bad memory

since having lupus my memory isnt good,as we all know its down to our fatigue. i do have depression aswell and have been told that causes forgetfullness too. i do make lists of trivial everyday jobs and notes if someone has asked me to do something for them etc.

our kitchen calender is organised so birthdays "jump out" at me as theyre brightly coloured and i write things down like when the ginea pigs were cleaned out as i even forget that!!and bin and recycle days! lol

it just getting beyond stupid now, i can sit and watch a fave soap of mine and then cant recall a thing later,or write a small shopping list pop in the shop and take a look and then still forget something that was on a list of 4 items!!

i know this may sound trivial but its driving me mad,i cant remember words, peoples names and say things backwards..........and my specialist just laughed and said "its lupus" ok for her to laugh when im looking like a right muppet!

does anyone have any tips/advice on improving my memory please?

26 Replies

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  • I suffer in a similar way. The only things I have found that help are.....forcing myself to think or speak about one thing at a time-not easy with kids in house but it definitely makes me a bit more focussed. Also playing games that make me concentrate-fairly mindless apps on the tablet but they seem to help. I find that I get anxious about forgetting things and that makes me flustered and forget even or retraining myself to focus in andifferent way helps. I'd love to say that these are miraculous cures....for me they havent geen but may have made the difference between staying the right side of sanity and losing it completely......hope that helps even a little

  • I know just how you feel. My memory is getting worse. I am finding it frightening especially as my Husband points out things to me and I cannot remember him saying or me saying them either. He is becomes angry with me which stresses me and makes it worse. I tell him that I wish he could show more patience but he is not good with 'illness' and just doesn't show any compassion. I just would like to feel normal again. I wish there was an answer. I'm so fedup taking tablets ( and sometimes do stop for a few days stuid i know) and going to the Rhemy and being told your lupus is under control because your bloods are good and see you in 6 mths time! I have fibromyalgia too now ( about 2 years) so don't know if I'mcoming or going some days. Sorry for the winge having a bad day.

  • I too feel your anguish with the loss of memory, I write shopping items on my hands as I only leave lists behind. Its embarrassing in shops. I call my fog days the "running man" as for 2 or 3 days I feel like I have a little man running so fast in my head that it hurts, people around me talking and all I can hear is mumble mumble mumble. Then from about 3 day it feels like my running man is running out of steam and starts to slow down, and gradually things start flooding back to me and some type of normality occurs once again. I get scared going out when its at its worse as I'm scared that I might do something that I have forgotten. Can be very scary and my rheumy has suggested I go on anti-depressants as I suffer with depression too but I don't like taking anti-depressants as I worked so many years with addicts as my job and witnessed their journey of detoxing.....But I stay positive and try to understand life as I knew it would change....:)

  • 'Post It' notes everywhere, & singing 2 myself 2 remind me of what I'm doing. Ok, fair enough, people think I'm a bit odd when I walk past them bambling away 2 myself but hey, I don't really care any more :0)

  • Thank goodness! I talk to myself and give myself instructions out loud to help me keep on track when I have things to do. So glad I am not the only one!

  • I agree, it is frightening. I was speaking on the phone today with someone from a pen repair shop and in describing what was wrong with the pen, I could not remember the word 'ink', the guy had to say it in the end. And I have the same thing with my husband telling me things and my not remembering. I'm not depressed, so that cannot be it. I hate it. It worries me that my brain deteriorates, I've only had symptoms for about 3 years.

  • Sorry, I meant to also say that I make lists upon lists, I have a pad in almost all rooms, then at the beginning of each day I check them all again. I tend to forget if I've taken my pills, or if I have taken the correct ones and in the correct dosage, so I write in the diary each time I take them, to be sure. Dreadful.

    I am with you in relation to your doctor, I love it (not) when they blame everything on lupus and send us packing as if it is nothing. Grrrrrrr.

  • Hi me again. I started with the post it's recently. One is on my fridge door to make sure I've shut it properly :-( . I left the freezer door open the other day, lucky my husband found it ,could have been expensive. So you can imagine how that went down. I definitely am going to use more notes to self and keep a diary ( if I can remember too and have the energy to do it !!! )The menopause has made my memory worse too. I used to be so organised but not anymore.

  • My memory is worse than it was but my problem is with words. They will be in the right order in my head but won't be when I speak. I also forget the words for things which is quite embarrassing. My daughter laughs and just says "You tired Mum"? My best yet is in the middle of a conversation with her I randomly came out with 'coathanger'.... nothing at all even close to what we were talking about :)

  • I try to keep a sense of fun about my speech madness..... not knowing what will come out next can be quite exciting sometimes.

  • Know the feeling well, my kids have learnt LOADS of new words by me just saying something randomly in the middle of a conversation that has sod all 2 do with anything lol

  • hahaha @ sher ... tee hee .. my kids are the same :) ... even my 4 yr old finishes off sentences for me :(

  • I find when i'm talking, I forget a word eg like "table" eventhough i'm looking right at it! My 8yr old often has to guess the missing bits until he says the right word. It's harder when I am out at an appointment or shopping and need to speak to someone. I has become more noticable now and i'm really worried. It's not just tiredness, forgetfulness, old age etc!

  • Hi me again ! The not remembering a word is frustrating and very embarrassing at times. At work my collegues know me and except my thingy do dah wotsit sayings. They help make light of it but it's not that easy at home. I've tried to get my husband to read bits on lupus and fibro fog but it doesnt make any difference.

  • Hi I have mild Lupus along with Hughes syndrome since I have been on anticoagulants to thin my blood my Fog memory has got a lot better, although not perfect maybe worth taking a look on the Hughes web site on here karen xx

  • Post its are good, I use to use them around the kitchen, leaving one on one door to read next post it and so on until left house but just ended up forgetting most of what I went out for to begin with. Have suffered with the "forgot what word I was going to use" for a number of years, infact I have suffered with memory loss for about 5 years now always put it down to not being a good sleeper or not using my brain as I used to when studying for degree and working. I have been to my gp many times over these years about my memory problems to no avail, as with a number of other symptoms that all make sense now.....I do believe yoga and other body and mind techniques are suppost to of great value but have yet to try them out. Anyone tried them and were they any good? Never tried them before as the effects of my lupus on my joints/muscles prior to going onto meds was far too painful to even move but if they can help I'm more that happy to give them a go....x

  • Oh I too struggle with this. It drives me and my family mad! My memory is improving but when I am tired I forget words or I come out with something random, like I said to.ny husband when cheese is in the bottom drawer when I meant batteries or can u.put the plates in the washing machine instead of dishwasher. I alsoforget the end of sentences, my son laughs and knows I am tired and my mum finishes the sentence for me. Lupus sucks!!!!!!

  • I am exhibiting the same problem of losing words mid sentence,it can be a bit tricky covering it up, but I also zone out when having a conversations with people. I tend to zone back in, but have then missed words, making the conversation hard to follow.

    I was diagnosed with SLE 2 years ago, though my meds initially kicked in and made me feel better, they are not as effective now. I am hoping things will improve in the future.

  • oh i do this all the time .... people who know me are use to it .. so just wait for me to phase back into the conversation ... other people get really annoyed with me, although they don't say anything u can see it in their faces..... I also get really easily distracted !

  • It is not trivial, I am the same. Everything is on the calendar or I forget. My boss laughs at me because I have a written list of what I needed to discuss with him. I do feel down about this sometimes as I don't remember conversations and then look stupid. Or I will completely forget the word I was about to say and people look at you as if you are stupid. Really makes me unhappy.

  • thankyou so much everyone, im buying some post its tomorrow when we do our weekly shop (on list already!) lol

    daisyd, you said about hughes syndrome? ive never heard of it but will find out more as the last two blood tests i had have been difficult as the nurses said my blood is thick!? i was left with a big bruise both times and it took an age to fill the tubes too. wot does thick blood mean? didnt think to ask at the time as hubby was getting moody as waited an hour over my lupus appt time and then in a que for bloods so i just wanted to get out of there.

  • Been diagnosed over 18 years with lupus & APS (Antiphospholiupid Syndrome/Hughes/Sticky Blood, whatever u want 2 call it) as well as some of the other malarkey & been on anticoags all that time. Personally, I have found it doesn't make any difference as my problems with cns have only got really bad in the last 2 years. Basically APS is when u're blood clots far too quick which can cause random clots in u're body sometimes leading 2 strokes, DVT's etc. Once again diagnosis is made by medical history & bloods. Check out this link ;0)

  • im also reluctant to take anti depressants as the side effects make you feel unwell until your body ajusts and you feel better, i cant have any more time off work. i mean who would employ me now that i cant remember much and talk gibberish alot?! lupus has robbed me of being "normal" and i no longer live up to my old nick name of "mitey mouse" as im small but was fiesty.

  • You might like to take a look at this blog article we did for topic of the month;

  • thankyou sher78 and paul, i clicked on both of those links and copied info to asborb when i can. thankyou to everyone for your support x

  • It was like reading my life I thought it was just me and I was going mad I can watch a film and a week later watch it agin just like the first time . It drives my partner mad but noingI'm not alone is such a comfort as I'm going through my menopause and my lupus seems so be going mad xx

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