Everything that has to do with my condition (onset of symptoms, doctors refusing to listen, treatments) could've significantly been helped if someone, ANYone, had been more aware of what I was dealing with.
It is amazingly demoralizing and depressing to be incarcerated with fatigue, knowing something is wrong with you, and being passed off by doctor after doctor.
In fact, early-on in my onset of symptoms, I spent hours scouring the internet before coming across a single article about POTS. Hopeful, I printed up as much information I could find -- which wasn’t much -- and brought it to my (then) doctor. I, and my findings, were quite quickly brushed off and I spent the next year-and-a-half frustrated and depressed.
My symptoms first started around the Summer of 2006 with palpitations, lightheadness, and a general sense of being more tired than usual. I assumed I wasn't eating enough, or getting enough water, or was just working too hard, and didn't put much thought into it.
The first time I realized something was really wrong was after a year of these symptoms. I was driving home from a college class and was unable to hold the steering wheel. Something as simple as that became inexplicably exhausting; so much that I had to pull over every few minutes to rest my arms. As time went on, I became increasingly lethargic, with no energy to play with my puppy or make dinner. My husband began noticing that I had lost my zeal and humor because laughing -- literally -- made me even more tired.
In the Fall of 2007, I had to drop out of college. These next 12 months sucked. I was in bed, asleep, for 20 hours a day. I literally pulled myself out of the bedroom only to feed my dogs and throw something in the microwave (I was too tired to make a sandwich). I never felt rested. I couldn’t say awake through an entire movie. Eventually, my husband had to begin carrying me around the house because I couldn't walk more than a few steps without needing to lie down on the floor to rest.
My entire life, I had been active and bubbly. I'd spend entire days outside running around, riding bikes, doing gymnastics, etc. Most notably, I had/have such a passion and love for the game of soccer I would spend hours of my free time kicking the ball against a wall in my backyard. And as I played through my high school years, I was recruited by a number of Division I schools. However, the opportunity to play college ball, which has been a dream of mine for so long, ended before it began -- and this is a loss I still often struggle with.
These days I try to play in pick-up games whenever I can -- it's impossible for me to be away from the pitch for too long. But my body is just not capable of playing through a whole game at the level I used to.
In May of 2008, I was slotted for a Tilt Table Test (TTT) -- one of the worst inventions known to man. However, it single-handedly proved that there was something going on and I finally had "evidence" to show to doctors, since my word was -- obviously -- not enough.
(photo from chronicfatiguetreatments.com)
But here is yet another point where some knowledge, any, would’ve helped. The TTT had determined there was something really wrong, but my husband and I still had to carry my results, and everything else I had been tested for, around to doctor after doctor for another three months.
Eventually, I was referred to a cardiologist. Getting rather ticked off, I scoured the internet again. And, after wading through a couple of terrifying possibilities (cancer, ALS) I arrived back at http://www.potsplace.com/
Armed with more information (albeit, very little) I entered the cardiologists’ office, sat down, exchanged pleasantries and then said, "Do you know about Postural Orthostatic Tachycardia Snydrome?"
He, slightly taken aback (you would’ve thought the poor guy ran over my cat or something, with how irritable I was) responded that he did.
This was not the answer I was expecting and it, pretty quickly, quelled my little “now listen up” tantrum. When I asked him if he thought I had it, and he responded with a resolute YES; I could've hugged that man until he turned blue!
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Now that we know what I’m dealing with, it has gotten a little easier. Sometimes I still have to take a nap an hour or two after waking up in the morning, and I'm still never fully "alert" through out the day. Some days, for no reason I can see, my muscles seize up, my blood pressure drops, and I'm back in bed for another 24 hours. And, because it’s still relatively unknown, all the medications are sort of trial and error. It’s almost as if POTS is this incredibly sturdy lock that has to have the correct type of medications in the correct order in the correct dosage – and each lock is different for each person.
However, it is extremely important to note that I have MANY more good days now that I know what's going on. In being proactive with drinking lots of water, eating salty foods, getting plenty of rest, trying new medications, and communicating with my friends and family, I am continually working on -- and getting closer to -- some semblance of "normality".
Every day is a struggle. Never knowing if you will wake up feeling "ok"(and rarely ever doing so) sucks and I would be a liar if I said I didn't have days where I just gave up. However, I think these days are necessary -- sometimes I just have to allow myself to be angry that this has happened. And, I've learned, that that's OK. As long as I know I will eventually get up and keep fighting. Which is what I always do.
Which is what us POTSies always do. :)