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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Does anyone else get Easily Confused?

Discussion in 'Cognition' started by Carrigon, Oct 6, 2010.

  1. Carrigon

    Carrigon Senior Member

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    Sometimes, just small things in life confuse me. And I'll go to ask about whatever it is and end up getting treated like I'm retarded or looking totally stupid. It happened to me yesterday. I was justified in my confusion, though. But still. The place I live at switched banks that hold our security deposit, so I had gotten a statement in the mail that apparently I wasn't supposed to get. Thought it had something to do with my mother's estate because it said escrow. So I took it to the bank, thinking it was mine. The teller explained what it was, was nasty about it and showed me one small line on it that said security, like I was supposed to know what it was. Then she refused to give me back the statement, which was my personal mail, told me she was shredding it because it was sent out in error. So, I was left looking stupid and being treated really badly. And I was too sick to fight about it or do anything. I think it was illegal that she shredded my personal mail, whether sent out in error or not. It was still a statement showing how much security deposit I have and I might have needed it for something in the future.

    Anyway, I just hate getting easily confused and then being treated badly because of it. And sometimes this disease makes it hard for me to get out what I want to say, communicate in the real world. And I feel people take advantage of that. If I'm alittle slower to understand something. I do understand it, but it takes me like another minute or so for my brain to process whatever it is.

    I tend to do much better online because I can see the written words and my brain understands that. But when it's something where someone is telling me something or I have to read something offline, I can end up confused.
  2. jimbob

    jimbob ME/CFS84-XMRV+

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    Join the club! The brain fog sympton is awful. I used to be so sharp before this, had a comeback for any question instantly. Now I'll be heading into another room in the house to do something, and by the time I get there i've forgotten what it was. And I'm only 60 for gods sake.
  3. helsbells

    helsbells Senior Member

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    Terribley confused - I liken myself to someone with early stage althzeimers and I truly mean no disprespect to people suffering from that but its the only way i can describe the level of cognitive dysfunction. Brain fog sounds euphemistic, woolly, sorry oh silly me I forgot again. What I experience isn't like that i have broken 2 objects and damaged another in the last two days because even negotiating around my living space seemed like such a conundram. I very recently broke my toe indoors because someone spoke to me while I was walking - to me that is multi-tasking and I am not joking, as i thought about what to reply I couldn't focus on walking and walked into a door and broke my toe. I find this loss of sharpness harder than my physical wellness because well...I used to quite smart and the honest truth is my IQ is no where near what it was.
  4. leaves

    leaves Senior Member

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    lol. if it is any comfort to you; I have that since the mature age of 7 :)
  5. Dainty

    Dainty Senior Member

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    Yep.

    I was majorly confronted with it the other day. Before I became ill I used to be very skilled at a certain board game, and a couple days ago discovered it's possible to play it online. After reviewing the rules I was ready to go, and thought it would be a lot of fun. To my surprise I found myself barely able to muddle through it....game after game I was the slowest one, the one making stupid mistakes, the one just not "getting" the game like I should, while it used to just come naturally to me! It wasn't a matter of not playing in a while....sadly, the more I played the more I realized that my brain has become slower than it used to be. I don't know what my IQ was before I became ill or what it is now but I guarantee that it's currently lower now than it was when I was healthy.

    That's not an easy thing to accept.
  6. Carrigon

    Carrigon Senior Member

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    I can relate to the game thing. I used to do Chinese astrology readings using cards. And last year, I tried to do one for a friend, and it was like, all the knowledge I've had in over thirty years of doing these readings was just out of my head. I could barely complete the card reading. I was shocked that my brain was going blank. I've been doing Chinese astrology readings since I was eleven years old, I'm forty. That's alot of years of knowing the meanings by heart. My brain went blank for half the reading or more.

    This is a problem I have with traveling. I can't take the regular public bus because I might get confused and not pull the cord for the driver to stop at my spot. I have to apply for the curb to curb disabled busing and really tell them that I have cognitive problems. I don't think even my doctor is aware of how much of a problem the confusion is. It's something I really struggle with.
  7. alex3619

    alex3619 Senior Member

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    Hi, the problem of not remembering what I am doing I get many times a day.

    Multitasking has always been a problem for at least the last twenty years. The other day I was concentrating on draining a bowl of microwaved vegetables, and I poured the water out into a sieve to catch the vegetables. The only problem was, I had forgotten to take it the the sink first... the tiniest distraction can throw me off, even if it is something I have done thousands of times.

    I had an amusing incident with a bus driver a year or two ago. Our local bus company frequently hires people for whom English is not their native language. He was saying stuff to me and I didn't have a clue what he was saying, my brain wouldn't handle the accent. I kept asking him to repeat himself and he got louder and louder: I think he thought I was deaf. However, once his voice got really loud, he improved his diction, and I could finally understand him. It is clarity of speech that is important, not volume.

    I have many other incidents I could relate, but you get the point: this is a common problem for many of us.

    I have a related question for the thread: how many of you have lost your sense of the passage of time, and how long had you been sick when it started? Me, it didn't happen for decades, but it is getting worse in parallel with my circadian sleep problems.

    Bye
    Alex
  8. leela

    leela Slow But Hopeful

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    I can totally relate to all of this. I try as best I can to take it as a (harsh) lesson in humilty when I'm out and about being dotty and people give me that "Are you an idiot?" look. I used to identify strongly with being quick, sharp, smart, witty, etc. Now that those things don't come as easily, and I get sooo frustrated by it, I try to remember, in a Zen-like way, that in my essence I am none of those things: smart/silly, quick/slow, clever/dull, graceful/clumsy. Who I am is something beyond attriibutes, and it's only my Ego that wants others to see me in the light of those attributes. It's horrible to be in it in the moment, and swallow bucketloads of pride, but it can be a good kind of humbling that makes me waaaaaay less judgmental of others (when I can get to feeling noble about it ;)

    In the end, we're really all just consciousness wrapped in a meatbag, wandering around in various states of self-delusion. ME/CFS is the rapid-pay plan for shedding the delusions and finding out what our true nature is. It's the thing that's in our hearts and spirits that really counts--though this is really not the fun way to find that out!

    Kind of off-topic, I guess, but this is the way I try to deal with the daily, horrible face-to-face with what seems like hideous loss of myself and how I relate to the world and it to me.
  9. Sing

    Sing Senior Member

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    leela, you really made me laugh!

    "In the end, we're really all just consciousness wrapped in a meatbag, wandering around in various states of self-delusion. ME/CFS is the rapid-pay plan for shedding the delusions and finding out what our true nature is. It's the thing that's in our hearts and spirits that really counts--though this is really not the fun way to find that out!"

    And beyond the gift of laughter, thank you for expressing the truth of our condition so well.

    Carrigon, thank you for this thread. Your examples from your own experience were amazing--I mean that in the sense of being so on target. I could tell you the same kinds of stories.

    It is noteworthy how some people will immediately start to take advantage of us being confused and slow witted. The predator mind reacting instantly to a whiff of this weakness, as an opportunity to exploit.

    However, on the other hand, there are many individuals who react with kindness and helpfulness too, especially if we can explain our brain fog/memory issue or? in a way that the other person can relate to. I sort of roll my eyes and say, "I can't remember Anything these days!" And a lot of the time the other person responds, "Yeah, I know Exactly what you mean. I have that trouble too." That is the idea anyway. The other person won't know how bad or how frequent my problem is, but the important thing is to link up with them in a potentially empathic way so that then we are both on the same side with whatever is going on.

    Trying to do this with a predator mind or someone who is hard or never had such a problem in their life, however, I quickly discover my error in approach!

    Yesterday I had an interaction with an auto insurance salesman whom I had discovered, in an earlier transaction, was of the predator type in relation to my tendency to be slow and confused. And I actually expressed some anger and backed him right up! I can't tell you how rare this was for me to do. I won that round, though I don't know if there is some way he can take revenge--You have to look out, because then his ego feels like it just took a hit, and he may want to get even--that is how I see it. In the end, I let him express a false 'story' through which he could justify his taking advantage behavior as "just trying to look out for my interests". This was BS, but I let it slide in order that he could regain face--restore his ego's pride.

    leela, you said so much more that would be good to respond to, but I will leave it at this for now.

    Sing
  10. SOC

    SOC Moderator and Senior Member

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    Oh yeah, I can relate to that. The sicker I am, the more confused I am. Simple things that I should be able to understand can be completely befuddling. The good news for me is that taking Valcyte for an active HHV-6 infection has improved that symptom hugely. It's still a symptom that rears its ugly head when I overdo, but it's temporary.

    The loss of sense of passage of time was one of the first cognitive things that really freaked me out. The whole day would kinda disappear on me -- I'd think I'd been doing something for a short period of time and hours would go by. I'd try to pay attention to the passage of time, but it wouldn't work. My PCP gave me Provigil, thinking, I guess, that I was sleepy. It did nothing for me whatsoever. It started about 5 years after my sudden onset illness. It's much less noticeable now, but I can't really say when it got better, or why. It must have been a very slow improvement, because I didn't really remember about it until Alex mentioned it.
  11. leela

    leela Slow But Hopeful

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    Sing,
    I'm glad to have caused you to laugh! I know how glad I am when someone here causes me to (metaphorically) spew milk from my nose!
  12. helsbells

    helsbells Senior Member

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    That I get Leela but for the here and now it is just so boring to not access those mental faculites that would facilitate learning and creating, i could learn about quantum theory what I eventually take in i can't retain for more than a couple of hours, I could write poetry - no words come and stretching for them is exhausting, i could sew but quite frankly i wouldn't trust myself with scissors. I get the ego but on a day to day basis it is just so boring being this dumb and uncreative.
  13. Victoria

    Victoria Senior Member

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    I had to smile as I read these posts.

    I cannot multi task at all, in fact I sometimes have trouble doing a simple thing like putting the kettle on.

    I DO believe I have improved since I've been doing more creative right brain stuff though. Which is interesting in itself. I stopped most of the heavy left brain stuff when I quit work. Now my creative ability is emerging as a winner in the brain stakes.

    I actually thought I DID have early Alzheimers towards the end of last year.

    Hellsbells, I urge you not to quit on the creative side of things. One day, you may find it re-emerging stronger than ever (like I did). Don't think I've really done anything much creative for 15 years (until I quit work & slowed down my life to a very simple existence).

    And you know what? I love this simple life like no other I've experienced in the last 25 years or more. (even if I do sometimes wish for a bigger income to pay the bills, & a brain that actually remembers to pay the bills).
  14. IntuneJune

    IntuneJune Senior Member

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    Don't you just hate that!

    I really do hate it when I stop mid sentence, staring at the person I am talking to, and realize, I have NO clue as to what I was saying..... :tongue:

    Posting on the board is hard for me sometimes as I know what I want to say but cannot find the correct word.... It is happening right now. I had wanted to continue saying above that because of my stopping mid sentence--this occurring over and over, I have lost respect of some folks. But you see, "respect" is NOT the word I want. So I have not conveyed my idea. Humph!

    There are so many folks here who write awesome posts with so much information. I am lost. I cannot get my head around the methylation theory which is really intriguing and have been following Rich's posts for a very long time.

    Have been at this 30 years, the brain fog has been with me since the get-go. But it is worse now, of course I am older....so a little of it is probably normal aging thing, but you folks know, we are dealing with another aspect of the brain fog.

    What has happened recently, hummm, a year or so, is that this is making me more anxious. Repeating processes to make sure I have not left something out is something I do constantly, and of course this uses up what little energy stores I have. Two small examples: I will check three or four times to be sure I have something packed before I leave the house. When I am not near the computer, say, when I wake up in the middle of the night, I worry if I paid such-in-such a bill. (Most are set up automatically anyway). Well, it goes on and on.

    For years, 20 or so, I joked about it. But now, I am more concerned.

    June
  15. Mya Symons

    Mya Symons Mya Symons

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    I get easily confused also. I also have a short attention span now. However, I don't think asking the teller a question should of been such a big deal. I think you should call her supervisor and let him or her know what happened. I would. She has a customer service job and when your in customer service part of your job is to handle things politely. She was not entitled to be rude.
  16. leela

    leela Slow But Hopeful

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    It's one of the worst things for me. I find it really hard to access my former creative self, and it's even more frustrating than boring:( It's like the process for doing art gets as jumbled and confused as the daily tasks/thinking, and I just end up like a tantrumy four-year old who's pitching a fit because glitter and shreds of paper are stuck to her gluey fingers!

    And I agree with Mya. That teller's behaviour was uncalled for, and maybe if you lodged a complaint it would make you feel a little better to make a stand. It sounds like the teller was abusive, and that is just unacceptable.
  17. cigana

    cigana Senior Member

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    I used to get easily confused but that was one of the symptoms that went away after I supplemented with vitamin B12.
  18. Carrigon

    Carrigon Senior Member

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    I tried writing to the bank at their main site, but it threw errors when I tried to send it. Right now, I'm way too flared up and sick to do anything about it. But it does still upset me. It was a horrible experience. Never in my life has anyone taken a paper from me that belonged to me, whether sent in error or not, and told me they were shredding it! She actually refused to give it back to me, said it was sent in error and she was shredding it, she took it and walked away. And I was just left there stunned. I didn't make a copy of the paper because I never expected anyone to basically steal it and say they were shredding it. I thought I'd go in, and it would be handed back to me. Even if it was sent in error, which I don't know. The place I'm living in switched banks for our security deposit. I'm not convinced it was sent in error, it may have been sent out just to show us what we have in security. Either way, the teller had absolutely no right on this earth to take my personal mail and tell me she was shredding it. Sure I seemed alittle confused as to what it was. I thought it had to do with my mother's estate because it said escrow, so I thought it was something that was mine from when I was executrix of her estate. But once it was explained to me that it was my security deposit, I totally understood that. And she should have handed it back to me. It's one of those amazing moments where you're just too stunned and surprised at someone's behavior to say or do anything. You just don't expect someone to do something like that. I've never, ever in my life had anyone do something like that before. So I'm still freaked out over it.
  19. urbantravels

    urbantravels disjecta membra

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    I like to think I don't have too many cognitive problems...yet. but I'm such a new arrival at this party that I fear the day is coming when I will be much more troubled with brain fog.

    I've always had a tendency to be somewhat absent-minded (usually because my mind likes to wander off to something more interesting than what I'm doing at the moment) so I wouldn't want to overstate the significance of things I've done lately, like lock my keys in my car...leave a bottle of meds on a table in a restaurant...lose small items around the house or forget a name or a date...these kinds of D'oh! moments aren't exactly a new symptom. But I do worry.

    To give some idea of my baseline ability to recall facts with speed and accuracy, I am (was) a game show champion. Though I don't really have that deep competitive gene that many people have (*cough* men *cough) and don't want to be one of those people who embarassingly dines out forever on having done something kinda cool years ago...I do admit that my ability to be quick with information was one of those things I used to pride myself on, that seemed like a part of my "self".

    Leela's comments about meatbags are hilarious and also well taken. When those skills and abilities you used to have are taken away from you, what's left is still you and you are still yourself. I have a very hard time with this one. Am I even going to be able to recognize that what's left is still me?
  20. SickOfSickness

    SickOfSickness Senior Member

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    Agree - thanks for this thread - and I can relate to practically everything and there are so many great words written here.

    I am tired and at a loss for words.

    And yes, Alex, I have also lost my sense of passage of time more and more. Probably similar to an Alzheimer's patient :( I believe it varies week to week depending on sleep and other factors. Probably stress and hormones. But overall, worsening. I may be speaking of a different symptom than you are. I have a whole bunch of problems.

    I do hate how people judge me for it. They don't think, "oh she's just tired", but they think I am being a snob on purpose, not being nice enough... well, and other things... can't think now.

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