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.