Chronic illness, Coping, Faith, Fatigue, Hyper Pots, Hyperadrenergic POTS, Levine Protocol, Mobility, Overcoming, Parenting, physical therapy, Uncategorized, Weak

My baseline – what life looks like now

With so many recent health fluctuations, I thought I’d share a little about what my daily life looks like right now.

The beautiful news is that I’m fairly independent, driving, cooking, cleaning, working, parenting…

Am I still sick? Yes, but I’m managing it well.

I go slower, but I’m going. I attend less things, but appreciate everything I get to do. I sit more, but I’m also more present. Fear has subsided and I’m rebuilding my stores of joy.

I can’t do as much as I used to before my dysautonomia flare. I need frequent breaks and have to stay conscious of my body temperature, heart rate, and blood pressure since I don’t regulate these well automatically. I can tell they’re off when I become symptomatic.

I’m trying to get better at listening to my body and stopping when I need to. I usually feel better in the mornings and have a tougher time at night. For example, I can walk with strength throughout the first half of the day and tend to wobble more as the afternoon turns into evening.

There are still some things I can’t do. Almost all of these relate to temperature regulation or not being able to stand upright for more than 10 minutes. Grocery shopping is a lofty goal. It requires a lot of walking and reaching. Gardening is on my list of hopes for the fall. I still can’t go for walks. My walking buddy, Bailey, misses them too.

My diet is focused on low-carb, high-sodium, and low-histamine foods. What does that even mean, right? Sometimes, I pull up a stool and sit in front of the fridge waiting for a meal to appear because I just don’t know what to eat. I can eat indulgent items in moderation and in combination with protein—but for the most part, when I don’t stick to my regimen; I get tremors, weakness, tachycardia, difficulty breathing, and a bit of confusion. 

As part of my physical therapy program, I’ve worked my way up to biking 45 minutes, several days a week. Being able to do this is so good for my spirit. It makes me feel strong and capable. It’s bizarre… I have so much more endurance sitting down as opposed to standing or walking. Strolling to the mailbox takes more out of me than 45 minutes of biking.

I rest a lot. I have to go horizontal several times a day and when I do, it feels replenishing. I’m blessed to work part time from home which allows for this type of recovery. I honestly don’t know how I’d manage a 40-hour per week office job. Just getting to an office would take a lot out of me.

If I’m upright for too long, it feels like someone is reaching their hands into my chest and trying to pull me to the ground. The weight of carrying my own body becomes too much work. Many people have remarked at how nice it must be to lay down several times a day. I’m lucky to be able to lay down, but I’m not lucky to have to lay down.

When all of this started, I didn’t know how long my flares would last and what my new baseline would look like. I hoped that things would get better. Now, I have peace in better days. I wake up happy and ready for another round.

Recent Posts:

The Truths of Where I Am

I feel stronger and the gratitude I have for this is immeasurable. I am getting better about reading my body and learning my new limitations. My limitations are for my body, not my spirit. I need to rest several times throughout the day to be able to keep going. Once I get dressed, I rest.… Continue reading The Truths of Where I Am

Making space for my new life

In this new season of life, coffee and wine have been moved to the do not consume list. While I’m okay with that, I still miss the idea of what they represented for me: company, friends, comfort, warmth… I think that’s why I’ve been reluctant to tuck away the coffee pot and wine rack. John… Continue reading Making space for my new life

The frienDship fern

I’ve adored this fern for years. I’ve protected it from deer, replanted it as it grew, and sat in its shade as it hung from the porch eave.  Caring for it every morning was part of how I calmed myself. This winter, I was too sick to care for it during the freeze and it… Continue reading The frienDship fern

One good thing

Finding one good thing can make the world right again. Today, my good thing is very simple—cream of wheat. My stomach has been sick and my food choices, limited.  It’s been comforting to find one warm, soothing thing that I can eat. Would you believe that it’s become my equivalent for coffee and dessert? I’m… Continue reading One good thing

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Chronic illness, Coping, Faith, Garden, God, Hyper Pots, Hyperadrenergic POTS, Overcoming

The untended garden house

This is the first spring for our little garden house. It was a dream five years in the making. John worked so hard to design and build it. I researched plants and could see everything in my mind’s eye.

Yet, in December, I started to feel unwell and grew sicker for the next few months. Once I understood the full scope of my illness, I knew a spring garden was not going to happen this year. Instead, it’s been left untended since winter. It’s seen snow, weeds, and intermittent showers.

What strikes me is how some of our fall plants have lingered and flourished without care. They’ve run wild beyond their borders and sprouted the loveliest flowers. Ladybugs are combating aphids, and wildflowers and cactus are encroaching upon the garden’s exterior walls.

It reminds me of something my grandfather used to say, “God willing.” When you’d invited him somewhere, his response was always, “God willing.” I’d laugh and knew he’d be there. Now, I better understand what he meant. We’re not in as much control as we’d like to believe. When you think of it, most of us will still have plans and dreams the day we leave this Earth. There will be things we don’t get to finish. We have to lean more deeply into “God willing.”

The loveliness of these surviving plants changed how I want to approach gardening next spring. I want an unkept garden with hardy plants that will do well even when I’m not able to care for them. Plants that surprise me with their strength and beauty. I think that’ll be a good metaphor for life.

Here are John’s design plans for the garden house.

Recent Posts:

More than a walk

I’ve been feeling a little down lately. I think that’s normal. The world is coming alive again and it emphasizes some of my limitations. I cherish the days when I’m healthy enough to walk through the creek behind our little house. There are so many spots to stop and rest. Usually when I slow down,… Continue reading More than a walk

Relearning how to interact with the world when you run on a day-to-day baisis

With the world reopening and me feeling better, our schedules are getting busier again. My new limitations make things confusing to navigate. I want to say yes to taking my children to practices and birthday parties, to visiting with friends and family—but the reality is settling in that I run on a day-to-day basis and… Continue reading Relearning how to interact with the world when you run on a day-to-day baisis

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Chronic illness, community, Coping, Faith, God, Hyper Pots, Hyperadrenergic POTS, Overcoming, Uncategorized

The spiritual attack I never saw coming

I never expected fellow Christians to be the ones to attack. To imply that I am embracing illness instead of putting my faith in God for healing. To say things like:

  • “Any sickness/disease is from satan. satan is trying to steal your quality of life, to destroy your purpose in life.”
  • “It sounds like your identity is who you are now with this disease.”
  • “Illness is NOT a blessing, it’s a curse!!!  If you think it’s a blessing you are agreeing with the evil one who put this on you and you will never be delivered from it…”
  • “You don’t need spiritual healing if you are a true child of God.”
  • “If you want your health and freedom back, then you have the authority as a child of the living God to take it back…”
  • “It seems that you need the renewing of your mind.”

Y’all… I’m not sick because I haven’t prayed hard enough for healing. That’s bananas! Let’s be clear—I buy none of what has been stated above and it will not shake me… not even a little. In fact, it shows me how I have to help protect my fellow neighbors who also undergo such attacks.

You see, when I became ill, it was not a dark night of the soul where I wrestled with my faith. Quite the opposite. I fell deeper into my faith. I felt comforted and loved. I felt my spirit growing and the inkling of new callings.

I believe that God heals and that healing comes in many forms. Yet, I don’t believe we are here to live struggle-free lives. Sometimes, we have judgments and biases that we don’t realize until a new situation sheds light on them. There is a humility and distilling of what matters when you become ill. I am thankful for what I’ve learned and what I continue to learn. I see now why people who have been through the toughest journeys become the best ambassadors . Why the woman who beat cancer runs the cancer foundation; why the mother who has lost a child leads a bereavement center. I will lead too. I feel that calling simmering in my soul. My identity is a child of God, not my illness—but I will use this illness for good. I will turn it around into something beautiful.

Good things can come from tough places. And here’s a big one-we can still find happiness on rough days. It’s all about what we do with our situations. I have so much more to learn and I fail daily—but I know that God is with me and has good things in store. He makes me strong enough to overcome, and I will overcome. When I receive these attacks, I have also received support. A kind friend helped me go through these attacks biblically. My church family has prayed over me for healing as well as to persevere. They have cared for my body and my spirit. They have brought me meals and journals. They have loved my children. This is the church of God. This is the family we make for one another.

Recent Posts:

The untended garden house

This is the first spring for our little garden house. It was a dream five years in the making. John worked so hard to design and build it. I researched plants and could see everything in my mind’s eye. Yet, in December, I started to feel unwell and grew sicker for the next few months.… Continue reading The untended garden house

Things I used to hide

A year and a half ago, I posted these pics of our trip to Enchanted Rock. What I didn’t share was that I couldn’t make it up the hill. My body was so weak and tired. I stopped about a third of the way up. (A third of the way sounds pretty good to me… Continue reading Things I used to hide

My first day alone

Today is a day I have been dreading… John went back to the office. I dropped the girls off at school and came home to a dark house. The electricity was out and to my surprise, it felt comforting. I lit a candle, let the cat inside, and sat with the dog as we watched… Continue reading My first day alone

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Blessings of Chronic Illness on Instagram

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Caretakers, Chronic illness, Coping, Faith, Hyper Pots, Hyperadrenergic POTS, Mobility, Overcoming, Parenting, Uncategorized

Powering through to the good stuff!

With chronic illness, you have good and bad days, and you never know how you’ll feel when. It puts a damper on being reliable.

As a type A++ personality, this is a huge struggle for me. I’m a super punctual, likes everything just so, don’t flake kinda girl… or at least, I was.

This weekend tested me. We had a special date night planned with Ellie. She’s an exceptional little person and deserves every good thing. After staying home for the greater part of a year, all she wanted to do was visit a bookstore, have a root beer float, and lay in bed and read together. That’s what I wanted too!!

We’d been excited about this all week and sure enough, as Friday approached, my body was becoming weaker with tremors and tachycardia. Since I could stay fairly stable as long as I sat down, we loaded up the wheelchair and pushed through.

There’s something alluring about shelves filled with books: the stories and thoughts, the millions of things you don’t know yet but could.

El was elated to be back in the world again.  She scanned the shelves of books and petted each stuffed animal. She said it was like a dream.

I was the opposite of content. It turns out that I don’t like being pushed in a wheelchair. I like to start and stop when I want, go at my own pace, turn when I want to, face the direction I want… I had no idea how frustrating giving up control would be and how unkind it would make me feel. John patiently adhered to my directions but I’m pretty sure it took all of his strength not to park me in the corner.

I eventually asked to be left in an aisle. I was tired of feeling like luggage. Nights in general are harder for me physically, so that probably added to my irritability. Next time, we’re making daytime plans.

Sometimes, I think giving up control is one of the biggest lessons in being ill. It’s not one that I’m doing well with yet, not by a long shot. I can’t control how my body feels, when I’ll be strong enough for an outing, or whether or not I’ll be able to walk independently or need a mobility aid on any given day. So I need to work on controlling how I respond. Ironically, I know this comes through surrender. That’s where I will find patience and a deeper gratitude for the moment. If I keep trying to control the uncontrolable, I’ll go mad.

I was irritable and not feeling well, but we pushed through and had a beautiful night. I would snap and I’d apologize. I’d forgive myself and try again.

John handed me this book as a joke when I was being especially evil. It actually hit the mark so it came home with me.

My book picks:

I love, love, love reading anything about near death experiences. Imagine Heaven pairs near death experiences with biblical promises. I think I’ll read Suffer Strong first though. I’m just finishing up Katherine and Jay Wolf’s first book, Hope Heals. It details how they leaned on God when Katherine underwent a massive brainstem stroke as a young mother at age 26. I’ve found myself repeatedly drawing from their strength over the past few weeks. Reading their story has put beautiful thoughts in my mind and and in my heart.

Ellie’s book picks:

She’s a huge fan of the Wings of Fire series. She likes to read the books first, then the graphic novels. I love it when she can’t put down a book. White Fox is the first in a series of books that has been translated from Chinese to English. It’s a bit of a dark fairy tale. We’ll see how she likes it.

Most importantly, Ellie had a great night and that’s all we really wanted.

Here’s a little more about my story and how I’m coping with chronic illness.

Recent Posts:

Better days are here

The first emotion I used to feel when I woke up was fear. Fear of putting my feet on the ground to see if I could stand. It was the gauge of whether or not I’d have a decent day or if I’d struggle. Well, I’ve recently had a slew of decent and even good… Continue reading Better days are here

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When your identity is stripped away

Who are you? Your gifts, relationships, the roles you play?

Chronic illness (and any trauma really) will rob you of everything on your list at one time or another. It will take all that you thought you were, shatter it, and leave you to rebuild yourself in the light of humility.

Go ahead, scratch off each item… Every. Single. One.

  • I didn’t realize how vital being smart was to my identity until the brain fog hit and I had trouble keeping up at work.
  • I don’t feel like I’m a capable parent on days when my daughters are taking care of me.
  • I don’t feel tenacious when the most concrete thing I can produce in a day is dinner.
  • I don’t feel like much of a wife when my husband has to wash my hair.

What’s left of us when we scratch every adjective off the list?

What’s left when we’ve sifted through to the most granular parts of our being? Are we worth less?

I thought I knew myself well. I even thought that I loved myself. To my surprise, it was all conditional. Becoming ill showed me that much of my self-identity was built upon what I could accomplish, what I could earn. I played with my daughters, worked, was a loving partner, cared for ailing family members, invested in my friendships… and somehow that made me worthy. It made me, me. When I became ill, so much of that came to a stop. I could give very little and needed so much. I couldn’t earn the “worthiness” of the help I was receiving.

One evening, John told me that I was everything he could ever want… and I laughed. Through my fear, sadness, and anger—I couldn’t see the beauty he saw.

And though I couldn’t earn it, John’s love didn’t stop. No one’s did. I was slowly able to see how everyone around me was growing through helping me. I was not able to help them physically, but allowing them to help and love me was good for their spirits. When I was scared, John would sit with me until I fell asleep. My daughters would quickly run over to steady my balance when I stumbled. My friends were happy to sit beside me in the quiet and in the tears. My illness brought kindness to all of us.

I was left with a pivotal question—if they could love me unconditionally, could I love myself even if I felt like I hadn’t earned it?

While my body recovers, my spirit is hard at work too. I feel changes in unseen ways. I recognize the lies that have held me back: “you’re not worthy,” “your voice is not important,” “stay small and everything will be okay.”

God is shedding light on the truth—when my love for myself dwindles, His love for me is still there. Even if every person around me had fallen away, God would have been there with me, closer to me than my own breath.

There are days when I cannot physically contribute, but my spirit is not worth less. I will not be overtaken by illness. My heart is growing in humility and gratitude and I can see how I am deserving of love right where I am. We are all deserving of love right where we are.

So, what’s left when I remove every adjective from the list? What’s left is my spirit. What’s left is God in me.

Again, I ask — who are you?

My prayer is for you to see how beautiful and worthy you are, in your good moments, but especially in your tough ones.

Recent Posts:

A Diagnosis

For years, I’ve known something was wrong. Tests were normal. Doctors would point to anxiety and a vitamin deficiency and I’d be on my way. I’d tell John, “When I get to the other side, I’m going to ask God what this was. I have something they can’t figure out.” Two days after Christmas in… Continue reading A Diagnosis

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Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Here’s a little more about my story and how I’m coping with chronic illness.

 

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Chronic illness, Circulation, Coping, Faith, heart palpitations, Overcoming, Parenting, Uncategorized

“I’m gonna see a victory”

This weekend, we went back to church for the first time in over a year.  It was everything I could have hoped for. The energy of the sanctuary. The joy of seeing our church family. I can’t believe we’ve done without this for a year, and a tough year at that. I’ve been a bit depleted and really needed to be filled up.

When I woke up, I wasn’t sure I was going to make it. My hands and feet were numb and I had pain and difficulty breathing when I was upright. Basically, my blood just wasn’t moving around well.

In some ways, I did this to myself. I was doing AMAZING on Friday – so I cleaned the entire house. I felt like I could keep going, so I did. I’ve been recovering ever since (totally worth it!).

It’s so much easier to push through recovery pain when you have something to push towards. I drank a ton of water, took salt pills, stretched, showered, and took breaks while getting ready.

After a crazy and still beautiful year, we WALKED back into God’s house. It felt like taking a deep breath.

Then we did something really exciting… we got a car wash. 😂 The girls seriously loved it. We really need to get them out more.

I’m grateful for these small things. I got up. I got dressed. I spent a morning outside of the house with my family. We laughed. We prayed. I felt a good kind of alive again.

Here’s a little more about my story and how I’m coping with chronic illness

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

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Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

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anxiety, Caretakers, Chronic illness, Coping, Faith, Hyper Pots, Hyperadrenergic POTS

My first day alone

Today is a day I have been dreading… John went back to the office. I dropped the girls off at school and came home to a dark house. The electricity was out and to my surprise, it felt comforting. I lit a candle, let the cat inside, and sat with the dog as we watched the drizzle fall outside. I didn’t feel alone and I didn’t feel scared. All the what if’s dissipated. (What if I need help? What if I have a bad day? turned into… I am fine. Today is a good day. Even if it were a bad day, I’d be okay.)

Here I was, dreading this day, but it feels peaceful like a calm after the storm.

I was lucky that John was working from home while I was at my worst. It was a huge blessing. When I needed help getting to the doctor, making meals, getting around the house—he was there. When I was scared—he was there.

Now, I’m doing much better and his leaving feels like a natural part of my healing. I’m on my way to becoming more independent again. I’m going to lean into it and enjoy the calm of this dark, quiet day.

Here’s a little more about my story and how I’m coping with chronic illness

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

You might be interested in:

The Blessings of Chronic Illness on Instagram

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Chronic illness, Coping, Faith, God, Parenting, Uncategorized

If God asked me if I wanted this path, what would I say?

I imagine God asking me, “Would you like an easy and beautiful life where your spirit grows a little, or would you like a challenging life that reshapes how you see the world? Either way, I’ll be with you.”

I’m fairly certain that I would have responded, “Easy is good. I can grow a little.”

Maybe that’s why this wasn’t my choice to make.

Sometimes, I want off this lifepath. I want my old body back with all of its freedom and abilities. Still, I know what’s more important than my physical healing is my spiritual healing. I feel Him with me on this journey. You see, no one truly understands what it’s like to live in my body at any given time except Him and me.

I live a life of paradoxes-but don’t we all? There are moments of total fear and complete surrender. Every day, I fail and succeed. I am weak and I am strong. I am mean and I am kind.

Being ill makes you reevaluate EVERYTHING. Especially who you are and how you interact with the world. Sometimes it can feel like your old life doesn’t make sense for you anymore. And the truth is, it may not, but I don’t think that’s a bad thing.

Before I became ill, I didn’t see how I could remove anything from my to-do list. My sense of self was dependent on how much I achieved and how well I achieved it. Now, there are days when I have to lay down to recover from showering. So, imagine how conscious I have to be in organizing my schedule to get everything else in: working, making meals, caring for my daughters, catching up with John… If something depletes me and doesn’t increase the greater good, I don’t have room for it. The result is that many of my past priorities have drifted away. My old sense of self is being redefined.

It feels like I’m cleaning my soul and making room for what really matters. In this season I’m finding spaces that I didn’t know existed and callings I didn’t expect. When I live like this, it gives me the energy I need for my new life. 

Still, there are things that must be done that I have little energy for. That’s the reality of it. Sometimes it’s something as simple as picking up the girls from school. My body can become weak and I drape myself over the console to rest as I drive. We’ll do homework. I’ll make dinner, then remind them 10 times to shower. I push myself and become exhausted and cranky. I’ll become angry that what little energy I have is spent on mundane to do’s. Yet, aren’t these the beautiful moments I live for, the small interactions with the people I love most? In these moments, I need such grace.

I suppose there are parts of me that still long for control and for achievement. My body is slowing me down and maybe that’s what my soul needed.

My friend sent me this picture. It fits where I am so perfectly.

Okay God… you make the path, just keep walking with me. Life doesn’t have to be easy for it to be good.

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

WITH MUCH LOVE, SARA

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Here’s a little more about my story and how I’m coping with chronic illness.

You might be interested in:

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Brainfog, Chronic illness, Circulation, Compression Stockings, Coping, Faith, God, Hyper Pots, Hyperadrenergic POTS, Levine Protocol, Mobility, Parenting, physical therapy, Salt Tablets, Uncategorized

Better days are here

The first emotion I used to feel when I woke up was fear. Fear of putting my feet on the ground to see if I could stand. It was the gauge of whether or not I’d have a decent day or if I’d struggle. Well, I’ve recently had a slew of decent and even good weeks (not days!). I no longer have doubts about putting my feet on the floor. I haven’t used a wheelchair in a while and only need my cane at night and for longer distances. I feel stronger and very hopeful.

I believe this flare is on its way out and I am so thankful for the prayers that have been said for me.

You prayed for more good days and they have been given.

I’m eager to see what my new baseline is and how my body works. My body is not what it was, but it’s better than it is has been. I’ve gone from struggling when upright, to being able to stand for almost 10 minutes. You can get so much done in 10 minutes! I may not be able to go to the grocery store yet (the thought of it still terrifies me), but I can make all of our meals. I can care for myself and then some. There are days when I even change out of pajamas. 😉

I used to lay down between work calls to get more blood to my brain, thinking it would clear the fog and that I’d be smart again. Now, I can work for longer periods. I wash my own hair, drive the kids to school, and do laundry. I’m going to let the girls keep packing their own lunches though. I think it’s good for them.

I don’t know what led to this upturn. We implemented many changes at one time, so it’s hard to tell what combination worked. I can tell you that it wasn’t the medication. My body didn’t handle the first trial of medicine well and I ended up in the hospital. Meds work beautifully for so many people. They just didn’t work for me… at least not right now.

I was surprised at how quickly my body deconditioned within the first few weeks of becoming ill. Now, I’m two months into the Levine Protocol physical therapy program and my strength is improving greatly. I take salt pills and drink extra fluids to increase my blood volume. I wear compression stockings to help me walk (they’re not pretty but I don’t get far without them). My diet has changed a lot too. Less carbs and sugar. No big meals. Lots of produce and protein. I’ll never be able to drink coffee or alcohol again. I thought this would bother me more than it actually does.  

Compression stockings are like magic feet for me. They give me strength and allow me to walk more independently.

One big lesson I’ve learned is to pace myself. I can’t do as much as I used to and that’s okay because I can do what matters. If I overdo it, I’ll be too weak to enjoy the next day. “I can’t spend my energy on that,” is the most common line that comes out of my mouth.

This past flare lasted over three months. I’ve never been sick that long in my life. I feel blessed that it wasn’t longer. I know that I’m still ill, that POTS doesn’t go away—but compared to the last few months, I feel pretty great!

This is new territory and I’m treading carefully, but I’m also enjoying every good day.

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Here’s a little more about my story and how I’m coping with chronic illness

You might be interested in:

The Blessings of Chronic Illness on Instagram

Recent Posts:

Caretakers, Chronic illness, community, Coping, Faith, Fatigue, God, Hyper Pots, Hyperadrenergic POTS, Uncategorized, Weakness

I don’t want to lose the clarity of being sick once I get well

Being ill changes you. It lights a fire in your soul. More clearly than ever before, you see what’s important, what kind of life you want to live, and who you want to be with. For me, I have very limited energy so I have to be purposeful with it.

What surprised me was how being sick made me long to serve others. I don’t believe this is me, but God moving in me. I know what suffering is and I don’t want anyone else to feel like this. I know how to care for people in a way that I didn’t before. My heart is ready; my body is not quite there yet.

So, I do what I can from home: send encouraging texts, pray for people in my support groups, write a blog, and dream of how I can care for others when I’m well again.

I have these comforting memories from when I volunteered at nursing homes in high school. They’d give me a list of residents who didn’t receive visitors and I’d go chat with them. More than 20 years later, their faces are flashing clearly in my mind as I write this. All they wanted was love. I may not have been good at geometry or foreign language—but I was really good at love. It was more than that though. They saw me—just me, who I was, right where I was. The sick have a way of doing that. I watched the end of their journeys and I was surprised to find that I was happy for them when they passed away. I knew they were free.

Well, life grew more chaotic with every year and I became more self focused. I was either overwhelmed by my to do list or I would sink into the numbing light of my phone. I was exhausted, distracted, and just staying afloat.

I was so busy: work, family, friends… “a full life…”

And then it stopped.

Becoming ill with Hyperadrenergic POTS, a form of dysautonomia, cleared my schedule and made my circle small again. As I lie here, I keep thinking that when I heal, I want to serve those whose spirits are hurting. I want to hug those who are alone. I want to pray with those who are scared.

“Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain.”

1 Corinthians 15:58

I know that I will have better days—and I’m excited about that, but I don’t want to lose the fire for service that being ill has lit in my soul. I don’t want to go back to the routine of my adult life. I want to incorporate the kindness of my youth and the lessons of my struggle.

I’ve been so incredibly blessed to have support while being ill. I know others aren’t as lucky. And many suffer much more than I do. I’d like to find a way to spend my life serving them. I don’t know what that will look like but I’m praying about it. The answers will come and I need to make sure I’m ready.

We can tell people about God, but we also have to be His hands and feet to care for them when they are in need.

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

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Here’s a little more about my story and how I cope with chronic illness.  Continue reading “I don’t want to lose the clarity of being sick once I get well”