Showing posts with label understanding. Show all posts
Showing posts with label understanding. Show all posts

Wednesday, November 20, 2013

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

Monday, November 4, 2013

Perspective Is Everything

On a regular basis, I wear so many different hats:

  • woman
  • wife
  • stay-at-home mom
  • sister
  • daughter
  • aunt
  • friend
  • writer
  • poet
  • learning coach
  • animal lover
  • photographer
  • artist
  • believer
  • thinker
  • dreamer
  • helpless romantic
  • music lover
  • cook
  • maid
  • confidante
  • nerd
  • protector
  • book fanatic
  • chocoholic
  • couch potato
  • nature lover
  • gardener
  • bleeding heart
  • puzzle addict
  • fibro warrior

The list really goes on and on. But the titles I hate most are perfectionist and overachiever. The previous list is a long one, and my plate is usually overflowing with a towering heap of these roles and interests. However, no matter how much I accomplish, the perfectionist/overachiever side of me points out everything I did wrong and didn’t finish. It is relentless!

I am currently sick--again--so my house is messy and needs a good cleaning. My chronic illness, fibromyalgia, puts a damper on my career ambitions, making it impossible to work a traditional job outside my home right now. Oh, and I can’t forget that I don’t get to do many fun things with my kids anymore. Lists of my flaws, shortcomings, disappointments, and failures could fill my entire home many times over.

Nevertheless, none of that matters. What matters is how hard I try every day to be the best person I can be. My house may be messy right now, but even with a head cold that makes me dizzy, I’ve managed to put dents in the mess throughout my home. Fibromyalgia may be trying to ruin my career, but it helped give me the courage to strike out and reach for my writing dreams. Plus, it gives me a new way to help and reach people. Oh, and as for my time with the kiddos, they still know I love them. We have many wonderful memories to cherish, and we are still making more each day.

Life may get easier. It may not. But either way, if I focus on what I CAN do and do my best always, I know I’ll be able to look back one day without any regrets. I can only accomplish what is within my current limitations, and I need to forgive myself when I can’t do it all. There is always tomorrow for anything that is left over on my daily to-do list.

If you are struggling with this issues, as well, I encourage you to focus on your abilities only. Try to let everything else roll away. No matter what anyone else says, you are NOT lazy and you DO accomplish enough. A chronic illness is a full-time job, and everything else must fit around that (just as any other person with long work hours). Please, remember that your health should always come first!


© Amanda R. Dollak 2013

Sunday, September 8, 2013

Sudoku Puzzles: A Distraction and a Reminder for This Fibro Sufferer

Photo Credit: Public Domain
Since I can remember, I’ve always been a puzzle lover. Jigsaw puzzles, brain teasers, word searches, and crossword puzzles have gotten me through many sick and rainy days. They’ve also helped me to relax and combat insomnia on more occasions than I could count. And now, as an adult, I’ve grown to love and appreciate the unique challenge and fun of Sudoku puzzles. After completing thousands of Sudoku puzzles in last 10 years, they have easily become my favorite type of puzzle.

However, I’ve come to realize that Sudoku puzzles are a wonderful way to gauge just how much my fibromyalgia is actually affecting me, particularly the brain fog part. On a normal day for me in life with fibromyalgia, I can complete a medium-level Sudoku puzzle with a little careful thought. On my better days, the numbers of these medium-level puzzles come easier. On a great day or at least a moment of clarity, I actually have a good chance to finish a hard-level Sudoku puzzle or two. But on my difficult days, I’m lucky if I can make heads or tails of a beginner's Sudoku puzzle.

Last night, I couldn’t sleep. I’ve been sick with a nasty cold, and I slept about 12 hours the night before into yesterday morning. By the time bedtime rolled around, I was tired but my body wasn’t ready to sleep. So, I logged onto Facebook and decided to play a little Sudoku. I was so in the zone and so clear of mind (even with a head cold and it being after 1 am!) that I actually finished a difficult Sudoku puzzle and scored the highest points in my entire history of playing that Facebook app.

But not even 12 hours later, I tried to play Sudoku again on Facebook, and now I can’t even finish an easy Sudoku puzzle. I slept for nearly 8 hours. I awoke feeling fairly refreshed (well, at least for a fibro sufferer). But the clarity is gone again. I’m back to struggling to think through the brain fog that normally lurks in my head. Gone is the feeling that it all makes perfect sense. Gone is the sensation that I’m finally myself again. Gone is the almost effortless thought process that so many people take for granted every day.

If you are a fibromyalgia warrior like me suffering daily from brain fog, know that you aren’t alone. If you are a friend or a loved one of someone with fibromyalgia, this is especially for you. The fibromyalgia sufferers in your life are not faking it or being negligent or lazy. Their memory and cognitive problems are real and overwhelming. During one of their bad days, they are going to need your support more than ever. Just imagine how you would feel if you temporarily forgot names or phones numbers you’ve known for years. Imagine how difficult it would be for you to suddenly be unable to properly express yourself to others because you can’t find the right words at the moment. Imagine how frightening it would be if you forgot where you were or how to get back home for a while.

The worst of these scenarios are usually short lived and only happen occasionally, but just take a moment to imagine how unnerving and awful such an episode would be. And try to fathom how difficult and frightening it is to know it will probably happen again, but you have no idea when or how it will affect you next time. You can’t prepare. You can’t prevent it. The possibility is always lurking around every corner. That, my friends, is what it is like living with fibro fog. Please keep that in mind the next time the fibro warrior in your life forgets something important or does something that seems completely ridiculous. Living with fibromyalgia is a lot harder than most healthy people assume.

Tuesday, May 21, 2013

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.

Friday, May 10, 2013

May 12 Is National Fibromyalgia Awareness Day

Fibromyalgia has vastly affected my life for over four years now. However, it was not until last year that I realized that there is a National Fibromyalgia Awareness Day. I accidently stumbled upon it on Facebook because one of my friends with fibro shared a photo about it. Before I knew that such a day existed, I didn’t consider how important awareness days are to illnesses, especially chronic ones. But now I see that with so much misinformation and lack of understanding out there, every person with fibromyalgia should remember and share this date!

The more we get accurate info out there and the more we talk about our chronic illness, the more likely that those around us will start to understand and support us. It seems like everywhere we go people are talking about cancer, heart disease, and diabetes. But what about fibromyalgia? No, fibromyalgia isn’t a terminal disease, but it’s still a killer. It’s a killer of dreams, of careers, of friendships, and of relationships. Just because we technically can’t die from this condition, it doesn’t mean we should suffer in silence and not try to find a cure—or at least a treatment that actually works for every fibro sufferer.

Yes, I’m relieved that pain-in-the-neck fibro isn’t a death sentence, but I often feel alone and rejected. So many people think our symptoms are in our heads or can’t possibly be as bad as we make them seem. I am a homebody—not by choice but because fibro is robbing my quality of life—so I often feel like I’m kept out of sight and out of mind of the public’s eye. I don’t want to be famous or get pity for my medical condition. Rather, I seek understanding and proper medical treatment. There are still so many doctors out there that don’t believe fibromyalgia is real. And there are far too many fibro warriors that suffer alone because their loved ones fail to see how debilitating this chronic condition can be at times.

Let’s spread the word about fibromyalgia this National Fibromyalgia Awareness Day, on each future awareness day, and all the days in between. The first step to reclaiming our lives is helping ourselves, each other, and those around us to recognize and thoroughly understand this invisible condition. Let’s show the world that yes, we are struggling and yes, we are in pain. And let’s put a face to this invisible syndrome. Let’s show everyone that we are fibro warriors! We fight today and always for ourselves, our fellow warriors, and an end to fibromyalgia.