Lupus is an annoying, unpredictable, potentially fatal illness. It has made my life......er.........
interesting. People often ask me what life is like with lupus. So, here goes my best description of what a "typical" day of mine is like..........
I have a well thought out schedule on my wall. I like to have my life in order. I have everything from checking my email to grocery shopping. (It's not as bad as it sounds LOL). Despite having this schedule, I still can't be sure of what I'll do from one day to the next. I don't know if I'll be able to get out of bed. And if I can, some days I'll need to use the strength to tend to a basic need such as using the bathroom or getting myself a bowl of cereal.
Most days, the first thing I do in the morning is jump out of bed leading to the fact that most days, the first thing I do in the morning is hurt myself. You see, in my mind I'm not sick. When I wake up, it doesn't occur to me that my joints are stiff and painful and that jumping out of the bed CAN and WILL hurt me. So I continue to hurt myself rather than lose my superwoman mindset.
As the day continues, I keep looking my to-do list to figure out what I can cross off, not because I've done it already, but because I realized that I
can't do it. I don't have the energy, my ankles hurt and I can't walk, my fingers hurt and I can't type, or a number of other reasons. But most lupus days, I have to shorten my to-do list by at least 1 or 2 items. But, that's okay. I'm just happy to have the energy to
write down a few things on a to-do list.
Throughout the day, as I get aches and pains, I wonder if this blasted illness is going to cause any damage to my vital organs. Then I remind myself to be positive. Then I go back to wondering if I'm taking good care of myself. Sometimes, very seldom, I wonder if lupus will claim my life.
Eventually though, the positivity wins, and I'm determined to have the best day of my life each day that I'm alive!
Lupus is an annoying, unpredictable, potentially fatal illness. It has made my life......er.........interesting. People often ask me what life is like with lupus. So, here goes my best description of what a "typical" day of mine is like..........
I have a well thought out schedule on my wall. I like to have my life in order. I have everything from checking my email to grocery shopping. (It's not as bad as it sounds LOL). Despite having this schedule, I still can't be sure of what I'll do from one day to the next. I don't know if I'll be able to get out of bed. And if I can, some days I'll need to use the strength to tend to a basic need such as using the bathroom or getting myself a bowl of cereal.
Most days, the first thing I do in the morning is jump out of bed leading to the fact that most days, the first thing I do in the morning is hurt myself. You see, in my mind I'm not sick. When I wake up, it doesn't occur to me that my joints are stiff and painful and that jumping out of the bed CAN and WILL hurt me. So I continue to hurt myself rather than lose my superwoman mindset.
As the day continues, I keep looking my to-do list to figure out what I can cross off, not because I've done it already, but because I realized that I can't do it. I don't have the energy, my ankles hurt and I can't walk, my fingers hurt and I can't type, or a number of other reasons. But most lupus days, I have to shorten my to-do list by at least 1 or 2 items. But, that's okay. I'm just happy to have the energy to write down a few things on a to-do list.
Throughout the day, as I get aches and pains, I wonder if this blasted illness is going to cause any damage to my vital organs. Then I remind myself to be positive. Then I go back to wondering if I'm taking good care of myself. Sometimes, very seldom, I wonder if lupus will claim my life.
Eventually though, the positivity wins, and I'm determined to have the best day of my life each day that I'm alive!