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 Got Lost Today

Snapshot from my walk

I got lost today. For a month now, I’ve been taking a morning walk every weekday. I head out each morning from my door and pick one of two paths: a hilly route around my block or a flatter but longer route around the dead-end street above my home. I chose the latter today, which makes this my sixth walk on this route.

It’s a pretty simple route: (1) walk from my house to the intersection. (2) Follow the curving street until it reaches the dead end. (3) Then turn around and retrace my steps back to my house. It’s so simple that I’m sure my dog could walk it on her own.

But anyone with fibromyalgia soon realizes that nothing is ever easy with this debilitating condition. As usual, my 7-year-old son (who I cyber school at home) and I eagerly set off on our morning walk with our family pooch in tow. I noticed immediately that the morning air is getting crisper and the beautiful fall leaves are beginning to adorn the world in all their glory. Fall is my favorite time of the year, so soaking up the many sights, sounds, and smells of autumn is exhilarating. And I was filled with such contentment and happiness this morning…

...until my fibro fog decided to strike with a vengeance! One second, I was admiring the splendor of fall and taking a few snapshots with my cellphone. The next I found myself dizzy, disoriented, and with no idea where I was. For a few split seconds, my surroundings looked completely foreign, and I felt like I was lost!

Believe me, my first reaction was to panic and freak out. My heart started racing. My anxiety suddenly reared its ugly head. I began sweating profusely. And my entire body started trembling.

Catching a glimpse of my son, though, in my confused state, I reminded myself that I really needed to take a deep breath and try to come down. I know from experience the more relaxed I can make myself, the quicker the brain malfunction passes. Plus, I didn’t want to scare my little buddy.

As such, I closed my eyes for a few seconds. I took a few slow and deep breaths. And I pushed all the panic away. As soon as I opened my eyes, everything was back to normal as suddenly as my brain had gone blank. I recognized every house and every tree. I could visualize the way home even without looking behind me. With that realization, I sighed a HUGE sigh of relief. Another one of those horrifying (but far and in between moments--thankfully!) had passed.

My son and I finished our walk with our sweet doggy and continued on with our day like any other. Still, part of me couldn’t help but harbor the notion--just for a fleeting moment--what if one of these colossal brain farts (as my husband calls them) settles in and never fades away? What if I’m stuck in a state of intense confusion for the rest of my life? It’s a frightening thought, indeed!

Yet, I refuse to allow that thought to stay and fester. Ultimately, life is brimming full of what-if’s for everyone. Life is forever opening up new possibilities every second: both good and bad. However, only a handful of them ever happen, so it would be pointless and insane to obsess over the bad things that may happen (or probably will never happen) someday. If we focus too much on the negative possibilities, we’ll miss all the wonderful things that DO happen. Instead of enjoying the here and now, we will be squandering the present by worrying over what possibly won’t ever happen our entire lives. That’s certainly no way to live!

Consequently, my weekday morning walks WILL continue like nothing ever happened. Hey, I may get lost for brief moments from time to time with my fibro-dysfunctioning brain. It’s bound to happen since it’s happened before. But I refuse to allow a distant possibility to sideline me from living my life as fully as I can. Fibromyalgia steals plenty of my precious seconds. I’m not about to freely hand over any more of my life!

I Live in Constant Fear of Losing My Mind

I’m going to confess something to you today. I live in constant fear of losing my mind. No, I don’t question my sanity. Well, at least the vast majority of the time. I’m not concerned that I’ll snap and go postal one of these days. Oh, and I’m in no danger of losing touch with reality and trying to live a fantasy. I’m much too down to earth for that.

No, there is a constant fear hiding in the back of my mind that fibromyalgia is going to take over completely and my memory will be shot. Even now, my short-term memory is holding on by a thread. I forget to lock doors at night. I forget whether or not I already took my pills. I forget appointments. I forget phone numbers. I forget that I already told people the latest news. I forget recipes that I’ve known by heart for years. I forget usernames and passwords. I forget where I put things. I even forget momentarily where I am.

The list goes on and on in life with fibro fog. Sometimes, my memory lapses only last seconds. Sometimes memories come flooding back with a certain thought, sound, or action. Sometimes, though, the info that I’m searching for is lost forever. It can be an overwhelming and scary life to lead whenever your second biggest personal fear is losing your mind!

My latest mishap that occurred because of a memory lapse happened this morning. My fiance woke me up at 4:30 to tell me that all our cats were outside because they escaped through an opened window. Of course, as soon as he mentioned that open window, I remembered immediately that I was to blame. I had only planned on keeping the two screenless windows in the house open for a short time while I was in the room. It was hot in the house and I was overheated and miserable. A couple cracked windows was enough to keep me from melting into a puddle a goo.

I honestly had every intention of closing those windows. I love my furbabies, and I worry all the time about them getting out and eventually getting hurt. Outside is a scary place for a frightened cat that can’t find a way back in the house or that has no clue how to survive. Dangers lurk everywhere. I would never intentionally put my kitties at risk.

That is why my stomach is sick still with the thought that I put them in danger. No, it wasn’t intentional, but accidents do happen and then I wouldn’t be able to forgive myself. I’m thanking God still that all my cats are back in the house safe and dry. Yet, I’m also kicking myself and worrying that something like this will happen again.

We are planning to get new screens for these two windows as soon as possible, but what are the chances that I do something else that inadvertently causes harm? The chances are pretty good with my memory’s track record. And that thought scares me!

I use Google calendar to send me reminders to my cell concerning every important thing I need to remember. That way if I forget I will still get it all finished. Well, it looks like I’ll be adding a lot more daily reminders, including checking all windows and doors. It is time consuming, but almost anything is worth it to win this war for my mind!

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.

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!

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!