B is for Bathtubs

The next helpful must-have for people with fibromyalgia is a big, relaxing bathtub. When I used to have a bathtub, I grossly took it for granted. When I was experiencing a severe flare I never failed to utilize this beautiful blessing two...three...even four times per day. I stocked up on Epsom salt, moisturizing bubble bath, and relaxing bath oils to help combat my fibro symptoms. It wasn’t until we bought a home with only a shower that I came to realize what I had lost.

There is something incredibly soothing about gently floating in a hot bath after a long day. Wet heat and Epsom salts eased my stiff, achy, cramped muscles. Warm water combined with moisturizing bath soaps or bubble bath brought amazing relief to my itchy, dry skin. And relaxing bath oils melted away the stress and tension, as well as helped me combat insomnia. I miss those days, and I’m hoping to save up money to install a bathtub soon!

All my fibro warriors, I highly recommend you take full advantage of your bathtub, and if you don’t have one, it would be wise to eventually install one. A shower feels nice, but it never seems to get the heat deep enough and it prevents you from soaking and relaxing. Bathtubs might seem like ordinary, everyday parts of our home, but it is certainly a godsend in disguise. I have yet to meet someone with fibromyalgia who doesn’t agree that bathtubs make the perfect break from the fibro struggle.

Wordless Wednesday: Are You Ready for Winter?

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.

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!

Weather Woes

My poor body is in total shock. It has been sunburned, then frozen, then soaked, and finally roasted--all within a matter of two weeks. (And now it looks like it will have to deal with scattered thunderstorms again for the next few days.) The weather has been completely bipolar this month, and my body is suffering.

As many of you may already know from experience, fibromyalgia doesn’t like extreme weather. And it especially hates sudden and drastic changes in weather. These changes make the body severely sore, stiff, and unable to regulate its body temperature. And the worst part is weather is a fibro trigger that we can’t do much of anything about.

You may argue that we can always move to a more tolerable climate or simply stay in the house. However, weather can be pretty unpredictable anywhere you go. And hiding indoors does little to silence the chaos outside our door.

In the end, we are forced to muddle through the best we can. When we experience a weather flare we should try to get plenty of rest. Also, stocking up on anything that helps soothe our flared symptoms is a must. Finally, we can’t allow ourselves to do too much. Pushing ourselves when we are already under a lot of strain from the weather will only makes things worse. Using common sense and pacing ourselves during these difficult times could be the difference between a flare that lasts only days to one that goes on and on for weeks.

Which one would you prefer? I, for one, would much rather spend as little time laid up as possible. Because of this, I’ve learned to listen to my body and only do what it is capable of doing at the moment. If it says to sleep, I sleep. If it tells me that I’m pushing myself too hard, I take a break and later return at a much slower pace. Ultimately, we must all learn to listen to our bodies. That, my friends, is the best treatment we can prescribe for ourselves!

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!

T...The Terrible Twitches

As I sit here writing this tonight, I’m wrestling with my sanity. No, I’m not worried that I’m literally losing my mind. But I am aggravated and frustrated beyond words. My left eyeball has been twitching all day long and I can’t seem to find anything that will help. The twitching is so intense that I keep checking myself in the mirror. With how much it is interfering with my vision, you’d think it would be visible externally. But like most of my twitches, it is just another hidden symptom of fibromyalgia.

Before I started taking magnesium, vitamin B, and vitamin D supplements, I was wracked with twitches throughout my body on a regular basis. For those of you who rarely or never suffer from twitches, you may not realize how difficult such a symptom is. Actually, I’ve had more sleepless nights due to nonstop twitching than I’ve had because of my pain. I learned early on how to take the edge off of my pain. So unless my pain is severe, I can still get some rest. But with twitching, my brain stays continuously engaged. I can literally see the movement of my twitching and throbbing inside my head. And of course, all this twitching and throbbing is not at the same time. As a result, my body can have quite a lot of commotion going on when I’m trying to sleep. At times, it feels as though I have an army of microscopic tap dancers having a ball on my body.

I have always been a light sleeper. My brain stays active if there’s too much light, noise, or even smells. And internal movement is just as bad. My doctor put me on muscle relaxers to try to lessen my twitching and muscle spasms. But even at the maximum dosage, my symptoms did not improve. I was beginning to think I’d be stuck with twitches and muscle spasms for the rest of my life. Imagine my surprise, the severity and frequency of these issues greatly improved after starting the supplements that my doctor recommended.

I highly doubt I’ll ever be twitch and cramped free. Still, it’s a relief to know that the symptoms are not nearly as bad as they used to be. It sure means a lot less sleepless nights and aggravation.  If you suffer from twitches and muscle spasms, I highly recommend that you speak with your doctor about if these supplements are right for you. Getting enough vitamins and minerals is an important part of getting and staying healthy.

L...Layers and Layers and More Layers, Please!

Fibromyalgia is mostly known for causing widespread pain throughout the body. However, a lot of people don’t realize that this same chronic condition can cause problems with body temperature regulation. Since I developed full-blown fibromyalgia (over 4 years ago), I’ve noticed that I am very sensitive to both hot and cold. If I get too overheated during the summer, I get physically sick to my stomach, and I’m hit with a wave of dizziness and horrible headache.

My sensitivity to cold, though, is much more extreme. During the winter, I have to dress in multiple layers just to be comfortable in my own home (since I can’t be sweating out the rest of the household with the furnace). And whenever I need to go outside, I need to don even more layers. If I don’t keep myself covered with 3 or more layers, the cold makes me hurt to the core. Imagine taking the coldest ice cream and shoving it into an exposed tooth nerve…then multiply that by at least 10. That’s what cold exposure does to me.

Without tons of layers, I feel like I am rolling around in snow drifts completely naked. The pain knocks the breath out of me, and I can feel my warmth escaping from wherever I don’t have enough clothing. My life gets extra complicated during cold weather because I have to make sure I am properly dressed every single day. And the colder it gets the more layers I have to force myself into.

Since I’ve endured a few winters now, I have had a good bit of practice. It is becoming more of a habit. I no longer worry about how fat or uncomfortable I look under all those layers. It’s much more important to me these days to stay warm. Yes, I still sometimes feel strange having to wearing so much clothing at once, especially when people start asking about it. But I try not to allow it to bother me.

Despite all the strange looks and critical comments, we must remember that we shouldn’t worry about what others might think. We must do what we must do to survive another day with a chronic illness, and that is all that matters. Other people might make us feel like freaks of nature, but we just need to keep focusing on how strong we truly are. We keep fighting for daily life even though we face such tough challenges. Keep pressing on, my fellow fibro warriors. We shall prevail!

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?

Excuse Me, But Your Fibro Is Showing

A Fibro Rash (my left forearm)

Fibromyalgia is considered an invisible disease. After months and months AND months of seemingly endless tests, I learned firsthand that fibro is a ninja-like invader, leaving little proof of its merciless hold on our bodies. At times we question our sanity. Am I really just imagining this? Could it be all in my mind? If it’s actually there, then why can’t anyone find anything wrong with me?

And unfortunately, not only must we deal with self-doubt, but we must face the unbelief of others, too. “Oh, you look ok to me.” “But you were perfectly fine a month ago…” “It CAN’T be as bad as you claim.” “Well, maybe you need to only try a little harder.” “You just need more motivation and exercise!” “Aren’t you feeling any better yet?” The barbs and the well-meant comments go on and on…

One night, about 3 years ago, something happened that changed my life forever: my first fibro rash. For those of you that have never experienced a fibro rash, they are pesky things! They pop up out of nowhere with little or no warning. One minute, you are annoyed by a little itch here and a tiny itch there. Then, suddenly, it is as though an army of chicken-pox, poison-ivy welts/patches are fighting to consume every inch of your skin! The more you scratch the more it burns and itches.

Since fibromyalgia hits people differently, I’m sure fibro rashes vary and some fibro sufferers are lucky enough to skip this symptom. But for me, fibro rashes are a real and pretty big part of my life right now. My skin turns beet red, as if I had a severe sunburn. I get painful, little bumps under my skin. And there isn’t a single inch of my body that has not experienced a fibro rash at one time or another. Even the inside of my ears and nose, and my eyeballs have gotten red and irritated at times!

As I was lying in bed that night, trying to sleep in spite of the throbbing and aching that was consuming my body, I noticed my pain lessened. Thinking I was finally going to get some rest, I got more comfortable and closed my eyes. Just as I was drifting off to sleep, my right leg became really itchy. Since I had just shaved before I went to bed, I assumed that I was simply getting a little skin irritation from that. So I turned on my light, reached for some lotion, and slathered on some glorious cooling relief. Immediately, the burning faded. Consequently, I turned off the light again and curled back up in bed.

Yet, sometime after I went to sleep, I was rudely awakened by a severe itching and burning under my jaw and up onto my cheeks. Being only partially awake, I began scratching like crazy, longing for relief. However, as my fingernails dug into my skin harder and harder, the horrible sensation grew and grew! My mind started racing: ok, I didn’t shave THERE! What’s going on?

Then, feeling some strange bumps under my skin, I jolted awake and raced to the bathroom. As soon as I turned on the light and saw my reflection in the bathroom mirror, my heart skipped a beat! My face was so red and irritated—more so than I’d ever seen. I was shocked beyond words and couldn’t figure out what was causing this horrible rash. In desperation, I reached inside the medicine cabinet for Benadryl and took a dose. And unable to wait to see if it would help, I slathered my face with calamine lotion. Within a half hour, the itching and burning had stop. The rash completely disappeared. In the end, part of me was left wondering if maybe I had imagined or dreamed it all!

However, a few days later, I had invited my grandma over for dinner. I was busily at work in the kitchen, putting the final touches on our meal and setting the table. My grandma came into the room to ask if I needed her help when she suddenly exclaimed, “What is wrong with your arm? Did you burn yourself?”

Absentmindedly, I looked down at my arm, and again, my heart skipped a beat again. The rash was back but this time on my arm! Again, I took another dose of Benadryl and applied some lotion…and again, the rash vanished nearly as quickly and mysteriously as it had appeared.

Since then I have developed a fibro rash many more times than I could ever count. Sometimes it’s a small patch and is gone within minutes. Other times, it’s covering most of my body and lasts a good part of the day/night. After several failed attempts to show one of these rashes to my doctors (they always seem to vanish just before or while I’m in the waiting room), so I finally decided to take photos and come prepared. My rheumatologist immediately identified it as fibro rash and explained that without figuring out what was triggering my flares, there wasn’t much more I can do than what I was already doing.

Although I was discouraged that I was indefinitely stuck with this terrible symptom, I was relieved to know that nothing worse was happening to me. Yes, having your skin suddenly change color like a grotesque chameleon can be embarrassing and unnerving. Yes, I’ve had to work on my self-control to avoid scratching as much as is humanly possible (since scratching only compounds the problem). And yes, I’d be immensely happy to NEVER experience another fibro rash again. Still, part of me can’t help but smile a little because every now and then my fibromyalgia gets caught red handed—and red faced and red armed—and becomes visible for all the skeptics to see!