Question of the Week: Need to Get Away?

Image by Martin_Heigan via FlickrI've been a very bad blogger.

On second thought, maybe it's not so much that I'm a bad blogger but a bad planner.

No, upon reflection, I don't think that's quite right either.

Here is the thing: I have been completely overwhelmed and stressed out for the last two weeks. I'm just going through a phase where if anything can go wrong, it will. Just because I'm sick chick who stays at home and does much of her living from her couch doesn't mean there is less stress in my life.

To add insult to injury, fibromyalgia lessens my ability to manage stress. I've come to realize that this is just part and parcel of the fibro-fog that plagues most people living with fibromyalgia. Which means that instead of facing stress cool, calm and collected, stress turns me into a discombobulated mess.

It is not a pretty sight.

I know a healthy me would have handled the last fortnight more adeptly. First she would have taken some time to do some planning. That would have translated into either taking the time to write several posts in advance or deciding to take a week off from blogging and informing her readers of that decision. With her blogging tasks squared away, she would have then turned her attention to the problems at hand and created a specific time and place to deal with them.

Under the influence of fibromyalgia, I found myself distracted, disorganized and disintegrating under the pressure of stressful circumstances. Despite my best efforts to calm down and get focused, it seemed like every new detail that unfolded only served to get me all riled up again. Along the way I marveled at how fibromyalgia had changed me from skilled at dealing with stress to a totally crumbling cookie.

So when my feared day of reconciliation arrived last Wednesday and my dread melted into relief, I found myself needing to just escaped for a couple days to rest, relaxed and recharge because I was completely and totally wiped out. Like a computer running on battery power, I had gotten to the point where there was no power left and I had no choice but to shut down.

In short, I just needed to get away.

Has this ever happened to you too? Have there been times when life and chronic illness are just too much and you just need to get away?

Let me know when leaving a comment here or heading over to join the conversation at the Oh My Aches and Pains Facebook page.

Question of the Week: Do You Watch the Evening News?

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I know this might seem like a strange question.

Let me start by saying that my answer to this question is "No." and fibromyalgia is the reason.

Like many others, I experience cognitive symptoms related to fibromyalgia. One such symptom is finding myself getting overstimulated by the sights, sounds and events in my environment. Examples are:

• the stereo or TV being turned up too loud
• the plethora of merchandise on the grocery store shelves
• groups of people together in one place
• traffic on the streets during rush hour
• bright sunlight
• police and fire department sirens and lights
• loud, unexpected noises, like a car backfiring

When faced with these situations, it's like my brain gets overwhelmed by all the input and loses some of it's ability to filter things out, prioritize what is important, assess the danger level and an appropriate response and determine what needs to be the focus of my attention. Instead of ignoring some of the stimuli, my brain tries to focus on everything and becomes overloaded in the process.

Unfortunately, the evening news on the TV also falls into this category.

Now I'm not sure exact how many stories get covered in the average newscast, but it is definitely enough to get my brain overwhelmed and overloaded. Plus the emphasis on reporting so much bad news, much of it violent and disturbing in nature, has the effect of revving me up when I should be trying to relax and wind down from the day.

So a few years back, my hubby and I cut the news out of our TV watching.

Sadly, the tragic events in Arizona over the weekend reminded me once again why skipping the news is a good idea for me. Watching an early broadcast on Sunday evening, with so many reporters covering every tragic aspect of the story, reminded me how intense and brain saturating the news can be. The repetition of the story, over and over again, just made my brain go haywire.

My heart goes out to everyone involved. However, for my sake and health, I don't need to know every little detail and get caught up in the news media tornado generated in response to these kind of events. The bottom line: it is all just too much for my brain to handle.

Have you stopped watching the TV news too? I invite you to share your experiences with brain over-stimulation and sensory overload related to your chronic illness. Feel free to leave your comments here or over at the Oh My Aches and Pains Facebook page.

"Chronic illness is ___________ ."

Let's play a game! Do you remember Mad Libs from when you were a kid?

Mad Libs

For those of you who have never played, let me explain this "world's greatest word game." You start with a page of text with words missing. Without seeing the paragraph on the page, you provide random verbs, nouns and adjectives so your partner can fill in the blanks. When the text is read back with your random contributions, the results can be hilarious. Or not.

Mad Libs, Fibro-style

Jump to one of my bad fibro-fog days and trying to communicate is like playing a wacky and warped version of Mad Libs.

My favorite nouns are (in order of preference): thing, whatchamacallit, thingamajig and whoosie-whatsit. When I'm not trying to remember what things are called, I specialize in calling objects by the wrong name. For example, I've called the vacuum cleaner a computer and asked my husband to put a trash can in the bag (that one should have been the other way around.)

For verbs, I seem to use can a lot, like 'Can you get me my thing?' and 'Can you please just help me?'

My favorite adjective, you ask? I think that might just be damn.

Honorable Mentions

There may be a few other games that describe aspects of my life with chronic illness. The ones that come to mind are:

Aggravation, Boggle, Chill Out, Clue, Don't Break the Ice, Hungry, Hungry Hippos, In a Pickle, Kismet, The Game of Life, Sleuth, Sorry!, Trouble and Win, Lose or Draw.

So Let's Play...

Chronic illness is ________ .

Here are my choices:

1. all fun and things
2. a big pain in the damn whatchamacallit
3. a thingamajig you can help me with

Dear Reader, please vote for your favorite or suggest your own by leaving me a comment. I'll tally the votes and announce the phrase with the most votes on Saturday October 9th.

I knew that...

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Robert read my post from yesterday, Funny Moments with Fibromyalgia. When he was done, I asked him, "Did I get the interpretation of your favorite saying "Then one day I lost the cat.' right?" Apparently I did not!

"It from a George Carlin routine," he replied. "You know, the one about A Place for My Stuff!"

Oh yeah, I knew that and totally forgot. So I did a little research and found both the transcript and a YouTube clip of this routine. In doing so I found that Robert didn't quite get it right either. He misquoted the album featuring this bit: it is actually Playin' with Your Head.

Watching the clip reminded me that I actually saw George Carlin perform in Las Vegas on my girls-only bachelorette weekend before my wedding. I remember listening to his album A Place for My Stuff!" as a teenager and jumped at the opportunity to see him live. Now that was quite a long time ago. To be honest, the clip almost looks like the performance I saw at Bally's Hotel and Casino.

Hmm, maybe I forgot these things because I am getting old!

Anyway, I enjoyed getting reacquainted with George and laughing at his description of trying to find lost things. I admit it totally sounds like me. (Did George suffer from brain fog too?!?) Perhaps it will remind you of yourself too...

Losing Things

Where do these things go when they're lost? There are some things, I
don't even care if I ever get 'em back, I just wanna' know where the f*** they
went! You know what I mean? And let me say, losing things is one of those
those events in life that's even worse when you're a kid. It's even worse,
because people get on you for it. It's double jeopardy, not only is the item
gone, but you're catching sh** from up here!

[Improvised conversation with a mother]

'You what?!?'
'I lost my yo-yo.'
'Well, where did you have it last?'
'HEY...if I knew that, I would still have my yo-yo!'
'Well, it must be somewhere.'
'Right!'
'Well, it just didn't get up and walk away!'

That one always got to me...it just didn't get up and walk away. One
time, I lost the cat...it just got up, and walked away! And she actually
started to say, 'Well, it just didn't get up and...cough, ahem, ahem, um, um.'
'Hey ma, I think you figured this one out.'

Funny Moments with Fibromyalgia

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Yes, there are laugh-out-loud moments in my life with fibromyalgia. Granted, many of those moments take on the flavor of a Three Stooges episode. While living with fibromyalgia isn't inherently funny, I think life really isn't worth living if you can't laugh at your situation or yourself every once in a while.

IT'S FUNNY NOW

One calamity I can look back on with a smile definitely wasn't funny when it happened. Back in 2007 I was just getting started making my life more fibro-friendly. I purchased a folding shower bench from an online retailer, not realizing that it was made from materials that would rust over time when exposed to water.

So can you guess what happened?

Yup, it broke one day while I was sitting on it taking a shower. I squealed like a piglet when it happened, calling for Robert to come into the bathroom and rescue me. Fortunately I was not hurt in the process, although the tumble did flare me up for a few days.

I learned my lesson though: buy home health care equipment from a medical supply company.

ONLY FUNNY UNTIL SOMEONE GETS HURT

Then there was the time in 2008 when I took a step down from the bonus room behind the garage to the ground, twisted my ankle and broke my foot. Robert saw the whole thing: one minute I was standing up, the next minute I was flat on the ground writhing in pain.

The really funny part was the argument that followed. My husband hates taking me to the Emergency Room and he tried to convince me I didn't need to go. After an hour of icing my foot and the pain only getting worse, I told him I had to go. He grumbled the whole way there, mumbling, "They better find something wrong with you." At one point, I thought I'd have hell to pay on the ride home when the doctor came in and said I only sprained my ankle. Turns out, the doctor was wrong! The radiologist reviewed the x-ray and found a foot fracture that the doctor had missed.

So picture me hobbling out of the ER using a walker, the lower half of my leg, ankle and foot in a non-weight bearing splint, telling my hubby, "I told you so!"

LAUGHING AT MY FOIBLES

His dislike of the ER aside, my hubby truly is a trooper when it come to all the crazy stuff that happens when I get extremely fatigued and the fibro-fog rolls in. He puts up with me asking him the same question over and over again when my short-term memory is on the fritz. He helps with my frantic searches for items I have absent-mindedly misplaced in the weirdest of places, like my keys in the refrigerator. Or I sometimes think I have lost something and then get all worked up about it when in reality the item is literally right in front of me.

When ever I lose something, Robert jokes with me by saying, "Then one day I lost the cat."*** (His joke is a reference to our house cats and how they are never truly lost, just hiding.)

FUNNY HOW SWEET IT IS

One thing in particular always brings a smile to my face and a laugh to my heart. On days when I am really tired and really struggling, I have a habit of putting my pajamas or shirt on inside out and not noticing. In response, Robert makes the most adorable sad, pouty face and says, "Oh, are you not feeling well today?" At first, I would look quizzically at him and respond, "Why do you say that?" He then would point out my wardrobe malfunction and we would both get a good chuckle out of it.

Now I know this is my cue to adjust my clothes right side out, pause and laugh at myself.


ADDENDUM:

***Oops! I didn't get that quite right! See my post I knew that.. for the real scoop and more to laugh about.

Bits and Pieces

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Today I share a smattering of the thoughts that are running through my brain. Although let's be honest; bits and pieces probably describes the functional capacity of my brain right now! I'll know for sure when I get the results of the SPECT brain scan I'll be getting later today. I've already located some articles about how the brain of a person with fibromyalgia is different on SPECT than the brain of a normal person.

But I digress...

BITS and PIECES

Getting ready to leave the house begins 24 hours before the actual leaving. It is quite a production. For starters, I contend with figuring out 24 hours in advance if I can keep an appointment so I can always cancel 24 hours in advance and avoid a "missed appointment" fee. So you can imagine how miffed I was when I got 4 hours notice on Monday that my appointment later that day was canceled because my doctor called in sick.


My friend is upset with me because I decided to keep honoring the original No Phone Zone pledge I signed back in January 2010. She wants to start calling me again at midnight from her car on her way home from work. I worry about her driving distracted because of the other distracted, drowsy and drunk drivers she might encounter at that hour on her way home. I am keeping my pledge because I care about her, but I don't think she sees it that way. I want to figure out another time we can talk, but I know that is complicated by my sleep disorders. My skewed sleep schedule places me at 'just getting up' around the time she is 'just getting to work.'


Speak of cell phones, I just realized the my blog post title from yesterday was grammatically incorrect. *sigh* I changed it, but it has already gone out into the universe displaying my fibro-fog influenced writing style. You'd think I could at LEAST get the title correct...


I experienced a huge malware/spyware infection around the time I hosted the Patients for a Moment blog carnival back in February from which I am STILL recovering. I cannot believe how difficult it is to find solutions to my computer problems. I literally spent hours and hours surfing tech forums, posting questions and waiting for answers, and taking 'leaps of faith' downloading fix it programs and trying them out. I believe that it is only through my persistence that I finally found solutions to my problems.


Finally, I use a lot of Google products: Blogger, Feedburner and Chrome to name a few. And lately I have been having a lot of problems with Blogger, Feedburner and Chrome. So I go to the HELP forums, search for answers and, finding none, post questions. Why is it I never get a response? Which leads to the bigger question: How can a company as big as Google not have better customer service? So I put my question out on Twitter to @Google to see if I get an answer.

Beuller?


Let's see what my blog post tomorrow looks like after they inject me with technetium-99m this afternoon--SPECT is a nuclear medicine scan by the way. Maybe I'll glow-in-the-dark afterward. Wish me luck...

Fibromyalgia Scientist Case Study: Grocery Shopping

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Over the past few days I've been talking about how I have embraced becoming a fibromyalgia scientist (see How to Become a Fibromyalgia Scientist and  Embracing My Life as a "Fibromyalgia Scientist").  Then I went grocery shopping today with my husband and realized that despite my best efforts to make this task fibro-friendly, nothing short of a significant recovery would make this 100% easier.  Like taking a shower, grocery shopping is a workout.


The first thing I grab when I walk through the sliding glass doors is the shopping scooter the grocery store provides.  This is by far the pivotal strategy I employ that makes grocery shopping more manageable.  At this point, I make it a point to exclusively patronize the stores that I know provide shopping scooters.  I used to bring my rolling walker, but quickly realized that it wasn't the right tool for the job.  How did I come to this realization?  By reviewing my symptom levels for the next several day following a trip to the grocery store using an activity log.  I found that when I used the shopping scooter, there was definitely less "payback", i.e. increased symptoms and increased need for rest.


Not only did I need to acknowledge that I needed to use a mobility aid to grocery shop, I also had to adjust my mindset about using one---and so did my husband.  The most difficult part of having an invisible chronic illness is that you don't look sick and sometimes people give you funny looks when you pull into a disabled parking space, using a mobility aid or don't give up your seat for someone else.  What helped me get over this mental hang-up was seeing what a positive difference using these resources made in helping me better managing my symptoms.  Once I was sold on their utility, and my husband could see the difference as well, we started caring less and less about how other people judged me when I used helpers like the shopping scooter.  


My other grocery shopping strategies include:

1. Always bringing someone along with me when I go grocery shopping.  I ask them to help by loading the groceries onto the conveyor belt at the checkout and into the car.  And if I get too tired, I can ask them to drive home. 
   
2. Beating fibro-fog by always shopping with a list and having my shopping companion double-check to make sure I put everything on the list into the cart.
3. Going shopping during off-peak times, when the store is less crowded.
4. Breaking the task of putting the groceries away into steps.  First, I focus on getting the perishables into the refrigerator and leave the dry goods in the grocery bags.  Then I rest. When I am rested, I return to the kitchen and put away the dry goods.

Grocery shopping is a task that requires planning and extra rest before and afterward.  It is definitely reserved for days when I have no other plans that require me to leave the house.  As a fibromyalgia scientist, I've succeeded making it about 50% more fibro-friendly, which is significant because every little change I can make helps me manage my life with chronic illness better.

How do you cope with everyday tasks when living with chronic illness?  Leave me a comment and share your strategies.   

A Tribute to Brain Fog

Image by laurenz via Flickr

Here is a gem of a video courtesy of my friend Sharon from the CFIDS & Fibromyalgia Self Help group. Apparently we are not the only ones who dealing with brain fog!

Tomorrow's Forecast: Fog On Coolidge Avenue?

Image by r0b1 via Flickr

Today's post will be brief as I am stuck in the fog ... fibro-fog that is. What is fibro-fog? This term refers to the cognitive impairments that are part of living with fibromyalgia and include: short-term memory lapses, poor concentration, impaired ability to think and difficulty remembering and speaking common words.

According to the Arthritis Today website, research is shedding light on what causes fibro-fog. One study using MRI showed that people with fibromyalgia occasionally do not get enough oxygen to certain parts of their brains. Additionally, living with chronic pain causes changes to the brain: in fact, it may result in the brain shrinking up to 11% according to researchers at Northwestern University. While discovering the source of fibro-fog, researchers have also ruled out problems sleeping and depression as causes of fibro-fog.

In my case, I recently learned I have a congenital heart malformation called an atrial septal defect that is allowing small amounts of deoxygentated blood to be pumped back out into my body. Atrial septal defect can be associated with migraines, headaches and a slightly increased risk of stroke. It can also contribute to symptoms of fatigue. I'm not sure yet what this diagnosis means for me or if it need to be corrected, but I am already taking a baby aspirin each day to decrease my stroke risk.

I am fortunate that fibro-fog affects me only once in a while. To combat its effects, tomorrow I am going to concentrate on extra rest and reducing my mental activities. Here's hoping that the forecast changes to sunshine soon.

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