Mentally and emotionally feeling disconnected 10 years later

I am from the United States but this forum seems so active and supportive so here I am. I am 58 now but had a major stroke 10 years ago. Physically I am doing pretty well considering but emotionally I am a mess. After the first few years things were getting better but over the last year or so I have been slipping backwards. Trying to keep brief, I feel so disconnected from my surroundings. I feel I live inside of a television and just watch the world from the inside, I feel like am an observer but not actually here. Everything seems dampened and softened. I have trouble often comprehending what is said to me. The way I process it makes sense to me but often is wrong. You might say “what’s up” and I might look up. When explained, I realize my mistake and feel frustrated because others can’t see how I could not understand what they meant. I often have trouble saying what I am thinking, my words make sense to me but not conveying what I intended to others. I prefer staying home as it is and now feel like it is better to not engage in conversation so to avoid the trouble. I just don’t feel that anyone understands how I am feeling.

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Hi @Doug65 and welcome to the forum, you are not alone here.

We also have other fellow stroke survivors on here from your part of the world, @DeAnn being one of them, and very good at picking you up when you are down :smile:

We can all relate and understand as strokes have no borders :wink:

What you are experiencing sounds very much like Aphasia to me, of which there are several types under that umbrella.

I myself have mild Expressive aphasia, so I have difficulty communicating thoughts, ideas and messages to others.

I’m not an expert so I won’t tell you what yours might be, even though I do have my suspicions.

Here is a link that tells you all about, I’ve no doubt you’ll recognise some of your symptoms in it.

But I think you do need to speak to your doctor about this.

From what you are saying, this is a new condition come on in the past year.

Could you have had a TIA or another stroke you are unaware of…they do happen.

And those feeling you describe of feeling disconnected, an observer, and everything dampened and softened…that is how I felt for the first year after my TIA’s; I’m almost 3yrs post stroke now.

It’s almost 3am here now so I’m soon off to bed, but I’m sure if I tag @KGB in, he’ll come on and speak some more as he’s a bit of a night owl :smile:

You take care now, remember to see your doctor to get a proper diagnosis and the right treatment going forward. :wink:

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Hi there! And welcome, I say.

You will be supported here. This is the best place for you to be.

I was a carer for my mother for almost 2 years after her brain bleed stroke. She recovered very well physically from her stroke, but, mentally, she fell apart and basically lost her mind. She died a few months ago from sepsis, and I am in deep grief.

Please don’t think that will be you! I am just telling you my experience with stroke as a carer. I saw my mother suffer like a dog mentally, and there wasn’t anything I could do. Her mind just got worse and worse.

Do anything that makes you feel safe and secure. Talk to us - we want to listen!

Maybe you could also consider doing simple qigong exercises that you see on youtube.

I know how terrible the emotional effects of a stroke can be from my mother. I lived with this 24/7 for almost 2 years. She had severe OCD over temperature, pacing at night, insomnia, nightmares, seizures, irrational thinking, etc. Her speech, memory, balances and reflexes were excellent, though. Physically, also, 80-90% recovered except for some minor weakness in her affected hand.

On here, we are either stroke survivors, or caregivers of those with stroke.

I hope to hear from you soon. Don’t forget - you’re not alone!

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Hi,

I’m similar ago to you, 59, actually, and had my stroke 1 year ago. What’s your mobility like ? Mine is bad ; I struggle to even go short distances. But if I had more mobility, I would love going for walks. I do short walks around the house, and up to 10 minutes a day on my treadmill in the garage.

I understand communication is difficult for you, so I would move, move, move. Or paint or take photos or write memoirs; collect scents, something creative or that you simply enjoy. How about Qigong ? ever tried it ? I love listening to music, for example. I do a bit of teaching too.

Hopefully, with a bit of support, some inspiration will come your way. Meanwhile congrats. on living 10 years past your stroke. Good luck for the next 10 years and beyond, and come back here, to the forum, if you think we can help. Take care, ciao, Roland

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Hi @Doug65 and welcome as the kind people have said above.

I understand this concept fully and I have it too to one degree or another everyday!! Please keep talking to use and sharing and come and join zoom meetings on Thursdays at 1pm or Friday 7pm UK time.

I can send you joining links if you are interested!

I think you will be pleasantly surprised at how many people on here do!!!

And here is a picture of a polar bear just for you!

white bear lying on floor

Kieran :wink: :polar_bear:

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@Doug65 i don’t know from personal experience but I kind of understand what you mean about how you interpret things. It’s like you almost take things in their literal sense.

I always remember a conversation I had at work one day about checking what you write or say as what it might nean to me, who knows what I’m talking about, might mean something different to someone else.

Not quite the same I know.

If these are new symptoms you are experiencing then it would be worth getting checked over.

Best wishes

Ann

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@Doug65

Hello. I am DeAnn from Indiana. We are the same age. I had strokes just over two years ago. I have often felt like I was observing rather than experiencing by being a part of what is going on around me. Realizing what is happening, seeing the details, but not really engaging in it. To me it almost seems like in slow motion. This can be similar to dissassociative disorders. I would speak with my doctor about it (probably neurologist) although I have not. It doesn’t happen often for me, and much less often since I have been on this forum, regularly interacting with other people. Perhaps in my case, I just needed to practice being a part of things around me, and having conversations that helped me pick up the less literal meanings in daily speech.

I have some aphasia, but it generally only shows up if I am tired or overwhelmed. I will have trouble getting some words out, or thinking of the correct word, but also not really comprehend what I am hearing in a timely manner. Always fun when it is a joke and I am the last to laugh, after a prolonged pause before I understand the joke!

I hope you will check in with your physician, feel more yourself soon and that you will visit with us as well.

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Hi@dtr985 I’m sorry it’s taking so long for me to write anything on this, you sound like you are going through alot. I struggle to write things down at the best of times and to communicate how I feel is even harder. When I saw your post I thought that’s just how I feel, but could hav not written it down like you did. I am three nearly four years since my first stroke and I find talking to people around me quite hard, people misunderstand what I say a lot of the time at home and I get very mixed up in conversation s. I often forget what I have said in the conversation. I’m not sure if this is down to my sight loss or something to do with the bleed stroke or cartroid blockage stroke. I too feel like I’m not in my own body living a life like I did before but like you I’m watching it on TV, I feel disconnected with everyone around me like nobody can see or hear me. If that makes sense I feel guilty I cause confusion in the household because of my stroke I just want everything to be how it used to be. I hope you managed to get some help with this best wishes x

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As you probably know, my mother had serious emotional issues after her stroke, despite a great physical recovery 6-8 months later. The mental effects were horrific. We couldn’t do anything to bring her mind back.

I’ve said this a million times on here, but it’s really true: emotional effects from strokes are ignored; it’s all about physical and cognitive recovery (memory, speech, etc.), and even that needs great improving.

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What is most frustrating besides the problem itself is that after a year or so, all I keep hearing is “Doug, you have got to understand and except that this is your new normal”! I understand that in the big picture this is true, but it isn’t very helpful to always hear that when expressing my frustration.

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I understand completely, Doug. It’s not at all helpful to hear when you’re trying to make improvements and go forward in your life. People don’t speak with sensitivity because it is not they who have had a stroke. That’s just how humans are. We have to share the same experiences most of the time to really understand.each other.

I never had a stroke, but I took care of my mother who did. I was with her 24/7 (me and my father). I know strokes rather intimately. That said, it was my mother who had the stroke - not me. I would get so angry with her at times, thinking she could do more for herself and improve her attitude. Again, though, she had the stroke - not me. Who was I to judge? I am ashamed of myself for having gotten cross with her many times over the course of two years.

My mother didn’t care what people said to her after her stroke; as she felt defeated; and frankly, she simply gave up. Nothing we could have done to help her mind, despite her having made a fantastic physical recovery.

You’re fine somehow. Every day is a “new normal” Why? Things are always in constant flux. Nothing - and I mean nothing - stays the same in life.

We all experience grief in many forms in life. Always know that others are struggling hard in life for various reasons. You are not alone. Please know this.

And, yes, you can make some improvements, if you put your mind to it. Life can get better for you - much better. Sure, things will never be perfect, but it’s not for anyone.

Take good care of yourself.

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Sounds like we have very similar residuals. I loose my speech as well when certain situations happen such as more than one conversation in the room, bright lights, loud or sudden sounds, certain pitches among others. The doctor say it is overstimulating my brain and it shuts down. If I rest for awhile it comes back. Knowing what I want to say or think is ok, but getting it out in speech is a different story. My brain was badly scared and I had a few seizures during recovery because of them but never had any prior.

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Not new symptoms. They were dominant for the first year or so after my stroke but then improved somewhat. Over a year ago it has come back and the doctors call it “misfires” and say it may improve again or it may not. Sometimes well meaning people say if you just put your mind to it will help, but unfortunately it is a physical issue with the brain not a “mental” issue. It is helpful or at least comforting to know I am not the only one with these ongoing issues.

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Let’s hope it does improve again for you Doug. Acceptance is a big part of moving gorward after stroke. Having someone remind you about it all the time is very frustrating. It’s easy to say you need to accept it but mot do easy to do when it’s you trying to rebuild your life.

I think i have acceoted some things but others i definitely haven’t. One of the things I find very frustrating is when people decide for me that I can’t do something. They may be right but i’d at least like the opportunity to decide myself :grin:

Beat wishes to you

Ann

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It’s not just putting your mind to it, but rather finding any alternative therapies that might help you: qigong, supplements, acupuncture, etc. You can’t will yourself better – I understand you there.

My mother gave up after her stroke; she simply didn’t care anymore. She was in her early 70s. It was all too much for her. But, that was her. You others on here - you seem to have a strong will to get better somehow, or a stronger will to live, at least. That means something.

Take good care.

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Hi Doug
A belated welcome - I was out of circulation

There is a welcome post
That explains searching & links to other posts that might give you some thoughts.

Your frustration with being told “accept the new you” could maybe be unpacked a bit?
Have you accepted it and others can’t see that? Are you still progressing to grow into post-stroke strengths? Are others insensitive, wrong, mean, something else…?

The zoom link https://bit.ly/StrokeThuCafes we use for the chats mentioned above - which you very welcome to join & talks about all sorts of stuff including ‘folk not gettin it’- is also available if you want to chat with people in your (or almost EST CST MDT PDT?) time zone like @Chlodog @DeAnn @Outlander @axnr911 et.al. maybe you folk could coordinate something else I’ll try :slight_smile:

Ciao
Simon

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It also seems as if I can do some things for awhile, then I can’t, but for the most part they come back. I cannot seem to stop at a decent point when I am doing well. I wear myself out and just can’t get the brain firing again until it is good and ready. Then I get frustrated. One way or another, though, I am getting to a point I am content with. I hope if you do find you would like to Zoom, you will reach out to me as Simon suggested. Remember I also sometimes have issues with Aphashia, and will occassionally show up in my PJs or show my messy home. LOL. Just be you, we will have a decent time talking.

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And if you’re doing it a time that translates to sensible for the UK then I might join you too and I’m sure if you doing it a time that’s not sensible Kieran will join you
:slight_smile:

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Yes, Kieran has messaged me at 2 or 3 am. He operates at strange hours. :upside_down_face:

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