View Full Version : Lupus Fog is ruining my life
10-20-2009, 04:06 PM
I have always been quick witted, on the ball and the first to have something to say. These days I can't think of words, I can'r string thoughts and I have the love of my life treating me like a special ed child. Which makes me feel worse. I am really trying to focus, I am hyper sensitive to anyone talking down to me when i am having trouble with thoughts. It seems to be the worst when i am heavily stressed and or in flare. I keep a week at a glance calendar with everything I need to do in it, household, bills notes just things in general i need to remember but when it come to just having a conversation, Im really blowing it bad. What am I going to do? Is this going to get worse? stay the same? Is there anything else I can do to comprehend the obvious when someone is speaking to me?
10-20-2009, 04:12 PM
I've been about the same all week. I dont really know what to do about it either. Hope someone gives you some good advice and I hope you feel better.
10-20-2009, 04:51 PM
hi denise (and ritzbit), this is something that we all deal with, and no one has global answers. As you know, lupus is a very individual illness, and each of us has to find the best way for us to handle it, this includes the CNS problems. Everyone has to handle it in a way that is best for them. I am the safety director for several regional plants, and i hold plant-wide monthly safety meetings. I have been honest with the general managers at the plants, and they help me if i look to them for words, because sometimes the words just won't come to me. I have noticed that my brain fog is worse when i am in a flare. By recognizing this, i am able to incorporate my "coping tools" to help me get past the "air head" days. Sometimes i will be in a converstion with friends or family, and i just completely space out. I simply apologize, and usually end the conversation. I know they do not understand, and i know they get frustrated. I take the easy way out, and just get out of the conversation. Sometimes when i am speaking with aquaintances, and i realize that i have "drifted off", or if i can't speak the words, I just have to accept it and act accordingly. I have literally had to leave the bank, or get off the phone with the cable company, because my mind just won't work..................it is important to develop coping tools, but it is most important that you do NOT beat up on yourself. This just makes things worse, so remember to always be kind to yourself...........My boyfriend used to get very offended when i drifted off, now he has learned, and he jokingly and quietly calls me "back to earth". I know he gets frustrated when i can't carry on an intelligent conversation, but now that he knows it is because this beastly lupus is nibbling at my CNS, he is much more compassionate...........So, i have found that explaining these invisible results of lupus helps others understand, and they help me get through the situation without much embarrassment.........I truly wish i could give you a list of solutions, but this is one of the adjustments that we have to make, remember, our normal is no more, it changes and so do we.................
10-20-2009, 04:51 PM
hi denise i know how you feel i have found myself getting tongue tied lately having trouble getting words out i have certain people in my life who are treating me like i am an idiot since being diagnosed with lupus. this is very frustrating my husband has early onset dementia so i had to come up with away for both of us to remember things so i placed a cork board on the wall in our bedroom with all our appointments and things we need to get so i can remember i also use my voice recording on my cell phone and record things and play them back to myself everyday also if you have a journal on your computer put your daily schedule in. i hope this helps kim l
10-20-2009, 05:11 PM
I use to think I was loosing my mind early on (about 10 months ago) when I was out of pain and could focus and think. I too suffered and still do from brain fog. I was quick witted and always had a smart a** comment...it went away and those who knew me questioned and would wait for me to say something...I had nothing...which was sad cause I considered my wit part of my charm. Glad to say...it is coming back, memory, wit, sense of humor. Some days...no I don't remember things and post it notes come into play...all over the car...simple things like pick up dry cleaning, pick of medicine (Of all things) But I think it comes and goes and I believe your wit/charm will come back but sometimes/days you won't be as sharp or quick. I actually use it as a great excuse...SORRY DON'T REMEMBER...or are you kidding...you want me to remember something from last week and I don't remember what I wore yesterday or even ate...BE SERIOUS!
10-21-2009, 05:00 AM
My problems sound alot like Phyllis's, I had to hang up the phone with the doc. office, because I couldn't remember my d.o.b. or my phone #. I would just hang up, get out my drivers license and look up my info, call back saying we were disconnected. When it happens at work, I usually say, " I can't think because my blood sugar is low". Some days are really, really bad, some are better. Mine too, depend on the flare. My husband helps me to finish my sentences and I don't mind, but with other people I just try to get out of the conversation.
So you can see, most of us are dealing with this problem, you will learn your own way to deal with it. Try not to get frustrated, it makes it worse.
10-21-2009, 01:03 PM
Thank you everyone for sharing your stories and idea's. I am going to just try to buck up and not be so sensitive about it.
10-21-2009, 05:37 PM
awe, denise, i am so sorry that you are having to learn such a difficult lesson. It is so sad when we have to build up a protection wall to keep things from hurting our feelings.
I understand what you are going through. I was one of those "bright" kids in high school. I got various degrees and such a bit sooner than most. I was always being called a "walking encyclopedia" and things like that. I had alot of high expectations put on me by alot of people. My life, and cognitive skills were rolling along nicely when suddenly around early 2004, my employees and friends started noticing that I could not remember things. Simple things like basic words, people's names, I was getting lost in my own building, stuff like that.
The simple stuff went, and the more complex info, like the engineering knowledge I needed in order to do my job, was hopelessly lost. I was diagnosed with SLE in late '04. I have cognitive dysfunction (brain fog) most of the time. The funny thing is, the information is still up there, but my problem is with gaining access to it. On the rare day where I have a clear head, it's almost like I am OK. My vocabulary opens back up, my imagination flows again like it used to, and I feel sharp again.
On those days, I do as much as possible. I am on full disability, and no longer work, but I go do my errands, visit my family, write to people, and they all see that side of me and think I'm somehow all better. I see the look on their faces, and hear it in their words when the next time they are around me and I am a dull, blank slate once again. Nobody talks down to me or anything like that, they just have a look of pity that I hate. I've heard the conversations, the "he could have been so...whatever" I've learned to ignore it the best I can. I live alone, so I only go around others on my good days, unless its a medical appointment or errand.
I guess, you just learn to roll with it. Make the most of the good days, and get through the bad ones any way you can. I leave myself notes, make really simple routines that I can stick to so I don't forget to do things like turn off the oven, or close the garage door. The good news is that the fog is not permanent, and most people do not seem to actually lose the knowledge they have, you just have times where you can't get to it. Hang in there, you can cope with this. It's not easy, but if I can do it, so can you.
P.S. Welcome to our group!
10-21-2009, 10:43 PM
hi denise sorry the way people treating you robs right try to ignore them people can be so ignorant to other peoples feelings there not worth worrying about let them walk in your shoes for a day then i think there attitude would be different i have experienced this alot over the last few months from family and medical professionals as well as strangers i know it can be frustrating and sometimes you just want to tell them to shut up. so try to be calm many hugs kim l