Wednesday, January 30, 2013

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. 

THIS is what fibro looks like on a good day >>>. 
Darrell took this picture of me while we were out with the kids.  I didn't know I was being photographed- I was just sitting there watching the kids run around, so he caught my "real" face.  My fibro face.  I wasn't angry or sad.  In fact, I was having fun.  I'm clean, dressed, and out of the house, so- overall- this is a "good pain day."  Notice the way one hand holds the hurting leg while the other tries to hold my weight up off the hard, painful rock.  Don't pay attention to the bad hair- it was really windy and, again, I DIDN'T KNOW I WAS BEING PHOTOGRAPHED.  This isn't a flattering pic and it's embarrassing to share it, but some of you need to see it.  Pain does have a "look."  This is it.

Here is another pic from the same day when I DID know I was being photographed.  Do I "look" sick?

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.

1 comment:

necessarygrace said...

Okay even in your fibro fog, you're still a great writer. And funny. Also? I totally thought that picture was of like a model for fibro medicine. You look like a model. A model in pain, but still! A model. :)
People in general have a very bad habit of saying stupid things. I'm often amazed at what comes out of other people's mouths. Then again, I've had quite a few doozies come out of my mouth, so I shant be applying for sainthood just yet. But I think this is a really good and seriously helpful post and I will be referring others to it!