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!

Z...Zany in the Brainy: The Effects of Fibro Fog

Have you ever misplaced your keys and searched for them for 20 minutes, only to find they were in your hand all along? Have you ever received a bill with a late fee and you swear up and down up paid it on time, but then discover that you never actually did make that payment? Do you forget names, numbers, or addresses for people that you’ve known for most of you life? Or have you had cooking disasters simply because you lost track of which or how much of ingredients you’ve already added?

This is my life thanks to fibromyalgia. My memory issues, aka fibro fog, varies from day to day. Some days it’s just a minor inconvenience, and I’ve developed strategies to push me through. I use Google Calendar to schedule everything from meals to appointments to bills. I have it send me reminders to my cell, so I’m much less likely to forget one of my obligations. I use step-by-step to-do lists when I am rushed and have to complete a complicated task. I utilize alarms on my cell to remind me of exact times I have to be doing something. And I leave little Post-its around to keep myself on track. I create reminders for my reminders and notes for my notes. I try to make my schedule system so multifaceted and overlapping that I can get the information I need, regardless of how much I forget.

Occasionally, though, my fibro fog gets so bad that it goes beyond basic forgetfulness. Sometimes during a conversation, I’ll just stop because I can’t remember what I was saying. I forget meanings of words when I’m reading. In fact, I will stare at familiar words and not be able to even tell you what they are. I’ve had moments when I actually forgot my name. And once, I even got lost walking in my own neighborhood because I couldn’t remember how to get back home for a while.

Thankfully, these major memory lapses are temporary and the terrifying ones are an exception to the rule. But still, fibro fog is a very unnerving symptom, and sometimes it leave me feeling incredible vulnerable. I feel like I am losing my mind or losing touch with reality when my fibro fog gets too out of control.

I like to joke that fibromyalgia has left me zany in the brainy. That’s one of the way I cope. I’m a firm believer that to remain sane in this chaotic world, we need to find some humor in it all. On the other hand, though, I think I use humor as a way to hide how much fibro fog scares me. My biggest fear in life is losing my mind, and fibro fog gives me plenty of glimpses into my own darkest nightmare. To be quite frank, it scares the hell out of me! But I chose to laugh and I chose to find ways to work around my forgetfulness. That way I can feel like I‘m retaking some control of my mind!