anxiety, Can't Breathe, Chronic illness, Circulation, community, Coping, Fatigue, Hyper Pots, Hyperadrenergic POTS, Mobility, Overcoming, Parenting, Uncategorized, Weak

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 commitments are difficult.

Becoming ill during the pandemic buffered me from feeling obligated to keep up with a “normal” life. There were less expectations, less commitments, and more time at home.

Within the confines of home, I can usually control my dysautonomia beautifully: the temperature; being able to sit whenever I need to; never having to walk very far; having the right supplements, fluids, and food (I have a very specialized diet).

Right now, I’m planning a pool party for my daughters’ birthdays with the very real possibility that I might not be able to attend. Want to know the beautiful thing? They understand and are okay with this. They know that they are loved and they’re becoming more and more selfless. Just as interesting—I don’t feel guilty. A little sad, yes; but not guilty. I know that I’m doing what I can, and John and the girls know that too.

Here’s my thought process on deciding whether or not I can go out:

  • What will I feel like that day? My heart would like to RSVP. My body is a tentative.
  • Is parking close to my final destination or will I have to walk far? If I don’t know the answer to this question, the idea of walking too far and not being able to make it becomes a genuine fear.
  • Who will be there? Are these people I feel comfortable being around if I become ill or will I feel self-conscious?
  • Will we be inside or outside? If it’s too hot, that will trigger my POTS.
  • What are we going to do? If it’s sedentary, I have a shot.

The next layer of thought is… what am I giving up?

  • If this event takes a lot out of me, what will I be missing during the rest of that day and potentially for days to come if it takes more recovery time?
  • Will I be able to do my physical therapy?
  • Will I be less involved with my kids at home?
  • Will I be able to make our meals?
  • Will I be able to work or knock out any other tasks?

Then there’s the planning for going and recovering.

  • Things as simple as showering and getting dressed require recovery time for me. I have to build this time into my day. Gone are the days where I can rush out the door… just pick up and go.

Before Dysautonomia took over…

I could dance, participate in 5Ks (I did get sick after this 5K though – I had POTS and didn’t know it), play sports, host backyard parties… I’ll slowly and thoughtfully add many of these activities back in, I hope.

I went to my mom’s the other day and packed a huge bag for myself. It reminded me of when my children were babies. It was full of solutions for all the “what if’s” that could happen. Being prepared gives me a peace and makes me more confident in leaving the house.

Right now, I have safe places where I feel comfortable going out: family member’s houses, church, the doctor’s office, even sit-down restaurants where I know parking will not be a challenge.

Does this sound like I’m over-thinking it? Maybe; but trust me when I say that if you lived through the consequences of not being prepared (dizziness, decreased mobility, an inability to stand upright, feeling like you can’t breathe, weakness, nausea, migraines from not having enough blood in your head), you’d over think it too.

Right now, I’m not physically capable of living the same kind of life; but I still live a beautiful and fulfilling life. I plan to continue getting better and better. Meanwhile, I think it’s good to share how living is in this moment.

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

Loading…

Something went wrong. Please refresh the page and/or try again.

Blessings of Chronic Illness on Instagram

Blessings in your inbox every Sunday

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

Can't Breathe, Chronic illness, Circulation, community, Compression Stockings, Coping, Faith, Fatigue, Hyper Pots, Hyperadrenergic POTS, Legs, Mobility, Overcoming, Uncategorized

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, doctor appointments, and my mom’s house. For Mother’s Day weekend, John and I decided to grab lunch and pick out my gift. We were out of the house; the weather was beautiful; and really, that’s all we needed, right?

I didn’t expect the rollercoaster of emotions that was about to ensue. The first challenge came before we got out of the car. For the first time ever, we used my handicap parking placard. While I’m thankful for this placard, I also had hesitations. I knew that I needed it to minimize my time upright, but I don’t look sick; so, there’s a fear of judgement. Would someone look at me like I’m abusing the system? Worse yet, would someone say something to me? I’m thankful John was there. He has the gift of not caring what other people think of him. That’s been good for this girl who often cares too much about what people think of her.

We walked into Bed, Bath & Beyond and looked for the motorized cart, but there wasn’t one. I just assumed they would have one. I used to see them in stores all the time but I never paid attention to whether they were in every store. I pay attention now. Lucky for us, John had packed my wheelchair in the car just in case. He ran back for it and we were off.

Next stop, my all-time favorite store—Target! Oh, my goodness, I was so excited! It was everything. We had gotten used to using the wheelchair, and their motorized cart looked bulky to navigate. So, we stuck with our wheelchair and John pushed me around. He stayed with me as we went through housewares and all the aisles he used to avoid. His patience meant a lot.

After a while, we decided to divide and conquer. I could use my feet to walk my wheelchair around. After all, my feet are strong, the problem with POTS is that my circulation doesn’t work well when I’m upright. I had no idea how quickly this would wear me out. I ended up sitting in an aisle waiting for John to return. I should have grabbed the motorized cart. I’m learning. I see now, that if a store doesn’t have a motorized cart and John is not with me, I can’t shop there. That’s a bit humbling. It may not sound like much, but it is when you feel like you should be able to do something and you physically can’t. You used to, but you can’t now. That’s a tough pill to swallow.

A confession… I’m uncomfortable with the way people look at me when I use a wheelchair. There is love and kindness in their eyes; but there is often pity as well. I think that’s normal and most likely how I’ve looked at others. I just don’t like being on the receiving end of it. I wasn’t going in expecting to feel this way. It rose up in me after my first few interactions with others. I’m usually super friendly. I look people in the eyes, say hello, make small talk… Yet, after a few glimpses of pitiful eyes; I found myself doing everything to avoid eye contact. I know this feeling is temporary and I’ll talk myself throug it. I just didn’t expect to feel this way.

It brings to mind a quote from C.S. Lewis, “Humility is not thinking less of yourself, it’s thinking of yourself less.” That’s what I need to work on right now. I’m surrounded by beautiful people with good intentions. There is no need for me to hide my eyes.

Another wave of emotion that hit me was jealousy. Seeing mothers walking around with their children made me want to cry. If I’m being totally honest, it did make me cry… right there in the Target. I used to walk around there with my kiddos all the time. How on Earth did I do that? It seems like that was a different life, a different person.

The birthday aisle added to the waterworks. My girls have birthdays this summer. I want to be able to take them to the store to pick out their decorations. I want to park and walk in and not have to go through the ordeal it takes for me to do so… to overcome my fears of using the handicap placard, hope an electric cart is available or have John with me, put on my emotional suit of armor, and pray that Isla stays relatively close because she’s a wanderer like her mama. Maybe these aren’t big deal things. Maybe they don’t sound like much, maybe they’re not much; but it’s frustrating. It’s a new part of my life that I wasn’t expecting and it makes me a little sad.

Birthday parties past

It also makes me think of a beloved friend whose daughter passed away. How does she feel when she sees mothers and daughters at the store? How does she handle the birthday party aisle? Seriously, how does she survive Mother’s Day? Sometimes, life is too much; just too much. We connect in joy, but we also connect in pain. Thinking of her, my whole being swells with love and tears. I don’t want her to hurt. I don’t want anyone to hurt. Yet, here we are. For the good and the bad of this journey. We all have varying degrees of pain and joy, and all are valid and an important part of our walk.

After climbing the mountain that was Target, we were hungry. Eating in a restaurant would level the playing field for me. We could sit while we did that! Due to my specialized diet; I knew that I should avoid carbs, tomatoes, and aged cheeses. Yet, daring as we are, we went for pizza. It was sooooo good. We sat and chatted and were happy. We ate and ate. I didn’t need a wheelchair because the walk from the car to our table was short. No one knew I was ill. I didn’t feel ill. Everything was back to normal.

As we drove home, the “normal” disappeared. My body started to react to what I had eaten. It was becoming harder to breathe so we laid me back and propped up my feet. I thought it was nothing that a few hours of laying down couldn’t fix; but in reality, it took days. Still, like most food-induced attacks, I told myself it was worth it. In so many ways, it was though.

I can’t tell you how happy I was to get back to our little house and comfy bed. I’m so lucky to have both. I crawled into the blankets and began to recover. I’m glad I went out. It was so good and unexpectedly hard at the same time. It was a step towards overcoming. In some ways, it showed me that I’m sicker than I’d like to believe. In other ways, it reminded me of how far I’ve come and that I’m not done yet.

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

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

Loading…

Something went wrong. Please refresh the page and/or try again.

Blessings of Chronic Illness on Instagram

Blessings in your inbox every Sunday

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

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

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

Recent Posts:

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

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

Loading…

Something went wrong. Please refresh the page and/or try again.

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:

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

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

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:

Recent Posts:

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:

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: