One of the cool (I use this word loosely) things about being in the Lyme community is that it is HUGE. Now on one hand this completely sucks because there are 300,000 new Lyme patients every single year and the majority of the political, social and medical world is ignoring us. But on the other hand, this means that even when I'm laying on the couch all day alone at home watching all my friends post summer fun pictures from all over the world, I know that I'm not really alone. I might be confined to my bed during the majority of the summer and my socialization might be limited to interactions with doctors and my caregiving family, but while reading blogs from all over the world (Lyme is worldwide, don't forget) and connecting to other people who are going through this too, I can keep a little bit of my sanity. So I've collected some of my favorite and most relatable quotes from other blogs about Lyme disease and Chronic illness. Here are a few.
From Maisie of Lyme Chick
"Was I really just hoping, no, wishing my blood-work would come back with poor results?! Yes. And I'm not afraid to admit that. As a Lyme patient I am so hypersensitive to blood tests not reflecting my illness, my real, chronic, debilitating illness. Because I've been told over and over by so many that my tests were indeterminate, or my blood results were 'fine' or heard, 'We just can't find anything wrong with you!' or, 'You're a medical mystery, sweetheart.'"
I liked this quote from this Lyme Warrior because it made me feel normal for every time I have cried after a negative test result or inconclusive lab work up. I will never forget the condescension in the voice of the gastroenterologist when he told me I didn't have Crohn's or Celiacs and my colonoscopy came up clean. He could barely conceal his laugh when I started to cry. He replied, "This is good news. How could you be upset with such good news?" I felt like yelling at him. He wasn't the first gastroenterologist I had seen in hopes of finding an explanation for my symptoms and he wouldn't be the last. This was a year ago and since then I have seen more doctors than I can count and yet my hands are still empty. I have never heard a conclusive diagnosis but I have heard "You're fine," and "We can't find anything wrong with you," more times than I care to remember. When you feel completely miserable, sometimes it's just nice to have a test result legitimize your struggles.
Yolanda Foster
"It feels like someone came in and confiscated my brain and tied my hands behind my back to just watch and see life go by without me participating in it."
This is a rather touching explanation of the brain fog that holds me captive regularly. Luckily, I am not at the point, like many Lyme patients are, where I cannot write or read, but I am noticing distinct lapses of memory and frustrating fog. There is a very relaxing point of consciousness that we all experience right before we fall asleep or as we are naturally waking up. It's a familiar cocoon of dreamland that is just lightly sprinkled with reality. I don't know many people who don't enjoy this feeling. It's comfortable and painless. Now, imagine trying to pull yourself out of this state so you can start your day. But you can't do it. You are stuck . Now, imagine trying to drive like that, or read a textbook, or write a paper. Welcome to my sophomore year of college. Someone confiscated my brain and left me here to just watch life pass.
From Christina of Lady of Lyme:
"No one tells you that if you aren't paying attention, then ever so slowly like a thief in the night you can lose the very essence of who you are. Suddenly you aren't just fighting for your health but also for your identity."
I really liked this quote because it captured something I didn't even realize that I was feeling. I have had illness for the majority of my life but the last year has been very hard. I had a conversation with my mom a couple weeks ago when my syncope episodes peaked and we were both crying and feeling weak and beaten down. I told her that I couldn't even remember the last time my body didn't hurt or my brain wasn't foggy. I couldn't even remember what normal was. We talked for a really long time and I started to realize that it had been just as long since I had felt like myself. I've never been an overtly optimistic person but I've always been determined, persistent, and rather unwaveringly hopeful. While I would never win a "most likely to brighten your day" superlative and I hope to god that "perky" isn't a word that would come to someone's mind when describing me, I pride myself on having the ability to motivate myself and others with my personal drive. But during the last year I had had multiple visits to the hospital with pneumonia, I had been poked and prodded by doctors, I had been put on medication after medication and I was so inexplicably tired. All. of. the. time.
I knew that this series of illness was wearing on my body and I could see all of those changes but while I was forcing myself through a tumultuous and exhausting sophomore slump and trying to piece together all my broken parts between classes, doctors' appointments, and unintentional naps, I hadn't noticed the wear it was taking on my spirit and my own identity. It's a scary realization to make and it can easily fracture your motivation to work towards health when you aren't even sure what you are working for. It's even more startling when these changes start to wear on your relationships and you just sit there watching your life change in front of your eyes. Watching yourself change. But then, you are too tired to fight it. That's when I decided to start this blog, to start chronicling my days of pain and my days of progress in hopes to consistently remind myself what I'm fighting for.
From Lauren Anne of IntheLymelight
"It's so hard not to feel anxious when all that lies ahead is a giant question mark."
This one is a little depressing but it can be so true. Being sick has only drastically changed my life the last 3 month, but I know some people who have had this reality for years. When you are fighting for a diagnosis one of the hardest parts is the uncertainty. I've given up driving, Scotland, my internship, and any chance of a non-virtual social life this summer. Within the last 3 months I watched a relationship that I thought was infallible slowly wear into nothing. I've had to redefine a new normal. When I try to imagine the end or any source of light, it's hard because I have no idea where that end is or where my new beginning starts.
From Lyme Warrior
"You will learn to trust the journey, even when you do not understand it."
I'm pretty sure that this is not an original quote because I vaguely remember reading it on Pinterest or something of that sort. Still, when you are tired of telling yourself to play the cards you are dealt, this is a nice alternative. The timing of my illness is less than convenient. As I have mentioned, I just finished (I did cross the finish line, believe it or not) my sophomore year of college. I had plans to travel to Scotland. I had an internship waiting for me. I had plans, but my journey changed. Everywhere around me I'm watching my friends and classmates take on the world with research grants and internships and study abroad plans. It's a hard pill to swallow (pun intended. pun always intended). Sometimes I just have to remind myself that I do not need to understand why this is happening to me. I don't need to make any lemonade with these moldy, bruised lemons. I just have to trust that I will get where I'm suppose to go. I will have a better storyline than "Girl gets sick." I don't know what my storyline will be but I have a feeling it will include ruling the world.
From Maisie of Lyme Chick
"Was I really just hoping, no, wishing my blood-work would come back with poor results?! Yes. And I'm not afraid to admit that. As a Lyme patient I am so hypersensitive to blood tests not reflecting my illness, my real, chronic, debilitating illness. Because I've been told over and over by so many that my tests were indeterminate, or my blood results were 'fine' or heard, 'We just can't find anything wrong with you!' or, 'You're a medical mystery, sweetheart.'"
I liked this quote from this Lyme Warrior because it made me feel normal for every time I have cried after a negative test result or inconclusive lab work up. I will never forget the condescension in the voice of the gastroenterologist when he told me I didn't have Crohn's or Celiacs and my colonoscopy came up clean. He could barely conceal his laugh when I started to cry. He replied, "This is good news. How could you be upset with such good news?" I felt like yelling at him. He wasn't the first gastroenterologist I had seen in hopes of finding an explanation for my symptoms and he wouldn't be the last. This was a year ago and since then I have seen more doctors than I can count and yet my hands are still empty. I have never heard a conclusive diagnosis but I have heard "You're fine," and "We can't find anything wrong with you," more times than I care to remember. When you feel completely miserable, sometimes it's just nice to have a test result legitimize your struggles.
Yolanda Foster
"It feels like someone came in and confiscated my brain and tied my hands behind my back to just watch and see life go by without me participating in it."
This is a rather touching explanation of the brain fog that holds me captive regularly. Luckily, I am not at the point, like many Lyme patients are, where I cannot write or read, but I am noticing distinct lapses of memory and frustrating fog. There is a very relaxing point of consciousness that we all experience right before we fall asleep or as we are naturally waking up. It's a familiar cocoon of dreamland that is just lightly sprinkled with reality. I don't know many people who don't enjoy this feeling. It's comfortable and painless. Now, imagine trying to pull yourself out of this state so you can start your day. But you can't do it. You are stuck . Now, imagine trying to drive like that, or read a textbook, or write a paper. Welcome to my sophomore year of college. Someone confiscated my brain and left me here to just watch life pass.
From Christina of Lady of Lyme:
"No one tells you that if you aren't paying attention, then ever so slowly like a thief in the night you can lose the very essence of who you are. Suddenly you aren't just fighting for your health but also for your identity."
I really liked this quote because it captured something I didn't even realize that I was feeling. I have had illness for the majority of my life but the last year has been very hard. I had a conversation with my mom a couple weeks ago when my syncope episodes peaked and we were both crying and feeling weak and beaten down. I told her that I couldn't even remember the last time my body didn't hurt or my brain wasn't foggy. I couldn't even remember what normal was. We talked for a really long time and I started to realize that it had been just as long since I had felt like myself. I've never been an overtly optimistic person but I've always been determined, persistent, and rather unwaveringly hopeful. While I would never win a "most likely to brighten your day" superlative and I hope to god that "perky" isn't a word that would come to someone's mind when describing me, I pride myself on having the ability to motivate myself and others with my personal drive. But during the last year I had had multiple visits to the hospital with pneumonia, I had been poked and prodded by doctors, I had been put on medication after medication and I was so inexplicably tired. All. of. the. time.
I knew that this series of illness was wearing on my body and I could see all of those changes but while I was forcing myself through a tumultuous and exhausting sophomore slump and trying to piece together all my broken parts between classes, doctors' appointments, and unintentional naps, I hadn't noticed the wear it was taking on my spirit and my own identity. It's a scary realization to make and it can easily fracture your motivation to work towards health when you aren't even sure what you are working for. It's even more startling when these changes start to wear on your relationships and you just sit there watching your life change in front of your eyes. Watching yourself change. But then, you are too tired to fight it. That's when I decided to start this blog, to start chronicling my days of pain and my days of progress in hopes to consistently remind myself what I'm fighting for.
From Lauren Anne of IntheLymelight
"It's so hard not to feel anxious when all that lies ahead is a giant question mark."
This one is a little depressing but it can be so true. Being sick has only drastically changed my life the last 3 month, but I know some people who have had this reality for years. When you are fighting for a diagnosis one of the hardest parts is the uncertainty. I've given up driving, Scotland, my internship, and any chance of a non-virtual social life this summer. Within the last 3 months I watched a relationship that I thought was infallible slowly wear into nothing. I've had to redefine a new normal. When I try to imagine the end or any source of light, it's hard because I have no idea where that end is or where my new beginning starts.
From Lyme Warrior
"You will learn to trust the journey, even when you do not understand it."
I'm pretty sure that this is not an original quote because I vaguely remember reading it on Pinterest or something of that sort. Still, when you are tired of telling yourself to play the cards you are dealt, this is a nice alternative. The timing of my illness is less than convenient. As I have mentioned, I just finished (I did cross the finish line, believe it or not) my sophomore year of college. I had plans to travel to Scotland. I had an internship waiting for me. I had plans, but my journey changed. Everywhere around me I'm watching my friends and classmates take on the world with research grants and internships and study abroad plans. It's a hard pill to swallow (pun intended. pun always intended). Sometimes I just have to remind myself that I do not need to understand why this is happening to me. I don't need to make any lemonade with these moldy, bruised lemons. I just have to trust that I will get where I'm suppose to go. I will have a better storyline than "Girl gets sick." I don't know what my storyline will be but I have a feeling it will include ruling the world.
Comments
Post a Comment