Category: Brainfog

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

When your identity is stripped away

The Blessings of Chronic Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Again, I ask — who are you?

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

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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.

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

 

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

Better days are here

The Blessings of Chronic Illness

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

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When your identity is stripped away

Who are you? Your gifts, relationships, the roles you play? Chronic illness (and any trauma really) will rob you of everything on your list at one time or another. It will take all that you thought you were, shatter it, and leave you to rebuild yourself in the light of humility. Go ahead, scratch off…

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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

The Blessings of Chronic Illness

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:

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