Living In My Body
There's something specifically awful about being sick (and surprisingly it's not trying to type with swollen fingers.. well, that does stink, but I digress). It's deeply isolating.
I know that it's isolating in a physical sense, I spend an immense amount of time alone. My days consist of seeing doctors, sleeping the majority of the day, trying to force some food in to try to maintain my weight (not really working), and pushing through an unpleasant but necessary drug induced stupor to try to get anything else done. My tolerance for food is at an all time low, eating even small amounts of anything that's not brothy or fermented costs me hours of suffering.
It starts with hiccoughing - hic, ow. hic, ow. hic, ow. Then within a few minutes, bloating and rancid burps from the rot that's happening in my stomach that doesn't move stuff or perhaps from my burning, tight throat and all the acid that's inevitably there. I get sharp, shooting pains in my stomach that move down my abdomen and shoot back to my kidneys. Suddenly, waistbands are cutting into my stomach. Looking like I'm preggo, and I hurt all over, as if the intensity of the pain in my abdomen just couldn't be contained in one part of me. Meanwhile, I've been on a mental decline. I'm experiencing the world in a fog. There's nothing outside of this painful body. My eyes get glazed over, my awareness dwindling, fading... Double doses of narcotics make the overall malaise slightly more tolerable, if not the specific pains.
Not to mention the hunger. The hunger is always there. It claws at the inside of me, eating me up instead. I ache. I see food pass me by, knowing how much it will hurt me if I try to eat it, but oh it seems so wonderful. I romanticize dinner now. If only it could be me, like it is for all the other people. Food is an intimate relationship I'm missing out on. Some days, things feel calmer, and the ravenous hunger can find its satiety. Those days, I will eat and the whole world will fade away, as if the world around me has become a blank canvas and yes! I can fall in love with my bowl of Pho, or my dosai, or my princess spaghetti-o's (a childhood favorite makes its way back).
Elimination, when it happens, is the absolute worst. It's getting better, but I think it's largely because I'm not eating. When it comes on, it's usually pretty short after the eating process. Constipation is a constant, but the runs - that's the moment I dread. Mostly with food, sometimes with exertion - I know the instant it's about to come on. I can hold off for a little bit at the price of more excruciating abdominal pain, and usually I do because I know exactly what's coming. When you get to the toilet for a loose stool, you probably feel relief. It happens to all of us now and again. When I do, the tension is so high in my digestive tract and everything burns. The burning and cramping are so severe, so incredibly sharp and painful that I have to take my bowel movements in short shifts. I turn chalk-white and can feel the heat on the surface of my skin, sweat beading uncomfortably. My inner monologue can turn quickly into a groaning outer monologue because what semblance of control I have left is spent keeping each pass short enough that I don't pass out from the pain. Pass one, it will feel better. Pass two, it can't go on forever. Pass three is where I stop being able to put my pain or wishes into words anymore, I'm just trying trying trying to be with my body and not be angry. Pass four, I wish I would die. Pass five, Is relief coming? I have to sit here longer and make sure. I don't think it's here yet, at least one more. Pass six, things are getting better. Can someone hear me? Oh my gosh, I don't want anyone to hear me. Pass seven, I think this one and one more. Breathe, just breathe. Pass eight, Ahh, okay, oh my gosh. Relief. I gather myself and hopefully it was just me alone that day, but if it wasn't then I know the person I'm with will ask me if I'm okay. Don't worry, person, I'm just fine now. I'll only be white or grey, gaunt and sweaty for another fifteen minutes.
This last week has been the most physically difficult time of my whole life. I thought treating my food aversions, fears and emotional blocks as anorexia would alleviate these struggles. It turns out anorexia is a symptom, not a cause.
My joints are swelling and fragile. They're not huge and it's hard to specify what the pain is like. It ebbs and flows, but when its present it makes its presence known. Braces help some, especially as the pain follows this popping, stretchy feeling where I make a simple movement and it feels like something came out of place. OW. Something is wrong with my shoulder. I was just turning over in my bed, but it just crunched out and hurt so sharply, then crunched back into place and it's achey. It always starts in that spot between my shoulder blades, the place where tension crunches up no matter how much I work on it. I can always get a few good pops, it releases some of that pain. But it still feels like my hunchback. Then the ankle. No matter what I do, how effectively I stretch and rest and ice, the tension is building. I think I'm fine, then foot down and OW, the pain shoots up the back left side. It's getting worse. Sometimes it looks swollen. My left jaw gets so sore. I'll open and close my mouth, get it to crunch and pop. Pop my neck. Pop my fingers. My rings don't fit anymore, not on swollen sausage fingers. It's the middle knuckle on the pointer of my right hand, that's the worst one. It feels hot. It's starting to be like when I got those big, blistering sores on all my fingers a couple summers ago - I recognize the lead up to that. My fingers change colors to sort of purple grey and the sore painful spots get fleshy pink spots above them.
Breathing certain ways, usually with laughter or cardiac exertion means sharp chest pain that pushes all the way to my back. My breath catches more and I find myself panting for a moment. I don't know if it's just pain or the cardiac symptoms themselves, but I'd describe it like a fish out of water: panting for air that feels empty of oxygen, my heart hurts, it feels like it's suffocating and the breathing doesn't make it better, it just hurts worse. My eyes get wide with fear and I have to shut the world out because if I can just get the breathing back then I can make sure my heart is working. Other people are there, knowing full well that I'm experiencing something not so temporary as to be unable to hurt me permanently, I turn away so they can't see that primal fear in my eyes. The doctors have never been able to replicate this.
The hives are getting so annoying. Hot, red patches sometimes, mostly itchy rashes all over. They hide in my clothes mostly, but a big one will open up into a sore on my face, on my leg. They mostly come up on my chest and collarbone or my thighs or my neck. But they do make their appearances everywhere. They burn and then they open, oozing a thin clear film but it hurts the same.
It's not really raynaud's anymore when my mom can feel a physical difference of heat on the surface of my skin above my knee or elbow. I'm not constantly cold, sometimes the heat of the swelling gets to me, but when I get cold, I get cold. Gloves, socks, boots, sweaters, mittens, coats, layers... it doesn't matter, once it's gone, it's gone. I'll be under all of those things and freezing. I'm at the point where it's so constant in my extremities that I'm unaware of how cold I am a lot of the time. I've taken to touching my hands and feet a lot to find out how cold I am. Now it burns when the heat comes back, but I try anyway. When it's bad, even heating pads and body heat won't warm me up. Only hot water will do. A few extra baths for me, I guess.
Sometimes it's the opposite direction. Sometimes the blood gets there but then it's like it doesn't get back. It hurts when this starts. It hurts so much when the blood pools there. It's like having my limbs on fire, it's a burning and throbbing sensation, like the shape of my body is a balloon and it's being pushed and stretched to its limit. My extremities are hot and swollen and the fog comes on thick. I can't stand up, I can't think straight, and then the migraines start. In the forehead or at the base of my skull, each with it's own myriad of horrors. If it's in the back of my head, my vision blurs a little, dancing lights appear in my field of vision, and if it continues long enough... my peripherals go first. It's just blurring and then it turns grey and quite suddenly, my field of vision is closing around my pupil. It rarely goes completely, but it has before.
Going out, living a normal life with these symptoms... not likely, in my current state. One answer has been found - gastroparesis (the paralysis of my gastrointestinal tract). I wish more would come, but I often wonder if they really will. I've been seeking diagnosis for many, many years. Not only are these physical symptoms so unrelatable to most people, especially my peers in age, but they are associated with complicated and difficult feelings associated with topics not limited to, but including: illness, disability, self-worth, drug use, anorexia, mental illness, social standards, taboos, guilt, fear, vulnerability and many others. To say that people are frequently paralyzed or reacting unsupportively or unkindly to me on a frequent basis is a massive understatement. I have plenty of thoughts and theories on this, but honestly, I'll never really know why.
I don't really know why it is that I feel so alone a lot of the time. I'm really grateful for the amazing friends I do have. There are some people that are worth their weight in gold as far as support are concerned. My mom, my bishop's wife, Emerald and Stephanie are those that I get the benefit of seeing and being supported by awesomely and unconditionally. Some people weave into and out of my life offering kindness and validation. But for the most part, I'm isolated by everyone else. Sometimes it's the circumstance of, "Oh, are you still sick?" or, "Are you feeling better?" I don't know how to answer those questions. When someone sees a brace and asks, "Did you have an accident?" it hurts because it reminds me of the times that people got mad at me because they couldn't see my illness.
I've been bullied, discriminated against, patronized and invalidated because of my illness (and because of many other things, too). I've had people roll their eyes after I had to bail yet again or didn't get back to them. I've been told I was a liar and lazy and that I was making it up. I've been ignored by docs and by others because I've had mental health history. I came out and said I had food problems and a problem with weight and voluntarily went into treatment for anorexia. You know what? I still got sick. I still suffered, mostly alone where no one could see it. And even though there have been times where I've been stubbornly independent and proud, I've honestly never turned down an offer for a blessing, or an opportunity to do something I'm capable and comfortable doing with a group of people who haven't been mean, neglectful or abusive to me.
A lot of people tell me, "Let me know what I can do for you," and then they disappear. Honestly, I don't know what you can do. If you're not a doctor, I can't get the physical help I need from you. But I wish people wouldn't just forget about me after they said that to me. I wish they would still try to do things for me even if I can't tell them what it is that I need. I don't really know what I need from my peers, from my friends. Sometimes I wonder if I even have friends like other people do. I know for sure that the friends I do have are the ones who try to do nice things for me without being asked every time. Very few people do that for me, really. Most people think I'm not very productive, I guess. They get really tired of how tough my life is, how I'm not feeling great emotionally about all of this, and how the problem isn't solved, I guess.
I don't really need solutions, I need friends. I need people that will be kind to me without me having to run around and run the relationship. I'm so tired. I'm so sick. I'm so weary. I'm so alone so much of the time. I feel like I have so many things to offer and I can't quite fit in with the rest of the world because I can't do what you can do, I'm not physically capable. At least not 100% of the time (my illness comes in flares, whatever my illness is). And so I get shunted to the side, because I'm not the fun one or popular. I don't get parties started, I'm not cool. I am happy, despite it all. Mostly, I'm someone to call when life gets real, because I've been dealing with it a lot longer than was really appropriate for me to be dealing with it. Longer than most of my peers. And most likely, in more ways than most of them still do.
I'm pretty good at holding down the fort, and that's fine. I just wish sometimes the burden could be shared a little more.
Love and Admiration,
Shareeta
I know that it's isolating in a physical sense, I spend an immense amount of time alone. My days consist of seeing doctors, sleeping the majority of the day, trying to force some food in to try to maintain my weight (not really working), and pushing through an unpleasant but necessary drug induced stupor to try to get anything else done. My tolerance for food is at an all time low, eating even small amounts of anything that's not brothy or fermented costs me hours of suffering.
It starts with hiccoughing - hic, ow. hic, ow. hic, ow. Then within a few minutes, bloating and rancid burps from the rot that's happening in my stomach that doesn't move stuff or perhaps from my burning, tight throat and all the acid that's inevitably there. I get sharp, shooting pains in my stomach that move down my abdomen and shoot back to my kidneys. Suddenly, waistbands are cutting into my stomach. Looking like I'm preggo, and I hurt all over, as if the intensity of the pain in my abdomen just couldn't be contained in one part of me. Meanwhile, I've been on a mental decline. I'm experiencing the world in a fog. There's nothing outside of this painful body. My eyes get glazed over, my awareness dwindling, fading... Double doses of narcotics make the overall malaise slightly more tolerable, if not the specific pains.
Not to mention the hunger. The hunger is always there. It claws at the inside of me, eating me up instead. I ache. I see food pass me by, knowing how much it will hurt me if I try to eat it, but oh it seems so wonderful. I romanticize dinner now. If only it could be me, like it is for all the other people. Food is an intimate relationship I'm missing out on. Some days, things feel calmer, and the ravenous hunger can find its satiety. Those days, I will eat and the whole world will fade away, as if the world around me has become a blank canvas and yes! I can fall in love with my bowl of Pho, or my dosai, or my princess spaghetti-o's (a childhood favorite makes its way back).
Elimination, when it happens, is the absolute worst. It's getting better, but I think it's largely because I'm not eating. When it comes on, it's usually pretty short after the eating process. Constipation is a constant, but the runs - that's the moment I dread. Mostly with food, sometimes with exertion - I know the instant it's about to come on. I can hold off for a little bit at the price of more excruciating abdominal pain, and usually I do because I know exactly what's coming. When you get to the toilet for a loose stool, you probably feel relief. It happens to all of us now and again. When I do, the tension is so high in my digestive tract and everything burns. The burning and cramping are so severe, so incredibly sharp and painful that I have to take my bowel movements in short shifts. I turn chalk-white and can feel the heat on the surface of my skin, sweat beading uncomfortably. My inner monologue can turn quickly into a groaning outer monologue because what semblance of control I have left is spent keeping each pass short enough that I don't pass out from the pain. Pass one, it will feel better. Pass two, it can't go on forever. Pass three is where I stop being able to put my pain or wishes into words anymore, I'm just trying trying trying to be with my body and not be angry. Pass four, I wish I would die. Pass five, Is relief coming? I have to sit here longer and make sure. I don't think it's here yet, at least one more. Pass six, things are getting better. Can someone hear me? Oh my gosh, I don't want anyone to hear me. Pass seven, I think this one and one more. Breathe, just breathe. Pass eight, Ahh, okay, oh my gosh. Relief. I gather myself and hopefully it was just me alone that day, but if it wasn't then I know the person I'm with will ask me if I'm okay. Don't worry, person, I'm just fine now. I'll only be white or grey, gaunt and sweaty for another fifteen minutes.
This last week has been the most physically difficult time of my whole life. I thought treating my food aversions, fears and emotional blocks as anorexia would alleviate these struggles. It turns out anorexia is a symptom, not a cause.
My joints are swelling and fragile. They're not huge and it's hard to specify what the pain is like. It ebbs and flows, but when its present it makes its presence known. Braces help some, especially as the pain follows this popping, stretchy feeling where I make a simple movement and it feels like something came out of place. OW. Something is wrong with my shoulder. I was just turning over in my bed, but it just crunched out and hurt so sharply, then crunched back into place and it's achey. It always starts in that spot between my shoulder blades, the place where tension crunches up no matter how much I work on it. I can always get a few good pops, it releases some of that pain. But it still feels like my hunchback. Then the ankle. No matter what I do, how effectively I stretch and rest and ice, the tension is building. I think I'm fine, then foot down and OW, the pain shoots up the back left side. It's getting worse. Sometimes it looks swollen. My left jaw gets so sore. I'll open and close my mouth, get it to crunch and pop. Pop my neck. Pop my fingers. My rings don't fit anymore, not on swollen sausage fingers. It's the middle knuckle on the pointer of my right hand, that's the worst one. It feels hot. It's starting to be like when I got those big, blistering sores on all my fingers a couple summers ago - I recognize the lead up to that. My fingers change colors to sort of purple grey and the sore painful spots get fleshy pink spots above them.
Breathing certain ways, usually with laughter or cardiac exertion means sharp chest pain that pushes all the way to my back. My breath catches more and I find myself panting for a moment. I don't know if it's just pain or the cardiac symptoms themselves, but I'd describe it like a fish out of water: panting for air that feels empty of oxygen, my heart hurts, it feels like it's suffocating and the breathing doesn't make it better, it just hurts worse. My eyes get wide with fear and I have to shut the world out because if I can just get the breathing back then I can make sure my heart is working. Other people are there, knowing full well that I'm experiencing something not so temporary as to be unable to hurt me permanently, I turn away so they can't see that primal fear in my eyes. The doctors have never been able to replicate this.
The hives are getting so annoying. Hot, red patches sometimes, mostly itchy rashes all over. They hide in my clothes mostly, but a big one will open up into a sore on my face, on my leg. They mostly come up on my chest and collarbone or my thighs or my neck. But they do make their appearances everywhere. They burn and then they open, oozing a thin clear film but it hurts the same.
It's not really raynaud's anymore when my mom can feel a physical difference of heat on the surface of my skin above my knee or elbow. I'm not constantly cold, sometimes the heat of the swelling gets to me, but when I get cold, I get cold. Gloves, socks, boots, sweaters, mittens, coats, layers... it doesn't matter, once it's gone, it's gone. I'll be under all of those things and freezing. I'm at the point where it's so constant in my extremities that I'm unaware of how cold I am a lot of the time. I've taken to touching my hands and feet a lot to find out how cold I am. Now it burns when the heat comes back, but I try anyway. When it's bad, even heating pads and body heat won't warm me up. Only hot water will do. A few extra baths for me, I guess.
Sometimes it's the opposite direction. Sometimes the blood gets there but then it's like it doesn't get back. It hurts when this starts. It hurts so much when the blood pools there. It's like having my limbs on fire, it's a burning and throbbing sensation, like the shape of my body is a balloon and it's being pushed and stretched to its limit. My extremities are hot and swollen and the fog comes on thick. I can't stand up, I can't think straight, and then the migraines start. In the forehead or at the base of my skull, each with it's own myriad of horrors. If it's in the back of my head, my vision blurs a little, dancing lights appear in my field of vision, and if it continues long enough... my peripherals go first. It's just blurring and then it turns grey and quite suddenly, my field of vision is closing around my pupil. It rarely goes completely, but it has before.
Going out, living a normal life with these symptoms... not likely, in my current state. One answer has been found - gastroparesis (the paralysis of my gastrointestinal tract). I wish more would come, but I often wonder if they really will. I've been seeking diagnosis for many, many years. Not only are these physical symptoms so unrelatable to most people, especially my peers in age, but they are associated with complicated and difficult feelings associated with topics not limited to, but including: illness, disability, self-worth, drug use, anorexia, mental illness, social standards, taboos, guilt, fear, vulnerability and many others. To say that people are frequently paralyzed or reacting unsupportively or unkindly to me on a frequent basis is a massive understatement. I have plenty of thoughts and theories on this, but honestly, I'll never really know why.
I don't really know why it is that I feel so alone a lot of the time. I'm really grateful for the amazing friends I do have. There are some people that are worth their weight in gold as far as support are concerned. My mom, my bishop's wife, Emerald and Stephanie are those that I get the benefit of seeing and being supported by awesomely and unconditionally. Some people weave into and out of my life offering kindness and validation. But for the most part, I'm isolated by everyone else. Sometimes it's the circumstance of, "Oh, are you still sick?" or, "Are you feeling better?" I don't know how to answer those questions. When someone sees a brace and asks, "Did you have an accident?" it hurts because it reminds me of the times that people got mad at me because they couldn't see my illness.
I've been bullied, discriminated against, patronized and invalidated because of my illness (and because of many other things, too). I've had people roll their eyes after I had to bail yet again or didn't get back to them. I've been told I was a liar and lazy and that I was making it up. I've been ignored by docs and by others because I've had mental health history. I came out and said I had food problems and a problem with weight and voluntarily went into treatment for anorexia. You know what? I still got sick. I still suffered, mostly alone where no one could see it. And even though there have been times where I've been stubbornly independent and proud, I've honestly never turned down an offer for a blessing, or an opportunity to do something I'm capable and comfortable doing with a group of people who haven't been mean, neglectful or abusive to me.
A lot of people tell me, "Let me know what I can do for you," and then they disappear. Honestly, I don't know what you can do. If you're not a doctor, I can't get the physical help I need from you. But I wish people wouldn't just forget about me after they said that to me. I wish they would still try to do things for me even if I can't tell them what it is that I need. I don't really know what I need from my peers, from my friends. Sometimes I wonder if I even have friends like other people do. I know for sure that the friends I do have are the ones who try to do nice things for me without being asked every time. Very few people do that for me, really. Most people think I'm not very productive, I guess. They get really tired of how tough my life is, how I'm not feeling great emotionally about all of this, and how the problem isn't solved, I guess.
I don't really need solutions, I need friends. I need people that will be kind to me without me having to run around and run the relationship. I'm so tired. I'm so sick. I'm so weary. I'm so alone so much of the time. I feel like I have so many things to offer and I can't quite fit in with the rest of the world because I can't do what you can do, I'm not physically capable. At least not 100% of the time (my illness comes in flares, whatever my illness is). And so I get shunted to the side, because I'm not the fun one or popular. I don't get parties started, I'm not cool. I am happy, despite it all. Mostly, I'm someone to call when life gets real, because I've been dealing with it a lot longer than was really appropriate for me to be dealing with it. Longer than most of my peers. And most likely, in more ways than most of them still do.
I'm pretty good at holding down the fort, and that's fine. I just wish sometimes the burden could be shared a little more.
Love and Admiration,
Shareeta
You asked me what other types of yoga styles I had under my belt tonight. I really think you would benefit from studying Aruveda. Yogafit has an intensive they offer (this week in fact). If I didn't have a three year old, I would definitely be there. It is the study of life and what creates imbalances or dis ease in our lives. Very very fascinating and worth a look for sure to hopefully find some answers and much needed/deserved relief and healing. I even have an Aruveda for Dummies that I bought on Amazon. Keep moving forward. You have beautiful energy. Pleasure meeting you tonight and thanks for the yummy nuts! :-)
ReplyDeleteThanks so much for finding me! I've been wanting to do more intensive study of ayurveda for a while now, I'm definitely going to look into it!
DeleteLove and admiration ❤