Wednesday, April 8, 2009

Fibromyalgia, Pain, & Talking about It

I've been having a really bad flare-up the past couple of days. Nothing helps. Nothing. But just laying around. Doing. Nothing.

And that, quite frankly, sucks.

The pain is so incredibly intense, excruciating, and all-consuming. I'm not sure if I'm going forward, backward, or sideways sometimes. It. hurts. always.

Given that this is a chronic, invisible illness, I sometimes mention the Fibro because I want people to simply be aware. I need them to know in case something happens. I don't want to look like a fool who can't put one foot in front of the other. I want people to know I'm not a lunatic. I want people to know that inside I'm screaming in pain, even if I'm just talking about it casually so that they are aware. I really want to help spread the word, whether online or in my life generally.

The problem is then people think you're complaining about your life. Really I'm not. I want to be vocal to help people understand. But then they also often tell you (or you can tell they're likely thinking it) to suck it up and just get over it. Everyone deals with pain at one time or another, seriously, why can't you just deal with it like the rest of us?

Um, excuse me?

Well, the problem is this is not like "the rest of us". It is daily. excruciating. all over body pain. It is 24/7/365. It doesn't go away. It doesn't let me do certain things. It has like 20 side monsters of symptoms that people don't realize contribute to the pain, agony, and misery. It is from the tip of my head to the bottom of my feet, underlying every nerve/muscle/joint or whatever the heck it's stemming from.

Do I have pain that is more severe in certain areas on any given day? Yes. But that doesn't mean you understand what I'm going through just because you have chronic back pain. Try that plus about 1,000 knives poking through your skin ALL OVER, EVERY DAY, ALL THE TIME. You try walking into a room that is set at 70 degrees, you start sweating for no apparent reason when you never used to before, and you tell me that it's okay that everyone's staring at you like you're crazy since you get hot so easily. And then see it go to 65 degrees and freeze your tail off and no one understands your temperature sensitivites. You try sitting on the toilet more often than not when your IBS acts up for seemingly no apparent reason. You've eaten that food before and it never affected you. You try to sleep through the night 7 nights a week with no baby, no pets, seemingly no visible excuse not to sleep, and yet you often lay there staring out the window, wondering if you'll ever get a full, good night's sleep again. When ironically the thing they tell you that you need the most with chronic illness is rest and sleep but you can't seem to get any of it!!!! And even when you do, you wake up so stiff you can barely move, but you know if you lay in that bed for one more second you are going to scream and wail at the top of your lungs because it hurts SOOOO. BADDDDD.

Plus at least 15 more things on top of that.

I wish people could go through this for just one day. One day. Then you'd understand. But really, I wouldn't truly wish that on anyone. (Trust me, I'm not that mean; just doing a bit of venting and trying to help people understand... and just having a really hard week.)

And instead I feel judged, criticized, belittled, and like a freak because I'm a "wimp" who can't handle pain & fatigue. Yeah. You try having it for one day and see how crazy, miserable, and depressed it makes you.

It doesn't matter if you're a Christian or not... pain is pain. It hurts. It stinks.

Really. Truly. Stinks.

But indeed, I know that in light of Christ, my suffering is nothing.

In the end, I still know that God has allowed this for a specific purpose, for my good and his glory. And ultimately, I'm okay with that. I know I need to learn some things. I want to grow. I want to honor Him. But that doesn't mean I don't have days where I need to vent, freak out, doubt, get scared, or over-analyze "why me / why now / why this?". That doesn't mean I can see clearly or fully understand everything about this.

But it does give me hope. Hope and a reminder of God's eternal promise.

He will never leave me or forsake me. And one day I will spend eternity praising Him for it.



Bring it. I'm ready.

I'm exhausted and screaming in pain. But I'm ready.



Future of Hope said...

Oh, Rochelle.
I wish I had words to offer comfort. I wish I could do something to help you out. I wish I were closer so I could at least give you a hug!

But please know that you are in my thoughts and prayers today. And, my dear, God has already changed your heart in so many ways. He IS using this in your life, and your attitude reflects that! Keep trusting in the One who is fully able and trustworthy; He will not fail.

~~Deby said...

Rochelle...I know this..I know this all...PERSONALLY and yes, there are a few people in my life that I wish they could experience how debilitating this hard it is...when the pain changes places that you never had pain before..when you have such FATIGUE that you look at all that is going undone and you are unable to do anything about it..
how if you do one thing too much on a certain day, you pay for it for days....right now my ribs are really hurting..I have a new pain in my right foot....sometimes my legs feel like they are being branded with a hot iron...yes I know...and I hate it and want to give up...but I tell myself it could be worse, it could be worse...and I want God to get the I pray for others to make use of time praying that maybe God is honoring the prayers...
I and are in this together...and I look forward to heaven....NO guilt...and just the Love and understanding of my Saviour

Sherah said...

Thanks for your honesty, Rochelle! I think it's important stuff to hear for people who don't deal with chronic pain. It's so hard to imagine, but you articulated it really, really well. Thanks for sharing this. Praying for you :)