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The first time it happened I was singing a solo in front of about 200 people.
As I finished, I noticed that I was having blurry vision and was feeling shaky on my feet.
I carefully descended the stairs from the pulpit and holding on to the edges of the chairs made my way to the back of the sanctuary to the ladies room where I sat in one of the stalls until the dizziness went away.
As soon as I stood up again, it was back.
I went next door to the nursery and asked if I could lay on the floor for a few minutes.
The nursery worker –a nurse practitioner– took one look at my pale, clammy face and told me to lay down.
I assured her that I didn’t think I was actually sick with a cold but just that I was dizzy.
She knew I had thyroid problems and encouraged me to talk to my endocrinologist about what had happened.
Which I did.
He told me it was because I didn’t exercise enough, weighed too much, and I wasn’t consistent with taking my iron supplement (I was, but since my lab numbers weren’t going up, he said I must not be taking them).
That was ten years ago.
Sometime after that, I remember trying to walk through a wooded park with my sister in law and having to stop every 15 or 20 feet to rest. I couldn’t even get to the next park bench before I had to sit down.
I had no idea what was wrong, but I was no quitter! So, I kept pushing myself until I was so dizzy I couldn’t walk.
I lay in a patch of grass along the path until the dizziness and disorientation went away.
I finally admitted that I was beaten.
I just needed to go home.
Maybe I would be able to walk farther next time.
This only got worse.
More recently anything can trigger one of these episodes.
Lack of food.
It seems that any time my system is stressed (physically or emotionally) it resorts to this, and the only way to shut it off is to sit or lay down.
I didn’t know what these episodes were until a few weeks ago when I had an episode while in my doctor’s clinic for IV nutrients.
I had one of my episodes right in front of my doctor.
That’s when the magic word was spoken that explained what was going on.
Now, plenty of people have vasovagal episodes.
Remember that kid who passed out in high school choir even though the director said to never lock your knees?
That was a vasovagal episode.
Here’s the thing though: tons of people have an episode sometime in their lives.
It’s not so common to have them a few times a week for a decade.
Basically, what it means is that stress triggers my blood pressure to drop.
Then, there isn’t enough blood going around to all the parts of my body that really should have blood visiting them regularly.
My legs get shaky.
My breath gets labored.
My mind doesn’t work.
My speech gets slurred.
And I feel all around horrible.
This is basically what I have been referring to as “disoriented” for years now with no explanation of what is going on.
Most doctors I saw just wrote it off.
I honestly thought that it was from low iron and was very disappointed when my iron levels came up and these symptoms didn’t go away.
One time, when I got really really stressed, the symptoms were extremely bad.
I had pushed myself too hard physically and I was dealing with anxiety because it was the first time I had ever not been able to walk and had to use a wheelchair.
The episode that followed ended me up in emergency doctor appointments because my doctor thought I had a heart attack.
I couldn’t breathe.
I had pain in my chest.
I couldn’t walk.
I couldn’t think.
I don’t remember feeling panicked at that moment, but my body was obviously not happy.
Apparently, it is not uncommon for these episodes to be misdiagnosed as a heart problem.
A dozen tests and 6 months later, my doctor still couldn’t find anything wrong with my heart.
Why do I tell you all this?
Because this is the reason I can’t handle drama on my Facebook wall, homeschool groups, author page, or in the comments.
This is the reason all my online spaces have specific rules about how I expect people to behave in my online space.
This is the reason I don’t publish any and all comments to the blog.
I love you all, but I am not willing to risk having one of these episodes and being days in bed –or worse ending up in the ER.
Yeah, I could stop writing, but wouldn’t that be like admitting defeat?
Am I going to crawl in a hole and hide in fear of life?
That’s not really the way I am.
I am more likely to make rules that create drama free environments and remove comments and people who are unkind.
I am more likely to try to do as much and as best as I can to function and live normally until it is obvious that I cannot.
I have been able to significantly minimize my symptoms by lowering my exposure to online drama.
I wish I had known a long time ago what was happening.
All I knew before I started reading up on vasovagal was that being dragged into a single argument on Facebook could easily result in 3 or 4 days where I was unable to walk. (Vasovagal is just a symptom and not an actual diagnosis –that’s yet to come; perhaps POTS or dysautonomia)
It didn’t make any sense –but it was my reality.
Instead of shutting myself off from all people, I made parameters for interaction such as letting people who are my Facebook friends know that if they are argumentative on my wall, I would unfriend them for the sake of my health.
I like walking.
It’s fun to not be stuck in bed unable to function.
I actually dream of riding a bike again someday.
I don’t want to end up in ER or emergency doctor appointments.
So, I limit my online exposure and monitor my online spaces to keep them as stress-free as possible.
I wrote this all out so that if you’re my Facebook friend, or in one of my groups, or commenting on my author page, and wonder why I adhere to “if you can’t say something nice, don’t say anything at all,” you will know why.
I am hoping that understanding will help other people, too: I wonder how many other people have lived with similar symptoms or years with no answers like I have.