I've been in a major "flare up" with my POTS symptoms now for 3 solid months. I also just rounded the corner to my 3rd year anniversary of health hell, and I've come to know one thing for sure about myself: I suck at this!
I know what most of you are thinking: "Oh Queenie! But you're so talented, and beautiful, and fun, and talented, and frankly just knock down gorgeous, and incredibly super intelligent, and shockingly talented, and witty, and an all around great person who doesn't suck at anything you do!" Which is all normally spot on accurate (please tell me I haven't lost my heavy sense of sarcasm here,) but the truth is: I really suck at this!
Let's face it, I'm a terrible sick person. Case in point #1: I don't look sick. Everyone knows that you don't have to look sick on the outside to be a raging health mess on the inside, but I just don't pull this off well. I try to give my best tortured eyes look when I can to express the depth of hell my body is going thru every single day, but I'm just not good at it. Most people who see me would think I'm a healthy 40-something year old woman who maybe just isn't getting enough sleep. They wouldn't possibly know that sitting or standing upright, while trying to exercise, or shop, or cook a meal, or stand in a line, is akin to being hung upside down by your ankles for days on end. How could anyone possibly know that I haven't eaten a real meal since Christmas Eve, which was an epic fail, because every time I eat it's like I've been shot by a horse tranquilizer dart. I have roughly 15 minutes to get myself to a safe place to literally crash and pass out cold until the food is fully digested, which can last anywhere from 2 to 6 hours. This has been going on for weeks, landing me on a mostly liquid diet, but I don't look that sick because the weight I'm losing is replaced with the water I'm retaining to keep my blood volume up. It's torture and it's every single day. I'm hungry and dizzy and weak, but I don't look sick. Friends who see me think I'm doing ok, the medications and treatment protocol must be helping by now, cause I don't look that sick. Even when I look in the mirror sometimes, I can almost fool myself into believing that I'm not that bad off...and then I try and get dressed... another act of torture.
But that's just the beginning of my case! Case in point #2- I'm an impatient patient! After 3 years of this awful roller coaster, you start to learn a thing or two about the medical system, and one thing I know is that I'm a horrible patient. Sure, I follow doctor's orders, I research my condition, I'm willing to experiment with new treatment protocols, I'm organized with my medical information and files, but I've come to find out that's not REALLY what many doctors are looking for in star patients. Most doctors (with the exception of my Mayo team) are looking for docile, unquestioning, medicated drones for patients. The business of medicine is at an all time high, and stats rule the whole industry, meaning those patients that fall within the general treatable framework and can maintain the pharmacological industries (both synthetic and biodentical/natural) win! And I SUCK at that!! Trust me, I would love to find my magic pill that would carry me over to the promised land of improved health, but POTS doesn't really work like that. As of now, it's not a big money making illness, so that makes it hard for many doctors to stay educated on it, and interested in it, other diseases have a much higher profit margin and success rate. So hard as I've tried, I'm really an impatient patient,and consequently, many in the medical field are uninterested in me. I suck at that!
Then there's always case in point #3- I suck at being care taken. Now, in my defense, I'm used to being the doer and care taker. It's specifically been my job the last 13 years and I was just getting really good at it! I was totally in the groove of being a stay at home wife and mother to my loving husband and son, PTA, soccer mom, MOM's Club, parties, socializing, always on the go and always knowing what needed to be done days before it was even a thought for anyone else. I was proud of my job. I love my job! But now things are different. My husband has to step up and work overtime doing his job AND mine. My 12 year old son comes into the bedroom multiple times a day to make sure I'm ok. I'm lucky to have them. I'm not complaining about that, I just suck at being so weak and unable to do the things I love. I struggle every day to come to terms with not being the person I was, mourning the loss of the woman I had spent 37 years creating and cultivating before I became so sick. Sure, I'm still me deep at the core, but so much of what I purposely developed to be me is no longer within my control. It is a very stripped and vulnerable position to be in, and while I love my guys more than anything in the world, I hate being their burden...I suck at that!!!
But the worst of it has to be Case in point #4- I suck at the unknown. And I mean, I seriously suck at the unknown. I'm a planner. I'm goal oriented. I'm driven. I'm a doer. I'm a problem solver. Just ask anyone that knows me. I'm decidedly NOT the "hang around and see how this all works out" kinda gal. I SUCK AT THAT! I try to keep distracted, but my body doesn't cooperate well. Walking, going out to lunch with friends, date time with the hubby, family time, playing with the dog, even writing (it's taken me 3 weeks to work up the mental focus and energy to write this,) are all things I use to cope with stress and trauma, but my body often won't cooperate and let me use these tools. I can't find the rhythm of my new life. I can't lean on what I normally do to help myself. Doctors and friends are running out of advice, because who has this? I'm the only one I know who does. The medical facility that has the latest info is in a whole other state and there's little that's really known about this condition. It manifests itself differently for almost every patient, making it a very personal condition and making me the only expert of my own illness. I'm no medical expert! I suck at that! How do I make it better when the treatment is so slow to take effect and/or just doesn't work? Mayo says I'll get better...probably...maybe...likely, but that's not good enough for me. I want to know how, when, why, and what can I do in the meantime. Again, don't get me wrong, I strive every day to get used to a new normal, work on new treatment options and ideas, write when I can to help keep the stress down, walk when I can to keep my head clear, but it still doesn't take away from the fact that I suck at this!
Sometimes when I'm super frustrated and flat on my back staring at the ceiling, I fantasize that Donald Trump will stroll thru my bedroom door with his freakishly disturbing hair style and walk right up to me with those creepy pouty lips of his and say "Queenie, we thought you'd do a better job with this illness thing. We had a lot of hopes for you. You looked a lot stronger than you proved to be and frankly, you've been a huge disappointment. Queenie, it's over, YOU'RE FIRED!" And then I'd walk out of my bedroom door, feeling like a million bucks, and resume my life. I'd be great at that.
