Hello everyone, I'm newly discovering how lupus effects every part of my life, and was hoping you had some advice for me. I have the worst memory over things that are everyday, normal things, including when I meet people. So I talked to a parent (my son was going to their house after school for the first time), and she said "oh, I know who you are, we've meet before, haha". But I don't remember meeting her. Now, I don't have a problem asking her name again, that's not the issue...it's when I forget something so obvious and I have to explain it in some way so they stop looking at me like I'm crazy ! And I can't just say, "oh I have lupus", nobody knows what that means, unfortunately. Do you guys have a phrase that you use, or a certain way to explain quickly that my memory sucks??
In the famous words of Dori, "Just keep swimming"
I've been there- wait, I'm THERE A LOT!!! I simply respond words to the effect of "please excuse the lupus fog, some days it's worse than others and this is a particularly foggy day" People usually let it go at that or they'll inquire about lupus and that gives me an excellent opportunity to educate.
"I'm going to get healthy or die trying"
Oh man - I hate the brain fog. Stuff goes in one ear and out the other...makes me feel like a ditz, even though I know I'm not.
I make lists and write stuff down, then forget to check the lists, LOL...
On the bright side, I can re-watch movies and re-read good books because 6 months after I saw/read them, I don't remember them anyway.... :-P
Yeah, I guess I don't really have an answer for you. I shrug stuff off and I apologize a lot. If I have really offended somebody or if it happens several times with the same person, I do tell them I have an autoimmune/blood disorder that means my body attacks it's own organs at times, and sometimes it's my brain, which causes me to have problems with short-term memory - so don't feel bad about reminding me of stuff. (I also make sure they know it's not contagious). Sometimes it freaks people out a little - if they ask questions, I am happy to answer them....if they just get weird, I figure it's their problem....they can always go home and Google "Lupus" if they're really curious.
hi tana, and welcome.
we all get brain fog.
there is a long thread about some of the funnier sides of brain fog.
it is entitled "you know you have brain fog when ..."
read some of it, you may be amused.
Yes, we all have brain fog. I'm like the others - I'm pretty upfront about it, and I use it as a teaching moment. Of course, I'm obviously disabled, since I have a difficult time getting around and use a cane and a service dog. I just explain it all at once to those who are curious.
Hi and good morning,
I don't use the "L" word basically because I seldom talk about being sick (not a good thing at times). I usually say something like "I am sorry. I have an issue with short term memory loss. Please don't take it personally". It works for me.
Success is not final, failure is not fatal: it is the courage to continue that counts.
My father has always said, "I've got a good memory, it's just short", it always gets a laugh and no one generally inquires further. I've picked up this habit because I find that when I feel apologetic about being forgetful or clumsy etc ... I lose more focus plus I get caught up in a mental dialog about my illness. For me this shift in focus consistently makes my memory issues worse. When I chat with people I like to call it Sometimers syndrome too, and if people really are interested, I am happy to explain, if I feel it is appropriate. But no one is owed an explanation, we all process information differently. Occasionally, by making fun of the brain fog it gives me a chance to be light hearted about it too.. because there is no doubt that it is really challenging to feel intelligence locked away from reach. Gratefully the information usually comes back when I don't actually need it, but at least I know my grey matter is Still ALive!
I keep a tiny journal in my purse with just the names of people who work in places I frequent, a few of their details and I find it truly helps me along. No one has ever taken offense to me writing notes when they talk.. they seem to enjoy being focused on. I found (I'm an audio book hound) "how to make friends and influence people", had a lot of good tips on remembering names like the notepad.
I read quite a bit on hacking your brain. Half of it I don't understand, but some gets through and helps. SleepynSeattle has it all right! I love that I can see a movie 4 times before I start recognizing scenes from it. Now if I could just be that forgetful/forgiving in relationships
We are here for you. The gentler and kinder you are with yourself, the easier it is on your processing center- your brain.
I have bad brainfog at times. I usually just joke about it.
I tell people I had a late night out last night, or that I suffer from CRSS (Can't Remember S**t Syndrome).
Laughing helps me to break through the feelings of embarassment and frustration, and can sometimes help the conversation move forward.
I usually don't mention Lupus or brainfog to anyone.
Last edited by rob; 02-10-2012 at 03:13 PM.
I only mention Lupus to friends or co-workers, when I have bad brain fog.
Sometimes I am fogging, when I am with a customer, I will reverse the numbers from the total bill, like the bill is 58.93 , I will say 98.35, see it has all the numbers, but in the wrong order. The bad thing is, I will say the wrong number several times, and the customer looks at me, like I am an alien. After saying it wrong so many times, I will say," oh my, I am a little dislexic today."
The brain fog for me is the most uncomfortable symptom, because I can't hide it, I can hide the pain most of the time.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).
Your going to hear this same story from everyone of us, I have horrible short term memory. I actually don't tell people I have lupus, first off they wont know what it is and I dont feel like explaining and second because its still kind of personal. I always laugh it off when im around people and forget something it's easier to laugh about it then be uncomfortable with it. I can never remember peoples names, I just tell people I won't remember so don't expect me too.