Bradford POTS Support Group Articles
In this section, members can share topics, such as: local awareness activities, personal experiences and how POTS affects their daily living.
My Daughter’s Story – By Noel C Mckee
You don’t know where it came from but you slowly start to realize something is wrong with you; you start getting light headed and your vision starts blacking out at random times when you stand or move too quick. It gets worse over time; you find that walking it off doesn’t do anything anymore, it sticks around no matter how long you try to walk and keep your eyes from going tunnel-vision. Then one day you faint, and it’s the worst thing you’ve ever experienced. You stay there on the floor for a long while, not having the energy it takes to even move your arms.
You go to the doctors and they run tests, fainting is no laughing matter, but nothing comes up. All the AKG’s and blood tests are normal, but there’s something weird with your pulse when you stand; along with your blood pressure. It’s not enough to diagnose you with orthostatic hypertension. They finally rule that you’re dehydrated, pump you with some fluids, and send you home, but you don’t feel any better. Over time the ill feeling goes away and you can live a normal life again, but you’re worried about passing out. The tunnel vision and lightheadedness never really goes away, but it doesn’t bother you as much. Then suddenly it hits you like a ton of bricks one day, and you can’t escape it. You start feeling ill all the time and your body starts to betray you. Some days you can barely force yourself to eat as your stomach becomes so upset you feel like you’re going to puke at any moment, and any extreme temperature makes it nearly impossible for you to be able to do anything.
You’re always tired, you don’t know how it feels to be fully rested anymore. Even after twelve or more hours of sleep, you’re exhausted; getting out of bed is a chore within itself and doing normal daily routines becomes harder. Dehydration is something you always have to look after; even a single afternoon without a few glasses of water can wreck havoc on your body; your heart beats irregularly without any real reason and you have chest pains and heart flutters, standing is impossible and turning is a dangerous task and something you try to avoid doing pretty much any moment you can. You start getting sick; a lot. Viruses and infections and fevers become something you’re so used to that you can easily tell them apart. Headaches happen normally, seemingly for no reason. All the while, through all the tests and xrays and CAT’s and MRI’s, no doctors can find out what’s wrong with you. You’ve had so many blood tests you can point out spots where the needles have run through your skin time after time again and come back with absolutely nothing. Hospitals and Emergency rooms begin to get on a first name basis with you. They see you often and you see them often.
After a long time waiting, you finally find the doctor who tells you what’s wrong. It’s something with your nervous system, and they can’t even tell you why it’s there. They tell you there’s nothing they can give you to cure it, and it’s something you just have to learn to live with, and manage the best you can in till you MAYBE some day grow out of it. You get relief at first knowing that maybe there’s a chance of hope for you that you might be able to finally be normal again and return to the normal life you had. They don’t tell you that it could possibly give you strokes or that you might never grow out of it. They don’t tell you the struggles it causes as you try to live with this disease that makes your body defy everything you try to do.
You begin to forget how it feels to be healthy, normal. You always feel these symptoms slowly out of reach, not every totally gone. Your friends leave you when you start to not be able to do anything; they betray you and leave you, stop checking up on you. Everyone begins to think you’re faking it and no one believes you because the only thing they ever see is the shaky hands and pale complexion; there’s no real signs to show what’s going on besides the trail that it leaves behind. Depression becomes a thing if it wasn’t already, as you find yourself trapped inside a house unable to do anything. Exercise is hard and often leaves you tired within short amounts of time and weather determines whether or not you’ll be outside that day. Your sensitivity to heat and cold becomes so finely tuned that you can’t even enjoy hot baths for more than ten to fifteen minutes at a time without your heart beating so heavily in your chest that you can feel it pulsing in your face and it ripples the water. Antibiotics and medicines become something that you become insanely familiar with. Your immune system has weakened because of this dysfunction you live with but it’s not serious enough to consider you Auto-immune deficient.
All the while you sit and walk around and try your best to live a life where no one believes that you’re sick; knowing what everyone thinks of you and thinks about what you’re going through.
Try to tell me I’m not sick, go ahead. Look at me right now and tell me I’m not sick.
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