Can't Breathe, Chronic illness, Coping, Garden, Hyper Pots, Hyperadrenergic POTS, Mobility, Overcoming, Uncategorized

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, I feel like I’m falling behind. Here, I feel like I’m catching up. I see that life is moving all around me and I’ve been afforded a lovely view.

When we can’t move as fast, we seem to stay longer and watch more. It’s where we find ourselves and God.

In some ways, being sick is helping me to catch my breath; eventhough, there are moments when it quite literally takes my breath away.

God made a beauteous garden
With lovely flowers strewn,
But one straight, narrow pathway
That was not overgrown.
And to this beauteous garden
He brought mankind to live,
And said: "To you, my children,
These lovely flowers I give.
Prune ye my vines and fig trees,
With care my flowerets tend,
But keep the pathway open
Your home is at the end."


-Robert Frost

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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.

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Leaving the house is better and harder than I thought

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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, 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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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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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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