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:

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…

Loading…

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

Advertisement
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:

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…

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…

Loading…

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