Ok so my boyfriend got a little upset with me because he said that I question stuff he just got finished telling me about. He would tell me something and 5 mins later I am asking questions about the exact things he just spent 15-20 mins talking about. I don't remember the conversation that he told me or I completely miss the beginning of what he is saying until later when he mentioned he had just told me about it. He says "why do I even talk because you don't listen to me any way. I tell him I listen I just don't hear you all the time. He said that it it happened 4 times last week.
I had not been feeling well at all. Fatigue was bad last week, I've been in a lot of pain from the weather and cold. The cold is not very kind to me. I tried to tell him it is probably my MS. He just don't seem to get it sometimes. I don't always realize that I am going through this or that it is happening.
Sometimes when we are talking (well he is talking) in the middle of him speaking I will say something that has NOTHING to do with what he is talking about.. Then he looks at me and say "where did that come from"?. I say to him that if its on my mind I have to say it before I lose it. He just shakes his head and say that was from left corner, where is your mind at sometimes. Ughhhhh so hard to get him to understand that I don't have control over some of the things I'm going through and to make it worst, I don't really realize its happening until he tell me. I try to ease the craziness by saying "you know I have brain damage, Maybe I should get some prevagen. haha
So I was wondering if anyone else out there in the MS world go through the same thing. I'm not sure if this has already been brought up or not. It was on my mind so here I am writing to see if there are others and what you may do about it.
thanks in advance
LJ 🤪🥴🤯
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LissaH
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Yes 🤷♀️😵💫 Have you told your neuro? Are you on a stimulant? Are you sleeping well? Are you actually in a relapse?
There's a lot that can make it worse for me, and my worst experience was a year on Ocrevus while having an infant dictate my sleep. I have some hilarious stories, but my becoming an idiot was not funny for any of us. I will say becoming defensive and upset over it was not my best choice.
thank you for your respond,. I'm just so happy that I'm not the only one. That is why I love this sight, because you find out that you are not alone. Thank you again. 😀
oh sorry didn't answer you questions. Yes I've been sleeping, because I've had fatigue so bad I was falling asleep here and there and when I got home from work I would go straight to take a nap end up being the rest of the night. I still work a 40 hr job. My boss allow me to cat nap if i need to, but I did find it hard to concentrate at work. The cat nap wasn't telling me anything. I work in a Preschool in a small office as a Family Worker. Its just me and other FW. I'm soooooo tired of hearing her say she is tired I want to scream. AHHHHHHHH!!!! Everyday she says it all day long and she is perfectly fine. She tells me throughout the say she is going to close her eyes for a few mins. Really!!!
anyway, she doesn't help when I'm already fighting to keep my eyes open., I'm not sure if I was in a relapse or not. Today is not to bad. Had a 3 day weekend so I rest as much as I could.
For me, that's a light day. "if its on my mind I have to say it before I lose it. " -I can relate to that.
My hub is a very patient man.
Sometimes when he (or anyone else) says something to me, I have other things on my mind & will ask a question about the very thing he just said to me or I'm feeling fatigued/MS-y.
Frankly, when I am tired, they're lucky to get listened to.
It just is what it is. One can't be expected to be "on" all the time, MS or not.
Then, again, maybe they could be more interesting when they speak. Keep that one in your arsenal!🤣🤣🤣🙂
thank you for your respond. Man it is so strange when you don't even realize it and i'm so serious about my question and to hear him say are you kidding me I just had a 15 min conversation with you about this. I'm looking like you did. I didn't hear any of that. Just part of it. He wave his hands Why do I even talkin no one listens to me. I kind of laugh to myself seeing his reaction.
oh wow, yeah I use to be up on the day we met, and had plans everytime it came around. Now, forget it I can't remember how old I am half the time. I lost a whole year telling people I was one age and it wasn't true. He had to tell me how old I was when he heard me tell someone how old I was. I had to go and do some math to make sure he wasn't messing with me. Boy was I surprise when I realized I was one year older than what I told people. 😂
My boyfriend and I have been together for 15 yrs, but I moved in 3 years or maybe 2 yrs ago haha so he is noticing more then he did in the pass because he is around me all the time now.
If this isn't normal for you, as in steady for months or years, then I'm inclined to think that you really are in the midst of a relapse. I certainly have random episodes of memory loss and confusion, but the only times I've had it as intense as what you're describing, along with having trouble to stay awake at work, was when I was relapsing.
I suggest contacting your neurologist ASAP. If it's only been happening for a week or so, it might be early enough to get Solu-Medrol to stop it in its tracks.
It happens to me all the time. I now try to write it down rather than blurt it out in the middle of the conversation. It does help with my husband's frustration. I have to try to concentrate on what he is saying so I can at least remember most of what he says. It's just part of MS & aging together for me, I'm 67. If you haven't told your neuro about the fatigue & memory, please do. My neuro prescribed Modafinal that helps with the fatigue & memory.
I’ll ask my husband the same question over after he just answered it. Usually much worse when I’m tired. We end up just laughing and he says it’s my MS brain again 🤪
i'm sure it's frustrating for him, but it's a pity he's not more empathetic. able-bodied jerks, did i write that? i mean able-bodied 'people'😜 can sometimes be jerks. it's weird for me b/c when someone tells me about something with which i have no experience, i never just dismiss them. who does that?
i'm currently suffering from horrible short term memory b/c of my meds. it's frustrating for me as i'm sure it is for you. i've been using lateral thinking and acronyms to help. most of the time it works. instead of trying to make myself think of a word, i'll start with something about it. for instance, if i can't remember 'tree,' i'll say, 'it has leaves, a trunk, grows in the ground, provides shade,' and 9 times out of 10 i'll remember. hope this helps.
perhaps he should attend a support group for people who love ms'ers?
when I forget a word i will describe it as well and he usually knows what I'm talking about and gives me the word, but he lets me struggle with it a little to see if I can figure it out or he gets frustrated listening to me trying to play the guess what I'm saying game. haha
I have giving him so many web sight to check out or I would print out stuff that I maybe going through in hopes he will get understand more. Especially when he is a researcher, he researches everything but MS. He will research what will help with pain and buy me all kinds of things that don't work. Its like he is trying to fix me instead of excepting what I have and it can't be fix. I have Raynaurds and he is trying to fix that also. I just wish he would read more on MS and understand me more that would go a long way with me. He has attended some of my appt but he only hears what he wants to hear.
He has told me the other day that he thought he had more time with me. I told him I am not disabled nor dead. I can still do everything, but slower, and it may take me a little longer to process stuff. I don't understand that statement he made. I work 40hr wk, cook, clean, take care of him and the dog, and what ever else that needs to be done. I may crash after all that but I'm still able to do it pain and all.🤔🤔🤔(confused)
Someone told me that he is scared. I can understand that, but guess what so am i because it is happening to me, and as you all know you never know what you get with MS its like pot luck a little of this a little of that.
I don't let it get to me I keep it moving with a smile on my face. 😁
i've been in both positions. my father died after suffering with parkinson's for over a decade. i felt helpless watching him slip away, watching him struggle with the limitations his illness placed on him. it was horrible, that feeling of helplessness, the pain at watching someone i loved deteriorate.
i've been sick myself for over a decade. just before his diagnosis, i was actually sicker & more disabled than he was. i remember the month we switched places. when certain family members whinged about how painful it was for them to see him that way, i remember thinking, "it's so much worse for him." there is a sort of fear that makes able-bodied people lose it. when i started using a walker, grown people decades older than me would stop and stare. i called it the, "she's young and broken. that could happen to me!!!😱" syndrome.
they'll never get it, but hopefully he'll get to the place where he can just be with you, help you, listen or whatever when you need it.🤗
That happens to me A LOT. some days people are lucky if I remember that I even saw them in the last 20 minutes, let alone had a conversation with them. If I'm already tired...forget about it...I won't remember anything. My short term and working memory are functioning only just barely. However if the memory makes to long term storage, it pretty much sticks. I've been tested and retested for the memory and cognitive disfunction since 2016. My last test, last year showed some mild improvement in one area, but other areas gotten much worse. The neuropsychologist said that typical for MS patients to improve in one or two areas and get worse in 3 or more areas, then reverse what got better and what got worse a few years later. There are a lot of different things you can try to help improve or at least maintain what you have and can do. Unfortunately, it's trial and error for each individual to find what works best for them. If you do a search for MS mind games, you should find some ideas to start with. Also talk to your neurologist for other ideas or testing to see if the cause is something other than an MS issue. Sometimes mild concussions can cause similar symptoms and you only need time and rest to allow your brain to heal.
My dearest sis, I m not gonna play "Dr.Phil" here but your boyfriend needs a lot of patience compassion and understanding about our world of MS; this is part of the ride ! When we are tired, stressed it can cause mini flare like sypmtoms causing brain fog and overloaded!!!!! He needs to learn that ! Your health is so important focus on you and your healing right now, God has a way of working things out in our lives, take care of you. Prayers and Blessings
thank you for your words or advice and prayers. Yes we have been together for quite sometime now and I would let it get to me. Over the years I've learned that I can't worry about him I'm the one who is going through it, so I have learned to put myself first. If I feel like going to bed at 7 or 8 I go to bed. If I feel like getting up at 10 am on the weekend than thats what I do. I use to get looks now he leaves me alone. I told him I either I rest when I need to or I will end up in the hospital. Pick which one. I haven't gone to the hospital yet. KNOCK KNOCK.
While it must be very frustrating for both of you, just be cautious that he is not gaslighting you - that can be very easy to do when someone has some cognitive issues and if there are some controlling aspects of his behaviour which concern you then make sure you look out for yourself. Sometimes this sort of accusatory behaviour can be a sign of worse things to come - and I'm not referring to your memory or comprehension problems. I think you might do well to seek some counselling from a psychologist and see if you can learn some ways of focusing when having conversations - not just with him but with other people as well. Have other people raised the same concerns over you not "remembering" what's been talked about after you've had conversations with them?
Absolutely! If he doesn't believe it, have him call my husband (who does understand it's the MS). Tell your neuro and ask for a referral for neuropsyche testing. That will measure how it's affecting you. I believe they can do something to help.
I have problems related to memory, but it’s related to events or things that happened over the last week or several weeks. My boyfriend refers to something we talked about somewhat recently and I have no recollection of it.
in addition to MS, being in our 50s and menopause might also be factors that contribute in someway? My doctor is remind me not to blame everything on MS.
I have what I call the "blurts." Though my comments are usually related to the topic, I have had the tendency to interrupt to throw in a thought I have before it's gone. It surely irritates others, but they would be surprised to know it irritates me more. I spend a lot of time apologizing. I've had to practice hard at waiting to speak and tell myself that if I don't remember, it probably wasn't important anyway.
My husband is so patient. When he's speaking, I sometimes realize that I have no idea what he just said, so I have to ask him to repeat it. If it hurts his feelings, he never lets on. He knows it isn't because I don't love him or don't want to listen to him; it's because of a problem(s) in my brain function. How often I have said to him, "I know you're speaking, but I can't hear you." He knows I've hit my "conversation saturation" point.
amen to that. 😒 He is so use to me listening to his stories and asking questions and very interested. Now I don't really ask to many question and lose interest.
yes I’m here ! Born with adhd add . I raise my hand then I forgot. Ya sometimes I wonder if a relationship is worth it . At a point they cut ya down making us feel like shit for being alive . Call ya out in public. Their ego loves that . Narcissists! We don’t bag on his disfigured penis ! Call him out who gets a boner side ways ! Lol lol lol I’m sorry he don’t listen to You . Hugs
For me, my brain works slower than it used to. I hear and understand, but can't take it in at the normal rate. So as they talk, I'm still processing what they said 5 seconds ago. I'm not 'dumb', I'm just slow. This may be why you miss some things people say.
I've told my wife this for years, and I think she finally gets it, though it is frustrating for her. People need patience, to deal with other's disabilities, and cognitive disability is one of the hardest for them to deal with.
Same for me. What you said is exactly how I feel about taking it in at the normal rate. Later when I'm thinking about the conversation I think about that I hope they didn't think that I wasn't really listening because either I didn't respond right away or I was pausing while I was taking it in. And if I'm in the middle of doing something then it's even harder to process what someone is saying because I cannot multitask anymore. Sometimes I feel like a bumbling idiot. I used to work a job where I was on top of my game and had to observe and document a lot and I was good at it. As I slowly got worse at processing thoughts and information, and was exhausted physically and mentally I had to stop working.
For sure. I used to manage a group of 30 people. Now, I have to focus on one task at a time, at home too. The good news is I feel like I still have some basic capability. So if I do focus on one thing, I can probably do it correctly. It just takes more focus and patience.
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Maybe I should get some prevagen. haha
"if its on my mind I have to say it before I lose it. " -I can relate to that.
I can't trust a company that makes its hundreds of billions off sick peoples. No incentive to cure. A cure means out of business.
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