Presenting… Presyncope (POTS Symptom #1)

What color does my face change to?  Look answer for below.
What color does my face change to during presyncope? Read on for answer.

Presyncope is not my favorite POTS/NCS symptom. The word itself has such a musical sound (pree-SYN-cuh-pee) and the sensation of it may come rushing on you like an orchestra bursting into full song, but it is far from a pleasant experience.

What triggers your presyncope most likely differs from that of others. For me, walking or standing too long (for minutes) or for too many short bursts in a row; kneeling or sitting perfectly straight; massage or touch to the back of my neck; or even too much excitement, concentration, or conversation can trigger presyncope. Wikipedia has a more exhaustive list of potential triggers here (scroll down to Cause).

Presyncope is literally pre- (before) syncope (fainting), so it includes all the sensations that precede losing consciousness. For me, when it’s coming on, I start to feel more faint than usual. My head gets heavy, and I may need to support it with my hand. I get very nauseous. Sounds around me become muted, and lights seem to dim; sometimes I have grayed-out vision. I realize things are NOT going well but lose my ability to think clearly. When people around me ask what is happening and how they can help, I cannot make decisions, and I end up unable to form words. I turn extremely pale (pale enough that strangers give me horrified looks and ask what I need… maybe a bit like #4 in the photo lineup), and I tend to get red and blotchy on my neck and chest, sometimes with a rash of bumps. My eyes tear up and water. As soon as I lose speech, I know I better lie down, and FAST. Lying down prevents me from actually fainting (thus, PREsyncope). While lying down begins to relieve some symptoms, I turn very, very cold and possibly sweaty, and I often have full body tremors that may last 20 minutes to an hour. I often need a good bit of time before I can sit up again, because the lightheadedness takes over if I attempt to sit up too soon.

Well, that sounds like a lot of fun, doesn’t it?

So what’s happening during presyncope? For me, since I have dysautonomia, my malfunctioning autonomic nervous system is not directing enough blood to go to my brain. The mechanics differ depending on the cause.

What can I, with my dysautonomia, do to prevent presyncope? I need to make sure I sit down or lie down before things get too bad– for example, I know that I could go into presyncope if I attempt to set our entire dining room table in one go. I have to do little by little, or better yet, ask my husband or kids to help. I need to be sure I am taking in enough salt and fluids. Compression stockings might help, or countermaneuvers (tightening my leg muscles) may put it off. Medications may help too, and I take a beta blocker and midodrine to slow my heart rate and increase my blood pressure, respectively. Many dysautonomiacs have success with fludrocortisone (Florinef). For me, the above approaches don’t get rid of it, but they may help me experience it less often.

I would love to share a few stories of others who experience presyncope. If you would like to submit one for consideration, please send it to kristiwrite@hotmail.com.

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Walking in works

Sometimes I laugh when the Bible mentions walking, since I can’t walk far anymore, due to the lack of oxygen my brain gets when I’m upright, because of POTS/NCS.

Today, though, I got to see a friend walking in works. Last week, I received an e-mail from my friend M. I don’t know M well, and I hadn’t seen her or been in touch with her in over a year. We rarely cross paths; we’re not even Facebook friends!

Out of the blue, she e-mailed me, asking if I needed help with anything. “Anything” was underlined, so she had to be serious.

emailfromm

This blew me away. I’m still amazed. I asked my kids why they thought Mrs. M wanted to help us, and one said, “Because she’s a Christian.” He was right. All I could think was that the Holy Spirit, who is alive and well in her AND alive and well in me, saw my needs and her willing heart and put us together.

Today, she came over and scrubbed my shower, then grated a ton of vegetables with my puny little hand grater.

Turns out, she is not a stranger to hard times. As we had the chance to catch up, she told me about her husband’s lack of employment, about her youngest son’s brush with death, about her oldest son’s MRI that showed a tumor on his spine, maybe lymphoma, followed by back surgery that revealed nothing wrong whatsoever. She told me that their trials are helping her see past her own life, with its large and small troubles, and want to help others where she can. She has experienced both God’s silence AND His small mercies.

Today, she lived out before me Ephesians 2:10, “For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.” God knew beforehand that I would not be able to scrub my shower and created my friend M to do it for me.

Thankful.

You say “vacation;” I say “zeecation”

How busy is your life right now?

Our life as a family was very busy before I got POTS/NCS, and last summer, it came to a screeching halt. Since then, we have been able to add in some activities, but we (I) generally have to live at a slower pace. This isn’t easy for me, but I think my husband might say this is one of the positive aspects of my new chronic illness. We are forced to prioritize, to slow down, to say “no,” and to cherish the times we can say “yes.”

This Fourth of July weekend, we declared it a vacation weekend (or, “zeecation,” as our kids pronounced “vacation” for years). We didn’t go anywhere unusual or plan anything special, but we lounged around, didn’t work on our to-do lists, spent more time outside, ate with family and friends, and made it fun.

One highlight was a trip downtown on Saturday morning. I loaded up on my meds, and we walked (okay, I rode) around our town’s main street; we went into the kids’ favorite toy store; we sat in a beautiful plaza.

About an hour into our time, I started to go downhill. What does this look like? For me, it looks like nausea, weakness, fatigue, a strong desire to lie down, and a lack of conversational skills (brain fog, anyone?). So, what’s a POTSy body to do? SALT-LOAD! I mixed an Emergen-C packet and salt into a large glass of water, and we all gobbled up a bag of popcorn. Score one for the girl with dysautonomia! We were good to go for almost another hour before heading home for the comforts of the couch. (Extra salt helps dysautonomiacs increase blood volume and is one of the first things recommended to do.)

Popcorn time!
Popcorn time!
Propping my feet up as we all catch some sun.
Propping my feet up as we all catch some sun.

How do you make a weekend at home feel like a vacation?

Just a big waste?

couchpotato

So there I was. All alone. Resting on the couch. Silence pervaded as the kids were at the Lego Movie with friends. Many a stay-at-home mom’s dream scenario, right?

And there I was, feeling discouraged because ALL I could do was lie on the couch. Couldn’t cook or clean (well, who wants to clean, anyway?). Couldn’t go for coffee with a friend. Couldn’t even read or watch or surf, because the stimulation was too much for my POTSy brain.

I was debating in my mind, once again, whether this suffering, this life with a chronic illness, is just a big waste. “I can’t do anything,” I accused God. “All I can do is lie around. What can I do?”

His one-word reply, interrupting my thoughts: “Worship.”

Oh, yeah. I guess I can worship, lying on a couch at 10 in the morning. And I’m starting to think worship might be a much higher calling than I give it credit for.

Dare I surrender to a life of worship? To be continued….

Sundays with Pastor Sheets

biblebed
Are you bedridden or housebound? Have you ever had to stay in bed for a long period of time?

Thanks to my current combo of meds, I can get out of bed most days. Sometimes, though, I wake up feeling like I got run over by a Mack truck, which reminds me of my early bedridden days before my POTS and neurocardiogenic syncope were treated.

“Really? You CAN’T get out of bed? I’m sure you can, if you try harder,” some might think. (In fact, I sometimes think that about myself!)

Here is what I feel like, bedridden. My limbs are all extremely heavy. If I try to sit up, the world swirls, and my blood pressure drops dangerously low. If I “try harder” and manage to sit up, I have to support my heavy head by leaning on my hand. My brain definitely can’t compute 42 x 42, as my son asked me to this morning (oh, wait… can I ever do that?), and I might zone in and out. My pulse pounds in my ears. I don’t have strength or energy to take a shower, even seated on my handy bath seat (and after three days, both Lazarus and I stinketh). I am freezing cold on this hot summer day. My whole head feels like it’s fallen asleep (pins and needles from forehead to chin), and I feel like the flu has come to stay. Nausea is keeping me company, and stimuli (lights, noise, conversation) overwhelm me.

Being bedridden isn’t tons of fun, but being bedridden on a Sunday can be quite discouraging. Sunday is a special day for me, because I can gather with others who share my faith in Jesus. Even if on a typical week, I can’t stand for songs or sing all the verses, due to dysautonomia, I can participate with my heart and mind. I love being spiritually fed by the sermon, and it is good for me to be with others in my community of faith.

So, what is a bedridden body to do? Or maybe you’re not bedridden or housebound, but you’re sick today, or you need to stay home with a special-needs child, an aging parent, or someone else who needs your help.

Thanks to 2014 technology, one can easily listen to sermons anytime. What I prefer on Sunday mornings, though, is to worship with a congregation in real time when I’m stuck at home. If you can live-stream on a computer, phone, or tablet, you can join in with a body of Christians with whom you’ll spend eternity, even if you don’t know their names just yet.

Here are just two of many churches whose full services you can “attend” from the comfort of your own bed on a given Sunday:

Tenth Presbyterian Church, Philadelphia: Sundays at 8:50 and 10:50 a.m. (EST)

Park Cities Presbyterian Church, Dallas: Sundays at 8, 9:30, and 11 a.m. (CST)

You also may have services broadcast on your local TV stations. And remember, if you are in Christ, He is with you always.

Do you have a livestream church service you enjoy? What service would you visit in person if you had the chance?

Amazed he signed up for this

heartcoffee
Mark and I were married fifteen years ago today. We never thought he’d be pushing my 36-year-old self around in a wheelchair, but sure enough, over bumpy sidewalks we went on a quick anniversary date for iced coffee and tea while our kids were at a pool party this morning.

Turns out, he signed up for this, and I am so grateful. Fifteen years ago, we both signed up for richer and poorer, better and worse, sickness and health– and we’ve experienced all of the above during these past years. I am even more grateful we both serve a covenant-keeping God, One who upholds His covenant to be our God and to have us as His people, even as we turn away again and again.

Mark and I are both promise-breakers. Through the Holy Spirit, though, we also have the possibility of keeping promises and the assurance of receiving forgiveness when we break them.

Today, I celebrate God’s gift of Mark, who truly is patient and kind, who keeps no record of wrongs, who does not boast, who is not irritable, who loves me with a love that does not quit. I am blessed among women.

A resource for those with chronic illness and a record of blessings along the way