In the words of Lili Von Shtupp, "I'm tired!"

Let's talk about fatigue.

Not tiredness, not sleepiness, not exhaustion.  Fatigue is often my most problematic symptom.  I don't hurt badly all of the time and minor pain is something I can ignore and work around.  Fatigue eats away at me; it affects my mood, my work, my schedule, and my pain.  I ly endless font of energy.  I barely understood the concept of being tired and certainly didn't understand fatigue.  I was an insomniac and a morning person rolled into one.  People declared me "the most energetic person I've ever met" on many occasions.  Even now people are amazed by my energy on my good days.  I think that makes the bad days feel even worse.  I know what I've been accustomed to and I miss it. 

Fatigue is difficult to describe to those who don't experience it.  It builds up over time and is often unshakeable.  Today has been a Fatigue Day for me.  I slept from about 10:30pm to 9:20am.  That's almost 11 hours of sleep and I still struggled to drag myself out of bed.  I needed to work around the house but couldn't do it.  My body feels weighted down and the very act of expanding my lungs to breathe takes more energy than usual.  My eyelids are heavy and my eyes feel gritty.  I wanted to take a nap but forced myself to stay awake.  That's not always something I can do.  There are times when my body physically shuts me down.  I get to the point that I'm not only physically exhausted but so drowsy that I can't function.  If I try to push through at that point I feel sick to my stomach and close to tears.  If I don't lay down and sleep I will collapse.  My husband and kids are used to it by now and they know not to question it when I tell them I have to take a nap. 

So, what can I do about it?  Unfortunately, not a whole lot.  Some factors can be controlled but others can't.  Summer heat sucks away energy in non-sufferers so you can imagine what it does to those of us with chronic fatigue.  Working out or physical labor can create days of increased fatigue.  Lack of sleep is an obvious factor and it is somewhat controllable.  My rheumatologist told me at the very beginning of my fibro journey that some doctors speculate that fibro is caused by sleep issues.  I find it hard to believe that that is the entire cause but sleep issues definitely play a factor.  Inadequate deep sleep prevents cells from repairing and regenerating, which leads to pain.  My rheumy stressed the importance of good sleep habits.  He told me that I require a minimum of 7 hours of sleep each night.  I can tell you that my pain improved vastly when I started an earlier bedtime.  And my fatigue is more manageable with a regular sleep schedule, too.  I also have to make sure to balance my schedule and allow a day of rest each week.  Today is my day for this week.  I spent quality time on the couch with my boys and in front of my computer.  The Spoons I saved today will be useful tomorrow.

The only other thing I've found that helps is OrganoGold Coffee.  I don't sell the stuff, so I promise I 

am not trying to sell anything here. I have self-tested the product and it is my savior!  I usually make a smoothie with the Latte, almond milk, chocolate syrup, a banana, and a handful of strawberries.  It's a perfect start to the day.  OG has a fraction of the caffeine of normal coffee, which I can't drink; I end up bouncing around like a pinball for 45 minutes and then crash with a migraine for the rest of the day.  The OG is full of B vitamins and stuff that puts me in a great mood and gives me the energy to get through a whole day.  People around me can tell when I haven't had my OG.  My smoothie is "morning person" in a cup.  

*Yawn* Well, I've used up my blog-writing energy and have to get the boys home from karate and home for dinner, which my awesome father-in-law is cooking tonight.  Gentle hugs!

I had to pop back on to add something.  People with chronic fatigue are NOT lazy.  That can't be forgotten.  It's not that we're shirking our duties or avoiding work.  We sometimes CAN'T do something, even if it's something we really want to do.  Our bodies often dictate what we do or don't have the Spoons for.  If we push too hard we only make the fatigue and other symptoms worse. I am a very hard worker but I also have to know my limits.

Twinkle, twinkle random pain...

I want to talk about the fibro symptom that makes me laugh, despite the fact that it is painful.  I don't know if it has a real name or not but I call it "Twinkle Pain."  I have created the visual below to help you understand.

Twinkle, twinkle random twinge,

Like a troll bent on revenge.

Stabbing here and spasms there,

Twinkle pain is everywhere.

     The gist of it is that I periodically have pains that jump around.   If you think of my body like a christmas tree with a strand of lights wrapped around it, the pains pop up and die away much like the twinkling of a strand of colored lights.  Sometimes the pain flashes quickly and sometimes it pulses slowly.  It can be a sharp pain, a dull ache, a twinge, or a muscle spasm.  Sometimes I twinkle for only a few minutes and other times it is on and off for a couple of hours, or even all day.  I can be having a great Lavender day (remember that lavender, mulberry, amethyst scale?) when it suddenly seems like someone switched on the twinkle lights. 

    So what about this pain makes me laugh, you may be wondering?  Well, it is the total randomness of it--I never know what's going to hurt.  I've had pain in places that I didn't even know I had or thought could hurt.  And sometimes the pain is in a place that I can't really mention to an outsider.  The pain can hit me unawares and I utter a cry or an "ow" and then whomever I am with asks if I am okay.  Not everyone would understand, "Oh, it's just a sudden, stabbing pain in my right buttock" or "There's a painful twitch near my left nipple."  It's the kind of thing that makes having a good sense of humor essential.  My former staff would laugh along with me some days; they would see me limping down the hall with leg pain one time and later in the day find me hunched over with upper back pain.  When the pain is quick I can have a throb in my left big toe, a stab in my lower back, a twitch in my right eye, and aching in my pelvis all within 5 minutes.  For the most part it's annoying more than anything.  Not that the pain itself is anything to laugh at--feeling like you're being assaulted by a horde of gremlins armed with spears and arrows is certainly no picnic.

      From speaking with friends with other chronic pain conditions, I get the impression that Twinkle Pain is fibro-specific.  A good friend of mine who has MS tells me that her pain is almost always in the same area and is fairly predictable.  One of the indicators of a fibro diagnosis is pain in all 4 quadrants of the body.  It just doesn't always happen at the same time.  I have a few areas that always hurt and areas that flare regularly.  It's the out-of-nowhere pains that surprise me and can be tougher to deal with.  I mean, how do you stretch out toe muscles when your feet feel all crampy and full of knotted muscle?  And you can't exactly massage your butt while walking through Target during a Twinkle Pain attack.  But like I said, if you can keep a sense of humor it's a little easier to cope with the pain. 

The Skating Rink

I took my younger son to a birthday party at a skating rink last weekend.  The skating rink is one of those places that I thought was awesome as a kid but see much more clearly as an adult.  Now, this was a different skating rink than the one I grew up near but I speculate that things are pretty much the same across the industry.  I used to be dazzled by the dim lighting with flashes of color and the loud music playing.  The skaters whizzing past and the blips and bleeps of arcade games created a buzz of pulsating energy.  And then there was the actual skating--the exhilaration of flying along a slick surface while wearing wheeled shoes, the wind blowing my hair back as I careened along, the thrill of stopping by flinging myself into the nearest wall.  Loud, dark, and a little dangerous; it was great!

These days I see the whole adventure in a totally different light.  From the time we stepped out of the car and I could hear the ribcage-rattling thump of pop music, I started to have misgivings.  If the music was audible in the parking lot, what would it be like inside?!  We entered the rink and the darkness hit.  There were flashing neon lights, multitudes of things glowing under the black lights, and the music pulsed throughout my body.  I became disoriented by light and sound, and further overloaded by the whizzing of children going past on skates, narrowly missing our toes, and the zig-zagging of children running through the skaters.  We sought out the birthday party among the craziness.  And the smell--sweat, greasy food, and feet.  I won't even mention the state of the restroom.  Just imagine a setting in which you fear the possibility of contracting a disease.  Perhaps it is a sign of being in my mid-thirties, but I found myself noticing the extreme youth of the employees--not one of them looked over 16!  Ah, a den of chaos chaperoned by hormone-addled teens with only a cursory understanding of responsibility.  What could possibly go wrong there?

We found our group and my son got set up with skates and a pvc contraption designed to help new skaters stay upright whilst hurtling their wheeled bodies along the overwaxed rink floor.  I had chosen to remain on the bench and watch my little man slip and trip around the rink.  After a bit, though, the dreaded question came--"Mommy, will you come skate and help me?"  Drat!  No way to turn that down.  So I paid the insane rental fee for a pair of inline skates and took to the floor.  The thrill of the wind in my hair was still there!  I happily zoomed around the rink for about 30 minutes without either falling or slamming my tender body into a wall.  I was almost able to ignore the dingy decor and the questionable cleanliness as I flew past those carpeted walls.

I'm not going to say that I wasn't sore the next day but the minor pain was well worth it.  It was one of those times when I was able to push myself a bit to be able to participate with my child.  That is a big deal for a fibroMIGHT.  Some days we just can't do what we'd like to be able to do with our kids.  Sitting on the floor to do Legos is almost always a no for me.  Running around outside is another.  So getting to skate with my boy was a real treat.  Even though I had to face the sensory torture of dim lighting, loud noise, and the sensation of being inside of a beehive.  Yep.  The skating rink was definitely better through the eyes of childhood. 

Fibromyalgia Awareness Day!

Greetings and Happy Fibromyalgia Awareness Day!

May 12th is a day dedicated to UN-hiding this hidden illness.  It's a day to help make people aware of what fibromights go through to develop understanding and tolerance.  It's time to get rid of the idea that fibromyalgia is fake or that those who suffer are lazy/should just get over it/are weaklings/etc.  It's a day to celebrate those who beat down fibro in order to live life and enjoy it!  It's a day to wear purple and butterflies!

I was researching fibro ribbons and discovered that there is often a butterfly incorporated into the purple fibro/chronic pain ribbon.  That made me curious so I dug further.  The explanation I found is that it represents the sensory issues that fibromights deal with--how even the softest touch can be painful. I learned years ago that you are not supposed to touch a butterfly's wings because it would be the equivalent of someone hitting you with a hammer.  Sound familiar?  Yep.  And it's not just the sensation of touch that fibromights can be over-sensitive to.  Sound, sight, taste, and smell can also cause problems.  I know I often feel over-stimulated when there is too much noise or around strong fragrances.

While reading that article, though, I saw one comment that drew a connection to the butterfly's metamorphosis from caterpillar as the death of a fibromight's prior life and start of the new fibro life. I'm not sure how I feel about that.  I know I have often grieved the loss of my pain-free life but I don't feel like I've gone from caterpillar to butterfly--moreso the reverse.  I feel like I've lost my ability to fly and now have to inch along.  I won't dwell on that, though, because it doesn't help me.

I also learned about Lilac, Mulberry, Amethyst and The Fibromyalgia Crusade.  There are lots of pain scales out there but I fell in love with this one.  The darker the shade of reference, the more pain.  So lilac is a light pain day, mulberry is moderate, and amethyst is bad.  And they also have LMA for Leave Me Alone, for those days when that's what we want.  I'm going to let those around me know about this scale.  I like it better than giving numbers 1-10 because it seems more straightforward to me.  Yesterday was a Mulberry day.   Hoping for Lilac today!

I also want to tell you all that I found out from my husband that one of our coworkers thinks fibro is BS.  When he told me I saw red.  I was livid yesterday morning over it.  I couldn't look at said person, much less speak to him.  It was late afternoon before I could trust myself to be civil.   I want to confront him.  I want to hear him explain.  I want him to understand.  And I'm mad that his opinion made me nervous about asking for help from the other guys because I was hurting.  That made me feel ashamed and fibromights should NEVER have to feel that way.  The pain I feel is REAL.  The dizzy spells and sensory overload and chronic fatigue are REAL.  It's not in my head.  I've had 2 doctors confirm my diagnosis.  I shouldn't feel like I have to defend my illness but that kind of attitude makes me feel like I do.  One person's opinion doesn't change my reality.

So I push forward and do what I can.  I refuse to have anyone think that I don't do my share or hold my own at work.  I will continue to share my experiences and work to bring fibro out of the shadows.  And I don't want pity!  I don't share my story to have people feel bad for me.  I crave understanding and tolerance.  An offer of help is appreciated, but not when offered with pity or condescension.  I am a fibroMIGHT and I will find my wings!

Spread the word today and help people see what fibromyalgia is all about!  Offer a hand to someone you know who suffers.  Or a virtual hug.  I challenge you to post either a purple ribbon or a purple butterfly to the Facebook page of a fibromight you know (as long as they're open about it--don't out anyone who isn't ready, please!).  You are welcome to use either of the images below that I found.

The Closet of a FibroMIGHT

I did something different for today--I made a video!  Step into my closet and see how complicated getting dressed with fibro can be!

A Salute to Heroes!

You know who my heroes are?  The people I see walking with canes or in wheelchairs who look otherwise healthy--those with hidden illnesses who are struggling but out there.  They haven't given up and they're not letting their illness keep them from participating in life.  Now, we all have days when we have to stop and regroup at home; when the pain is too much we have to decide if pushing is going to make things worse.  And that's okay.

I am a very high-functioning fibromight most of the time but even I have days when staying in bed is the best option.  And I'm no stranger to the motorized scooter.  Admitting that you can't walk through Target on your own and asking for access to a scooter is a hard thing to do.  It can be embarrassing, too, if the employee gives you "the look".  Then you have to deal with the looks and/or comments from other customers.  They don't get it.  Riding on those scooters is awful.  They are so slow and you sit there knowing that if you could walk you could go faster.  You can't reach anything from seated position, either, so you still have to struggle in and out of the seat to get what you need.  No one would go through all of that without really needing to.

I want to tell you about a couple of heroes I've seen recently.  The first is a woman I met at my boys' elementary school Bingo Night.  She was my age (mid-30s) but walking with a cane--a pink, sparkly cane.  I complimented her awesome cane and we got to chatting.  She told me that she has MS and fibro and her attitude is "if you have to use a cane it should be an awesome one!" I love that!  Between the cane and how stylish she was head-to-toe I was inspired.  She must go through so much and yet she is rocking it!

The other hero is one I saw at Disney World.  She was also young but riding a scooter.  If riding a scooter through a store is miserable, can you imagine maneuvering through Spring Break crowds at Disney World?!  She was calm, cool, and collected.  And the whole family was making it work.  I'm sure some people saw laziness or deception but I saw inspiration and dedication.  Those crowds were no joke.  It was hard enough to get through them on foot and I saw crowds refuse to budge for disabled or scooter-bound people over and over again.  

When I can I try to say something to my heroes--just a little word here or there to show that I understand.  People with hidden illnesses hear way too many negative things from outsiders so I think it's our duty to help lift each other up.  I know many who suffer have gotten to the point of further hiding their struggles because people can be so crappy.  I understand.  It's no fun to open yourself up for hurt.  I'm hoping, though, that by being transparent I can not only help others who hurt but open the eyes of those who don't understand.  Maybe if enough people can raise awareness of chronic pain, fatigue, and other issues we can get some real results--more treatments, breakthroughs in what causes it, or even just pull the blinders off of people and quit the shaming.  It's hard enough to suffer.  Suffering in silence and fear is worse.  I have decided to be open and honest about my issues with anyone and everyone.  If you want to know I will tell you.  If that honesty helps just one person I consider it worthwhile.

Perhaps we need a Hidden Illness Awareness Event.  I first thought of a 5K but really?  I can walk that but not all of us can.  How about a Hobble Wobble or a Scooter Rally?  :)  We could even have an alternate transportation relay; we could have canes, scooters, etc that participants would have to use for each leg.  I've thought about this for years--maybe one day I can put it in action.

Gentle hugs and may your day be FibroMIGHTY!

Oil...can...

So you know that scene in "The Wizard of Oz" when Dorothy and the Scarecrow find the Tin Man and he's rusted solid, squeaking out the phrase "oil can"?  Yeah, that's how I feel today.  My spine feels like a solid rod instead of individual vertebrae.  My legs feel weak and knotted.  Even my shoulders and arms are stiff and sore.  Why, you might ask?  The weather.  Yep, fibro has made me a human barometer and that, my friends, is a job I never applied for.  It is a rainy, nasty day.  This whole week is supposed to be more of the same, so I know this is how I will feel all week.  I can help my hormones and I can get sleep but I can't change the weather.

I know some of you can relate and others may be outsiders who are trying to understand what a loved one is going through.  I'm not relating my pain to garner sympathy, but to help others understand or know that they aren't alone. My shoulder and upper arm muscles are so sore that washing my hands makes them hurt.  Crouching down is fine but getting back up takes 3 slow stages and a lot of pain. Don't even look at my back too hard because my skin is so sensitive right now.  Driving is torture because it hurts to turn my neck, holding my arms up to the steering wheel hurts, my calf hurts when working the pedal, my lower back aches from the pressure of pushing pedals and twisting to drive, and the places where my legs meet my pelvis feel like they're being pierced with shards of glass.  I also find myself gritting my teeth so my jaw hurts a bit.  And being in this kind of pain (I rate it a 6) is exhausting.

Unfortunately, being tired and in pain causes Fibro Fury.  The prickly form of irritation that makes me snap at my husband and yell at my kids.  And that leads to guilt because I know it's me and not them--well, not entirely, anyway.  ;)  Ugh.  I want to calm down but every little thing seems huge in the moment.  I'm hoping that wine and some extra magnesium will give me some relief for tomorrow.   I try to keep my smile on but it's hard.  Some days are just like this--full flare fibro.  Coping is tough but I know my triggers and I've learned some tricks to help make it through.  Thank God for my wonderful, understanding, and supportive husband who knows to ignore my outburst and give me kisses and gentle hugs without any back patting.

Gentle hugs, my fibro friends!