Fibromyalgia for Dummies

Right on the heels of my last post, when I was all super-Zen and warm-fuzzy about decluttering my life, I was smacked down by The Fibro Flare From Hades.  Oh, how the mighty have fallen (I just totally made up that phrase, but I'm thinking it's going to catch on). 

I hurt, guys.  I hurt real bad (said in my Napoleon Dynamite voice...  Does anyone get that reference?), so I've been a little on edge this week.  And last week.  I'm grouchy.  Actually, there is a more colorful word than grouchy to describe me, but I won't say it.  You can toss about your own proper nouns and adjectives as you see fit.

And did I say I hurt?  Real bad?  All I want to do is beat someone with a sockful of nickels.  Is that so wrong? 

I'm at my most creative, you know, when I'm grouchy and in pain.  Suffering produces Genius.  I'm like Hemingway that way.  I'm sure you've all compared me to Hemingway many times.

But...  As usual, I chose to set aside an opportunity to create anything remotely close to Genius and blog, instead.  I came up with this little top ten list for all my fibro peeps, or anybody who knows/loves someone living with chronic illness or pain.  This is the product of five years' worth of anger, impatience, frustration and pain.  It may seem whiny and self-serving, but it comes from a genuine desire to help other people in my position (and also to make some of you shut up... but mostly the first thing).  And who knows?  It may benefit us both by keeping one of us from beating the other senseless. 

Take a look to determine if any of this applies to you.  If so, know that I still love you ...but I'm adding nickels to the sock as we speak. 

TOP TEN THINGS TO AVOID SAYING OR DOING TO SOMEONE IN CHRONIC PAIN, LEST YOU BE BEATEN WITH A SOCKFUL OF NICKELS:

10.  "It's probably this weather (/time of the year)."
You say this because your joints (or ears, scalp, back or butt) ache(s) when it rains, I guess.  I'll admit, I'm being harsh and overly sensitive with this one... But it's because I hear this All. The. Time.  And I've reached the end of my patience.  Look, I know you mean no harm, but please stop asking me if it's the *#%$ weather.  It's not.  It's Fibromyalgia.  Google it if you don't know what it is, because I shouldn't have to explain it to you every-flipping-time it rains.  Here. I just Googled it for you.

To be completely fair, there is some evidence that fibro pain can flare with changes in the weather, in some people. But it is not caused by weather changes, and personally, I don't notice any correlation between weather and a flare.

One of these days, I'm going to respond to this with, "Really, Al Roker? Is it the weather? Maybe it's the phase of the moon... Maybe it's planetary alignment... Hey- maybe it's your breath causing me pain right now."  If you are the unlucky soul standing before me on the day this happens, I humbly ask in advance for your forgiveness. 

9. "May I count on you to (fill in the blank... teach a Sunday School class, participate in the bake sale or fundraiser next month... whatever)?"

There's nothing wrong with this question, right?  I don't mind being asked to "volunteer" for things.  I LIKE to volunteer for things as I am able, and I WANT to participate in life...  as I am able, BUT...  If you're going to ask, please don't get so bent if I have to respond with: "I'll have to wait and see," "I'll try," or "I'll let you know." I'm NOT being vague, non-committal, or inconsiderate, so don't judge or get frustrated. I'm doing the best I can to accommodate you without making promises I'll have to break later. I'm sorry if that interferes with your planning. It sorta interferes with mine, too. 

No matter how much I may want to participate (and I really, really do), saying Yes to anything feels like a lie to me. The only honest answer is "I don't know."  I never know.    Even with my own children, every promise is prefaced with "If I feel good that day, maybe we can..."

Here's the thing...  If you know someone living with chronic pain or illness, that person is living day-by-day.  And that's not by choice.   By all means, invite them to events and encourage them to volunteer or participate.  Just be understanding and don't put pressure on them to commit. 

Right: "We're having a pot luck after the meeting.  I'd love for you to come if you're able."  

Wrong: "I need to know if you're coming to the pot luck and what you plan to bring."

(Obviously, some events require a firm Yes or No and it's not always possible to take a wait-and-see approach to accommodate one person.  I don't expect you to make special allowances for me.  Just don't be so pissy if I'm not able to commit!  If you must have a firm commitment, ask someone who is able to give one.) 

8. "My girlfriend's sister had her some 'o that fibomerralgah... or somethin.  Maybe it was cancer?  She took (fill in the blank... bee pollen, yak dung, cayenne pepper, skunk pee) and she got better."
If we're good friends, I don't mind when you do this.  It shows you care and want to help, and I appreciate that!  But if we're more casually acquainted? Thank you for showing an interest, but... 

You must realize that some of the ideas floating around out there are batcrap crazy, right?  And between the prescriptions, natural remedies, and stupid Internet cures scams I've fallen for out of desperation, I've tried quite a few things. I also try to stay current on the research. If I need any other advice, please let me ask you.

Along these lines...  Please do not ask me which meds I've tried or am currently taking (unless we're really close, or you also have fibro and we're comparing notes). That's a pretty personal question. If I want you to know, I'll tell you. 

7. "But you're ALWAYS tired!"
Why, yes. Yes, I am. You're quite the discerning one, aren't you?  So astute.  See, there's this thing called fatigue... That's part of it. Chronic fatigue, exhaustion, pain and weakness.   Chronic means it doesn't really stop, so that would be a key word, there. 

The problem with this type of remark- aside from the obnoxiousness of stating obvious things- is it's never a mere observation. It's packed with the implication that the fibro peep is not really tired, she is just lazy or making the same old excuse to avoid doing something she doesn't want to do. That's crap.  She really IS that tired. 

6. "Do you think some of this might be, ummm... weight-related? I lost 15 lbs and I feel so much better!"
Really, you little snot?  15 pounds?  That's awesome! Congratulations! Do you have fibromyalgia? Oh...  No?  Okay. Then, wait right here. I have something I want to show you. It's in a sock.  You're gonna love it!

5. "I hear exercise helps."
Um... Yes, it supposedly does. I'll make you a deal: 

1. Let me run over your leg with my car. Just one leg. No biggie.
2. I'll encourage you to jog around the block to see if it helps you feel better.
3. Afterwards, you will have unlimited permission to tout the benefits of exercise while I'm in unholy pain. 

Until then, how about you go for a five mile run... and maybe don't come back?

4. "But you don't LOOK sick!" 
Ummm...  Thank you, I guess...???  Is this a compliment, or an accusation?  Are you simultaneously acknowledging the fact that I look awesome, while insinuating you don't believe I'm sick?  Because that's what it sounds like.

Fibro has absolutely nothing to do with appearance. There's no swelling, no oozing (thank God), no redness, no huge, itchy welts.  I can't help it if I'm able to look absolutely fabulous (snort) while I feel like crap.  Maybe I'm great at faking it?  Didja think of that?  Doesn't mean I'm not miserable on the inside. 

Sure, some days you can definitely see I'm in pain.  My facial expression, being in the same jammies for days, and walking like Frankenstein's monster are clear indicators that I'm having a bad flare.  BUT, looking "good" does NOT mean I feel good. 

While we're on this subject of what, exactly, looks like sickness... 

Seeing me at the mall today after I was too sick to attend church or some event yesterday does not mean you caught me in a lie- so put your pistol down, Sheriff.  It means I'm having a good pain day (because every day is a pain day- there are just differing levels of good and bad) and I'm happy for an opportunity to get out of my house and get something accomplished while I have the chance.  Maybe you could try being happy for me, too.  Or maybe just pull that big stick out of your... 

Moving on...

3. "I've told you this twice already!" (Or, "You told me this twice, already!")

I'm brain dead, guys.  Chronic pain becomes "louder" than what's going on around you, if that makes sense.  If you have migraines, arthritis, or other pain problems, I'm sure you can relate.  Pain takes up all the space in your head. You get stupid.  Unfortunately, my stupid is long-term.  They call it Fibro Fog. And I hate it. As much as the pain itself.

I used to be halfway smart, you know.  And I had an amazing memory.  Uh-MAY-zing.  Not Marilu-Henner-amazing, but amazing.  You could come by, all apologetic and sheepish over the 20 bucks you thought you owed me, and I'd say, "No. I specifically remember you paid me back already. It was a Tuesday, last April. You were wearing a red and white shirt.  I was playing Def Leppard (cuz I'm awesome). We were standing in my kitchen, talking about the economy, and that reminded you of the $20 you owed me. You took two tens out of your purse.  The purse was black with a silver clasp.  One of the tens was all wrinkled...  'Member that?"

...And now? I sit in the corner and eat paste. Then I blog three different times about the same paste-eating incident.  You could tell me I owe you $20 today, even if you know I don't, and I'd probably say, "Ok... Have you seen my purse? ...Do I own a purse? If I give you these 7 quarters, will that equal $20?"

And you would say, "Sweetie... Those aren't quarters. You're holding 2 Rolaids, 2 strawberry cough drops, and what appears to be the button that once held your pants closed. Did you know you're pants are hanging open?  Quarters are silver, hon. And you'd need two more things to equal 7... But good job! I'll ask Darrell about the $20. Go back to your paste."

2. "Have you thought of talking to somebody?" "Maybe you're depressed?"
Oy... Oy, oy, oy.  I'm adding more nickels. I mean it.  For one thing, the words 'talking to somebody' or 'depressed' are always said in a stage whisper, as if the subject is shameful. For another thing, the 'somebody' to whom you refer is a psychiatric professional, obvs, which is meant to imply my "pain" has an emotional or mental cause, and is not a "real" physical illness.

It's not that I think I hurt. I really, honestly hurt.

Depression is a serious thing- and just as real as fibromyalgia- so I don't mean to discount it. There are some similarities and overlaps between the two conditions. Fibro patients can and do become depressed. Of course they do. Being in pain 24/7 isn't fun. But the pain didn't come from the depression- it's the other way around.

And? I'm honestly not depressed.  So please stop asking me that.  Good Lord, peeps.  Actually, I consider myself to be a pretty happy person.  And considering some of the crap we've gone through in the past few years, that's a rare and unusual thing.  Let me have it.  Quit trying to squash it. 

Think about it, guys... I've discussed my pathetic, poverty-stricken state, and the twin I absorbed as a fetus, aka my goiter-sized double chin, aka Chaz Bono- in the same post.   I've told you about marital woes.  And kid troubles.  I may have- during a moment of weakness- mentioned peeing my pants, but we pretend I didn't, so we don't post links to the evidence. I've shared thoughts on my jumblies- as if you'd ever want to hear them- and my Spanx-related fiasco...   These are deeply personal things, peeps.  Things that normal people try to hide.  Do you really think Depression would suddenly cause me to feel shame? That's where I get embarrassed and finally draw the line???  Pffft.

If I suffered from it, I'd probably tell you. Dontcha think?

The judgment and disbelief from morons who took an Intro to Psych class at a community college in 1993 make me depressed. Is there someone I can talk to about that?

1.  Playing "I Can Top That Pain!"
This is the same game women play when they start swapping labor and birth stories.  There's always a scuffle over who takes the prizes for Longest Labor, Hardest Labor, Most Disgusting Tear/Episiotomy, and so on.  Know what I mean?

People love to play this game with fibro, too, making statements like:

• "Oh, yeah, I had something real similar last year when I (fill in the blank... pulled a muscle/twisted my ankle/whatever).  It was excruciating."
• "Insomnia? Yeah, I have that, too. I went to sleep at, like, two this morning."
• "Chronic pain? Tell me about it! Try sitting at a desk all day! Boy, does my back hurt!"
• "My daughter has arthritis, so she REALLY hurts."

That last comment about the arthritis was made to me (in church!) by a lady with a big smile on her face, after she asked me how I was doing.  I made the mistake of giving her the honest answer that I wasn't feeling very well due to fibro pain.  And she REALLY made me mad.  I wanted to respond (in church!) with, "WTH does that mean?!?  'REALLY' hurt?!?  Are you flippin' kidding me?!"  But I didn't. 

It's not a contest, guys!  As a general rule, it's never a good idea to compare your pain to another person's, unless you personally know how their pain feels. It belittles that person's struggle when you compare her pain to something small or temporary, or contrast it with something that "really" hurts. That's insulting and rude. And obnoxious.  And the apex of assiness. 

I really do hurt. I promise. I'm not quite devious enough to mastermind this five-year long scheme in which I fabricate an illness or exaggerate pain just to steal the spotlight from your daughter's arthritis.

And... If you think you know what fibro sleep is like... Ya don't. Especially if you confuse the word 'insomnia' with the phrase "night owl." Staying up until 4 a.m. watching TV, then sleeping in until noon is NOT insomnia. It's what I call a solid 8 hours of sleep.  Fibro peeps do not sleep like you do.  There is no comparison.  So if you really want to make it a competition?  You lose.

Listen, I know life isn't all about me.  I know there are other, bigger things going on besides my piddly-a*$ pain problems, but you know what?  It's not all about you, either.  I'm not saying you shouldn't be allowed to talk about your own aches and pains, or constantly be subjected to my litany of complaints.  In fact (in real life, anyway- not on this blog), I try very hard NOT to do that.

But I shouldn't have to "prove" my pain to you or compete over whose pain is worse.  That's all I'm saying.  People with unseen illnesses don't want your sympathy or even need your empathy.  But would a little validation kill ya?

And there you have it.  The main point to take from this is...  People are idiots (Nooo, I'm Kidding!  Sort of). The point is- Just do unto others as you'd have them do unto you (another phrase I just came up with that I believe will catch on). 

Be willing to learn more, care more, speak less, give the benefit of the doubt.  Avoid stupidity when you can help it.

Choose compassion.  And avoid the sock.

Declutter...

How's it going with the New Year's resolutions?  I didn't really make any.  I did, however, jump on the bandwagon of choosing one word to define and direct my goals for this year. 

(Before I share it, though, I want to say an early 'Happy Birthday' to my kid...  Happy birthday, Evan! I love you and miss you! Can't wait to have you back home.  Praying that God has some exciting things just around the corner for you and that this year is going to be YOUR year!)

The word I've chosen for 2013 is DECLUTTER.  And that's a doozy of a word.  For me, anyway, it encompasses a-whole-heckuva-lot. 

My hopes to declutter in 2013 (if all goes according to plan) will affect every area of my life, not just my home (although that will be a big part of it).  This isn't just a "I'm finally gonna get organized" kind of thing, although I certainly hope that will happen.  It's more of a "I'm gonna achieve peace and contentment if it kills me" kind of thing.

Here are the specifics, in a long, rambly nutshell.

DECLUTTER my home 
This will actually be the easiest (although not easy), so I'll start here.  My housemates and I do not need 49 t-shirts that are suitable only for sleeping or cleaning house, or 17 pairs of jeans that no longer fit, so that's where I'll start, with decluttering our closets and drawers. 

Ever since getting "sick" (I was diagnosed in 2008), my deep cleaning skills (aw, who are we kidding?  Deep?  Snort!  My cleaning skills, period) have really suffered.  I just don't get down on my hands and knees for anything anymore...  Unless someone drops M&Ms at my feet.  And even then...  It's gotta be a pretty good handful.  So, I'm envisioning something akin to entering a wardrobe and suddenly finding myself in Narnia.  Some of our closets haven't been investigated in a long time and God only knows what I'll find, is what I'm trying to convey.  I don't know if I should expect the process to be tedious, exciting, terrifying, or a combination of all three.

I'll have to remind myself not to feel wasteful when it's time to say goodbye to a "perfectly good" piece of clothing, or fearful that I may get rid of something I'll need in the future.  God will see to my future needs.  But He will not clean out my closets (believe me, I've asked).  Apparently, only I can do that.

I hope to blissfully and thankfully let go of the things that no longer serve us, instead of fearfully clinging to stuff, "just in case."  When I begin to worry that I'm letting go of too much- that I'm really, really going to need these things, I will remind myself of the wise words in Matthew 6:25-34. 

When I daydream (and I will), that I may someday wriggle my buttocks back into the size 8 jeans I've been hanging onto for 22 years, I will declutter my thinking by reminding myself that if I succeed in becoming a size 8 again (heck, even a 10) that accomplishment will deserve a brand new pair of jeans, not some tired, old, out-of-style pair (...My way-too-small Wonder Woman t shirt is not going anywhere, however. Let's just make that clear right now.  You will not even pry it from my cold, dead fingers, because I will be buried in it... even if it has to be slit up the back to make it fit).

Anyhoo...  The unnecessary, material CRAP in my life- It's all going.  And I hope, by the end of the year, I'll have a whole slew of posts showing my progress. 

DECLUTTER my head
This is a biggie, because the success of this one will determine the outcome of every other goal I've set.  I want to rid my head of the centuries-old (okay, maybe not that old, but "half-a-century-old" doesn't roll off the tongue), self-destructive patterns of thinking that bring me down every day. 

While writing this post, I had the pleasure of reading a post called Drops of Awesome, which was shared on Facebook by a friend. If you didn't see it there, I hope you'll read it here.  Honestly...  If you're prone to beating yourself up the way I do, reading this will be one of those epiphany-inducing, life-changing things.  For me, it was pure serendipity... or not. The timing of it was more like a "God thing," as it so closely reflected the new direction my own thoughts have been taking. 

I want to be kinder to myself; cut myself the same amount of slack I'd give you...  Stop looking at myself with a destructive, self-sabotaging throw-the-baby-out-with-the-bath-water mentality that says I'm either perfect, or I absolutely suck.  Cuz guess what?  I'm never, ever perfect.

I hope to focus more on the little, but good things I do- the "drops of awesome"- instead of constantly beating myself up for all the ways I fail each day.

DECLUTTER my time
This one doesn't need much chit-chat, does it?  I mean... just that fact that I'm sitting here blogging right now with laundry to be done, or bills to pay tells you I could find more productive ways to spend my time. On the other hand? What would the two of you do without me?  

I definitely want to carve out more meaningful time with my kids, though.  Not just homeschool time.  Not time spent together watching tv.  But memory-making, fun, REAL time. 

DECLUTTER my body
I want to be healthy.  I want more energy.  I also want to be smaller, but mostly, it's the health thing.  I want those things so badly, yet I never achieve them. 

I think we've established that I'm a picky, horribly unhealthy eater, right?  Seriously, I'm like a 4 year old.  I'd say at least half the foods offered on healthy meal plans are ones I think of as gross (Fish?  No.  I don't do fish.  Veggies?  Sure.  I love loaded baked potatoes, corn on the cob- covered in butter and salt, or a nice healthy salad... topped with bacon, cheddar cheese and blue cheese dressing.  Legumes and beans?  I'll eat beans in chili, but that's about it.  Hummus?  I don't even know what that is.  Never had it.  Don't want it...  See?  I'm ridiculous).  So, when I do try to "eat healthy?" I get hungry and feel deprived... which becomes overwhelming, depressing and, ultimately, unrealistic. 

I know I'll never be healthy if I don't tackle the pickiness problem.  I need to learn to work around it,  or with it- gradually, instead of expecting to change it over night.  This goes back to that idea of throwing the baby out with the bath water.  My approach to eating healthfully (like my approach to everything else) has always been too all or nothing.  I throw out all the junk in the house, eat one "last meal" of good food (like taco pizza followed by chocolate sheet cake or peach cobbler...  You have to really treat yourself the night before you meet your doom, y'know?), then go to bed full, but already feeling sad and deprived over the life I'm leaving behind, and plan to change my entire life beginning at 7:00 the next morning.

It's all about how quickly I can lose a certain number of pounds, instead of being about a sustainable life change.  It boils down to too many radical changes too soon;  too many yucky new foods that I don't know how to prepare.  I'm defeated and eating ice cream by 3:30 pm.  Then, I wait for the next Monday to begin again, because in my all-or-nothing head, diets always start on a Monday, so ultimately every Sunday night becomes a "last meal" night before the "fresh start" on Monday morning.  Is it any wonder I'm fat?

This year, I'm going to focus on feeding myself the way I'd feed a toddler, since I'm so good at behaving like one.  I'm trying to introduce new, healthy foods a little at a time.  Making gradual, positive changes seems so much more doable to me than taking away all the bad foods I love so much.  Right now, for example, I can't imagine a morning that begins without Diet Pepsi. I cannot envision drinking nothing but boring, plain water. Ick. So, for now, I will cling to my beloved DP, but also add a glass or two of water to my day.   I will eat my taco pizza, but with a salad or handful of baby carrots. 

This morning, I had a whole grain English muffin for breakfast.  It had butter and jelly on it, but I ate something whole grain for breakfast.  Yay, me!  Usually, I don't eat breakfast at all, and when I do?  It's chocolate.  Progress, people!

It will be about ADDING, not TAKING AWAY.  Drops of Awesome.  Hopefully, by the end of the year, I will have a bucket full of awesome- those bad foods I adore and crave will have been replaced one by one as I learn to make and like healthier choices, and the process will not have seemed so overwhelming and difficult. 

DECLUTTER my spirit
I want to rid myself of any activity, thought or thing that detracts from my relationship with God and is unhealthy for my soul.  If my spirit suffers, my relationships with those I love will suffer, and of course, I suffer as well.  I want more time in His Word and spent in prayer.  Easier said than done, but that's the goal.  Also?  Maybe I need to think more carefully about what I spend my time watching and reading.  What area(s) of my life am I still withholding from God?  Maybe I need to look more carefully at the people in my life, which leads me to...

DECLUTTER my peeps
I've already touched on this topic a little in my last couple posts.  I use up way too much time and energy dealing with people who do not add anything positive to my life.  Those days are done (I hope).  I do not wish to become more selfish, but maybe a little more self-focused (in a good way!); just in remembering to consider my own well-being and emotional/spiritual health, along with others' when choosing who and what deserves my time. 

DECLUTTER my marriage/other relationships
This does not mean I'm getting a divorce or leaving my family.  Nor am I devising ways (sinister or otherwise) to get rid of family members (heehee).  I'm not even plotting ways to change their behavior.  To me, this means choosing to lay aside my own behaviors that add nothing positive to my relationships.  

Do you have anyone in your life with whom you argue?  Do those arguments ever seem to be um...  let's say "redundant," or unproductive?  Do you ever feel as if you've been having the same, dang argument with someone- over and over and over- for years, with no resolution?  Help me out here, guys.  Surely, I can't be the only one, can I?

What's that oft-used saying about the definition of insanity?  Isn't it "doing the same thing over and over, but expecting different results?"  I've thought of that expression quite a bit this last year, since I've pretty much been living it.  Sometimes, it's like I'm in that movie Groundhog Day.  That can start making you feel a little nuts, after a while, guys.  It's not healthy.

When we know certain words, tones, attitudes will only lead to an argument (or all-out, knock-down-drag-out fight) that has no positive solution, what ultimate purpose does it serve?  Arguing for the sake of "fixing" something can be healthy, but, there comes a point...   A point when you know you're not arguing so you can solve or help.  You're arguing so you can hurt.  You're arguing just because that's what you do with this person.  And that can't really even be called an "argument" anymore.  It's bickering.  Petty, obnoxious bickering. 

Oftentimes in relationships, it seems we see a storm brewing and steer toward it; we say our well-rehearsed, destructive lines, with feet even more firmly planted in our already deeply held positions, then we walk away no closer to a solution; only more angry, bitter, and frustrated than before. 

Lather, rinse, repeat.
 
I want to be done with that.  I want to feel like I'm moving forward and making progress, not spinning my wheels.  My life is (at least) half over.  Why waste one more day with anger or petty behaviors?  Those things clog and clutter my relationship with God and affect people I love.  Why give any person that kind of power over my life?  I can't make someone else stop hurting me.  But I can respond to hurt differently.  I can't make other people get along with me.  But I can stop actively participating in conversations that have no productive outcome or benefit.

This will be one of the harder goals to put into practice.  It will mean biting my tongue... A LOT...  And I'm not a tongue-biting kind of girl.  I don't know if you've noticed that.  It will mean refusing to take the bait.  It will mean saying I'm wrong when I know I'm right.  It will mean letting the other guy "win."  So what?  If I can live a calmer, happier, more peaceful life, am I not winning, too?

I think the theme of DECLUTTERING will be a frequent one here in this coming year, as I delve into all the areas of my life that need a little trimming.  I hope I'll have heaps of progress to share. 

What about you?  Did you choose a word, theme, or goal for the year?  Any words of wisdom to share as we all venture into this new year?  If so, I'd love to hear it! 

You know, you all have gotten very quiet and rarely comment.  What gives?  What's the fun in doing all this talking if no one talks back?  Maybe your word for this year should be COMMENT!