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Please remember.. we arent all the same!

Discussion in 'General Symptoms' started by taniaaust1, Nov 2, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    Im feeling wee upset right now... someone get frustrated and annoyed with me in the chat due to me asking the same thing more then once during an hr long convo cause I forgot.


    I ask for all here to consider that many of us have memory issues and sometimes there are others who are worst then us with certain symptoms.

    One of the reports from the hospital states I asked the same things over and over as I couldnt remember (I had no idea that I was doing that.. as I forgot I'd asked). This is supposed to be a support site so please be supportive and not get annoyed at those of us who have memory issues which show at times. It hurts all the more when it comes from another who has ME/CFS as well.

    It isnt our fault we cant remember things.. we try... . Dont assume its cause we arent reading your posts or not paying attention to them.

    Anyway.. Im sad right now that someone get frustrated and annoyed at me due to my memory issues. I struggle tons in my daily life due to them so its sad to have someone frustrated with me here due to them too.

    (I hope my post is making sense.. Im having a hard time just writing this).

    This incident is making me feel like Im not even up to the chat here due to being unable to follow well even when I thought I was but that is my only real time social support.
    svetoslav80 and L'engle like this.
  2. currer

    currer Senior Member

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    Hi tania,

    Please dont feel upset, I often find your posts useful and interesting. You are a valuable member of PR.
    You do not come across as disabled as you say you are!

    It is hard on a forum where we cant see each other for us all to remember that to other person may be very ill.
    taniaaust1 and L'engle like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Memory issues, maybe they just forgot cfsers have memory problems, dont let it worry you, they have probably forgotten already.

    cheers!!!
  4. Mary Poppins

    Mary Poppins PJ Princess

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    Oh, Tan, I'm really sorry to hear that. I agree with Heaps, they prolly forgot about the memory issues.

    Timely reminder, however, that we all need to take deep breaths sometimes and take a few moments to mentally unpack our own emotions before posting in chat or on the forum.

    Thanks for posting, Tania. Hope you're all right :hug:
  5. Valentijn

    Valentijn Activity Level: 3

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    My memory's been crap since I got sick. I only had one time where it was bad enough to scare me, saying the same thing twice in a row because I'd forgotten already. I don't wanna go there again.
  6. Nielk

    Nielk

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    Hi Tania,
    Real sorry your feelings were hurt, especially at this time when you are struggling.
    For me, the chat room is a real dilemma if there's more than two people there. I can't keep up with it. It makes me dizzy and I don't understand who is saying what. That's why I very rarely go on it and only for a few minutes.
    I understand the need though for social interaction. Isn't there an ability on chat to invite one person for a private chat? Maybe that would be easier? I, too, constantly forget what I just said. My daughters are always telling mr "but, ma, you just said this already". It's very disconcerting and I understand how you feel. Please don't feel put down. If I would have an opportunity to have a real chat with someone on this forum, you would be on top of my list!
    taniaaust1 likes this.
  7. rydra_wong

    rydra_wong Guest

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    Tania,

    When u r not having a bad day (or bad episode of what must seem intermidable length) your memory is so good it astounds me!

    You remember things about PEOPLE, not just facts. It surprised the heck out of me when I mentioned that I use broccoli supplements to ward off breast cancer and, maybe 6 MONTHS later, when there was news that broccoli supplements do not contain as much active compound as eating broccoli, you remembered that I take that and warned me! That was extremely nice of you.

    But I also thought - Holy Crap! - what a memory for even the most minor details this woman has! When you don't feel well it's hard to pay close enough attention to store things properly in memory, but once the info gets in there, there is NOTHING wrong with your brain!

    (I hope u r feeling better soon).
    Rydra
  8. svetoslav80

    svetoslav80 Senior Member

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    Thanks for writing about this Tania. I've also been in situations where others are mad at me because of my inability to concentrate. This is like being mad at a man without legs that he's not able to walk. But people just can't understand our condition or maybe just don't care. Even friends. So I don't call anybody anymore.
  9. L'engle

    L'engle moderate ME

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    Sorry to hear, Tania! I agree with everyone else here. I like talking with you!

    That is one of the hardest things I think, being belittled because of the cognitive issues. I have had that as well in my life. It's clear that you are very intelligent. I hope this community can be a place where people don't judge others on cognitive issues. Besides, I personally find it hard to sort out who said what on chat and I'm amazed anyone can remember at all!
  10. madietodd

    madietodd Senior Member

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    Tania, I'm shocked and amazed and angry that anybody would get mad at you in chat, no matter what the "reason." I depend on chat as a safe place to be playful with friends.

    Were you in General Chat, where I find more confrontational people - non-members? I'm mostly sticking in the Registered Members chat now, because I keep meeting someone in General who thinks he knows everything.

    I like Nielk's suggestion, if you were poorly treated in the member's chat. Or if it's just too much. You can open a "new chat" and specify that it's private. Then you can invite anybody who's in the "people here" list. Nobody else even sees the room.

    I send you a big hug, and a GRRRRRRR.

    Madie
    L'engle and taniaaust1 like this.
  11. Mary Poppins

    Mary Poppins PJ Princess

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    How are you feeling today, Tan? Has the hurt settled a little bit? More hugs :hug:
  12. Mya Symons

    Mya Symons Mya Symons

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    Thank you for this Tania. I have been feeling the same. It seems that my worst issue right now is my memory. I think it is because I have become fearful that someday I will loose myself and possibly not remember my family. It is not only the CFS. I have relatives who have had Alzheimers. My memory has become so bad that I am having severe difficulty with face recognition. Even if I have met a person several times, if I do not see them on a daily basis, I do not remember them. I have had to fake it on several occasions. It is scary.

    I think that many of us have reasons to be very sensitive regarding this issue. Others should keep this in mind. Please.

    I wanted to add one more thing. The memory issues can vary day by day or even minute by minute. One day my memory is o.k. (as compared to the bad days) and then another it is not. I don't know if that is the same for others. Also, some days (actually, it is becoming most days) making it through all the posts on a thread is very very difficult if not impossible. I can not maintain the concentration that would enable me to do that.
  13. Dainty

    Dainty Senior Member

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    I'm so sorry you were hurt, tania. :(

    One thing that I've noticed is that even with an understanding of memory issues, the conversation may still be difficult for everyone involved. For example, I have a grandma whom I love dearly and I realize her memory problems are not her fault, but all the same talking with her can be draining because of the need to continually repeat myself. In order to avoid portraying any annoyance or inconvenience I've needed to alter my expectations and limit conversations with her to what I can cheerfully handle energy-wise. It hurts to have do that, because we were quite close, but now it can no longer happen. This illness impacts our social lives in so many ways it's amazing to me how our community can overcome to interact.

    As this thread title says - we aren't all the same! Some have more cognitive issues, some have more energy issues, some have more pain, some are bedbound, housebound, and some are able to go out and about. Understanding is needed from all levels to all levels.

    :hug:
    Ocean and taniaaust1 like this.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Interesting, didn't ever notice that there was a General and Registered chat.

    GG

    PS I would try not to take what someone chatted about you to personally. Like you say we are not all the same. My brain fog is much better but memory is still not great and I can be rather slow sometimes.
  15. taniaaust1

    taniaaust1 Senior Member

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    Thank you Nielk :)

    It wasnt an issue of being too many people. Thou there was three of us in the room, only the two of us were really talking much. Im stuffing up just with what is basically one to one.
    ......

    That is the second time Ive got into trouble at a chat or forum in past 5 days. I've been here more as 5 days or so ago.. another at a forum got upset with me due to the ME trouble. Hence Ive stopped going there and only been coming here again where I thought I wouldnt get into trouble with people for my problems.

    (the other at the other site 5 days ago got really upset as I was stuffing up words and having trouble with my sentences that day so she mistook something due to my sentence not making any sense. When i explained to her I was having trouble with my posts due to illness...she didnt believe me). So this latest issues here.. well I feel completely hopeless with chat seeing its making people angry at me.
    Both incidences in the past week have been basically a one to one situation.

    Im going to avoid chat for a while.. being worried someone else will get angry at me due to my inability to communicate well and remember.. well its stressful. Twice in one week is enough.
  16. taniaaust1

    taniaaust1 Senior Member

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    Wow are you sure that was me? I dont remember that at all. Im not even aware I knew that info. (thinking you may of gotten me confused. I confuse things too .. or maybe I posted something in a confusing way to you).

    I can get long term memory loss too but with that its like things drop in and out. I forgot how to cook toast once.. and when I was still driving.. I once forgot how to put petrol in my car (so had to stand there and watch another do it and copy).

    I do try to keep old posts to refer back to at times (so that can make it at times look like I remembered something astounding). My need of keeping old posts is what always gives me a close to full pm box.

    My granddaughter will be a year old in a few months and I still forget her name a lot.
    .................

    WOW. Ive come back to edit this as Im now starting to remember something very vaguely about the brocolli convo. I think that may of happened as there is something there now in my memory about it.
    thanks

    :) You have a good memory about the broccoli

    crap.. i feel like im living in some kind of dream world.. remembering real life stuff is like trying to remember dreams. Its as hard as trying to remember dreams.
  17. taniaaust1

    taniaaust1 Senior Member

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    Sorry to hear its got that point for you too. Im really cutting myself off from people lately (starting to not even want to be going out there and associating with others due to my brain... at least before even thou I physically couldnt I still wanted too) due to all this.

    nods.. yeah.. Ive thought of that example myself in the past. Like getting annoyed at a man with no legs who cant get somewhere.
  18. taniaaust1

    taniaaust1 Senior Member

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    Thank you all for the posts. The support has cheered me up a bit.

    Im feeling a little bit better (going to avoid chat thou as I currently now just got to much stress around that and worry about others reactions to me).

    I actually had something good happen today :) . Someone has pmed me over a POTS specialist interstate it looks like I may be able to fly interstate and see. (the POTS isnt helping my brain either). That's very exciting news to me as Ive been looking for a doctor who knows about POTS for years.
  19. taniaaust1

    taniaaust1 Senior Member

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    I think that was an important point about memory varying day by day or even minute by minute. There can be a permanent issue but its so changable too as you pointed out.
    I wish a social worker who did an Alzheimers test on me (also wrong test for us) was aware of that.

    I sometimes cant read all the posts on a thread either.. and that has gotten people angry at times on other forums (part of the reason too why someone blew up at me at another forum the other day. She'd done a post which was verylong so I only read half of it and replied to that part I'd read. She'd begged me to read the post so I tried and tried to reply to it which then resulted in a bad verbal attack on me even after I tried to explain I had a medical issue. (that forum elsewhere isnt as well moderated as here)

    I can understand how worrying that would be with family members with Alzheimers. At one point with the ME (when my brain was worst) I didnt recognise my sisters husband when he come to the door and then had to "fake it" for 10 mins till I realised who he was, only cause he started to talk about my sister. Thank God that still isnt happening to me. (In that incident I knew that I knew him but had no idea how I did or who he was).

    Im thinking about going back onto my B12 as that has helped my brain some in the past.

    I hope you find something which improves your memory some.
  20. ahimsa

    ahimsa Senior Member

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    I still have this problem but it used to be a lot worse. As you said, memory problems can go up and down depending on so many factors.

    taniaaust1, I have a few stories like that, too. The worst one happened while I was still working. As I was walking down the hall I passed this man. He said "Hello" and I said "Hi" in return. But I was thinking, "Who is that?" I knew that we were supposed to know each other somehow. But I did not remember his name, his face, or even how I knew him.

    It was not until a few days later that I figured out (not from my own memory, but by some other event, perhaps seeing him go into his office) who he was. He was my former boss. I had worked for him for about 6-7 months during the previous year. We had seen each other almost daily, attended regular staff meetings, and he had given me my performance review. And yet, when he passed me in the hall, I had no idea who he was. Thankfully, it never came up that I didn't recognize him so no embarrassing or awkward moments.

    This type of memory problem is not the same as simply forgetting a name or face. This is having no memory of name, face or relationship. As Mya said, this type of memory problem can be a bit worrisome.

    Memory problems are so strange. I can be very deficient in one area and still do well in another. Once I left my grocery list at home. I could visualize it in my mind's eye and I was able to remember most of them - I think I got either 9 or 10 out of 11 items. So, in that particular area, my memory is pretty good.

    But in other ways my memory is terrible. My worst problem is remembering what I was doing. If I'm interrupted then whatever I was doing is gone from my mind as if it were never there. If I don't have some visual cue for what I was doing before the interrupt then I'll probably never get back to it. I have lots of little paper To Do lists so that I won't forget things. My teenage nephew was visiting us once and he saw one of my little lists. It had an item for "brush teeth" - rather embarrassing.

    The good side of this particular memory problem is that I'm very good at being "in the moment." :D

    Seriously, I'll never forget telling the doctor that it had been weeks, probably a month, since my last migraine. My husband looked at me (this was when I was too sick to go alone and he took me to all my appointments) and he said, "But you woke up with a migraine just a few days ago." I had completely forgotten about it until he mentioned it. I wasn't trying to ignore my symptoms or minimize them to please the doctor. I actually did not remember it. But just as soon as he said it, then I remembered it.

    And this has happened to me not just about things that happened a couple days ago but even after maybe 30 minutes. Let's say my husband tells me he has a work lunch tomorrow. A little while later I will ask him what he wants for lunch tomorrow. He looks confused/frustrated and I wonder what's wrong. Up until the point when he actually reminds me that has already told me about his lunch plans I have no memory of him telling me. Then as soon as he reminds me, it all comes flooding back, including all the details.

    I don't know what this kind of memory problem is called (is there a name for it?) but whatever it is I have it all the time. And it is so frustrating!

    Back to the original post, it is all too true that we have a wide range of cognitive problems that can change from day to day. It's so hard even for those who know us well. I'm thinking of how my husband still gets surprised, even after all these years, about how big the difference can be between a good phase, when I can think clearly and even speak in complete sentences, to those bad phases when I can barely think and can't even come up with nouns for common household items (I can picture what I'm trying to say but I can't think of the word for spoon or table or refrigerator).

    It's good to have this thread to help folks remember (see what I did there? ;)) to be patient with each other.

    Sending :hug: HUGS :hug: to all.
    taniaaust1 likes this.

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