Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Breaking the Ice

Written by Katie. Posted in Ehlers-Danlos Awareness, POTS Awareness, Teaching

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It was bound to happen.

I had my first major POTS spell in front of my principal on Friday.

Let me back up.  The week started off with a Halloween party on Monday.  The kids loved it.  I loved it.  But I was exhausted.  Parties are hard work. 

Tuesday rolled around.  I taught until noon, went home, slept for an hour, and went back to do parent-teacher conferences with Zondra.

I was pretty amazed at how well I was holding up by the time I got home Tuesday night.

Wednesday came and Wednesday went.  I felt some fatigue but nothing out of the ordinary.  It was a pretty normal day with a long, needed afternoon nap.

Then came Thursday.  I taught.  Did okay.  Went home. Slept for a half hour.  Spoke to one of the founders of the National Dysautonomia Research Foundation for an hour, and then returned to school for conferences from 4-7.  The conferences went fine.  When Zondra and I had a break between conferences we sat and chatted about lots of different things.

At 7 I took off to go home.  In the car, I was having a hard time holding my head up.  I massaged and stabilized my neck with one hand while I drove with another.  I walked in the door and Brad could read the signs all over my face.  I was definitely struggling.  From learning along with me this past year, he knew just what to do.  He helped me get into my PJs, he got me water, and my blanket, and warmed up my rice bag heating pad while I collapsed on the couch.  My body was definitely telling me: “Okay, Katie. You’ve hit THE limit.  There are no more spoons left in your stash.”

I laid on the couch while Brad rubbed my feet and I felt the tears run down my face.  I was so exhausted and achy and foggy that I could not think straight.  I eventually made it to the bed and slept a solid 8 hours.

Friday morning I woke up feeling better than the night before…but definitely less than stellar.  I told myself as I was getting out of bed, “C’mon, anyone can get through Friday.”  I followed my normal get ready routine, minus curling my hair, and left for school.  I managed okay in the morning.  I did a lot more sitting while giving lessons which worked out well.  I took my kids to lunch, and that is when I realized that things started to go downhill.

I think it was the overstimulating effect of the lunchroom combined with the fatigue from the week that may have sent my Autonomic Nervous System into overdrive.  I started to feel the yuckiness settle in: the dizziness, the fogginess, the head pain, seeing spots, the extreme tiredness.  I held it together knowing I only had a little bit of time left until Zondra took over for the rest of the day.  I made it back to the classroom okay with the kids.  We read a story and then I sent them to get ready for recess.  My morning was finished.


it is my evaluation year and I had to meet with my principal about my goals before I left for the weekend.

I walked into her office and sat down.  I showed her my goal write-ups, and as I started to explain them, I could not get the words to come out correctly.  I sounded slurry.  I managed to get out to her that I was feeling really foggy and I could tell that I was not getting enough blood to my brain.  She had me sit there while I tried to think clearly.  She was amazing, asking me, “What can I do?  What can I get you?  Water? Sugar? A place to lay down?  I told her I needed water and salt and I quickly had both in my hand.

As I drank my water, ate a few pretzels, and just sat there, I started to feel better.  I became more coherent.  But my emotions and exhaustion and frustration started to take over.  With tears in my eyes, I was trying to explain that I will be okay, I just needed to go home and recover.  My principal was very empathetic, telling me how frustrating it must be, and that I had to keep in mind that last year I was not even teaching.  But I still felt embarrassed.  And mad at that moment that I couldn’t control this episode in front of my boss.

Anyways, after about 40 minutes of recuperating in her office I felt okay enough to drive.  I thanked her and got out of school as fast as I could.  I could feel the floodgates ready to burst open.  I cried all the way home.  I hated how I felt.  Before when I had had episodes it was with people who were close to me, who just “knew.”  This time, it was in front of a person from my professional life and I could not stop it from happening.  I was mad that my body had won.

Since Friday, I have gotten a lot of sleep, a lot of recovery time, and a better perspective.  Having a weekend to recuperate, I have realized how important it is for me to have a medical ID bracelet, which I will be working on getting this week.  I also realized that if I had gone down in the school, most likely no one would have remembered Dysautonomia and Ehlers-Danlos, and it is important for me to keep educating and making people aware.

This was also another big wake up call that I need to listen to my body’s warning signs, before I get to the “sick, can’t function” point.

I have also hung onto the words my principal said to me on Friday.  “Last year, you weren’t here at all.” 

In a way, it feels like I have truly broken the ice with my boss.  She has now seen all of me.  The good and the not so good.

And after a weekend of sleep and regaining perspective, I am okay with that.

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