The Path to Sleep with Chronic Illness

It’s 2 AM, and I’ve been trying to sleep for three hours. The pain is high and unrelenting. I’m propped up on the couch right now because I have so many parts of my body that hurt, and I just can’t get situated comfortably in bed. I’ve been up to pee seven times (Thank you Interstitial Cystitis), refilled my water once and changed out my ice pack three times. My current back/neck pain is also requiring a heat wrap that I have to get situated perfectly to provide heat to exactly the right places.

All of these things cause me to reposition in bed (or on the couch), get the sheets and blankets comfy again, and jolts me awake once more right as I am finally dozing off to dream land. The clock keeps ticking and anxiety sets in as I watch it creep up to the next hour and I count backwards, just how much sleep I think I will realistically end up with before I must get up for work or appointments.

At some point, some way, sleep finally comes before the dreaded alarm clock blares the awful wake up tune.

The experience of many chronically ill patients is that family, friends and coworkers wonder why we are dragging in the morning. Our bosses wonder why we call in sick or ask to come in late. And some times, even our doctors scratch their heads as to why we miss our appointment. But there are moments, when it’s 6am and you’re still awake from a horrible night spent with chronic illness, that all you can do is hug your bed and hunker down for the day. Once sleep finally comes, you just want to stay there for as long as possible, because you don’t know when you will get good rest again.

So, the next time you see your friend with chronic illness struggling to get through their day, buy them a coffee, share their work load, or at least throw a smile their way. Smiles go farther than you will ever know.

3/20/19

Long days

Longer nights

Not sure how much longer

I can push through and fight.

“It’s part of God’s plan”

“It’s all in his hands”

I say through a smile

With Faith shifting like sand.

One illness passes,

Another one looms.

With more tests on the horizon

I just want to hide in my room.

“You’re so strong”

They say often to me.

But these burdens feel like chains,

And I wish I could be free.

Lessons to learn.

Miles to walk.

Faith put into action.

Not just talking the talk.

The prayers that come,

I feel each and every one.

Those nights I cry out,

Screaming that I am done.

So as the night comes

And fears threaten to hover,

I will kick fear out the window.

My prayer warriors work under cover!

One more hurdle. One more jump.

Another obstacle to face.

I will lean in and remember the Almighty,

Who created & prepared me for this race.

January 6, 2018

Here we are, about to finish out our first week of 2018! If this week is any indication of how fast this year is going to go, it is going to be Summer before we know it. How was your first week of the year? Good, bad, filled with sorrow?

I have already had three friends lose loved ones this week. This isn’t how a new year is meant to start. My heart hurts for them. I’ve been praying for peace and comfort for them.

My first week of 2018 was spent with my family in Michigan. Getting to be with my brother and sis-in-love, and niece and nephew, has been such an amazing start to the new year. I’ve been running on much less sleep than I need, but spending days with the kids and evenings with my mom and family, has been worth the dark circles under my 👀! Ha!

I find myself reflecting on the week I had. Which is fitting, because it is exactly correlated with my word of the year.

This year I have chosen “reflective” as my word. I first decided on it in the context of taking time to reflect on the moments happening in my life. Like this week, I have reflected on the time spent with family and what a gift that is to me. I’ve reflected on the pain my friends’ are enduring as they’ve lost loved ones. And I’ve reflected on how the experiences in 2017 can help me build a better 2018.

But I also want “reflective” to be my word that helps me be a better friend, sister, daughter, leader, steward, co-worker…you get the picture. I want good things to reflect off me. A good attitude. A cheerful countenance. A joyful heart. A shining light in a dark world.

What are your goals for 2018?

Sound off in the comments below.

“And you yourself must be an example to them by doing good works of every kind. Let everything you do reflect the integrity and seriousness of your teaching.” Titus 2:7 NLT

January 1, 2018

Happy New Year!! I don’t think I blogged at all in 2017. That’s pretty crazy. Especially considering I had a pretty exceptional year!

Let’s start this first day of 2018 with a look back at 2017. I just enjoyed living life and found myself being a little quieter. My “word of the year” for 2017 was “intentional” and my goal with that was to be intentional with where I spent my time, how my energy, thoughts and actions were used, and to be intentional about how well I loved others.

A huge goal of mine was to pour myself into my passions. After asking God to guide me through this process, he opened up doors for me to join the High School Youth leadership team at my church, at the end of January 2017. What an amazing way to start the year!

A little more than a decade ago, I was a youth pastor. After some rough waters and so much of a story in between, I thought my time in ministry was done. So when God chose to put me in youth ministry again, it was a huge blessing to me. Therefore in 2017 I was super intentional about the time I spent with this youth ministry. I made a commitment to be all in.

I got to speak at their winter retreat, serve in many ways on Wednesday nights, attend high school summer camp in the city (San Francisco, Santa Cruz and San Jose), where I was stretched out of my comfort zone in more ways than one, and go on a one night overnight to a youth conference in the Fall. It was a full year. I look forward to the ways God chooses to use me there, this year.

I was blessed to spend nearly two months with my brother and his family throughout 2017. Some of that was spent in Michigan, and some in California. This included a trip in November for the dedication of my sweet niece, Elise. It was a privilege to be there for that special moment. No matter where we were, we loved each other well. We love spending as much time together as we can. Getting to be part of my niece and nephew’s lives is the best thing ever. My heart bursts with love for them.

The month of May took me on an adventure to Utah as my niece (bestie’s daughter) graduated high school and turned 18 in the same week. It’d been five years since I had gotten to see her or the family, so it was even more special to share that time. I celebrated my 35th birthday there as well. Such a treat to share my day with my bestie, Sarah. It really was one of the highlights from 2017 for me. I had a blast and I can’t wait to go visit again!

Mom and I enjoyed not one, but two, trips to Disneyland this year! We went for Easter so we could see the Electrical Light Parade before it went away. Then we went for mom’s birthday in September. Both were spur of the moment trips pretty much, which in my opinion, adds to the fun! Disney trips with mom are such a relaxing time for me. We recharge, act like kids at the “Happiest Place on Earth,” and create amazing memories.

What was a highlight for you, in 2017? Did you have a “word of the year”? Tell me in the comments below!

I have been through a lot through the years with my health. One would think that I am used to doctors and poking and prodding…and I am to a certain extent, but that doesn’t mean that it still doesn’t affect me. It does. There are days and times that it affects me more than others. Some days/appointments I am prepared for anything and I do not let it phase me. There are others when I hear “come across the hall, we’re going to move rooms; doctor wants to do an exam” that send me into a tailspin. Usually not right there on the spot. In the moment I play “Super Diane,” put a smile on my face and graciously say “Okay.”

It is after the appointment that I start to fall apart. Tired of the poking, the prodding, of one more invasive exam. So desperately wishing I could hide out for awhile and wishing that magically everything would be okay. I try to reward myself after appointments with something fun. Some treat I’d like to have, a small purchase off my “wish list” or a nice drive out in the country. Something to overcome the drudgery that my doctor visits have become.

This past week I developed a blood clot after some injections I had to have ruptured a blood vessel. I knew instantly something was wrong. Daily appointments to check on me, personal phone calls from my doctor and five days on bed rest brought the good news that the clot reabsorbed itself. But I am having lasting spasms where the injections were, along with nausea and lethargy. I am longing to feel like myself again. While I daily live with chronic pain and illness, this past week has been the icing on the cake, and it isn’t sweet! I don’t want to have to “bug” my doctor again, even though he has assured me I am not bugging him and he will see me through this. But if I am not feeling more like myself in the next 24 hours, then I probably won’t have a choice, because I can tell that something still isn’t right. I should not be this tired with residual pain still. I attempted to put myself together this evening and go out. I got as far as getting myself ready to go, and then landed back on the couch in the fetal position. I am tired of pain and tired of being tired.

That is my update for now. It’s more for me than anything, but thought I would post it just in case anyone was wondering if this blog was going to cease to exist. I will be back!

September 10, 2015

So I’ve been absent again from the blog. I actually have so many fun things I should write to share. But right this moment I need to write about illness. As I’m struggling and it’s on my heart. Here’s my thoughts…

Umm. So I’ve had an extremely rough night. I’ve barely slept. Hurting from head to toe. So confused as to what to do. Chronic Illness is a huge battle. If a “normal” person felt this way they’d absolutely call/go into their dr. But for patients like me, we pretty much just hunker down and try to fight thru it, knowing your dr will be little to no help. It’s super hard to have multiple issues going on at once, waiting for specialist appointments, and in the meantime trying to just see your primary care physician and explain your every ache and pain and just wanting some help getting relief. 

Right now I’m in a constant state of stomach pain and nausea, and about 90% of the time in severe pelvic pain from the endometriosis and interstitial cystitis. And then now I’m having a whole body flare of pain from head to toe (possible fibromyalgia or RA).

When you have this much pain going on you literally can’t sleep and it’s just easier to get back up and try to keep your mind busy and distracted from every pain. I’ve taken all the meds I can for now with little relief. 

I say all of this not for attention, but to hopefully open people’s minds to others suffering. It’s my hope that my story can help healthy people support and understand those less fortunate (health-wise) and bring support and encouragement to others walking through health trials as well. 

I’m off now to attempt for some more rest. 

Happy August! Seriously though, how in the world is it August already? Summer has flown by and I can hardly believe that soon we will be ushering in the Fall season. But before we race too far ahead, let me tell you the highlight of my summer! That would have to be visiting my brother, his wife, and my most precious nephew!

  
I’m currently flying home after spending two weeks in Michigan with them. Getting a good stent of concentrated time with my nephew, Dray, was awesome. I did what any good aunty does…spoiled him rotten. 😄 But also took my share of nightly feedings, nap time readings, and solid food feedings and all that good stuff. I loved the precious moments with Dray and enjoyed letting his mama get some extra sleep while I was visiting. My mom was out on the trip with me, so of course grandma got her special time too and took her share of nighttime routines as well. (Truth is, we secretly enjoyed the extra snuggles in the night, when the house is quiet.)

  

All of us adults enjoyed playing rousing games of Hand and Foot, Canasta, and Dutch Blitz each evening after the baby went down for his sleep. We can never get enough of games and often sacrifice hours of sleep each night to play “just one more hand!”

  
Life is good! I had a blast, and can’t wait until we are back together again.

   
    
    
    
 

It’s July 16th. Nearly seven months since my precious nephew, Dray, was born. I got to see him for a few days in March when my mom and I met up with the family in San Diego, but now it’s been almost four months since we have seen him and that is just far too long! 

  
  
But that’s about to change, because I’m currently on an airplane, sitting next to my mom, and we are headed to Michigan! Move over everyone…Aunty and grandma are coming! Prepare for a spoiling overload and lots of picture perfect cuteness to come!

June 24, 2015

I’ve been silent for many months here on the blog and I keep trying to figure out why, if I love writing so much, why do I have this long hiatus of writing? I have yet to figure out the full answer but a big part of it is this: life is so crazy busy, that by the end of the day when I have space to be quiet and think, my brain capacity to write a thoughtful post just isn’t there. But I’m trying. Going to try to get back into the swing of things. 

At the beginning of May my mom had foot surgery for a torn Achilles’ tendon and because of this can’t walk for twelve weeks. She’s getting around on this:

  

So this has left me with taking care of her. The bulk of everything for both our lives is on me. This would be difficult on anyone, let alone on me, who is struggling still with health issues and procedures of my own. I’ve still been working part-time, doing Girl Scouts and attempting to “keep my head above water.” 

  
I promise you that my head space is filled with thoughts I want to spew out on paper and share with the world. I just need to figure out how to make it happen again. I hope you will stick with me. I’ve missed my blogging world! Drop me a line in the comments and say hello!

Hello ladies! A big thanks to everyone who participated in our give-away. And a huge thank you to our sponsor, Seaview Jewellery. They graciously donated a beautiful necklace and charms to give away to you awesome folks! The charms can be put on a keychain or zipper pull as well as a variety of other places. 

Congratulations to Mellisa Mosey for winning this amazing necklace:

 

Congrats to Vicki Shiger for winning this charm:

  

And congrats to Jenny Sanchez for winning this charm:

  

Please message me your address and your prize will be mailed to you!

Don’t forget to link up with us on Monday for our final give-aways.  Seaview Jewellery is once again donating items as well as our other business sponsors FJJ Creations and Tabatha’s Creations. 

We look forward to wrapping up one more incredible year of blogging for Endo Awareness!