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! :)

For the forseeable future - NO!

I bang a drum pretty regularly.  I say "don't complain!"  The reason I do this is that I regularly want to complain.  So I have to regularly tell myself not to.  I know it gets old.  I also am starting to realize that some people think that if I'm not complaining, I must be fine.  I am NOT fine.  I have fibromyalgia, every day, all the time and it sucks.  That's just life.  I rarely cook, I don't clean, it's a good day if I can read a book to my children.  Just because I'm not complaining, that doesn't mean I'm all good and you can ask me for a favor.  I don't want to sound selfish, but NO.  See what happens is this - You ask me for a favor (which you think is really minor because you are a healthy person), and now I am in conflict.  I don't want to say no. I care about you, I want to help.  That means giving energy I don't have to do something just because you asked.  I can't say no without overwhelming guilt and frustration.  Overwhelming guilt and frustration can cause a flare in my symptoms.  That's not you, it's me.  I don't deal with conflict and stress well, which is probably what triggered my fibromyalgia in the first place.  Like I said I don't want to sound selfish, and I'm certainly not singling anyone out because, you know who I have the hardest time saying "no" to?  Myself.  My crazy expectations, which include your favor.  I'm your friend, so I expect to be able to help you with whatever little thing you need.  Good expectation, but wrong for me.

So here's the deal - don't ask and I won't have to say no.  Right now things are especially bad, so maybe instead of asking me for a favor, you could do something for me.  Or someone else who has a real need.  Don't ask my husband either.  He takes care of all of us and works.  He won't say no.  It will cause stress in his home.  Seriously.  He's a nice guy, but he has a million things to do.  Maybe you could offer to do him a favor.  It's another drum I bang on - surely you know someone who is sick, elderly, overwhelmed, pregnant etc. . . who could use a blessing.  Bake some cookies, make a meal, give a gift card, or just send a note of encouragement.  Small things sometimes mean the most.  Yes, that was a rabbit trail. 

Please don't ask me for a favor. There is one major exception.  No matter what time day or night, happy or sad, big or small, I will pray for you.  Not because it requires nothing (it actually requires quite a bit of mental energy and focus), but prayer is one of the thing to which I will gladly surrender my meager energy.  It's good for me, it's good for you, and may God be glorified.

One last thing - if you ask me to do something and I manage to say "no," please realize it's because I care about you.  Taxing myself for someone else's favor causes resentment and frustration.  It damages the relationship.  So, my refusing is actually a loving choice.  I know it doesn't "feel" true, but it is.  At least that's what I keep telling myself.

My fibromyalgia won't always be this bad.  I go through times when I can do more than I'm doing right now.  Of course, I always hope my doctor will come up with something miraculous.  But for now, it's really bad.  I always learn something during this time, and this time I may just have to learn how to say "No."

Serving

I've been thinking a lot about *charity.  I won't say why, because my reasons are entirely selfish and wrong.  So I disregarded the why, and went with the how.  In January of 2013 my husband and I decided that we'd like to find a way to serve.  By "we" I mostly mean me.  In my situation, it's very easy to become cut off from friends and family.  I often feel disconnected from my church.  So we decided that one way to combat this would be to find some way that I could minister to others.  I have often said that the best way to get out of yourself and combat self pity is so help someone else.  So we decided that once a month we would deliver a meal to family that might need it - for whatever reason.  We prayed about it, and amazingly enough we always seemed to have the same family in mind.  Not to give us any credit though, because many months were for someone who just had a baby.  We are in that kind of a church.  Lots of babies.  Lots of opportunities.  Lots of growth.

It was great, but we got a reputation.  We made stromboli.  This was a bad choice (and an awesome choice) on our part because stromboli is the thing that Derek makes.  So instead of my ministering, it became one more thing for an already swamped Derek to do.  He didn't mind, of course, but by December we decided that we were done with that plan.

So a new year is upon us and I am again looking for a way to minister.  In an ideal world I would be able to teach junior church, VBS (oh how I miss VBS!), bake cookies, go to ladies activities, etc. . .  In MY ideal world.  My ideal is wrong though.  Even though those are all excellent things, they are wrong for me because that's not what God has planned for my life.  He has something better whether I choose to see it or not.  I'm not entirely sure what ministry God has for me this year.  I have some thoughts, but nothing concrete.  Please pray for me as I figure it out.  For now, I will do what I know.  I will pray for my friends and loved ones.  It doesn't feel like much, but it really is the greatest thing you can do for someone else.  Every time you pray for someone you grow to love them a little more.  It's the best thing I can do for my marriage, my children, my family, my church, my friends, and the world around around me. 

Here's my challenge - find a way to minister this year.  By minister I mean helping others.  Volunteering.  Do a meal once a month, it's that easy.  Not just for others, but for the good that is does in you.  Just once take some kids to the park so their mom can take a nap.  Help at an animal shelter or food bank.  Just once.  It changes you.  It helps you.  The best part is that you won't even notice because you'll be too busy thinking about someone else.  

I'm excited about the prospect of serving this year.  I'm excited to be able to help someone.  I don't know just how I'm going to do that yet, but I know that God can use me.  If God can use me, He can use anyone.  You want 2014 to be an awesome year?  Let God use you.

God is good, all the time.

*By charity, I mean love.  I mean helping.  I mean serving.  I mean a love that is active, not passive.  Love that gives, helps, does, and serves.  I do not mean pity.  Charity and pity are not at all the same thing.  I do not mean money either.  Monetary gifts are only one small part of what charity really means.