(This was written before my one year anniversary with POTS back in Dec 2016)
Dear POTS (Postural Orthostatic Tachycardia Syndrome):
This past year with you hasn’t exactly gone the way that I’d hoped. I hoped that I would continue working full-time as a lead teacher, a job that I loved doing and was actually pretty good at. I’d hope that I would once again be able to sing and dance on a stage, something I hadn’t been able to do in years because of my daughter being so young. I had hopes of pursuing a doctorate degree, traveling to new places, taking my daughter to exciting attractions, and spending time with my boyfriend trying whatever the world had to offer. I did not hope to spend the past year learning how to live with you.
December 10th, 2015 is the day that all of those hopes crashed to the floor, splintering into small jagged pieces like a dropped glass. That was the day you came into my life and tried to take it over. You spent the whole year trying to strangle the joy out of everything, teaming up with Ehlers Danlos Syndrome (EDS) to cause as much pain and damage as you could.
The day that you came to me, I actually had plans. But you didn’t ever think about that, did you? My students were preparing to perform a play that I had written and directed. That day I was suddenly overcome with dizziness, lightheadedness, nausea, uncontrollable shaking, and difficulty with stringing words together into a sentence. It took around a month for doctors to stop calling it anxiety and realize that something else was actually going on.
The day I received my diagnoses of POTS and EDS were bittersweet. I was happy to know what was going on in my body, to have a word for it, a phrase that I could scream out as I cursed the sky for allowing you into my life. Yet, I was also deeply saddened by the fact that neither POTS nor EDS has any known cure. I had unknowingly and unwillingly stepped into a lifelong relationship with two illnesses that I knew very little about.
The rest of the year was filled with doctor’s appointment, medical tests, more diagnoses, ER visits, hospital stays, and countless medications. Geez, POTS, you sure know how to spoil a girl. I wrestled with anger and depression as I watched many of my passions slip through my fingers. I had to move to working only part time and let go of many of my responsibilities and tasks. I have worked to discover my new mental and physical limitations, which has been made especially difficult as they seem to change daily. You took an energetic, active woman and turned her into a ball of exhaustion that has to lie down for 20 minutes after a short shower.
I have screamed in frustration, beaten my pillow with my fists, sobbed to depressing ballads, and cursed your name; yet, nothing seems to stop your constant attacks. The more I try to ignore you, the harder you push back, knocking me off of my feet for days at a time. You have shown me that you are not something that I can push through on sheer willpower, or wish away. You, and EDS, are new additions in my life that don’t appear to be going anywhere anytime soon.
I am trying my hardest to work with you. I shovel salty foods, water, and pills down my throat daily. I leave social events early, or stay home, when you are shouting at me to take a break. I listen to your needs and work to meet them every day, and yet, nothing ever seems to be good enough for you. I have grown weary of doctor’s visits, tests, pills, and feeling like I am missing out on life. So far I have been playing nice, but I think that may just have to change.
For our one year anniversary, the thing that I would most like to say to you is: Screw you, POTS. I will NOT let you destroy me. I am a fighter and I will continue to fight to hold on to the things that are most precious to me in life. You may continue to take things away from me, but I will also work to find a way to keep the relationships that are dear to me, infuse passion in all that I can still do, and find the joy in each day that I am alive. Those things you may never take away from me.
PS It may be time to start looking into relationship counseling. Our relationship has not been a very healthy one!
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