food and wonderful conversation. We had 5 hours of relaxing and socializing outdoors. Afterwards, we drove to see a local fireworks display and then returned home for a few sparklers and small fireworks with the neighbors. Overall, I would say that it was a happy, enjoyable day. I went to bed close to midnight last night with a smile on my face!

This morning, though, I awoke and felt as though a train had run over my entire body--twice! No, I did not run a marathon. In fact, the most physical thing I did all day yesterday was make a dash from the picnic area to the back porch when it started to rain (a distance of only a few feet!). For all intents and purposes, it was a lazy holiday, and I should have awoken refreshed. Instead, I have been forced to stay in bed for the majority of today.

For all of you who suffer from any condition that involves fatigue and chronic pain, you know what I am feeling right now all too well! I am suffering from what I like to call “holiday-from-my-holiday” or “day-off-from-my-day-off” whiplash. This state of necessary recuperation occurs whenever we decide to do too much on our free days. It can manifest in many sneaky ways and usually occurs when we are having a lower symptom day. We decide to have a cleaning/working marathon to catch up from a tough week. Or we have the opportunity to do an activity we haven’t done in years, and we get overzealous. Or like me yesterday, we underestimate the physical, emotional, and mental toll a long (albeit laidback) day can have on us.

When we were healthy we could go with the flow and do whatever we felt like at the moment. If we were energetic, the world was in our hands. We were free to seize the day! Now, though, with a chronic pain and fatigue, we can’t go solely by what our bodies and minds want. Sometimes, our bodies fight us at every turn, and we must push to get the simplest tasks finished. Other times, our bodies lie and make it seem as though we are almost normal again.

Even though I have been dealing with fibromyalgia for half my life, I still fall prey to this trap time and time again. I’m a ball of energy by nature. I love to be moving. I love to be accomplishing things. Hard work makes me feel good. I was raised to work hard and then push even harder. And I’m a perfectionist to a fault at times. I compete with myself constantly, and I always set high goals.

Unfortunately, fibromylgia and this mentality can be an explosive combo. My stubbornness and inner determination have helped me in so many ways over years. At times when I thought for sure I couldn’t go on because my symptoms were so unbearable, my inner strength and focus pushed me through. However, this hardworking perfectionism of mine has also done its share of harm. I have inadvertently confined myself to bed for over a week (several times) simply because I felt pretty normal and thought I’d get a ton finished before my symptoms flared up again. Even now I’m tempted to go into a cleaning/working frenzy EVERY single time I have a better day.

Ultimately, living with such a limiting medical condition is an extreme balancing act. We can’t allow our health to dictate how we live our lives or to define who we are as individuals. Yet, we can’t ignore it and pretend that we can still live the same lives were living before. We should never let it defeat us, but we can’t push so hard against our own bodies that we are defeating our own selves. We must find a happy medium--a place where we are free to be ourselves and to live life to the fullest, while still planning and living through the confines of our symptoms.

We need to be much more adaptable and pliable. If our bodies block one avenue, we must never give up on finding another more richer path. I am not one of those people who will ever throw at you the ‘if-life-gives-you-lemons’ advice. Sometimes, the fact of the matter is life can be pretty unfair and leave us with unripe, un-juicable lemons. We can sit around and grow bitter. But what is the sense in that? Personally, I’d much rather throw away the lemons and live my life the way I feel it should be lived!

Let us grab life by the horns this month and show it who is boss! Instead of complaining about life happening, let us shape it and enjoy it like we never could have before facing this formidable foe. They say that ‘necessity is the mother of invention.” Well, we need to find a life that works better for us. So, let us start inventing it now. How we live our lives is truly in our hands!

Welcome to Fibro and Fancy Free

Hi, everyone, and welcome to my new blog! My name is Amanda, and I was diagnosed with fibromyalgia in January 2011.  I’ve had symptoms since I was a teenager and possibly most of my life. I decided to start this blog as a way to share my journey to a freer, healthier life, while offering a place for my fellow fibro suffers to support one another and swap survival tips.

As I contemplated titles for this new blog, Fibro and Fancy Free leaped into my mind. Everyone familiar with fibromyalgia knows that this medical condition can be absolutely excruciating and debilitating. So how could my mind associate ‘fancy free’ with fibromyalgia? I know a lot of ‘f’ words that would more readily describe my daily struggle with own body. Many of them are pretty negative.

Do some of these sound words like your own struggle?

After some careful reflection, though, I realized that I want and NEED to reach a point in my life where my condition no longer defines who I am as an individual. ‘Fancy free’ represents where I want to be. Do I want to live in denial and pretend fibromyalgia is a pleasant walk in the park? No, of course not! Have I convinced myself that it’s not real or only in my head? Oh, it’s real alright! In fact, it reminds me of its presence all of the time. Am I convinced that it is going to just vanish? Absolutely not! Part of me longs for the day I’ll be fibro free, but the rational side of me realizes that with a 2 ½-year flare up and years of symptoms, it may never clear up.

Although I’ve accepted the fact that I may be stuck with fibromyalgia for the rest of my life, I have not given up. I will continue to fight the good fight and strive for a healthier, happier tomorrow. I know the journey won’t be easy. In fact, I’m expecting many bumps in the road and quite a few setbacks. But I hope you will join me so we can travel this difficult road together!