What Does It Feel Like To Have Lupus?
by Lupus and Me
What does it feel like to have lupus/chronic illness? I get this question quite often, and I am sure you all do too. So here goes:
In reality, lupus has a different feeling every day.Sometimes it is joint pain and stiffness. Some days I am confused by simple tasks. Other times I can feel the heavy, pulsating beat of my heart, causing me to be dizzy, exhausted, and worried. My stomach is always upset. My digestive system is in a constant state of confusion. My skin itches and tingles and burns every day, all day long. My head pulsates and pounds, feeling as if it will explode. my mouth and nose are full of sores, making eating and drinking a task of torture. Sometimes I awake in streaks of blood from scratching in my sleep. And on really bad days, I feel all of these things at the same time.
Occasionally, I have difficulty breathing. It is almost as if my lungs can’t fill to capacity, and breathing itself causes excruciating pain. In my head, I ask…”Is it my heart? Do I have a clot?” Those are often very long nights. I ride it out untilit passes.
In a sentence…my body has forgotten how to mechanically run on its own. Each individual part is running independently of the others, in a type of mutiny. As the patient, I try to do my part by learning to adjust and following my doctor’s advice, although I have to say, a healthy amount of denial of my fate has helped me live my life to the fullest.
Along with the tangible comes the intangible, the parts of this disease that cannot be measured in a blood test, yet are very much a part of our lives. I am talking about the fatigue. It is debilitating. Do you remember the required obstacle course you were forced to navigate in gym class? Now imagine every day with an obstacle course laid out before you in the form of daily tasks. Only this time, when you finish it, you are required to repeat it again and again until you go to sleep that night. Or, imagine that the air surrounding your body is made of peanut butter--imagine the energy it would take to just walk--that is the type of fatigue I am talking about.
It is when every nerve ending in your body is pulsating with electrical charges, because it has worked overtime all day. And as ironic as it sounds, for some reason when it is time to retire for the night, your brain has disconnected the messages to your body that says it is time to sleep.
I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the sorrow of the abandoned child lives on the surface, at the back of my throat, as a constant reminder of just how vulnerable I am. My world is different from everyone else’s. I am never on solid ground; it is always shifting beneath my feet.There is no cure for lupus. If the numbers become good, it doesn’t mean I am cured or had a misdiagnosis…it just means the wolf is caged, for only a brief period of time, and she will be back.
Flaring
One of the worst symptoms I have had with lupus is a painful sensation in all the nerve endings of my body. It starts at my feet and slowly works its way systemically up, until every part of me, from my toes to the top of my scalp feels as if it is being stuck with needles, and battery acid is running through my bone marrow, bubbling to the surface of my skin in a cold fire. Sometimes I am convinced that somewhere in this vast world, is a replica doll of me being held in the hand of some unfortunate soul I have wronged. My body calls out in the darkness of night for me to listen. The simple act of wearing clothing is a painful endeavor worthy of any medieval torture device known to man. Kissing is out of the question, and hugging is merely a lost memory.
Lupus patients often refer to this disease as “The Wolf” because of its name. But it is also a perfect visual of the characteristics that this disease holds. As with Red Riding Hood, you are neve rcompletely out of the woods and safe. Everyday issues that most people have to address become magnified for us. With every slurred word…with every twinge of pain…with every rapid or slowed heart rate or indigestion, we wonder…is that the wolf lurking and licking at my heels? With the complexities of a disease that lives in all areas of my body, it is helpful for me to give it a face. But along with that face is also a sound, the sound of a Jack-in-the-Box: that constant, slow turning of the handle and that awful tune playing in your head. Even when you are receiving treatment and you start to feel better, your brain never lets go of the thought that the Jack-in-the-Box handle is still slowly turning, and eventually the wolf, dressed like a clown, will pop up again.
Every night when we lay our heads down to sleep, it is as if we are put adrift on a raft, uncertain of where we will be when we wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good we feel. There is a constant state of uneasiness, that you realize is now your constant companion. And then we awaken and do it all again--every single day-- until a cure is found.
~Jenn
In reality, lupus has a different feeling every day.Sometimes it is joint pain and stiffness. Some days I am confused by simple tasks. Other times I can feel the heavy, pulsating beat of my heart, causing me to be dizzy, exhausted, and worried. My stomach is always upset. My digestive system is in a constant state of confusion. My skin itches and tingles and burns every day, all day long. My head pulsates and pounds, feeling as if it will explode. my mouth and nose are full of sores, making eating and drinking a task of torture. Sometimes I awake in streaks of blood from scratching in my sleep. And on really bad days, I feel all of these things at the same time.
Occasionally, I have difficulty breathing. It is almost as if my lungs can’t fill to capacity, and breathing itself causes excruciating pain. In my head, I ask…”Is it my heart? Do I have a clot?” Those are often very long nights. I ride it out untilit passes.
In a sentence…my body has forgotten how to mechanically run on its own. Each individual part is running independently of the others, in a type of mutiny. As the patient, I try to do my part by learning to adjust and following my doctor’s advice, although I have to say, a healthy amount of denial of my fate has helped me live my life to the fullest.
Along with the tangible comes the intangible, the parts of this disease that cannot be measured in a blood test, yet are very much a part of our lives. I am talking about the fatigue. It is debilitating. Do you remember the required obstacle course you were forced to navigate in gym class? Now imagine every day with an obstacle course laid out before you in the form of daily tasks. Only this time, when you finish it, you are required to repeat it again and again until you go to sleep that night. Or, imagine that the air surrounding your body is made of peanut butter--imagine the energy it would take to just walk--that is the type of fatigue I am talking about.
It is when every nerve ending in your body is pulsating with electrical charges, because it has worked overtime all day. And as ironic as it sounds, for some reason when it is time to retire for the night, your brain has disconnected the messages to your body that says it is time to sleep.
I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the sorrow of the abandoned child lives on the surface, at the back of my throat, as a constant reminder of just how vulnerable I am. My world is different from everyone else’s. I am never on solid ground; it is always shifting beneath my feet.There is no cure for lupus. If the numbers become good, it doesn’t mean I am cured or had a misdiagnosis…it just means the wolf is caged, for only a brief period of time, and she will be back.
Flaring
One of the worst symptoms I have had with lupus is a painful sensation in all the nerve endings of my body. It starts at my feet and slowly works its way systemically up, until every part of me, from my toes to the top of my scalp feels as if it is being stuck with needles, and battery acid is running through my bone marrow, bubbling to the surface of my skin in a cold fire. Sometimes I am convinced that somewhere in this vast world, is a replica doll of me being held in the hand of some unfortunate soul I have wronged. My body calls out in the darkness of night for me to listen. The simple act of wearing clothing is a painful endeavor worthy of any medieval torture device known to man. Kissing is out of the question, and hugging is merely a lost memory.
Lupus patients often refer to this disease as “The Wolf” because of its name. But it is also a perfect visual of the characteristics that this disease holds. As with Red Riding Hood, you are neve rcompletely out of the woods and safe. Everyday issues that most people have to address become magnified for us. With every slurred word…with every twinge of pain…with every rapid or slowed heart rate or indigestion, we wonder…is that the wolf lurking and licking at my heels? With the complexities of a disease that lives in all areas of my body, it is helpful for me to give it a face. But along with that face is also a sound, the sound of a Jack-in-the-Box: that constant, slow turning of the handle and that awful tune playing in your head. Even when you are receiving treatment and you start to feel better, your brain never lets go of the thought that the Jack-in-the-Box handle is still slowly turning, and eventually the wolf, dressed like a clown, will pop up again.
Every night when we lay our heads down to sleep, it is as if we are put adrift on a raft, uncertain of where we will be when we wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good we feel. There is a constant state of uneasiness, that you realize is now your constant companion. And then we awaken and do it all again--every single day-- until a cure is found.
~Jenn
