Category: chronic illness

I’m Tired

Today has been a rough day filled with pain. All of my days are painful, but I don’t understand why some are worse than others.

Ya’ll, I’m tired. I’m tired of hurting.

Today has been a rough day filled with pain. All of my days are painful, but I don’t understand why some are worse than others.

I’m tired of hurting. I have done research, and some of it suggests that this issue will suddenly go away. That’s what I am praying for. Others have said it stays with them for years. That I can’t handle and won’t even think that into fruition.

Otherwise, today has been all about the beginning of college football. I glance at it occasionally, but John is really into it, and I like the sound of it. Plus, it means Fall is on the horizon, which makes me very happy.

Today Has Been An Okay Day

Today has been an okay day. I’m taking a course to help build my blog so that has kept me busy.

Today has been an okay day. I’m still in quite a bit of pain. Typing this is hard because my hands and fingers are numb.

I’ve been taking a Skillshare class on organizing tasks for launching a course, but I’m applying it to my blog. I’m learning a lot and am looking forward to applying what I’ve learned. I really want to make this something that will share my health experience, but also I hope to help other people experiencing the same thing. I know I’ve already written about that.

I have been pretty unproductive today, except for researching blog stuff. I slept late, as usual. This disease is so baffling. I try to move about my day, but I am not that successful. John is doing everything to run our life — laundry, dishes, cats, etc. I am very thankful for him, but struggle with feeling so guilty that he is doing everything. Truth be told, I can’t really do much of anything. I can barely get myself to the bathroom and back. It is incredibly frustrating for me, but I try to give myself grace. I’m hopeful that this will not last forever, and I can get back to my life and routines.

Laughing Through the Pain: Why Humor is My Secret Weapon

Life with chronic illness can be messy, but laughter is my not-so-secret weapon. From rollator mishaps to cat side-eye, here’s why humor keeps me going.

A Funny Moment
The other day, I tried to gracefully shuffle my way from the couch to the kitchen with all the poise of a ballerina… except my rollator squeaked like a rusty grocery cart and my pajama pants got caught on the handle. Picture it: me, tangled up, half-laughing, half-grumbling, wondering if Cirque du Soleil might need a new act called “The Clumsy Chronic Illness Chronicles.” Spoiler alert: no applause, just my cat staring at me like I’d lost my last marble.

How Humor Helps
That little disaster could’ve left me frustrated, but instead, I laughed until my face hurt (and honestly, that’s the best kind of pain). Humor doesn’t magically take away the nerve pain or the fatigue, but it does shift the spotlight. For a moment, I’m not “the patient” — I’m just me, cracking up at life’s ridiculousness. Laughter is like a tiny reset button. It lightens the heaviness and makes room for joy, even in the middle of all this mess.

The Encouraging Takeaway
Living with chronic illness can feel like slogging through mud while juggling flaming bowling pins. But if I can find even one silly moment to laugh about — whether it’s tripping over my own shoelaces or getting schooled by my cat’s judgmental eyes — I feel a little stronger. Humor doesn’t fix everything, but it softens the edges. And sometimes, that’s enough.

So here’s my pep talk to you: find one thing today that makes you laugh, even if it’s just a bad pun or your dog’s weird sneeze. Let that laughter carry you, even if just for a few steps.

How about you? What’s the last thing that made you laugh despite it all?

“You Say I Am Strong When I Think I Am Weak” — A Love Letter to Hope

Today I want to talk about something that’s been speaking to my heart in the quietest, yet most powerful way: the lyrics from Lauren Daigle’s You Say—especially the line, “You say I am strong when I think I am weak.”

Hey there, beautiful soul—welcome back to Unsteady Grace. Today I want to talk about something that’s been speaking to my heart in the quietest, yet most powerful way: the lyrics from Lauren Daigle’s You Say—especially the line, “You say I am strong when I think I am weak.”

When Weakness Feels Overwhelming

If you’re walking through an illness journey like I am, pain circuiting through every part of your day, it’s easy to feel like the strongest version of yourself is miles away—or even unreachable. You might wake up feeling fragile, limited, or defeated.

I get you. Some days, things that used to be simple—getting dressed, taking a shower, making a meal—feel like climbing Everest in flip-flops. And it hurts more than the physical pain—the invisible doubt, the ache of being less than who you used to be.

“You Say I Am Strong” — A Voice of Truth

That lyric—that glorious contrast between what you feel and what someone who loves you sees—hits differently when your body doesn’t cooperate the way you need it to.

Lauren Daigle says the song You Say is her reminder of identity, particularly during moments when she felt scattered, insecure, or in the low after a high. It’s her truth-tether: “When I’m weak, He’s strong.”

This song was crafted out of that tension—doubt, confusion, and a frayed sense of self—balanced by the encouragement and vision of something greater. It’s an invitation to say, even when life is fragile, you are strong in the eyes of someone who truly sees you.

Why These Words Matter to Me

Right now, I feel weak—a million little things weighed down by pain, fatigue, and limitations. But then, my rock of a husband whispers, “You are stronger than you know.” It’s his gentle encouragement that grounds me—the contrast is real, and it is everything.

In that moment, when reality says weak, love says strong. That single line becomes a lifeline. A whisper that maybe, just maybe, there’s a version of me that can still hold hope, even if today I can’t lift my own weight.

Grace in Every Type of Grace

  • Emotional grace—recognizing that healing isn’t just physical. It’s a messy, heartfelt journey.
  • Spiritual grace—holding onto a deeper truth—that your identity isn’t defined by your ability to do things, but by how you are seen and loved.
  • Relational grace—having someone who calls you stronger when you can’t call yourself that.

It’s okay to feel weak. It’s not okay to believe you’re defined by it.

A Tiny Affirmation for You

If you’re here because today feels a little too heavy, you’re doing your best in a battle that most people will never see. That makes you braver than you realize.

Let this lyric be your anthem:

You say I am strong when I think I am weak.

Let it sink in, little by little. Let it be carried forward by someone else’s unwavering belief in you—your husband’s, a friend’s, or perhaps, in the quiet spaces between, a whisper of faith.

Wrap-Up & Virtual Hug

Pain doesn’t define you. Your capacity to feel deeply, to endure, and to—against all odds—keep going, does. Every soft step forward in the face of suffering is heroic. You are strong—maybe not in the “I conquer mountains” kind of way—but in a softer, more resilient way that’s just as courageous.

You are not alone, and you are not weak.

Sending love, grace, and a sturdy dose of hope.

Here is a link to the video on YouTube: https://www.youtube.com/watch?v=sIaT8Jl2zpI

So, What Is CIDP?

Living with CIDP means my days are a mix of wobbly steps, missing finger signals, and unexpected victories—like actually managing to pour tea without flooding the counter. Some days I lean on my rollator (aka Bluey McRollface), other days I lean on humor. Either way, I’m still rolling forward—with unsteady grace and a grin.

CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy. Yep, that’s a mouthful. But here’s the simple version: it’s a rare condition where your immune system, which is supposed to protect you, gets a little confused and starts attacking the covering around your nerves. That covering is called myelin, and it works like insulation on an electrical wire—helping signals travel smoothly from your brain to your body.

When the myelin is damaged, those signals get scrambled. That’s why people with CIDP often deal with tingling, numbness, weakness, or trouble walking. Things like holding a coffee cup, buttoning a shirt, or taking a stroll can suddenly feel like a big challenge. This is what I experience every day, all day, lately. It’s rough!

The good news is that CIDP can be treated. Doctors usually use medications that calm the immune system down, and physical therapy can help keep muscles strong. I had immunotherapy in the hospital and take medications every day. I start physical therapy again later this month. It’s not a one-size-fits-all journey, but some tools and treatments make life with CIDP more manageable.

This is a difficult journey, for sure, but it is made a bit easier with medications, devices to help me with everyday tasks, and the unending support from my husband, John. I am so thankful every day.

Foot Massager Added To The Arsenal

Today has been another rough day, just like the previous days. I hurt all the time, no matter what I do. But I’m taking it minute by minute. Just breathe through it, Sharon, is what I keep hearing in my head. So that’s what I’m doing.

I used another device that John got for me. It’s a foot massager mat. I used it on my feet, but couldn’t really feel it because they are numb. I still used it for the recommended 20 minutes, thinking that maybe that would wake up my nerves and muscles. I also used it for my hands, and that was so good. I can actually feel my hands and fingers right now. There is still pain, numbness, and tingling, but it’s not as bad. I know I’m going to be using that a lot.

There’s really nothing else for me to talk about. I’m either on the couch or in bed. I try to keep up with what’s going on in the world, and visit Facebook to see what’s going on with my friends. Several have been so supportive since I posted about what’s going on with me. That’s really comforting.

I think that’s it for now. I know it’s short, but that’s just all I can do right now. More later.

What The Heck Is Guillain-Barre Syndrome?

Hey friends—Sharon here, bringing you a little health lesson that’s both eye-opening and oddly graceful in its own way. Today, I’m talking about Guillain-Barré Syndrome (GBS). No, it’s not a fancy French pastry. (Though I’d argue there’s nothing wrong with a buttery croissant on a rough day.)

I’ve been hospitalized by this twice this year alone and still have pretty bad effects to this day.

What the heck is GBS?

GBS is a rare autoimmune condition where, for reasons that remain puzzling, your immune system decides to accidentally attack your own peripheral nerves—the ones outside your brain and spinal cord. Think of it like a security system gone rogue, misidentifying family members as intruders and causing chaos.

These nerves are responsible for movement, touch, temperature, and pain. So when they’re under attack, you start feeling tingling or weakness that usually begins in your feet or legs and slowly travels upward. Sometimes your face, arms, or other areas can get involved, too.

Thankfully, I have not experienced this farther than my forearms, and I pray that’s where it stays.

Why does GBS happen?

The short answer? We don’t totally know—and that’s the frustrating part. GBS typically pops up after an infection (like a stomach bug or respiratory virus), and occasionally after a vaccine—but the risk from vaccines is still far lower than the risk from infections themselves. I haven’t had any infections that I’m aware of, and I did have the COVID-19 vaccine a few years ago. This honestly came out of nowhere.

How scary is it?

GBS can ramp up quickly—over days to a few weeks. In some cases, it can be severe enough to affect breathing muscles, and even heart and blood pressure regulation—yeah, it’s serious enough to earn a spot in the ICU. (World Health Organization, Hopkins Medicine, Wikipedia, Cleveland Clinic)

For me, I think it came on over a few weeks, but I didn’t realize what it was at the time. I just knew that I hurt in my feet, legs, and hands.

But here’s a bright side: with early treatment—like immunoglobulin therapy or plasmapheresis—many folks recover fully or nearly fully. Recovery can take months or even a couple of years, but most go on to walk again and resume their lives. (Verywell Health, Hopkins Medicine, Mayo Clinic, Health, Wikipedia)

I had the Immunoglobulin therapy each time I was in the hospital. It’s a five-day treatment, that’s why I was in the hospital for so long.

A little Sharon-style twist to end on:

So yeah, GBS is like that rogue, well-meaning auto-correct that turns “heart” into “hart” and suddenly you’re in a medieval hunting lodge when you meant to tweet love. But here’s the silver lining: with the proper care and patience, it often corrects itself—and you come out wiser, stronger, and maybe with an unexpected appreciation for your toes. That is what I am counting on.

Hang in there, I try to be kind to myself, and try to remember that my body is acting like an over-caffeinated intern, maybe it’s my immune system just trying to make things… interesting.

Wobbling Into The Woobles: My First Crochet Adventure

Today was an okay day. I’ve been in pain — manageable in the morning, but by afternoon, my hands start complaining, and walking even short distances (like to the kitchen or bathroom) kicks things up a notch. My hands, especially, have been feeling it lately. Still, I’m trying not to let it get me down.

One thing that definitely lifted my mood? My Woobles package arrived! For those who haven’t heard of them, The Woobles creates beginner-friendly crochet kits that walk you through making your own adorable little animals — no experience required. Each kit comes with everything you need, plus super-clear video tutorials that make it easy and (dare I say?) fun.

I’m starting with Nico the Cat, because of course, I am the Cat Mom. My hands aren’t thrilled about a crochet project right now, but I’m looking at it as both a fun challenge and a way to give my fingers some gentle exercise. Plus, the Woobles kits are so cute, it’s hard not to want a whole menagerie.

If you’re curious, you can check them out here: thewoobles.com. They have everything from penguins to bunnies to dinosaurs — basically a small zoo you can make with yarn.

Tomorrow, the adventure begins. Fingers crossed… literally.
Stay tuned to see if Nico the Cat turns out picture-perfect — or if he ends up looking more like Nico the “What-Exactly-Is-That?” 🐾

Helpful Equipment I Use

John has been so helpful to me. He has purchased or rented the equipment I need, even before I knew that I needed it. I use them every day, and they have allowed me to move around my home almost as if my legs were not hampered by the CIDP. Here is a list of what I use.

I want to add links to each of the products below, but that is taking a while. I’m going to publish this without the links, but I hope you’ll come back as I update them. It is so weird to use my hands and fingers right now. Even my fingertips are struggling.

So, here we go.

Shower head
This shower head has a rainshower head mounted at the top with a handheld shower head with a hose that easily reaches when I am seated. It also has a toggle to pause the water when needed and turn it back on again.

Walker
This is what I used in the hospital and when I first came home. It was helpful, but after a while, it became a bit difficult to use. It had small wheels on the back legs, but I still had to pick it up to move a step across the carpet. I really wanted something that would help me achieve a more normal walking gait. Soon after, John invested in a rolling walker. That was a game-changer.

Rechargeable hand massager
John gave me this when I first started having hand pain and mobility issues. It gently massages and warms my hands one at a time. I usually use it for 15 minutes at a time, but lately, because my hands have been hurting more, I can only use it for about five minutes.

Step and handrail beside the bed
We have a high bed, and these help me to get in and out of bed safely.

Electric Leg Exerciser
I use this while seated on the couch. It has pedals that move my legs like those on a bicycle. It does it automatically, and I have a remote control to turn it off and on and adjust the speed.

Foot massager
This is similar to the hand massager, but for my feet. I can have both feet massaged at the same time. My feet and legs hurt all the time, and this helps to give me some temporary relief.

Bedside commode chair
We haven’t placed this beside the bed, but instead removed the bucket underneath and put it over the toilet in our bathroom. It is raised higher than the toilet bowl and has arms. That helps me to be seated appropriately.

Rollator Walker
This has been the most helpful for me. It has handlebars with hand brakes that I use when the rollator is parked, and a seat with a basket underneath. I use the basket to transport small items from room to room, like the book I’m reading, a notebook and pen, or my iPad. It also has a cup and phone holder that I use to hold my water bottle and iPhone.

Pouch for the front of the rollator
This was gifted to me when I was in the hospital the last time. It was handmade by volunteers. It is meant for a walker, but it fits nicely on the front of the rollator. It has pouches that allow me to carry things from room to room, like my pain meds, crackers for a snack, etc.

Cup and Phone Holder for the Rollator
John thoughtfully got me a cup/phone holder that clips onto the handlebars of my Rollator. It is very helpful to carry my water bottle to be refilled or even a glass of wine in the evening. The phone holder is, obviously, where I place my phone when moving from room to room. I’m due for a new iPhone, and we have confirmed that it will fit in the phone holder.

Bench for the shower
This is a bench that fits the back of the shower so I can sit facing the shower head. I’m still afraid of taking a shower because getting in and out, especially when the floor is wet, is a bit dicey, but the bench helps a great deal.

Hand cream for pain and nerve relief
I use two different hand creams throughout the day. They help a little bit, but applying the cream and massaging my hands is mostly what gives me temporary relief. The creams I use are Hempvana Ultra Pain Relief Cream and Nervive Pain Relieving Cream. I have also used Aspercream with Lidocaine.

CBD Oil
This oil is THC-free and contains 2000mg. I use the dropper to put the oil under my tongue. I use it 2-3 times a day.

This seems like a lot when I see a list like this, but they are used throughout the day and only take a short amount of time. Each of them is helpful in its own way, and I will continue to use them until they are no longer needed (which I’m praying will be sooner rather than later).

Some of the products mentioned here are affiliate links, and I make a small commission. There is no cost to you.

Uncertainty

Today has been another rough day. I don’t know where my fingers are, I don’t know where my feet are. It’s the weirdest thing I have ever felt. And also the most frustrating.

I think I may have posted this before, but it’s hard to tell where my feet are when I need to get up and walk. Yet, they do what they need to do. My hands hurt and are numb. I don’t know how I am typing this entry, yet I am. It’s like the mind wants to do something, but the body doesn’t want to cooperate.

This is the absolute weirdest thing I have ever gone through.