Haywire

One of the hardest things to explain about fibromyalgia is how it effects EVERYTHING.  It's not just pain and fatigue, although that's the biggest commonality among sufferers.  Articles and some doctors may even say that it's not progressive.  It absolutely is, or at least it has been for me.  Ten years ago everyday noises didn't bother me.  Only noises like fireworks bothered me.  Now, the sound of kids playing, cars going by, motorcycles, machinery, power tools, lawn mowers etc . . . bothers me.  Some days it's so bad I can actually feel the noise on my skin.  The sound of a loud bass thumping makes me nauseous.  It wasn't that way a few years ago.  It's a newer development with fibromyalgia.  So when I say that we moved because *partly* because our neighborhood was too noisy, you know, it's just me.  The neighborhood was great with the exception of the lineman frat house.  Even those guys were super quiet in the weeks before we moved.  We hardly even knew they were there.  It's a fantastic place to live - if you don't have noise sensitivity.

Our new place is super quiet.  God is good to me.  He worked it out for us to move sooner than we expected, and worked it out so that a place better than we imagined was available for us.  I thank Him everyday.  No traffic noise and no neighbor noise.  We are surrounded by fields, so a few times a year we get tractor noise.  That's exciting for the kids.  It's ideal.

So, as I'm still relishing the quiet, we get an early cold snap and snow.  Lots of snow.  Did I mentioned early?! I don't remember ever getting this much snow this early.  Temperatures are in the single digits at night and it's not even Thanksgiving yet.  So here comes another fibromyalgia sensitivity - cold.  For people with fibromyalgia cold equals pain.  A quick weather change is also pain. So a quick weather change into cold wintry conditions is miserable.  Often when I get cold, I can't get warm again.  The room can be almost stiflingly warm (ask my family) and I sit under piles of blankets shivering.  I also get cranky.  I shouldn't, but I do.  My poor family! 

The other day I went out and played in the snow with my kids.  How do I explain to them how badly that could effect me?  I can't.  I want to do special things like that with them, even if I have to pay for it.  Yet, I was fine.  Maybe because I was moving.  Later, in the house, I got chilled and couldn't get warm again for hours.  That makes no sense, you say?  I know, right?!  Nothing about fibromyalgia makes sense.  Maybe that's why no one understands it enough to come up with an effective treatment.

Why do I write all this?  Because most people that I know don't understand fibromyalgia, if they've even heard of it.  It effects millions of people.  Chances are I'm not the only person you know that lives with fibromyalgia.  It effects people to different degrees.  Some people can continue to work their job and mostly keep up with their lives, and others lose mobility to the point where they have to use a wheelchair or a cane.  I'm somewhere in the middle.  I certainly cannot work, but I can walk on my own.  The other day I even made lunch for my kids, put dinner in the crock pot and started some laundry - all after playing in the snow with the kids.  Even without playing in the snow, that's a good day for me.

Since I started this post the temperatures dipped into negative numbers, but now we are nice and toasty in the 30's. ;)  Still cold.  That means fibromyalgia pain does not let up.  You would think after all these years that I would no longer wonder at at the pain, but I do.  Even today I can wrap my head around how much body hurts - with no good reason!  All that to say, please understand the people in your life that have fibromyalgia or other chronic pain conditions.  If they seem lazy, please remember how much it's hurts to move.  If they seem cranky, please remember that they are in constant pain and are always tired.  Imagine how you would feel if you didn't sleep for three days.  That's a pretty normal feeling for people with fibromyalgia.  When you make plans with someone with fibromyalgia and they have to cancel at the last minute, please remember that they don't want to cancel.  Maintaining friendships and commitments is very important to us, but we can't control our health issues.  Canceling plans is absolutely no reflection on how we feel about you.  In fact, if we dared to make plans with you then take it as a compliment.  We know we may have to cancel, but we cared enough about you to risk it and believed that you would understand.  Please don't give up on us.  Keep inviting us to things, keep in contact, keep praying for us.  Fibromyalgia steals a lot from a person, please don't let it also steal your friendship.

I've gotten side tracked there, but these are all things someone with fibromyalgia would want you to know.  Lastly, I'm not writing this so people will feel sorry for or pity those with fibromyalgia.  That's not productive or helpful.  We do need understanding.  We need prayer.  We need patience.  We need support.

Meanwhile, I've got to go put more wood in the wood stove. Brrr! :)