I experience times of memory dazes. I can be driving along and pass my exit or snap out of whatever it is and not have a clue where I am. Does anyone do that and if you do, do you know why or what it is? I now take Provigil which keeps me pretty much alert. I am also misplacing things all the time and can not remember where. It is so frustrating.
I tend to find my memory is shocking really and have to rely on lists and notes constantly. I am seeing my rheummie on Tue this week (a 6 monthly appointment that I try to remember everything for) and I have to write a bullet pointed list of things. Here in the UK actually getting appointments/time with doctors is the main problem, although thankfully the costs that you seem to have related to health insurance etc are not an issue (thankfully).
Yes for me I have found my short term memory to be a little shaky. I used to remember everything,I never second guessed my memory! But I myself have to write lists all the time too, especially for the store. I sometimes think it is a combo of all the stresses of life and chronic pain that gets to us both physically & mentally and I think that causes the memory issues. Hey, writing to do lists isn’t that bad, hey at least we remember our names, right? LOL…Be well, Suzie ;0)
KazP said:
I tend to find my memory is shocking really and have to rely on lists and notes constantly. I am seeing my rheummie on Tue this week (a 6 monthly appointment that I try to remember everything for) and I have to write a bullet pointed list of things. Here in the UK actually getting appointments/time with doctors is the main problem, although thankfully the costs that you seem to have related to health insurance etc are not an issue (thankfully).
I have noticed that I have become very forgetful lately. I just chalked it up to getting older & too much partying when I was younger…never thought it might be due to the Lupus…
Oh my goodness Kim,
Thank you for posting this. I swear I am going crazy. I have officially had lupus since jan of 2007 but I would say have probably had it for 20 years. Anyways back to the memory issues, the last few weeks, I feel like I am losing my mind. I am not remembering things and it is so frustrating. It especially is at work, funny thing is that I work with a bunch of nurses and my boss is the most un-understanding person about it. Actually she is kinda an evil jerk about it. I do write things down...my boss just seems to enjoy seeing me struggle to remember something. The real reason for my post is that how do you know if the memory issues is lupus, lupus affecting your brain, anxiety or depression??? I do know that I need to find a different job because the amount of anxiety is seriously making me sick..but when do you start wondering if the lupus is attaching your brain???? does that make sense???
Thanks,
Julie
I believe Kim,
it not only is from the "lupus fog" that many call it but also the stress that the disease and dealing with the daily, life altering effects, it has on our bodies & mind that causes the problems you are expressing and experiencing....It is almost as if it is a vicious cycle, and it seems to alter our thought and concentration....We are really "warriors" if you think long and hard about the trials and tribulation that we face everyday. We here, like so many other people who suffer from many other illnesses are "true survivors", we may not be given a "morbid" prognosis, and at times are looked at as if it isn't "that" seroius or bad?! Even though we feel like a humongous elephant is sitting upon our chest with all of the heavy burdens we face. But, we do encounter miserable problems all the time and it seems as if one day to the next something "different" pops up, another symptom, another fear ,another reason we need to focus on "adapting" to the life we have now, so different from the life we all once new.... So long story short, you are not alone, I am sure many here totally agree with me on this discussion and your question. Hope you feel a tad bit better now...Hang In There My Friend! Stay Strong! {{HUGS}} Suzie :0)
And Julie,
It does sound as if finding a job where you are understood & not judged will probably help you feel more at ease along with not forgetting things so much. From what your story says, is that dealing with the non sympathetic and cruel people you work with could all by itself cause major memory and focus issues. Even to those whom aren't suffering everyday from an illness that we cannot control at all!!! we "look" OK< so they all think how could we feel 'so sick & bad".... Being in a "bad" place and situation itself can cause that let alone having Lupus on top of it all!
Your boss sounds like a real winner in my eyes, try to find a way to escape from that, Negative people=negative frame of mind for you, it is not good for you and not a healthy environment for you to work in, that is for sure! Stay Strong! {{HUGS}} Suz :0) P.S. Ever wonder if it was them or someone they loved, how different they would look at things? Makes ya wonder if it is possible to be so cold hearted, unfortunatley, I think it is, but just don't associate with them, that is your best bet, and my words of advise to you! ;)
Confusion can be a side affect of your drugs you are taking, but it can also be the Lupus. Talk to your doctor. I have been reading everything I can find on SLE and you need to monitor your body closely so bad things can get cough early and treated. I wish you well!!!
yes–thank you for bringing this up. i thought i was going crazy; it is still a problem, only now it has a new twist: i get my words mixed up. if i am trying to say, "dog? for example i might say frog or some other similar sounding word and feel stunned because i know it is not right but cant find the right word.
Hey guys,
Hmm the memory loss, Ive been there and Im still there! As sad as it sounds I woke up about 8 months ago and couldnt remember how to tie my shoelaces. Anyway, myself and my partner normally speak a few times throughout our day, however I got so freaked out that I didnt turn up to work and instead went to the doc's I couldnt get in to see my regualar GP and had to see a normal doctor. He told me that once I start forgetting stuff its all over and that he had a Lupus patient in the hospital who wouldnt see the month out he then proceeded to say you know its terminal like Ive been living under a rock the last few years! So of course I was extreemly distraught, I left there in tears and drove around for what felt like ages before stopping under a tree somewhere and crying some more. My man kept calling and calling but I was so upset I couldnt answer (which is not like me.) I answered crying hysterically but I couldnt tell him what was wrong and when I finally did he was so understanding, loving and supportive except I couldnt tell him where I was. He eventually found me and we sat there and talked for ages. The next day he went out and brought me a beautiful pair of dress shoes with an elastic strap and a pair of elestic sneakers and now we practise tying my shoe laces regualary. I havent had an episode like that in a while and my normal GP said that guy should be shot. I do have frquent days where Ill forget why I walked in a room or misplace things but Im working on it everyday. I hope this didnt freak anyone out but I can honestly say that memory activities and practising things has really helped! x
Oh I am all the time mixing my words up. Instead of telling my special needs 3 & 4 year olds to walk in the hall; I have told them to walk in the wall. LOL! I am always saying things backwards. I am slow at getting jokes. My husband will tell our friends to hold on, in about a minute Kim will get the joke and he is right. I also cannot always remember my 5 digit ID number. Some days I do then other days I could not tell you what it is. The lunch lady just enters my ID in the computer for me. I feel crazy, but I just laugh it off.
Moonshadow said:
yes--thank you for bringing this up. i thought i was going crazy; it is still a problem, only now it has a new twist: i get my words mixed up. if i am trying to say, "dog? for example i might say frog or some other similar sounding word and feel stunned because i know it is not right but cant find the right word.
Nae, I can identify with you. I tape post-it notes on door knobs, my car steering wheel, and different places around the house. My i-phone has been wonderful. I placed events and important things that i need to remember on my calendar and then set it to alert me. I also walk into rooms and forget what I am going in there for. I also am famous for putting things in safe places and then I forget where that safe place is. My husband gets so frustrated with me when I do that, but I also get frustrated with myself.
nae said:
Hey guys,
Hmm the memory loss, Ive been there and Im still there! As sad as it sounds I woke up about 8 months ago and couldnt remember how to tie my shoelaces. Anyway, myself and my partner normally speak a few times throughout our day, however I got so freaked out that I didnt turn up to work and instead went to the doc's I couldnt get in to see my regualar GP and had to see a normal doctor. He told me that once I start forgetting stuff its all over and that he had a Lupus patient in the hospital who wouldnt see the month out he then proceeded to say you know its terminal like Ive been living under a rock the last few years! So of course I was extreemly distraught, I left there in tears and drove around for what felt like ages before stopping under a tree somewhere and crying some more. My man kept calling and calling but I was so upset I couldnt answer (which is not like me.) I answered crying hysterically but I couldnt tell him what was wrong and when I finally did he was so understanding, loving and supportive except I couldnt tell him where I was. He eventually found me and we sat there and talked for ages. The next day he went out and brought me a beautiful pair of dress shoes with an elastic strap and a pair of elestic sneakers and now we practise tying my shoe laces regualary. I havent had an episode like that in a while and my normal GP said that guy should be shot. I do have frquent days where Ill forget why I walked in a room or misplace things but Im working on it everyday. I hope this didnt freak anyone out but I can honestly say that memory activities and practising things has really helped! x
Kim by boyfriends exctly the same! As understnding as he is me putting things in a “safe” place does not help! hehe
Yes! All the time. I don't know if it is lupus or perimenopause.. I think both. In December 2009, I was hospitalized due to the fact I couldn't get a sentence out because I couldn't get the right word out. I knew what I wanted to say but it was just out of reach. At the time I didn't know I had lupus but now I do so I would imagine it had to do with that. It is very frustrating!
wow i am so glad i am not alone with this…
Mel1964 said:
Yes! All the time. I don’t know if it is lupus or perimenopause… I think both. In December 2009, I was hospitalized due to the fact I couldn’t get a sentence out because I couldn’t get the right word out. I knew what I wanted to say but it was just out of reach. At the time I didn’t know I had lupus but now I do so I would imagine it had to do with that. It is very frustrating!
Okay, this seems to be a common problem. I too suffer from what I like to call, “fog brain”. Sometimes I am okay and other times I am terrible and can’t even remember what I ate for breakfast. It has definitely gotten very bad. It seems almost as if I go through flares with my memory as well. I make lists, keep a calender with all important details and appts and depend on my family to help with things I may have forgotten, (such as what I was planning for dinner.) My boyfriend noticed it long before I did and brought it to my attention that my short term memory loss was quite abnormal at times. It really took me some time to accept it and learn to live and laugh at it. 
now…what were we talking about? lol:)
Andrea Chandanais said:
Okay, this seems to be a common problem. I too suffer from what I like to call, "fog brain". Sometimes I am okay and other times I am terrible and can't even remember what I ate for breakfast. It has definitely gotten very bad. It seems almost as if I go through flares with my memory as well. I make lists, keep a calender with all important details and appts and depend on my family to help with things I may have forgotten, (such as what I was planning for dinner.) My boyfriend noticed it long before I did and brought it to my attention that my short term memory loss was quite abnormal at times. It really took me some time to accept it and learn to live and laugh at it. :)
I really understand! Someone can ask me what I did over the weekend on Monday morning and sometimes I can remember and other times I stand there racking my brain to remember what I did. I hate when I can't remember things. It makes me feel so inadequate not to mention a little crazy.
Kim
janice said:
now..what were we talking about? lol:)
Andrea Chandanais said:
Okay, this seems to be a common problem. I too suffer from what I like to call, "fog brain". Sometimes I am okay and other times I am terrible and can't even remember what I ate for breakfast. It has definitely gotten very bad. It seems almost as if I go through flares with my memory as well. I make lists, keep a calender with all important details and appts and depend on my family to help with things I may have forgotten, (such as what I was planning for dinner.) My boyfriend noticed it long before I did and brought it to my attention that my short term memory loss was quite abnormal at times. It really took me some time to accept it and learn to live and laugh at it. :)
I totally agree with you. My memory is shot. I have the same problem. When my husband starts to give me a list of things we need to do such as paying certain bills, or when its time to go grocery shopping, I will forget. If I don’t go into the store with a list, I am bound to forget something. I don’t know if anyone here has this problem but I sometimes have a hard to comprehending certain things. They say its called “brain fog” or something like that. Does anyone else have that same problem? I find myself having a hard time expressing myself like I want to or getting the right words out.