Speech, Memory, Cognitive

[briarrose]

I was going to put this post on dizzygirls topic but I think she means hers to be fun and this will just side track what she's trying to do.

Not so funny!

Recently I was talking to this guy that I really like and something didn't come out of my mouth right, I guess, I don't even remember saying it that way. I know I was thinking something else. Anyway I couldn't ever convince him otherwise. So he doesn't believe what I really meant because the "first things that a person say are suppose to be what they mean."

The other problem is my memory. I'm starting to feel like an Alzheimer's patient. But he doesn't believe me, he thinks if I can't remember something important that it's because he isn't important enough to me, that isn't true. I don't know how to convince him otherwise. I know the stress of trying to say it right or trying to remember it, just adds to not remembering it.

I know the more I try to explain things sometimes, the more confused I start to get. I can't remember the question or even the subject. Things come out of my mouth slurred, twisted, unclear, etc.... Some days I feel like a stroke patient

Does anyone understand what I'm trying to say here? Sorry I wasn't more clear. Frustrated.

[persephone]

I'm sorry you're feeling so frustrated- I would be too. Does this friend know how bad POTS and autonomic failure can become, and the impact they can have on cognitive function and speech? Could this just be a misunderstanding that can be put right by directing him towards the website, here?

I know what you mean- I get phases when I say the wrong thing a lot because I can't get things out in the way that I want to and it makes me very very anxious to think I have unintentionally caused offence.

If he is a good friend to you, I think he will understand once he becomes aware of the POTS symptoms. If he doesn't, perhaps he is not as sympathetic and supportive as you thought or need him to be.

*hugs*

[futurehope]

I hear what you're saying and I understand.

I don't know the "person that you really like" as well as you do, but be careful getting emotionally close to someone who does not understand you. It can lead to pain and misunderstandings and make you feel worse. If this person's your relative, then obviously, you may have to put up with it.

I know you didn't ask for advice, but I really am concerned and felt like I had to say something. If you already know what I said, I apologize.

[morgan617]

Sorry, but you know the old saying....."with friends like that, who needs enemies?"

If this friend is that black and white, my guess is he doesn't want to get it......I wouldn't have the energy to try and defend myself to that kind of pettiness....

Sorry to be so harsh, but CHEEZ.....if we all got blinged everytime we said something wrong...including healthy people, we'd all be burning......

[the_dancer_grl]

I understand- I'm getting that way myself but I've been feeling so ill lately I really haven't had time to make alot of friends here at college so I haven't run into that friend-wise yet. I would suggest a letter that he can read while you are there and then ask you questions about... its a starting point and you won't miss anything important because it will be written down, that's what I would do (I have a dictaphone and a pad and pen in my purse because my memory is getting so bad and don't get me started on the scare I had when I thought I'd lost my planner yesterday )

[briarrose]

Thx guys

Normally I wouldn't post something like this just because it sounds like I'm whining. But I read dizzygirls post and started to respond there and decided to take it elsewhere because I didn't want to ruin her post.

Persephone

I wouldn't ever want him to read my posts here. He wouldn't understand the progression of this illness and mindset and I've been through the wide spectrum over the past few years.

I think all of you guys have a good point and I was thinking it myself, that since he's being so shallow, not wanting to listen to my explanation then he isn't/doesn't want to be that good of a friend, he seems awful quick to crucify me. Like Morgan617 said, With friends like that who needs enemies

I guess I just wanted him to be important to me and it burns that this is happening especially from him. I even explained to him how I went to a Neurologist well over a year ago because I felt like I needed help with my memory/speaking problems. The Neurologist was zero help, not sure if he even listened to what I was saying.

[persephone]

HUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUG. That is all

[Guest tearose]

Sorry I'm late to the topic but this strikes a chord.

I too felt/ feel this happens to me when I try to express myself and the thoughts and words just don't connect.

I want to just disappear sometimes since I can't take back my words!

I sometimes would try go back and explain and sometimes this would help.

Other times I just had to let it go.

Anyway, besides the attempt to only speak with people who understand us...there are times when we must speak to the "others" and it is difficult. ( moreso at the holiday times too) Please don't give up trying, I did and now feel I allowed myself to become a bit more isolated in this past year...I am trying just recently to come out and try more socializing again. Learn from my mistake. Don't stop trying to make yourself understood!

best regards, tearose

[morgan617]

More hug.....lots of different kinds of losses aren't there, not just physical and cognitive and emotional, but at the most basic levels, friendships, relationships....

Sorry briar....I do understand that pain, have lost a lot of "friends" over the last few years.....truth be told, I don't miss those kinds of friends anymore....

[Guest dionna]

i completely understand what you are saying. i am sorry that he doesn't believe you and i wish that there was something i could post that you could say or do to make hime believe you. hugs to you. and no i don't think you are whining at all.

dionna

[briarrose]

Thanks guys, your support makes me want to cry. I appreciate your understanding.

[Rachel]

Briarrose,

I'm late to this topic too, but just wanted to say I'm so sorry that happened to you. It is frustrating enough to have to deal with brain fog and have difficulty expressing yourself. But it's even more frustrating (and hurtful) when someone doesn't believe you when you try to explain memory and brain fog problems. So sorry.

Hugs,

Rachel

[corina]

i can't keep up with topics these days, but wanted to answer this one as i get into trouble many times by bad memory and saying wrong words/things. I really understand how you feel.

what i leanred is: when people FEEL attacked (hope this is the right word, can't find another tight now) they can get really mean. i could tell you lots about it, but i won't. it is really hard to deal with this.

corina

[briarrose]

Corina

I haven't gotten mean yet but am certainly defensive and withdrawing from his behavior.

I'm starting to feel that if he isn't going to listen and believe my explanation then he's not worth the time and breath that I waste. I never wanted to feel this way about him, I can't trust him and don't want to associate with him anymore, I just don't have the extra energy to waste anymore.

I'm not one to usually make excuses, I have kind of a suck it up and deal with it attitude. I think that I need to take responsibility in the fact that I'm so busy hiding my symptoms that people really never see me as ill, only my kids know how bad I get.

Example:

I remember a few years ago when I had pneumonia, boy I felt so poorly. I waited all night until the doctor's office opened in the morning. I couldn't breathe very well, couldn't lay down, couldn't sleep and was having sweat/chills, aches. So the doctor's office opened and I called to ask if I could go get a chest x-ray, had already been seen twice that week in the doc's office and told me that I had the flu so I was getting tired of being seen. So they phoned in an order to the hospital for me to get an x-ray. I drove myself there, huge mistake because I got behind the wheel and I was so weak and out of it that I was truly scared, suprised I didn't get into a car accident. Got to the hospital and could barely walk in to the radiology department, I'll never forget how sick I was. They took my x-ray and then they had me get dressed and wait in the waiting room for the radiologist to look over my films. I nearly fell asleep in the chair. The tech came back out to get me because they wanted more films, checking fluid levels, I had a pretty good size pneumonia. (For me, My point is that people around us get so tired of hearing about us being sick that I usually just keep it all in now. I try never to complain about daily symptoms. So I guess if I was associating with someone that never looked ill and never complained and then listened to them say they have all these cognitive problems, hmmmm.) Maybe my fault?

So if he isn't going to listen to me saying that I'm having horrible cognitive problems then maybe he's just seeing me blowing smoke, I don't know and I don't think I want to waste anymore time thinking about it.

[corina]

steph,

i am very sorry that you're having this trouble. i do know how you feel.

i told one of my very dear ones some time ago (when i forgot something that was important to her and i REALLY didn't think of it), that i hadn't forgotten it on purpose and that i was very very sorry that it happened, but i don't want to appologize all the time because this is my life. i have to deal with this and she is welcome to join me in my struggle but there is NOTHING i can change about it. i can't promise to never forget things anymore and i don't want to make excuses anymore because i really can't help it. i have various systems that help me not to forget important things and they work for me but i can't write down everyhting that is said or what happens, and, more important: i don't want that.

wishing you all the best, hope this helped you lessen your frustrations a bit!

corina

oh and btw, what i meant was that OTHERS can get really mean when they feel like being attacked, i didn't mean that YOU might get mean. i would like to tell you about what happened to me some time ago but i can't right now but this woman got VERY mean to me while later it turned out that SHE was wrong.

wanted to add this!

corina