i know this isn't really my usual fare exactly but i need to rant so... i guess that's what this is. i don't even know if it's appropriate to put on youngwritersproject as opposed to like a journal or something because it's not a poem or a work of art but just... i don't know, that's where my head is.
i want to know what's wrong with me. i know something is, it's not normal to have heart rates at to 150 for up to a week at a time when there's no significant source of stress in your life. it's not normal to go to sleep with your heart racing and wake up with it still racing. extreme head rushes and ice cold hands and feet and legs puffing up when you sit cross legged for too long aren't normal.
it's hard to express this because to someone who's not having these problems it seems like the ideal solution is to hear that you're fine because then you're not in danger and don't have to make any drastic changes. but i already know something is wrong in here so hearing that nothing is wrong is invalidating and makes me feel more helpless than ever. if nothing is wrong in me then that means that there's no way for it to be treated, no way to make it better and when the easiest explanation is anxiety people will tell me that i just need to meditate and think peaceful thoughts and get more exercise and believe me, i have tried those things and if something were going to help then it would have already.
the young writers project edition of this saga started a while ago, so i'll just refresh it: when i was twelve years old i started experiencing continuous shortness of breath. my heart rate was higher than usual. sometimes i would feel dizzy and nauseous too. i got less sleep because i was constantly tossing and turning and trying to breathe and my heart would spike. incidentally, my mental health plummeted due to season depression during this time so there was no one i could tell about this. when my breath ran out i would get a feeling like something was pressing downwards inside my skull and a pressure in my chest that wouldn't go away until i took a certain, a very specific sort of deep breath that crested some internal hill and alleviated it for a few minutes. this has been happening since i was twelve and has never really stopped. i've gotten used to it. i've gotten good at adjusting my breathing patterns to the point where i can take that certain kind of breath almost unconsciously. i only notice what's going on when i think about it or when i'm lying down, because i have nothing else to think about. a variety of other symptoms have come in and out to accompany it: sometimes brain fog, sometimes nauseau, sometimes head rushes, sometimes icy hands.
after eight months of this i finally told my parents and they took me to the doctor. i was so afraid that when they took an ekg, my heart rate was over 200 and they sent me to dartmouth. i missed the first day of eighth grade because i was lying shirtless on a table in a darkened room, staring at a glowing decal of a hot air balloon on the ceiling while a nurse rubbed a goo-covered prodding thing over my ribs and i listened to the noise of my heart, like something between the tardis and a washing machine, on the monitor. and then after all this, a cardiologist came in and looked me over and bluntly informed me that all my symptoms were classic symptoms of anxiety and we were to go home. they didn't ask me how i felt, or if i had a habit of worrying. they just looked at me, determined that my heart was in working order and i was a teenage girl, and gave me a reason that didn't satisfy me in the slightest.
my parents were immensely relieved by this news. i can see how they would have been. i can only imagine what they might have been thinking--that i had heart disease, or an acute failure of the nervous system, or god only knows what else. being told by a medical authority that it was only a simple mental health condition that affects 34 percent of people was a massive relief for them. but it wasn't for me. i had wanted a simple solution. anxiety was not a simple solution because we hadn't been given a solution. not meditation, medication, therapy, or anything. the cardiologist only told me that as long as the symptoms didn't stop me from doing things, i should ignore them. he expected me to live with this discomfort simply because it wasn't a sign of heart failure.
and i know i'm lucky. there are people with worse symptoms. there are people who have health problems, diagnosed or otherwise, that genuinely get in the way of them doing things. i know that there are people who have severe panic attacks that could strike at any moment. people who have anxiety that genuinely gets in their way.
i could just live with the symptoms that i have forever and they wouldn't necessarily impede me too badly. i've gotten used to it. it's been four years. a quarter of my life at this point. four years of doing nothing for a while and then thinking of something new, testing for it and coming up negative. i now know that my iron levels are fine, my thyroid is healthy and i have no significant vitamin deficiencies. my parents tell me regularly that it's possible i have a genetically stressed-out nervous system which is running wild despite my relatively stable and rational mental state. but this doesn't... make sense to me. how can i have anxiety without, you know, having anxiety? if i have anxiety, why did not a single one of the treatments--medications, supplements, remedies, exercise, surely at least one of them would have impacted something somewhere--do anything? on those nights when i lie awake at three o'clock in the morning square breathing, meditating, thinking about nothing and feeling my heart thrash and threaten to burst out of my chest, surely one of those breathing exercises would have sent the messages to my confused nervous system that there was no need to be stressed out. surely the anxiety medications i've been on for three months would have calmed my nervous system. and it's true that i've had less overtly bad days than before. this summer my heart rate was elevated for almost a week continuously. i hardly slept, i cried daily and i couldn't focus on anything because my body was so exhausted from the full-scale rebellion being launched within it. that hasn't happened since. but rather than seeing a return to something normal i've just seen a return to my baseline level of shallow breathing, fast heart and frustration.
so i'm going off my medication.
it's a conscious, calculated decision. this medication, just like all the others, have done nothing for me. it's a decision made with the help of my family and my doctor. and i don't expect it to change anything. if anything i expect it to make things worse.
i said a month ago that this would be a long and frustrating journey. and it is. i'm still no closer to any kind of answers. the last round of blood testing i had done ended when the hospital fulfilled a months-old test order on it. every time i try and communicate to my parents just how irrational i think their 'stressed out body, calm brain' theory is, i get too frustrated and end up inarticulately shaking my head and waving my hands and they just tell me they know i don't believe it but it's true and we'll just have to wait and see.
so i'm waiting. titrating off the medication is going to take three weeks. i have no idea how long i'll have to wait after that before anything happens. i have no idea how far my doctor, who is a medical doctor but works at a naturopathic clinic, will be willing to go with me before she concludes that i am a hypochondriac with physical anxiety and i will just have to deal with it. ihave no idea what is wrong with me. everyone in my life has told me that some kind of physical anxiety response is the likeliest but that just doesn't make any sense to me.
and worse, i don't know what to expect and not knowing that makes things so difficult. should i expect no solution? do i just have a weird body and i'm going to be like this forever? do i have a serious chronic illness and it's going to be like this forever? it hasn't worsened over the past four years so i hope that means it's unlikely to actually kill me, but honestly who knows. time after time i've gotten my hopes up when we tested me for one thing or another with an easy solution, nd each time the results came back negative.
and if i'm being completely honest, i would rather have an answer even if the answer isn't one that i love, even if the answer is that i'm going to have to live with my body being like this forever, than no answer at all. if this isn't going to change then i know the parameters i am working within. i know why it is this way, maybe i even know some things i can do to make my life easier even if i can't fix this. if it is fixable, or the symptoms can be reduced, then i just want to know. not knowing what to expect just fills me with this jittery existential dread.
and for right now all i can do is wait. and wait, and wait, and wait until something happens or someone finds an answer. and try not to let it drive me up the wall.
i want to know what's wrong with me. i know something is, it's not normal to have heart rates at to 150 for up to a week at a time when there's no significant source of stress in your life. it's not normal to go to sleep with your heart racing and wake up with it still racing. extreme head rushes and ice cold hands and feet and legs puffing up when you sit cross legged for too long aren't normal.
it's hard to express this because to someone who's not having these problems it seems like the ideal solution is to hear that you're fine because then you're not in danger and don't have to make any drastic changes. but i already know something is wrong in here so hearing that nothing is wrong is invalidating and makes me feel more helpless than ever. if nothing is wrong in me then that means that there's no way for it to be treated, no way to make it better and when the easiest explanation is anxiety people will tell me that i just need to meditate and think peaceful thoughts and get more exercise and believe me, i have tried those things and if something were going to help then it would have already.
the young writers project edition of this saga started a while ago, so i'll just refresh it: when i was twelve years old i started experiencing continuous shortness of breath. my heart rate was higher than usual. sometimes i would feel dizzy and nauseous too. i got less sleep because i was constantly tossing and turning and trying to breathe and my heart would spike. incidentally, my mental health plummeted due to season depression during this time so there was no one i could tell about this. when my breath ran out i would get a feeling like something was pressing downwards inside my skull and a pressure in my chest that wouldn't go away until i took a certain, a very specific sort of deep breath that crested some internal hill and alleviated it for a few minutes. this has been happening since i was twelve and has never really stopped. i've gotten used to it. i've gotten good at adjusting my breathing patterns to the point where i can take that certain kind of breath almost unconsciously. i only notice what's going on when i think about it or when i'm lying down, because i have nothing else to think about. a variety of other symptoms have come in and out to accompany it: sometimes brain fog, sometimes nauseau, sometimes head rushes, sometimes icy hands.
after eight months of this i finally told my parents and they took me to the doctor. i was so afraid that when they took an ekg, my heart rate was over 200 and they sent me to dartmouth. i missed the first day of eighth grade because i was lying shirtless on a table in a darkened room, staring at a glowing decal of a hot air balloon on the ceiling while a nurse rubbed a goo-covered prodding thing over my ribs and i listened to the noise of my heart, like something between the tardis and a washing machine, on the monitor. and then after all this, a cardiologist came in and looked me over and bluntly informed me that all my symptoms were classic symptoms of anxiety and we were to go home. they didn't ask me how i felt, or if i had a habit of worrying. they just looked at me, determined that my heart was in working order and i was a teenage girl, and gave me a reason that didn't satisfy me in the slightest.
my parents were immensely relieved by this news. i can see how they would have been. i can only imagine what they might have been thinking--that i had heart disease, or an acute failure of the nervous system, or god only knows what else. being told by a medical authority that it was only a simple mental health condition that affects 34 percent of people was a massive relief for them. but it wasn't for me. i had wanted a simple solution. anxiety was not a simple solution because we hadn't been given a solution. not meditation, medication, therapy, or anything. the cardiologist only told me that as long as the symptoms didn't stop me from doing things, i should ignore them. he expected me to live with this discomfort simply because it wasn't a sign of heart failure.
and i know i'm lucky. there are people with worse symptoms. there are people who have health problems, diagnosed or otherwise, that genuinely get in the way of them doing things. i know that there are people who have severe panic attacks that could strike at any moment. people who have anxiety that genuinely gets in their way.
i could just live with the symptoms that i have forever and they wouldn't necessarily impede me too badly. i've gotten used to it. it's been four years. a quarter of my life at this point. four years of doing nothing for a while and then thinking of something new, testing for it and coming up negative. i now know that my iron levels are fine, my thyroid is healthy and i have no significant vitamin deficiencies. my parents tell me regularly that it's possible i have a genetically stressed-out nervous system which is running wild despite my relatively stable and rational mental state. but this doesn't... make sense to me. how can i have anxiety without, you know, having anxiety? if i have anxiety, why did not a single one of the treatments--medications, supplements, remedies, exercise, surely at least one of them would have impacted something somewhere--do anything? on those nights when i lie awake at three o'clock in the morning square breathing, meditating, thinking about nothing and feeling my heart thrash and threaten to burst out of my chest, surely one of those breathing exercises would have sent the messages to my confused nervous system that there was no need to be stressed out. surely the anxiety medications i've been on for three months would have calmed my nervous system. and it's true that i've had less overtly bad days than before. this summer my heart rate was elevated for almost a week continuously. i hardly slept, i cried daily and i couldn't focus on anything because my body was so exhausted from the full-scale rebellion being launched within it. that hasn't happened since. but rather than seeing a return to something normal i've just seen a return to my baseline level of shallow breathing, fast heart and frustration.
so i'm going off my medication.
it's a conscious, calculated decision. this medication, just like all the others, have done nothing for me. it's a decision made with the help of my family and my doctor. and i don't expect it to change anything. if anything i expect it to make things worse.
i said a month ago that this would be a long and frustrating journey. and it is. i'm still no closer to any kind of answers. the last round of blood testing i had done ended when the hospital fulfilled a months-old test order on it. every time i try and communicate to my parents just how irrational i think their 'stressed out body, calm brain' theory is, i get too frustrated and end up inarticulately shaking my head and waving my hands and they just tell me they know i don't believe it but it's true and we'll just have to wait and see.
so i'm waiting. titrating off the medication is going to take three weeks. i have no idea how long i'll have to wait after that before anything happens. i have no idea how far my doctor, who is a medical doctor but works at a naturopathic clinic, will be willing to go with me before she concludes that i am a hypochondriac with physical anxiety and i will just have to deal with it. ihave no idea what is wrong with me. everyone in my life has told me that some kind of physical anxiety response is the likeliest but that just doesn't make any sense to me.
and worse, i don't know what to expect and not knowing that makes things so difficult. should i expect no solution? do i just have a weird body and i'm going to be like this forever? do i have a serious chronic illness and it's going to be like this forever? it hasn't worsened over the past four years so i hope that means it's unlikely to actually kill me, but honestly who knows. time after time i've gotten my hopes up when we tested me for one thing or another with an easy solution, nd each time the results came back negative.
and if i'm being completely honest, i would rather have an answer even if the answer isn't one that i love, even if the answer is that i'm going to have to live with my body being like this forever, than no answer at all. if this isn't going to change then i know the parameters i am working within. i know why it is this way, maybe i even know some things i can do to make my life easier even if i can't fix this. if it is fixable, or the symptoms can be reduced, then i just want to know. not knowing what to expect just fills me with this jittery existential dread.
and for right now all i can do is wait. and wait, and wait, and wait until something happens or someone finds an answer. and try not to let it drive me up the wall.
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