Yep, I Still Have POTS…

Yes, I still have POTS along with a few other ailments. I am almost finished with all my dental work transitioning to implants.  My symptoms haven’t changed much in the last year, but I also have not gotten worse.  I do not drive more than a couple of miles.  I continue to spend most of my time in my home because the outside world is just too stimulating.  This potsie gal has super power senses! I can hear my husband slurping his coffee on the other side of the house.  I can see double!  So when I talk to you, I am not always sure which version of you to focus on.  I can smell if my neighbor ate garlic for dinner a half mile away.  I have cat like reflexes and become startled easily.   I’m kinda a Ninja.  Just not the cool version.

You would think having an overactive autonomic system would be helpful because you are hyper aware of your surroundings.  Instead, your body remains in the fight or flight mode much of the time.  It’s why we can be painfully fatigued and yet wired  simultaneously.  Just to clarify…I have the first pic, not the second (my apologies, corny Pots joke).

For those who may not be familiar with POTS, below will give you a better understanding.

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The above illustration reveals what the autonomic system controls.  As you can see, it’s what our bodies automatically do without our help.  But for someone with POTS, their autonomic system is not able to do it’s job properly.  Something has triggered reactions that are not normal.  For example, blood pooling in our feet, increased heart rate, digestive issues, neurological symptoms, tremors, etc.  Once these symptoms start, one often passes out or has presyncopal episodes throughout the day.

Sounds like a blast right? 😊   Pots is a spectrum syndrome and one person may exibit  no symptoms while another will be bedridden.  Personally, I have experienced mild symptoms to extended hospital stays.  There is no real rhyme or reason to flares.  Each individual can learn some of their triggers and avoid them altogether.  Other times, it sneaks up on you and you get blindsided.

Here are a few of my personal tips…

  1. ALWAYS have water.  Pack extra.  And then pack some more.
  2. Never leave home without a full days worth of your meds.  You don’t want to be stuck in a store and needing medication.
  3. If you are riding more than 30 min. take a pillow.
  4. If riding is difficult for you, try to remain focused ahead.  Don’t look all around.  That will only exacerbate your symptoms.
  5. Salt…in whatever form of your choosing.  I like having pretzels in my bag.  You have only a small window of time to start eating to lessen your symptoms.
  6. When I start feeling lightheaded in a large store (I rarely go to them because I do get sicker), I down a bottle of water like there is gold at the bottom. For me, this really helps tremendously. 
  7. Shower chairs are your new best friend.  And if  you will turn the water cooler at the very end, it will help the after shower hangover.
  8. Stay connected! Even if it’s on the internet.  It’s important to keep healthy relationships!  While on the flip side, remove toxicity from your life.  I am referring to all forms.  Your body cannot handle it.
  9. Invest in the coziest blankets and sweatshirts possible.  If you have been summoned to your sofa, it’s much more enjoyable if you are comfortable.
  10. Keep a sense of humor!  Otherwise you will want to pinch people’s heads off all the time and sit in a puddle of your own tears.
  11. FIND THE RIGHT DOCTOR!  It is imperative to find a doctor educated and well versed about Dysautonomia.  Otherwise you are wasting your time and money.

I have lived with Pots over eleven years now (3 years with the proper diagnosis).  It is not a journey meant to be taken alone.  If you do not have family or friends who understand, find a Pots support group.  It’s a must!  Don’t disconnect from everyone.  I started a Pots group with a friend of mine on Facebook. It’s called POTSIES UNITE and we are there to support one another however possible.  I share my journey on this blog, as well as on Facebook (Lily in Grace-Fighting Chronic Illness One Step at a Time).  Also, I share on Instagram (karmaharkey.southernmess.bless).

My support system is amazing. I couldn’t do it without them.  My faith is what has kept me afloat at times. The struggle is still there but my faith has grown immensely as I know He is with me every step of the way.  I share my story for those who feel silenced, misunderstood and rejected by those closest to them.  There is hope!  Don’t give up now.  This isn’t the end of your story! ❤️

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