I was telling someone the other day (maybe here I dont remember lol). Anyway I try to make a joke about the lupus fog with my daughter and I can see she gets very uncomfortable. I don't want to just let the foggy moments go without a comment or joke because then people will think I believe I just made sense! (Does that make sense?) I'm very aware I don't make sense and can't believe I made my living talking and thinking! Oh I do miss my brain above everything else.
I have this problem and it's very frustrating. I start to say something and by the time I open my mouth I've lost the thought. If I don't write everything down I don't remember. I finally remembered to keep all my notes in one place, I used to write things down then lose my notes. I keep hoping it will get better. It has become a standing joke with my family. I honestly don't think I could function on a job anymore.
Sounds like me in a bad flare up. I also have trouble expressing thoughts & saying the wrong words. My 22 y.o son looks @ me like I'm nuts. He says it's old age but I know it's Lupus fog, cognitive deficits or whatever. Happily, it does pass. I always carry a pad & pen to write down everything I want to remember. My memory isn't as good as it use to be. I also worry I won't be able to return to my job as an NICU RN. I may need to work in a less demanding unit or maybe another career, Immune suppression makes me more susceptible to infection. A hospital may not be the best place for me to be. Time will tell. Now my main focus is getting the Lupus in remission for longer than a mo @ a time.
This reply sparks a fire in me! I get told, all the time, when I am in a Flare, that "Oh, I get so tired too." or, I know just what you mean, I forget things all the time, too." NO, YOU DON'T KNOW WHAT IT'S LIKE!!! I could just scream at people who think they know what I am going thru, because they have something like a distant cousin of symptoms happening. They don't have a clue!
I'm right there with you RJQ! lol. People have no idea just how much pain and fatigue is possible without having a terminal diagnosis.
RJQ said:
This reply sparks a fire in me! I get told, all the time, when I am in a Flare, that "Oh, I get so tired too." or, I know just what you mean, I forget things all the time, too." NO, YOU DON'T KNOW WHAT IT'S LIKE!!! I could just scream at people who think they know what I am going thru, because they have something like a distant cousin of symptoms happening. They don't have a clue!