Tuesday, September 21, 2010

Experiencing "Normal"

I woke up yesterday morning with a runny nose and a sore throat. I actually smiled at the thought of being ill with something "normal". Since I work every day with the symptoms of POTS, I figured a cold or allergies would be a breeze! The beginning of the day went pretty much as usual, with just the added nose blowing. Though it would have been much harder without the help of my teacher friend Karen and a parent volunteer. But by the end of the day my body let me know that it was done,fever and fatigue set in. I would definitely need a substitute for the next day. So I went to the office to request a sub, which on this particular day I felt like Oliver begging for some gruel. Or in my words, "Oh please, amazing, wonderful person in charge of all the critical workings of our school, would you please in all your magnificence call a sub for me". My hands quivering as I give her my sub request. I get the look, then I hand her my paperwork and scuffle out of there as quickly as possible. I go back to my room and write my sub plans, which is almost as much work as going in to work myself. Two hours later my sub plans are completed. I'm not sure how understandable they are, but hopefully the sub will make it through the day in one piece!

I get home and cancel my plans for the prayer group that usually comes to my home on Monday nights, and I cheerfully explain to my friends that I think I have a cold. My friend Lisa complements me on my positive attitude about being ill, and I try to explain that it's the first time I think I've had a "normal" illness since my POTS diagnosis. She wishes me a speedy recovery, and I head for bed.

After I hung up the phone I pondered over why having a cold would actually make me happy. What I realized is that having a cold is something everyone can relate to. When you tell someone you have a cold they can go to their memory banks and connect with the typical symptoms of a cold (fever, cough, runny nose, sore throat), and they know it will probably last around a week. I get no quizzical looks from telling people I have a cold, instead I'm told to get some rest, and wishes for a quick recovery.

When I tell people I'm having a bad day with my symptoms of POTS, I usually get a blank stare, and well wishes. There isn't a single person in my daily life who has any idea of what POTS is like. My friends can't go into their lifetime of experiences and relate to what I have. It really is hard to understand an illness that encompasses a system no-one thinks about. No-one thinks about the fact that when they stand up something in their body tells the heart to pump more blood to their head, until that system doesn't work and you stand up and get so dizzy you almost faint. No-one thinks, hey I just ate dinner, I need to send extra blood to the stomach to aide in the digestive process. Not too many people can relate to waking up feeling like you've been chased by a mountain lion, all because your freaky body decided to have an adrenaline rush in the middle of the night for no reason. The average person expects to open their eyes every day and see clearly (unless you have typical vision problems that glasses can correct), blood still needs to be pumped to the eyes so you can see, on a bad POTS day I'm in a blur. No-one thinks to send blood to hands and feet, or what it's like when blood pools to those body parts and they look and feel like stuffed sausages, or the lack of blood flow feels like frost bite. There are no famous people like Michael J. Fox or Annette Funicello to bring a face to this syndrome,and so far I haven't seen epic or a Hallmark movie about POTS either! House has mentioned POTS once in an episode and there was an episode of Mystery Diagnosis that had a POTS patient, but again both shows specialize in rare and unknown disorders. It's funny, because when I was first hospitalized and I didn't know what I had, having so many tests, and the quizzical looks on the doctors faces gave me the feeling of being on an episode of House.

Now add the fact that many in the medical field have never heard of dysautonomia or POTS, can be frustrating. Imagine being in the ER feeling dizzy, heart rate in the 30's and short of breath trying to educate a doctor on your illness. I do carry a computer printout explaining POTS, and the medications I'm on, along with the best way to treat my symptoms if hospitalized. It is a bit odd to walk into an emergency room and tell the doctor to hook you up to an IV and oxygen, and if the symptoms don't improve after an hour to call my neurologist.

I have a cold, my nose runneth over,and I gladly embrace my softie box of tissue. Much better than my POTSy nemesis my porcelain lover.


1 comment:

  1. Well I was going to write congrats on your normal sick but then I saw your FB status. Wishing you a box of the softest tissues for the sniffles and a big hug for the POTS part :(