Going back to a post I made about invisibility, a blog I wrote about living with an invisible illness. https://icemaidendiaries.net/2015/05/15/invisibility/
I’ve been asked this question over and over and to be honest it is a hard one to sum up.
What’s it like to have lupus?
In reality, a day with lupus is never the same, with in minutes, an hour or a day you can feel totally different, but there is always a constant feeling of dread at what is happening to your body.
From 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 digestive system is in a constant state of confusion.
My skin itches and tingles and burns every day, all day long. Every day I have difficulty breathing. It is almost as if my lungs can’t fill to capacity, and breathing itself causes excruciating pain. My head pulsates and pounds, feeling as if it will explode. my mouth ears and nose are full of sores, making eating and drinking a task of torture. The simple act of wearing clothing is a painful endeavor worthy of any medieval torture device known to man. Every day is like an obstacle course laid out before you in the form of daily tasks. Only when you finish it, you are required to repeat it again and again until you go to sleep that night. But the air surrounding your body is made of sinking sand, making every movement you make harder than you could ever imagine.
Add to that, the painful sensation of all the nerve endings of my body are on fire. 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 with a fire so intense no amount of cold water or fresh air can put it out. My face burns so intensely that it feels as if acid has been poured on my skin. My face is on fire and it’s shown clearly by the butterfly affect glowing shades of red to black as the blood rushes to surface. There is no where to hide as people stare and make jokes about my forever glowing cheeks.
Every night when I lay my head down to sleep, it is as if I am adrift on a raft, uncertain of where I will be when I wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good I feel. There is a constant state of uneasiness, that I realise is now my constant companion. And then I awaken and do it all again–every single day until a cure is found.
I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the daily struggles are a constant reminder of just how vulnerable I am. I am never on solid ground, it is always shifting beneath me, and it takes all my energy to just stand on my own two feet.
There is no cure for lupus. If my bloods become good, it doesn’t mean I am cured…it just means the wolf is caged, for only a brief period of time, and she will be back.
At times I am convinced that somewhere in this world, is a replica doll of me being held in the hand as pins are stabbed into it, sadly my consultant disagrees and blames a broken heart which slowly but surely is shutting my body down.
For those of you that don’t know, Lupus is often refer to as “The Wolf” As with Red Riding Hood, you are never completely out of the woods and safe. 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?
In a sentence…my body has forgotten how to mechanically run on its own.