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.

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One good thing

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Faith, God, Hyper Pots, Hyperadrenergic POTS, Legs, Mobility

When my feet fail, my faith will stand

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

It’s been a hard few months—but today, my feet are standing firm. My cane and wheelchair are parked in the corner. I will follow whatever path God lays before me.

“You call me out upon the waters

The great unknown

Where feet may fail

And there I find You in the mystery

In oceans deep

My faith will stand

 

And I will call upon Your name

And keep my eyes above the waves

When oceans rise

My soul will rest in Your embrace

For I am Yours

You are mine

 

Your grace abounds in deepest waters

Your sovereign hand

Will be my guide

Where feet may fail and fear surrounds me

You’ve never failed

And You won’t start now

 

So I will call upon Your name

And keep my eyes above the waves

When oceans rise

My soul will rest in Your embrace

For I am Yours

And You are mine (You are mine)…”

oceans by hillsong united

There are many blessings in illness.

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Our life has to be our message

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Leaving the house is better and harder than I thought

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

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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.

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Things I used to hide

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