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!

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.

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.

Sometimes I Run...Sometimes I Crawl

Hiking with my children

The normal progress of life is you learn to crawl as an infant. Then, you gradually learn to walk as a toddler. Finally, as you continue to grow, you gain the balance, strength, and agility to run. This progress leaves you with the mobility needed for the prime of your life. However, life doesn’t always like to follow the rules and it is filled with exceptions.

I am an exception. I’m 29 years old, but sometimes I still have to crawl: literally and metaphorically. As some of you may know from reading my past posts, I now realize I probably have had fibromyalgia since I was a young child. I never felt quite ‘normal’ and wasn’t as energetic or resilient as most kids. I was frequently sick and had many aches and pains. But through it all, I still managed to live an active and full life…until four years ago.

Four years ago, fibromyalgia crept in and became a permanent resident in my life. No longer was it content to come and go. It wanted to hijack my life and try to steal it away from me. For about a year, I allowed it to do just that. I was so exhausted, overwhelmed, and filled with pain that I stayed in bed much of each day. Of course, I still wanted to get better and I tried everything I could think of to treat my symptoms and figure out what was wrong. However, I virtually gave up on everything else in my life. Essentially, I had two things left: motherhood and my mystery illness. All else was stolen away from me.

Now that I’ve grown wiser and more accustomed to life with a chronic illness, I know now I cannot allow fibromyalgia to leave me in such a sad and unbalanced state. I must be a mother, and I must cope with my condition. But I also must be a daughter, a sister, a friend, and (soon) a wife. I must do what I love, set goals, find purpose, and enjoy the simple things in this world. I must hope, dream, believe, aspire, and grow. Sometimes I may run towards my future. Other times, I may crawl at such a slow pace that some may think I’m not moving at all.

Regardless of my speed, I must always be actively living this life. Life is far too short and fleeting to sit around waiting for things to change or to feel sorry for ourselves. Instead, we should be embracing the present and living right now the life we so desire…before the chance passes away!

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.

C...Cramping Muscles Are Cramping My Style

With spring more or less here, I’m yearning for some mountain biking and hiking. Now that I have fibromyalgia, I am reminded every year that I can’t do nowhere near as much as I used to and that what I can do must be prepared for far in advance. Basically, unless I work myself up to this mountain biking and hiking every spring, I will suffer horrible muscle cramps and pain.

So, here I am, with snow still floating around outside, using an exercise bike a little more each day to prepare for something months in advance--something that I used to do spontaneously at the drop of a hat. When fibro first took hold of my life I resented this to no end. I felt pathetic, weak, and embarrassed. I was ashamed that I couldn’t pursue a simple passion like mountain biking or hiking without training like some loser.

Now, though, I see my little training sessions in a whole other light. Instead of seeing them as a sign of weakness, I actually see them as a sign of strength. They are proof of the pain and effort I am willing to go through to retain a beloved piece of my life before fibromyalgia. No, I’ll never stop hating that the cramping and pain get in the way. Yet, I know now that I can and do have the ability to make small changes against my chronic illness. I do have the power to fight this. And even though it may take me a lot more time and effort than what is normal, I can hold on to the things that I cherish!

Do you have a chronic illness that gets in the way of you doing the things that you love? If so, what strategies have you developed to help counteract your illness? How have you adapted or evolved so you can still do some of your favorite things?