Fibro Friends

I’ve had Fibro since I was 10, but I wasn’t diagnosed until 2007.  Up until my diagnosis, I heard it all – You’re lazy.  You’re female; you’re going to hurt; get used to it.  There’s nothing wrong with you.  It’s all in your head.  Is it your time of the month?  I’m sure those of you with Fibro have heard those and more.

But then it finally happened.  This thing that had plagued me all of these years, this beast, it had a name.  If it had a name, then it could be fought. 

I was diagnosed by a rheumatologist while I was hospitalized with something else.  After my discharge, I saw the doctor in his office.  For a change, a doctor’s visit actually excited me.  We were finally going to tackle my mystery illness! 

The doctor came in, asked about my pain levels, gave me a prescription for Lyrica and turned to walk out the door.  Wait!  What else do I do?  “Find someone to talk to,” he tossed over his shoulder as he left.

I got on the Internet immediately and looked for a support group, but I couldn’t find an active one anywhere in the state of Tennessee.  So I put an ad in the paper and started reading and researching anything and everything I could about Fibro.  In September 2007, it was me and a newspaper ad.  In October, I had FibroFriends.  I didn’t intend to start a formal support group or anything like that.  I just did what that doctor told me to do.  I found someone to talk to.  Now, we have an online membership base of over 275, and we grow daily.  Five years ago, I thought I was alone.  Now, I know I’m not.

The fact that I’m not alone is what has encouraged me to take Fibro Friends to the next level.  It’s time to advocate and educate, in addition to support, those Tennesseans with Fibro.   We also need to educate medical professionals, whom we shouldn’t have to, and government officials.  One of the ways I intend to do my part of this is to make my presence known, offer information and assistance, just plain old speak up.    This blog is one way to do that. 

Another way to speak up is to go to medical offices and offer packets of information made up and ready to go for anyone just diagnosed with Fibro.  That way they’ll know they aren’t alone, which is how I felt.  At the time I was diagnosed, I’d spent over 30 years dealing with my “mystery illness” by myself.  When I found out the monster’s name, I suddenly felt like I was no longer alone, only to feel even more so because I couldn’t “find someone to talk to,” as I’d been advised to do.  I have Fibro Friends and others will too. 

The fog is upon me.  It’s time to close this before I garble it up even further. 

Life Interrupted

I have Fibromyalgia.  I’ve had it since I was about 10, so I’m not sure I remember how to live without it.  The difficult thing, however, is to remember to live with it.

I don’t recall my last day without pain.  I know that my first pregnancy was almost pain-free, and my second pregnancy nearly was – I mainly battled fatigue during that one, but I honestly can’t remember what it’s like to not hurt, even though I know I’ve had some decent days in the past. 

Most days I wake up, take stock of what’s aching, decide it’s an acceptable level of pain and then get up and go anyway.  In fact, I’ve done that for many years.  It’s how I managed to hold down a full-time job for so long.  But some days the pain isn’t an ache.

Sometimes the pain is like last night, a hot throb throughout my entire body, sort of like a giant toothache.  I sleep for about 29 or 30 minutes, wake up wrapped in pain, deal with the agony for about 2 hours and then doze back off again, mainly out of sheer exhaustion.  I’ve had this pain pattern on and off for years.  I’ve always assumed, since the naps are almost always to the exact minute, that this pain has something to do with my sleep cycle.

Then there’s the pain like I’m having today.  It’s a weird buzzing, like I’ve got static electricity running throughout my entire body.  It’s not the big jolts like you get when someone’s just crossed the carpet in the middle of winter and then touched a doorknob.  This version of pain is non-stop - a constant buzz that is aggravated by anything that touches me.  This is the day when it hurts to wear clothes, so I sit around in frumpy cotton stuff.  I don’t care what it looks like.  All I know is that there are times when soft cotton is the only thing that prevents me from slaughtering quite a bit of the human race.

There are sharp pains, shooting pains, even short and long pains.  There’s just pain, and there are times when it’s easy to get lost in it.  I want to just curl up in bed and cry it away.  But crying doesn’t work.  It never goes away.  I have to challenge myself.

I try not to give in to the pain often.  There are times when I do, when I just stay wrapped in my blankie, cocooned in my soft bed.  Then there are times when I challenge myself.  “Let’s see how long it takes to get to the bathroom.” 

Hey that wasn’t so bad!  Now, let’s see what I have to do to fix some breakfast.  I bet I can do it.  I just have to pace myself.  I try not to think about the entire day, the week, or anything even close to that.  I just focus on the next task at hand.  It doesn’t seem so daunting then.

I also think of those that have it worse than I do.  Yes, I hurt.  Yes, I’m exhausted.  Yes, I can’t even remember where my socks are, but I’m alive, I have a roof over my head, and my sons are healthy and doing well.  I could have it worse. 

Plus, there are a few things in this world that never fail to bring a smile to my face.  My sons are one.  I love those boys.  The Hounds of Hell, heck, even when they’re aggravating the daylights out of me, can usually make me smile.  Titan and his pitiful ears – just picture Jar Jar Binks.  The sound of a baby’s laughter – how can you not smile at that?  Kittens at play and National Lampoon’s Christmas Vacation, they both make me laugh as well.  I guess it’s a just a question of changing my perspective on bad days.

I guess Fibromyalgia may have interrupted my life.  I just have to remember to not let it stop it.  Sometimes I have to remember to live.

I Have Fibromyalgia

I have Fibromyalgia. I may not look sick, but I constantly battle this chronic illness, as do hundreds of thousands of others, some only children. While still widely misunderstood, we now know that “Fibro” is a neurosensory disorder characterized by widespread muscle pain, joint stiffness, fatigue and more.

When people ask what Fibro is like I tell them to imagine the worst case of flu they ever had, that flu that makes you ache so much that even your teeth ache, that flu that makes you feel so exhausted that it's all you can do to breathe, and then I tell them to imagine feeling that way every single day. And then imagine trying to have a life with this. When you have the flu, you call in sick. When you have Fibro, people accuse you of being lazy, being melodramatic, of imagining you're ill.

It’s not an easy life, but it’s mine.