i’ve been robbed

This week my doctor told me she wanted to me to rest.  Seems simple enough… so why do I struggle to do that?

Maybe if my room looked like this I would actually rest in it:

Yes, I totally pulled that off the web — and the website knows it’s a great looking room so much that I had the pleasure of embedding their advertisement as well as their photo — that’s fair I suppose.

Why do we struggle to rest?  I know I’m not the only one.  Maybe you work.  Maybe you’re a stay at home parent (which is also work, by the way), maybe you volunteer in multiple areas and your phone never stops ringing, maybe you teach and people are counting on you to show up, maybe you don’t have any sick time left, maybe you struggle with depression and when you rest it makes your depression worse, maybe your sheets are dirty (just keeping it real)…. there are so many maybes.

So what’s MY problem?  I have a feeling my chronic illness buddies can relate.

I feel robbed.
There.  I said it.

Already I have changed so much of my lifestyle and I have set really healthy boundaries for myself.  I limit my activity level so that I don’t run my body down — and when I say activity level this is what used to consume my life:

  • volunteering at my son’s school
  • volunteering and working for our church
  • running errands for my family
  • doing the laundry / sheets / towels
  • making sure dinner was prepared each night so we weren’t eating out often
  • having lunch with friends / hanging out with friends / running errands with friends / having coffee with friends
  • crafting / scrapbooking
  • bike riding and going for 4 mile walks
  • working in our yard and tending to the beautiful flowers and plants my mother-in-law helped me plant
  • going to and leading a bible study group
  • going to potlucks and cookouts with neighbors and friends
  • setting up Care Calendars for families who were going through rough times
  • attending all the fun things up at our son’s school / and our church

These are not BAD things, right?  So when I had to become incredibly strategic in knowing how many spoons I realistically had available each day, it was clear I didn’t have enough spoons for all of these things anymore.  I like to describe it as my life pie.  I pretty much cut that sucker down the middle and had to “get rid of” half of my life pie.

So here I am with my remaining half.  And I feel pretty good about this remaining half most of the time, because I know it’s healthy for me and I don’t feel nearly as run down and ill as I used to.  Until I got this crazy virus last week.

I.
Cannot.
Sleep.
… because all I do is cough, and blow my nose, and cough, and take medications, and drink water, and go to the bathroom, and cough.

But my doctor wants me to rest.  And all I can think about is that half-pie life of mine that’s just sitting there.  I’m not sewing and making any money to help with the things that are falling apart in our house.  I’m not figuring out dinners.  I’m not able to go to the grocery store.  I barely make it through the carpool line each day.  I’m not raking the leaves in the yard.  I’m not doing the laundry.  I had to bail out of a theology class that I REALLY wanted to take.  I’ve missed three weeks of church and serving at church.

I want it all.
But if I can’t have it all, GIVE ME BACK MY HALF!
I’m bitter.

God sprinkled my bitterness with some of His sweet sugar this morning when in the midst of my bitter-party I opened my bible app to find this verse of the day:

And whatever you do or say, do it as a representative of the Lord Jesus, giving thanks through him to God the Father.  Colossians 3:17 NLT

Dude.  I was NOT representin’ today.  And I certainly wasn’t giving thanks today either.

Here’s my prayer for me — and for you — on the days that I have to shelve my half-pie life because it’s important in the moment:

God, thank you for knowing in advance that giving me everything I want just isn’t good for me.  Just like I don’t give my child everything he wants, you protect me in the same way.  I am so sorry that I haven’t been thankful for the generous serving of life that you have given me.  Please forgive my selfish behavior. I don’t like feeling bitter, Lord.  Thank you for showing me the verse from Colossians this morning, it reminded me that peace really can be found in your Word.  Please help me turn off the scrolling to-do list in my head and appreciate the opportunity to be still and rest, even if my sheets are dirty.  I want to be your representative here on earth, and I can’t do that when I am spewing bitterness left and right.  Doing your will doesn’t require a cup of bitter along with a pound of love.  Thank you for loving me and for helping me set my mind and heart back on You.

Amen.

 

{human barometer}

One of the most annoying things about chronic pain is that it’s incredibly difficult to find joy in the changing of the weather.  It doesn’t matter what kind of front is moving in because they all cause pain.  When that barometer moves, oh baby, I feel it.

Recently I was sitting around a table with some women from church as we worked on some assembly line packaging for an upcoming event.  We soon realized we were the chronic pain table.  Apparently we gravitate toward each other!  There was a woman who has already survived cancer, (only to have it again), a woman who had to have a crazy/intense jaw reconstruction, a woman who had back surgery to fuse part of her spine and REMOVE her coccyx, and me.  Before you have pity on us, it was actually refreshing to be around a group of ladies who “get it.”  They live it in my world (and so do their families).

After we joked about all of our medications, someone said, “have you been in pain since Saturday?”  Without a break in discussion, everyone pipped in about how awful their Saturday had been, myself included.  Another lady said, “my husband thinks I am crazy because I can tell when the weather is about to change.  He even looks at the weather online and tries to argue with me about the impending doom.”

So it isn’t just me.
We are all human barometers!

Even the local news did a piece on if people can truly feel the weather changes that are coming – and the “experts” agreed that yes, people with all sorts of medical issues or old injuries can literally feel something before a front moves through.

I don’t know if this helps you understand someone in your life who struggles with chronic pain, but I do hope it helps you realize that Aunt Margaret isn’t crazy – and she hasn’t been all these years.  She really does feel the weather change in her knees!

We don’t mean to be irritating meteorologists, I promise.  And we don’t mean to talk about our “flair” all the time either.  When we constantly have physical aches and pains it’s like sitting down in a chair at a Metallica concert and trying to talk about the rose bushes you planted yesterday.   Some days our pain is just too loud to focus on other things and we would LOVE your help to remind us that just because we are human barometers, we don’t have to talk about it all day long.

Please have patience with us.  Remember that our head-banging pain concert is stuck on repeat and sometimes the best distraction is quiet conversation, a funny movie, or even a nice drive together in the country.  When the pain concert is loud, it’s not the time to recommend they put their big girl panties on and go for a walk.

We know you mean well.
We know you want to help.
We know that exercise is good for us.

But please have patience with us.

Is there someone in your life who is a human barometer?  What frustrates you the most?

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?

united we argue

 

Last week I got that call that every mother dreads… the school called to tell me that my son was injured and needed to go to the doctor.  Turns out he tried to display some fancy footwork with a soccer ball and it backfired on him resulting in a full blown head bash into a brick wall.  I know, we don’t do anything simple around here – we like to keep my husband on his toes.

I don’t typically panic when my son is hurt or having an asthma attack – I’m very calm and careful to drive the speed limit and so on.  But there was one major problem on this particular day.  I didn’t have a car.  It was in the shop.

No problem, I texted my husband and said, ” I need you, please call me right away… I am ok.” —> I’ve made the mistake of freaking him out before with a vague text so now I know to include “I’m ok” in there so he doesn’t send squads and ambulances to the house!

He called back all frustrated at me and had an … “elevated” tone in his voice, “I’m BUSY — what is it?!?!?”
“William hit his head at school and he needs to get to a doctor.  They think he might have a concussion.”

His next response COULD have sent me into an emotional spiral — but because I know how much he loves us AND how critical is position is at work — I was able to take it in stride.  He said, “You’re going to have to figure it out – I absolutely CANNOT leave at this moment in time. Keep me up to speed via text, I can’t answer my phone again.”

This is where I am reminded that when we got married over 13 years ago, we UNITED together… which means we have each other’s backs.  Even when tension is high, if I am sick, he is busy, or our son is throwing an all out fit… I know deep down he isn’t being mean and hurtful and he knows the same about me.

But that doesn’t mean we don’t need helmets sometimes when we go head to head!  I’m no June Cleaver!

Our amazing neighbor was kind enough to take me to the school, and then drive 20 minutes in the opposite direction to get my car.  I talked to the doctor and it turned out that we had to go to Children’s Hospital.   I kept sending updates to my husband via text and he barely answered at all.  But to my surprise, my husband came around the corner with a smile across his face just as we got out of the car

I knew he would get there as soon as he could and I returned the smile.  All focus was on now on our kiddo, just as it should have been.

But – can you imagine how differently the scenario could have played out had I taken his words personally and carried around my offended carnage that afternoon?  When he showed up at the hospital “united” isn’t exactly how we would be feeling.

In the end, all that mattered was that our son was just fine and after about 4 hours it was as though he just snapped out of it and was back to laughing at his own farts (a sure sign that your son is back to himself).  As my husband and I waited hand-in-hand at the hospital he was able to tell me about his day in a non-defensive manner and I could see EXACTLY why there was absolutely no way he could have left the very moment I called.

That night we went to check on William after he zonked out and he said, “I’m so sorry I couldn’t be there today – it was stressing me out that I couldn’t leave!”

And without any disdain I was able to say, “I knew you would get there as soon as you could!”

Are all of our interactions as grace-filled as this one?
HECK NO!  Oh my gosh —- just… no.  And for crying out loud please don’t put me on a pedestal because with my history I will fall off and break something!

This is as much a reminder to me as it is to you — that when you’re married, it’s your responsibility to be UNITED. Even if it means setting your frustration to the side so you can see the whole picture.

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.

laughter overshadows pain

image

This was a rough week.

If you have chronic pain you know what I mean.  I’m not talking about a stiff leg or a headache that is cured by a dose of ibuprofen.

I’m talking about not being able to turn my head to one side.
I’m talking about a headache that lasts over 11 hours and makes you nauseous all day.
I’m talking about not being able to hold your coffee cup due to cramped fingers.
I’m talking about feeling alone and terrified inside a body that fails you on a regular basis.
I’m talking about not wanting to smile or talk because it takes effort.
I’m talking about wishing your family would stop talking because the pain is loud.
I’m talking about pain.

A long-time friend asked if we could have coffee together one morning this week and I was elated to schedule that appointment!  But then it started.  Twitching in my shoulder.  Fingers acting a little cray-cray.  A twinge of pain up the back of my head and down the front of my face.  And boom.  Enter debilitating headache stage right.  The morning we were supposed to have coffee, I couldn’t turn or tip my head to one side – and I was late.  Typical.  My pain even robs my ability to be accountable and reliable.

I showed up, and was uncomfortable, but glad to see her face.  And after about 10 minutes the coolest thing happened.  I was so engaged in our conversation that I didn’t even realize I was talking and laughing and … I forgot about my pain.  It was still there — I still couldn’t turn my head! — but I didn’t CARE that it was there.

Our laughter overshadowed my pain.

My toes locked up while we were laughing — so I stretched them.  I had nerve pain down my arm and back while we were laughing — so I changed positions in my chair.  We sat so that I could turn my head and talk, no big deal.

I know what you’re thinking, “but my pain is SO BAD that I just don’t even want to go see friends!”  and let me tell you that I have sang that verse so often that I had started to believe that I am incapable of keeping my friendships alive.  But that’s all pain talking.

You are not your body, you are the living soul inside of your body.
You are not what your body is or is not capable of doing.
You ARE a good friend because you care, not because you can or can’t take someone a meal.

Get up.  Take a shower.  Make your bed.
Then call a friend and strike up some laughter… it just might overshadow your pain.

 

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.