Chronic illness, Fatigue, Mobility, Weakness

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 today!)

John and the girls went on ahead. I sat under a tree and watched children and elderly people make their way ahead of me. I was frustrated and I didn’t know what to be frustrated by. Was it my body? My willpower? Was I just a weak person?

Thinking back, I’ve spent most of my life venturing out within very strict confines because of how my body felt. The two-mile jogs I used to be able to take… I could only take them at particular times of day, in certain temperatures, and on a routes by my house so I could get home quickly if I didn’t feel well.

John and the girls continued their adventures. They’d hike, bike, even rock climb. I RARELY went and when I did, I was scared the entire time – scared that my body would give out. He became their adventurer. I was their cuddler. This body of mine was shaping how I interacted with my children, for good and for bad.

I didn’t know why I was struggling then, but I do now, and I can’t tell you how thankful I am for that knowledge. Being diagnosed with POTS, a form of dysautonomia, has been challenging but it has also been liberating. There is peace in knowing the “why.”

There is so much in my life that I haven’t put words to. So much that I have unknowingly coped with and hid from others thinking I was weak, when it turns out I was ill. It’s an amazing gift to find out that what you thought was weakness was actually your strength – that you were overcoming in a way you never knew.

Before this, I had given up the hope of a diagnosis. My plan was to ask God what was wrong with me when I got to the other side. Well, I was lying in bed the other night thinking, “I can’t believe that I finally know what has been crippling my life.” In so many ways, I am on the other side.

Physically, I’m not 100%, but I’m a good 80% (YAY!). I suppose I’m working my way up a hill of a different kind. With my eyes on God, I will keep climbing. The journey is hard. The company is wonderful.

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Aging – The Quest to Make Gratitude My Mirror

Looking around at the women I knew and saw – it seemed that aging took a stronger hold after 40. Bodies, faces, hair… I began to think that 40 was the magical age when I’d become “old.” 27 days after turning 40, I became so unbelievably sick. Life as I knew it… stopped. Dysautonomia is…

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.…

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…

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…

I didn’t know what was coming, but God did

Five years ago, my life changed. Two of the people I loved the most passed away. My grandfather who helped raise me and my cousin who was only 39. She had five-month-old twins.  Trajedy like that brings clarity. I could see what really mattered and what I needed to change in my life. I was…

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…

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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

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 cope with chronic illness.  Continue reading “I don’t want to lose the clarity of being sick once I get well”

Adrenaline, anxiety, Brainfog, Chronic illness, Circulation, Compression Stockings, Coping, Fatigue, Fight or Flight, heart palpitations, Hyper Pots, Hyperadrenergic POTS, Legs, Levine Protocol, Salt Tablets, The Beginning, Uncategorized, Weak, Weakness

I thought I was making myself sick

After being told for years that my ailments were anxiety, I became a disbeliever in my own body. I stopped believing in my ability to decipher if I was physically ill or not. I spent the past two decades convincing myself that anxiety was the cause of my dizziness, weakness, heart palpitations, tightness of chest…

And like so many people with anxiety, I believed that it was my fault. I believed that I had these physical feelings because I wasn’t mentally and emotionally strong enough. My confidence was replaced with a chaotic dialogue. “You’re dizzy because you need to calm down… You’ve never passed out in the grocery store before so stop being ridiculous. You’re not going to pass out today…”

I fought anxiety. I fought so hard! I took medications. I worked out. I meditated. I changed my diet. I read self-help books. I listened to podcasts. Yet, I was still sick and I was still scared.

Learning that I had dysautonomia was the first step to regaining the belief that I was interpreting my body correctly. It freed this resounding roar of, “I knew it! I knew there was something else that wasn’t right.” So many of my symptoms that were from dysautonomia were attributed to anxiety. All too often, anxiety has become a crutch diagnosis. It is the label many are left with when tests don’t find answers. It puts a halt to people’s journeys to find answers and it even belittles those who are suffering from anxiety by being a catch all.

Year after year, day after day—I thought I wasn’t smart enough, determined enough, strong enough… and maybe even that I wasn’t deserving enough…

  • Thinking I was too sensitive to be in the heat, then discovering, “Hey, I actually don’t sweat anymore.”
  • Believing I wasn’t strong enough to be in leadership roles. My heart would beat uncontrollably in meetings with an aggressive supervisor. Not mild palpitations, I’m talking pass-out-quality pounding. I found myself looking for every opportunity to get out just to calm my heart. I know now that the type of dysautonomia I have, Hyperadrenergic POTS (Hyper POTS) causes massive adrenaline dumps during times of stress.
  • Feeling ashamed because I was too scared to drive long distances. I often felt like I couldn’t breathe when I was driving. I’ve since been able to track that my heart rate often increases over 40 bpm in this position. It goes up because my blood is not circulating properly and my heart is trying to compensate by working harder.
  • Thinking I was ridiculous for being scared to go into grocery stores. The combination of standing, reaching for items, and fluorescent lights was dizzying. I remember mustering up all of my energy to push through when all I wanted to do was leave. I would look around at people who were 40 years older than me and believed that they looked so much healthier than I felt.

    Did I ever share that I felt this way with anyone? Never! It was crazy talk.

So, it turns out that I haven’t been as anxious as I thought. I’ve been sick! I’ve had these obstacles and I kept going. I’m not weak, I’m strong.

Now, I absolutely know that I also have anxiety. I think it would be hard to live through this and not. All of these ailments inspire anxiety; they draw it out of me and then that anxiety exacerbates everything. It’s still hard to know where the line between dysautonomia and anxiety lies. Maybe that’s because that line doesn’t end, it blurs.

Even if I had been fighting anxiety without dysautonomia, I wish I could have seen the bravery in that. I wish that my internal dialogue had been loving instead of self-deprecating. No one with anxiety chooses it. I never chose it! It’s like living in a prison of fear—the least we can do for ourselves is have self-compassion as a cell mate.

So here’s to self-compassion!

I have anxiety. I have dysautonomia. I am stronger than I thought. I am braver than I knew.  

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.

Here’s a little more about my story.

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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,…

Creating a “new normal” that honors God

As a people, we are not who we were pre-COVID-19. I am not who I was pre-dysautonomia diagnosis. I don’t think we would have gone through all of this to remain as we were. As we are re-emerging into new lives and routines, I think it’s worth reevaluating what living should look like. This has…

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…

Our life has to be our message

I have a need to talk about what I’m living and learning right now, a calling maybe. I don’t think living with illness means you dwell in a corner and say that everything is great. I think there can be a helpful honestly here that binds us. I’m often told to be careful with what…

Leaving the house is better and harder than I thought

I’m going to be honest about the hard and good stuff… the inklings of fear that creep into our minds; the thoughts we’d rather not have; the allowing of sadness and thanksgiving in the same moment. When I get to leave the house, I’m so excited. Thus far, my outings have mostly been to church,…

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anxiety, Caretakers, Chronic illness, community, Compression Stockings, Coping, Faith, The Beginning, Weakness

So, let’s talk about going from being the caretaker to being taken care of…

Being taken care of…

Does the thought of that make you uncomfortable? I’m so uncomfortable with it. Why is that? Do you feel like you have to earn and not receive? Don’t you feel a great sense of purpose when you take care of someone else? So, why would you deny others the opportunity to take care of you?

The majority of my life, I have been a caretaker as a wife, mom, employee, daughter, sister, friend… I never thought that would change. Let’s be honest – I WAS NOT PREPARED FOR THAT TO CHANGE! Now, I am in a place where I need a lot of help. Sometimes, on tough days, help with things as basic as washing my hair or putting on compression stockings so I can walk more throughout the day. Can you imagine someone putting on support hose for you… all the unflattering angles?! I often look at John and wait for him to get annoyed with my NUMEROUS requests, but he doesn’t. He jumps at the opportunity to make me feel better. He’s worn out but he’s honored to help me.  

There are many moments when I question my value, my deserving of help; and I fear that I’ll burn out those around me. I don’t want to be a weight. None of us do. Yet, we all need help in one way or another and we are able to give help in one way or another. We can give the gift of prayer from our beds, or calls and texts of encouragement to those who need it. People know that we know what it’s like to be scared… and we know what it’s like to be brave. When challenges come into their lives, they will reach out to us, and we have to be ready to share everything we’ve learned to help them.

I’m not great at accepting help, but I’m working on it and I think it’s been a huge lesson in humility and gratitude – one that I am still learning. I can see that it is good for my soul to receive. It is changing me.

I pray that you give openly and receive openly; there is a season for each.

Ellie took this picture. She loved how the light broke through the clouds. I agree with her.

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.

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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…

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.…

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…

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…

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…

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Adrenaline, anxiety, Can't Breathe, Caretakers, Chronic illness, Circulation, community, Compression Stockings, Coping, Faith, Fatigue, Fight or Flight, God, heart palpitations, Hyper Pots, Hyperadrenergic POTS, Parenting, Weakness

I know what death feels like

My body stopped sending enough blood to my lungs. It felt like death, like a huge weight was crushing my chest and keeping me from breathing. I gasped and ripped off any constricting clothing, trying to find air.

I tried to sit up on the couch but hit the floor instead. And then, for some reason, I crawled as though I could crawl away from this, but I couldn’t. I couldn’t strip this off or crawl out of it. In some ways, I had to give in and in other ways, I had to fight.

My adrenaline went up (which it common with Hyper POTS), and my fear was palpable. I started hyperventilating, making everything worse.

With numb hands, I reached for the phone to call Dio, my friend who is also a gifted physician. She had me lay flat, put my legs in the air, and slow my breathing. I let her go to focus on breathing. Talking was too much work.

And slowly, the blood seeped back into my lungs and I could breathe beautifully as long as I stayed lying down. That’s because most POTS symptoms cease when you’re horizontal. My body is in a fight against gravity.

My fear subsided, leaving me sad and angry. I wanted to throw a massive tantrum but that would have stolen my air. So, I fought to stay calm and I let a few tears roll down my face. With each breath, I was learning to be mentally and emotionally tougher.

By now, Isla had drug over a blanket, my journals, and a book. I didn’t see her do it. It was like she just appeared and her presence was life. She opened the book and held its pages above my face to distract me. Then she drew pictures. I asked if she was scared and she said, “yes.” Which made me fight harder. I told her, “I’m sick but I’ll live. I’ll be here. I’ll be fine.”

John rubbed my legs and Ellie brushed my hair. Every time I tried to get up, the weight on my chest returned and I stopped because I didn’t want to feel like death again.

So, I made peace with staying on the floor until a thought hit me… I’ll have to go to the bathroom soon. No… I’d rather lie in my own urine than not be able to breathe again. We called my mom and asked her to pick up incontinence pads in case I needed them and I knew I’d need them.

After working a 12-hour shift, my mom arrived with the supplies that I didn’t want but needed. She talked with me. Strengthened me.

John moved a mattress to the living room floor and my mom helped roll me onto it. El climbed in with me. John and Isla laid on the couch next to the mattress. We slowly drifted to sleep.

Around four in the morning, I woke up, and fear flooded me. Could I sit up? Oh Lord, please let me sit up. Please let this be over. I slowly sat up… and I could breathe. It’s a better day.

This isn’t just me. This is my family. This is every chronically or terminally ill person out there and so many of them have it much worse. I’m lucky, I have an amazing support system. Can you imagine people who don’t? How much harder is it for them to fight, to find peace? We can’t just tell them about God, we have to be His hands and feet to care for them when they are in need.

A special thank you for caregivers:

“Whatever you did for one of the least of these brothers of Mine, you did it for Me.”

Matthew 25:40

Side note: 

When John took this pic, I looked at him angrily like, “What on earth are you doing?” He said he wanted a way to explain how bad things get if he needed to. Now, I’m glad he took it. It helps me remember how scared I was and that I got through it.

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 subscrcibe 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.

You might be interested in…

Blessings of Chronicle Illness on Instagram

Blessings of Chronic Illness on Instagram

Recent Posts:

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…

“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…

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…

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.”…

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…

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Adrenaline, anxiety, Caretakers, Chronic illness, Circulation, community, Coping, Faith, heart palpitations, Hyper Pots, Hyperadrenergic POTS, Levine Protocol, physical therapy, Weakness

When my body gives out, community gets me back up

The highs and lows with chronic illness are extreme. Today, I experienced both.

Physically, I was done. I couldn’t walk 10 steps without falling to the floor. After every few steps, my chest would feel like it went empty and I’d hit the ground. My nervous system needs to be completely rewired and PT is a big part of that. Yet after falling on the floor, you can probably understand why I was terrified of climbing on the bike for PT.

I broke down a bit… a lot… a lot, a lot…

I’m jealous of people who walk and stand like it’s nothing. I’m jealous of people who don’t have to plan their trips to the kitchen to get water and how they’re going to get to the restroom. I’m jealous of people who aren’t scared to be left alone for a few hours.

So, in my fear, I called Dio, my soul sister and eternal friend. She’s the one I was hitched to since the first day of high school, the one I can ugly cry with, and also the one who gave me these PJs right before my illness struck (like she psychically knew I’d be living in PJs for a while). She talked me through the worst of it. She made me feel strong and heard. She gave me permission to wig out. Then, she made me get on the bike.

While I was on that bike, a kind friend from church texted offering to get my groceries. We’re good on that front but the offer felt like a huge hug when I was at a low and scared moment. For her, it was an easy offer. For me, it was a lifeline.

And then… I finished 18 minutes of bicycle PT and I feel great. I’m a little scared to walk but I’ll get there. Hyper-POTS, the form of dysautonomia that I have will not win today.

Can you see the high? It’s not that I finished PT, even though I’m super excited about that. It’s that you can absolutely be the light that gets someone through the dark. Not just for someone who is ill, but for everyone around you wherever they are on their journey. We all need lights and I hope someone gives you as much as I’ve just received.

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.

You might be interested in…

The Blessings of Chronic Illness on Instagram

Recent Posts:

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…

When my feet fail, my faith will stand

When I was at my worst with POTS; I went from jogging, to stumbling, to crawling. This song came on the day I ordered my wheelchair. I fell apart into it. I’ve heard it before but never like I do now… “Where feet may fail and fear surrounds me, you never failed and you won’t…

I know what death feels like

My body stopped sending enough blood to my lungs. It felt like death, like a huge weight was crushing my chest and keeping me from breathing. I gasped and ripped off any constricting clothing, trying to find air. I tried to sit up on the couch but hit the floor instead. And then, for some…