the roller coaster of chronic pain

 

I live with chronic pain.  While my husband doesn’t physically have chronic pain, he too has to live with it. He lives with mine. Neither of us got manuals on how to live with this incredibly unfortunate disease, and sometimes that shows.  We think we are in a good rhythm and then our roller coaster cars drop from the highest peak and take us screaming through tight turns and unexpected plunges.

We just want off the roller coaster.  Amen?

From my perspective, here’s where my ticket to ride stems from:

  • I think I can handle more, so I take on more.  And then … I can’t handle it.  I panic.  Then I get sad.  Usually my over-commitment comes in the form of wanting to bring in more money so my husband doesn’t pass out from exhaustion.
  • I feel like I have already given up so much of what used to make up my “normal” life, that I cling to the last few things I do/have until my knuckles turn white.
  • My joy can be depleted on day 3 of immense pain – and then I am a grumpasaurus rex to my family, complete with drooling and teeth baring.

And here’s where my husband’s ticket to ride comes into play:

  • He wants to be helpful but he. is. exhausted.  He is working full-time (and then some for extra money), he cooks, he makes lunches, he does laundry, he cleans, he mows, he does repairs on the house, and sometimes he actually gets to go out with a friend for guy time.
  • He never knows what kind of day I’m having, therefore he never knows what he will be walking in the door to find after work, which is totally not fair and makes him put on a defensive suit somewhere between his truck and the door to the house.
  • He sees my tennis match of emotions (back and forth, back and forth) and he so badly wants me to just figure out that I’m different now and I have to act in accordance with my limitations.

Hold the phone.
I have limitations?

For the love of all things chronic – if you’re reading this and you suffer from chronic pain, YOU HAVE LIMITATIONS!  And guess what, if you’re reading this and you don’t suffer from chronic pain, YOU HAVE LIMITATIONS!

Why do I sometimes think I can do it all?  And I mean all.  It is usually about the time I am half-way through my grocery list in the store when the fatigue slams me, my feet start to spasm, and I have this overwhelming feeling to lay down on the packages of toilet paper on the shelf when I realize — “oh crap, I did it again.”

I want off this ride.
I didn’t ask to ride.
I want this ticket revoked!

Tough circus peanuts.  These are the cards I have been dealt.  I, Ann Skaehill, have fibromyalgia and a weak immune system.  I think it’s fair to say, this roller coaster is here to stay and it’s time for me to grow up and accept it.  I need to appreciate and care for my family FIRST before I fill my schedule with things that make me feel good about myself.  I need to be grateful for medications that can help with a few issues and TAKE THEM.  (Lord have mercy, medication is a whole blog post in itself!)

I’m getting there, but I’m not there yet.  I think if I can embrace this new reality more firmly, then the turns and drops on the roller coaster won’t be so alarming or drastic.  For me, or my husband.

Two days ago my 10-year-old son said, “Hey mom?  You know how sometimes you just get so mad at me for things I do or should have done?  … Well, maybe you can start giving me a sign that I should go in another room.  Why don’t you blink four times and I’ll take off running!”

Ouch.

Reality check.  When I open my mouth to speak, my son is flinching and expecting the worst.  That is a huge problem that I have addressed over the past 2 days with him.  Grumpasaurus rex may still appear from time to time, but I’m working towards her extinction.  Ain’t nobody got time for the damage a dinosaur makes in the modern age.

Today is a new day, and the Bible tells us in Psalm 30:5 that joy comes in the morning.  Embrace your clean slate, and make wise choices today.  First on my list? Washing all the sheets in the house and ensuring my family has good food to eat.  What should be first on your list today?

pain is lonely

Photo from: http://inspiyr.com/chronic-pain-and-anxiety/
Photo from: http://inspiyr.com/chronic-pain-and-anxiety/

Pain sucks.  It just does.  Today was one of those days — and it’s still going.  I tried medication.  I tried stretching.  I tried a neck massage and a back massage.  I tried a nap.  I tried a detox bath.  I tried sticky pain lotion.  I tried more medication.  I tried drinking a ton of water.  I tried moist heat.  And finally I just gave in and accepted the fact that my pain wasn’t going to budge.

Here are some things that make me roll my eyes when I’m in pain.  Some of them might be TMI, but just whatever…. I have nothing to hide:

  • I can’t even bend over to sit on the toilet without my head throbbing or my feet cramping up from holding my weight.
  • It’s hard to connect the eye-hooks on my bra without my fingers cramping up.
  • I clench my teeth in an effort to not frown, which has led to new problems in my jaw… awesome.
  • I’m nauseated but I have to eat to take medications that should help me.
  • My family is loud.  The clock is loud.  The air conditioner is loud.  The fan is loud.  It’s all TOO LOUD!
  • Facebook posts make me roll my eyes.  I’m happy for people and the fun they are having — just not at that particular moment.  (just keepin it real)

Can you relate?

It’s after 9pm and I am starting to feel some relief.  For all you non-chronic pain people, when I say “I feel some relief” it doesn’t mean I’m ready to take a lap around the block.  It means I can walk across the room and get my own glass of water instead of asking for assistance.  There is no miracle drug or therapy or food regimen for me (although being in the mountains seems to cure 95% of my ailments!).  But do you know what gave me joy and was more calming and helpful than any of the things I tried today?

My husband said, “I’m so sorry you’re hurting like this today, honey.”

When he said that, I melted.  In that instant, all of the following things went through my head — and again, if you’re a non-chronic pain person you might not understand where I’m coming from here, but hear me out:

  • Thank GOD, he doesn’t think I’m faking this or think that I’m just lazy!
  • He loves me and he cares about me.
  • He can’t fix this, but it’s ok because I don’t expect him to.

If someone close to you is hurting from a chronic ailment PLEASE do not ignore her pain.  I pray away Satan when I am in pain because he LOVES to whisper lies about me in hopes that I will believe him.  He whispers things like:

  • You’re so lazy, just get UP already and do something!  You’re wasting the entire day!
  • Why do you even bother trying to work?  You aren’t reliable.
  • You’re crabby all the time – you’re going to drive your husband away.

Satan isn’t creative, folks.  He just hits my weak spots and digs right in.  So stand in front of your loved one and don’t let Satan creep in.  Crowd him out.  Don’t attempt to fix everything, just tell her that you see her and you acknowledge that her pain is real.  She knows you can’t fix her pain.  She knows.

Pain is lonely. So don’t let her feel like she’s alone.
All you have to do is acknowledge her pain.
That’s it.

what do you say to the brokenhearted?

 

I am a compassionate person, but sometimes I say really stupid things to people who are hurting.  I don’t intend for my words to be stupid, but it happens.  A neighbor of ours lost her precious 4 year old son in a car accident several years ago.  I was still new in my faith and I only had bits and pieces of it figured out – so I tried to connect the dots on my own.

I don’t recommend that.
If you *think* you have it figured out but you aren’t 100% sure, you might want to check with someone who has been on their journey a little longer than you have just to be certain you aren’t creating a donkey with your connect-the-dots art.  Know what I’m sayin?

The good news is that our neighbor knew that I was genuinely hurting for her and her family.  I cried… often (and ugly) for this family.  She recently told me that it’s indeed hard to know what to say when someone is brokenhearted, but this morning I came across this scripture in a book study I am doing and I think that instead of trying to find just the right thing to say next time, I might just quote the scripture in the picture above.

The Lord is close to the brokenhearted.

Because He is.
He is close to the brokenhearted.

He shows up in family members who come running to be by your side.
He speaks through the countless cards and texts and emails you receive.
He works through the hands of those who come clean your house.
He loves through the hearts who care for your children when you are unable to.
He shows compassion through the meals and groceries that start showing up at your house.

I can’t answer the age-old question of “why”… WHY is this happening?  What did that happen?  Why is God doing this? – because as Jen Hatmaker (you know, my best friend) posted recently, the WHY could be any number of things depending upon the situation… and even then, we aren’t God and we don’t have all the answers.  And this is why we need faith.

We need faith, and we need to connect the dots on our own on a regular basis so that we can SEE God in action — but not the dots I first mentioned.  Instead, connect the dots of who shows up as His representative, who speaks with His loving voice, who allows Him to work through their hands, who loves with a heart like His, and who shows you compassion just as He did for countless people in the 3 short years that he ministered to others on this earth.

That’s your Lord.
That’s how much He loves you.
He is close.
Closer than you think.

(Thanks to my precious friend Anne who shared her inspiring idea of “God Dots” with me this summer – you can see more of her God Dot inspiration by following her here or here.)

re-entering the atmosphere, part 2

I know I am in the fires of life sometimes, but it’s when I let myself believe that I am actually burning-up that I get into trouble.

In the movies when a shuttle or space capsule reenters the atmosphere I am completely amazed and wide-eyed.  It’s burning, but not burning UP.  And then it’s just fine when it gets through to the other side.  I think sometimes I forget that there’s an “other side” to my life struggles.

Photo from http://www.orbiter-forum.com/

Photo from http://www.orbiter-forum.com/

 

Last week I tackled the first of three questions that I would be asking myself continuously if I didn’t have a strong faith foundation.  Here are the three questions:

Is God punishing me? (click link to read the answer)
Did God make all this happen in my body?
Why won’t He take it all away?

Did God make all this happen in my body?  Is He to blame for all this pain and dysfunction?  It would really be great if I had someone to point at and scream at and say, “THIS IS ALL YOUR FAULT!”  But — God is not to blame.

I am going to assume that mostly those with chronic illnesses are reading this post.  And I am also going to assume you have exhausted all testing and physicians to find out exactly why you are sick or hurting and what in the world you can do to fix it.  It’s amazing how desperate we can get for answers.  Been there.  Done that.

I want you to think about the body types of your friends — some are beanpole thin and they eat Taco Bell for lunch.  Some of your friends are apple shaped and have big middles but tiny legs.  Some have tiny waists but have some junk in the trunk.  WE. ARE. ALL. DIFFERENT.  God made us all different — so you can “blame” Him for that at least if you’re really jonesing to blame someone for something.

Why is this important?  It’s important to realize that what might work for patient A, might not work for you.  What caused the issues with patient D, might not be what caused your issues.  Some people can’t tolerate milk.  Some can’t tolerate gluten.  Some can’t tolerate their inlaws … oh wait, that’s another topic completely, and some eat Taco Bell every day and have no issues at all.  (I deleted my inappropriate commentary about these people)

I am not a conspiracy theorist (except for our cat’s impeccable throw up timing — ALWAYS when I am in a hurry) but I can’t help but wonder what in the world is going on in our environment, in our food, in our water, and in technology that is creating more and more medical issues that we just can’t define/see.  Sure there has always been illness, look how many people Jesus healed,  but SOMETHING is causing more and more cancer, and autism, and ADHD, chronic pain, and whatever else…. something.

God’s reign over us is not like an ant bully with a magnifying glass who squashes us with His thumb for fun. God’s reign is actually WITH us, around us, in us, through us … it’s like a big fluffy robe and hot tea … it’s comfy and something you long for (unless it’s 100 degrees in Texas, but you know what I mean.)  Why in the world would He cause harm to the ones whom He created and loves to the nth degree?  If our goal is to be like Jesus, why would He thwart those efforts by making us sick, especially our children!?!?  God does not  – does not – does not go down the list and say, “I think I’ll give Billy cancer today — hey Peter, watch this!”

God is for you.
God is with you.
God is on your side.
If you let Him in, He will THRIVE in you.
He will work through you
And you can feel His peaceful presence!

So why won’t He take it all the pain away?  Stay tuned.

chronic pain is a broken record

Chronic pain feels like a broken record.  You know what’s coming.  But after the umpteenth time you’ve had to take a deep breath in hopes of relieving a muscle spasm … you’re so over it.

I ask God to relieve the pain in my wrists so I can walk through the grocery store with my hands on the cart instead of steering with my forearms.  I ask God to relieve the muscle spasms in my toes that make me walk funny.  I ask God to help me sit up straight and smile, even while the tears are stinging my eyes.  It hurts to sit up straight… but by the grace of God it doesn’t hurt to smile.

You might say, “Great verse, but it doesn’t answer my questions about why God isn’t answering my prayers!”

Are you sure?  I think it just might be answering one of my questions.  WHY ME?  Why am I going through this?  Why is this happening to me?  Why won’t you take my pain away like Jesus healed person after person after person?  I can’t work like I used to, serve like I used to, or DO like I used to!

I believe in this scripture, God is telling me He might not be taking away my pain for a reason.  He is growing my character.  He is growing me as His child, not as a mom or a wife or a friend or even as a ministry leader … He is focused on growing Ann.

It’s my job right now to shush-it, and listen.
It’s my job right now to read scripture.
To learn.  To pray.  To seek.
Because it’s already starting to happen.

He is already starting to use me.  He comforts me in ways I don’t even notice and I use those very things to comfort others.

I am sharing with those who are hurting.  He just might be expecting the same from you.  Maybe He is asking you to be brave, to be strong and courageous, to be faithful no matter what.  Maybe He is asking you to set aside the ways you used to do things and reinvent the wheel – maybe just maybe you were on a path that suited your needs but not His needs.

That’s what I believe for myself.
He is training me up in the way that HE wants me to go.

You better believe I’m not going to stop praying for God to take my pain, if it is His will.  One of my friends prayed for my salvation for SEVEN years, ya’ll.  SEVEN!  She was relentless.  And that’s how I want to be.  Not in a nagging sort of way, but in a way where I know that He is faithful and He loves me – and even if He doesn’t take my pain away, He always gives me SOMETHING.

A kiss on the forehead from my husband.
A text from that makes me laugh.
Encouragement that a choice I made or insight I shared actually made a difference.

After you pray, stop expecting instant answers – like instant oatmeal, it never quite turns out like you thought it would. God can see your entire future and for whatever reason, maybe it isn’t in your best interest to have a microwaved answer.

re-entering the atmosphere, part 1

I know I am in the fires of life sometimes, but it’s when I let myself believe that I am actually burning-up that I get into trouble.

In the movies when a shuttle or space capsule reenters the atmosphere I am completely amazed and wide-eyed.  It’s burning, but not burning UP.  And then it’s just fine when it gets through to the other side.

Photo from http://www.orbiter-forum.com/
Photo from http://www.orbiter-forum.com/

Recently we were in Tennessee for our family vacation and I can’t explain what happens to me there.  It just makes no sense.

I
have
no
pain

No joke.  We don’t know if it’s the elevation or the cool temps or a combination of both (that’s what I think it is, a combination of the two).  It’s blissful.  I feel alive and free from the bondage of pain.  It’s better than pain killers because I don’t have any side effects!  We hiked over 25 miles as a family.  I slept well.  I laughed.  I enjoyed every second of it.

But then I had to re-enter the atmosphere of home.

Coming to terms with my illness (fibromyalgia and an immune system that only functions at 50%) and all of the baggage and life change that comes with it was hard enough to do the first time.  So here’s the next thing I can’t explain — I am having a harder time accepting being “back in my body” this month than I did all of last year.

If I didn’t have such a strong faith foundation (that is still being constructed and I hope to never cease construction!), I would be asking things such as:

Is God punishing me?
Did God make all this happen in my body?
Why won’t He take it all away?

I’m going to tackle the first question in this post, and the subsequent questions in more posts this week.

The short answer is NO WAY, JOSE — that’s Ho-zay for you non Texans —
God is love.  He crafted you one molecule at a time and He knows every single hair on your head.  He gave you the ability to think and feel and reason and love and laugh… and so much more.  You are intricate, and believe it or not you have some of God’s characteristics IN you.  You are made in His image!

If you have a dog or a cat that you just love to pieces – like he is part of your family, ok let’s face it, you talk for him and make it sound like he is speaking.  You know you do.  Imagine Spot making a mistake like say … throwing up on the carpet, repeatedly … you would never wish chronic pain on him because of that mistake, right?  Yes we would love for him to clean it up and sanitize the carpet but we know Spot isn’t capable of that.  He wasn’t created to work that way.  So even though you may be disappointed, you are concerned for his well being and you check on him at least before you yell at him (oh wait, is that just me?).  Oh and PS: Spot is going to puke on the carpet again.  IT’s to be expected.

Am I comparing us to dogs?  Sort of.  But not how you might think I am.  God loves you so very very much that He would never wish chronic pain on you.  Ever.  The God you read about in the Old Testament with Abraham and Moses was completely irritated because we kept “puking on the carpet and not cleaning it up.”  Can you blame Him?  Gross.  BUT, when Jesus died for us on the cross, He took all of our carpet mishaps with Him.  Not a single stain was left behind – the carpet is white as snow.  Yes, white.

If you struggle with wondering if God is punishing you, please believe me when I tell you He celebrates you.  You are the work of His hands.  If you’re an artist of any kind, you can appreciate what it means to make something with your own hands.  It’s kind of a big deal.

You aren’t burning up.
You’re going to be ok.
Your circumstances might completely … well, suck… but there are so many of us who understand what that feels like.
You are not alone.
Ever.

So put some sunscreen on, because we are going to have to learn how to appreciate the burn.

stuck in a grace rut

Photo courtesy of http://www.canadianfamily.ca/

The vacation cycle:

  1. Wow, vacation is close – it will be so great to just be together and enjoy each other’s company!
  2. How on earth am I going to finish all this work before vacation? Is it a problem if we pack dirty clothes instead of clean ones?
  3. I know – we are always late because I can’t juggle it all … WAIT, I forgot my phone charger!  TURN AROUND!
  4. No, we aren’t there yet.  Sure, watch another movie. Yes, I know you’re hungry … again.
  5. Oh yay!  We’ve arrived … I can’t wait to get out of this car and get some distance from you people.
  6. Oh wait, I actually AM excited to be with you people!
  7. Work?  What’s that?  Emails?  Haven’t checked them. I’m too busy laughing with my kid and having great talks with my husband.
  8. I love you guys so much!  This is the best vacation EVER!
  9. When we get home, we are going to change how we do things… no technology nights, game nights, stop saying yes to every commitment, watch our spending, make a weekly menu and stick to it, save for a king sized bed because I don’t know how we have survived marriage this long without one…
  10. Ok, we’re home … tomorrow I have to do this and this and this … guess I’ll see you in passing.

This year we broke the cycle.  Maybe it’s because the three of us didn’t drive 800 miles together on the way there or maybe it’s because we were starved for family time.  Maybe, but here’s what I think happened…

My perspective has changed.  Having a chronic illness has altered perspectives that I used to have, but the biggest one is appreciating what is right in front of me.  It’s SO EASY to get stuck in a rut of focusing on what hurts and how bad and if I need pain lotion or if I can make do without it, or calculating out what things I can/should accomplish in a day making sure I don’t over-do it to create problems for the following day.  Now I try to do the following:

  • allow myself to be honest and assess my pain throughout the day, giving MYSELF grace along the way
  • when I feel myself sliding into that rut, I recite memorized scripture to remind me that God loves me and that I am wonderfully created
  • focus on the things I CAN do and things I DO have, and thank God for those things
  • I am honest with my husband and I don’t hide my frustrations

Transparency and grace are the key components.  My husband and I have given each other permission to be honest and transparent with each other.  Neither of us know how to do this chronic pain thing (our manuals got lost in the mail). Purposefully hurtful statements are not allowed, but honest confessions of frustration are totally game.  There’s no need for anyone to be on the defensive, this isn’t a blame game, it’s a grace game.

We don’t get do-overs.  Every moment in this life counts.  This year we recognized our frustrations on vacation and communicated appropriately about them.  We gave each other space when needed.  We loved more than we bickered.  It wasn’t perfect but it was so much better than last year.  Memories are made both at home and on vacation.   I want to be stuck in a grace rut, because those are the memories I want to remember.

So what kinds of memories are you making?