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

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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 I say. That my words have power. I believe they do. Yet, I don’t think that means I should preclude the honesty of how hard and beautiful this journey can be.

I pray. I cry. I have fears. I have strength. I am so completely human and yet I am on a path that has been created by God.

Some people want me to speak only healing words over myself so that I can become a testimony. Some people want me to say that I’m fine because the truth makes them uncomfortable. Some people genuinely want to know where I am on this journey.

Y’all, I’m not on the road to having a testimony. Every day that I live must be a testimony – one of devotion, perseverance, faith, surrender, gratitude… one of honesty.

If you ask me how I’m doing; I will tell you. And when I ask you how you’re doing; I hope you’ll tell me. I don’t want to hear what you’re trying to convince yourself of. I want to know exactly where you are so we can walk step in step together.

God didn’t give us the spirits we have so that we could pretend them into something else. Goals, faith, and determination are important. So is a clear view of our gifts in the present moment.

I have to remember that little eyes are watching how I navigate this life.

So, this is how I’m going to do life. I’m going to lean in to the inklings, to the callings, to the hard and beautiful conversations.

I will speak from where my spirit is and pray for guidance and humility. I will be a friend. I will be vulnerable. I will fail. I will try again. And I will always, always love.

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

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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:

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

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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 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:

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

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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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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

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

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.

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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

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