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Russ

Anxiety, anger, isolation, and depression

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2 minutes ago, ksmith said:

it could.. I say that for my eyes bounce and that makes me very nauseous or if you eyes are a fraction off that can also make you feel that way. I wore prisms in my eye glasses for years. Doing exercises for my eyes and ultimately I had corrective surgery to bring my eyes closer but with the bouncing seeing clear or straight was impossible, but that's a different story for another day.

 

Don't forget, fatigue after a stroke is common and people tend to forget the simple thing of "thinking" can exhaust some. Some may see that as minute but imagine , if you will :) )  your arm was broken and in a cast for 6 weeks and you go back to work and try to resume work as normal. your arm isn't moving the same and weak and it's similar to your brain, sometimes, and sometimes there is no problem.

 

 

When you world is off , even a tiny bit, it will  make you lose your balance. I also spoke to a therapist once when I was seeking visual therapy after my stroke in https://med.nyu.edu/rusk/ New York ( mu father would drive me there 2.5 hours one way a week.. love him) and the therapist told me sometimes with a cerebellum stroke sometimes you may have dizziness that may never go away, The sad truth is because we are still learning about the brain and cerebellum.   

I think I will sit down and cry is I have to be tired, nauseous, and dizzy for the rest of my life. :-(

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It's not fun but what can you do. For instance I close on eye to type or to read and soon it's be that way for I'm going to wear a contact that make me see the world a little more stable but we all do what we have to do. 

I applaud you for going back to work, and having great kids just listen to your body and talk to a talk to your doctor 

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Hi Russ I had a bilateral cerebellar stroke in 2015. People usually don't see my issues physically anymore. I always say "it's all in my head". My way of humor when someone just doesn't get it and maybe they are rude or just flat out mean. I also know what it's like to hear others say "I don't want to hear about the stroke anymore. My dad has even said "don't blame blah bla blah on that stroke that is over with". If only they knew...But they don't. I can tell you my head is &=/++=_d up but it's like psychiatric issues sometimes...they can see a broken bone but not a broken brain sometimes. It used to enrage me and I try as hard as I can now to just turn the other cheek and realize their ignorance and pray they'll never have to be in the same position one day.

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I get the "don't play the stroke card" or "you're just avoiding responsibility" or whatever regularly.  I can understand it, this is an invisible injury.  Even my wife, who has been my greatest support and manages my medical history and rehab (she's a veterinarian, so this is right up her alley), gets frustrated at times and takes it out on me.  I used to get miserable and upset; now I'm at a point where I am able to shut up and ride it out and think how grateful I am they *they* don't have to go though this.  In my wife's case, I try to help her, because I know that she's just overloaded from having to deal with my stroke, plus her work (which is stressful), plus the kids, and that that all leaks out sometimes.

 

And I take naps and little time-outs when I can.  Passover is coming up, with lots of _huge_ get-togethers with extended family and their friends (with whom I have very little in common).  At these things I usually try to tune most of the noise out, so that I don't overload, sit quietly and hope that no-one notices that I am there.  And if I do get dragged into lots of conversations, I try to find a polite opening to duck outside or into another room or any place quiet where I can sit by myself and recover.

 

The good bit about those sorts of events is that it takes an hour or more before anyone notices that I am not there and comes to look for me, by which time I've usually go some strength back.  These things were tedious before the stroke, they are (literally) unbearable since.

 

You just have to look after yourself; it doesn't help anyone to be a martyr.  And try to ignore those who don't understand, and who don't understand how grateful they should be that they don't understand. 

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     I had brain stem deep middle brain stroke so they told me. I just had another MRI to take a look at my brain.

 

Anyway I read your post and it could be ready my diary a bit. I was told I had vestibular problems which explained what was going on for me. And stroke is a grab bag of stuff and highly personalized. we are similar but not same.

 

I am glad you have good family support. I think it is normal to lash out at those closest to us even though we regret

...first who else is around who will forgive and love unconditionally and try with everything to understand.  That is what hurt me so much. I had no filter. now a tad better. But I was honest to a fault. I shared every thought. I was selfish. It was all about me. Well it had to be then because I was lost and looking just surviving after surviving. I had to protect them from me can I even imagine. 

Was it personality change or was it some awful coping going on that would end. Did anyone know.  I was impatient rude just said my mind. I am still aware I need to be silent sometimes. I have to take time just stop. say nothing. I was comforted reading others had this too. I relaxed. I was still a nice good person. That was important. I knew I was still the Me I knew and wanted to be. only my behavior was Mrs Hyde sometimes. The problem still haunts me. When I get upset I lose my cool. I am feeling over stimulated and well my brain is damaged in that area so I had to heal and relearn basic social skills. No one worries to tell you what is in store. I was not warned. So I felt abnormal. Bad. But it is the brain. Not "me" so I had to and have to learn what to do when....and recognize triggers...

 

and people....some are jealous thinking I have benefits...one said I do not need to worry about retirement now. As if I had a stroke as a retirement plan. No to mention I retired 20 years too soon. Ok seriously I could fill a note book with lists of insensitive "bossholian" thing people everyone friends family strangers professionals doctors caregivers religious. what is wrong with them? but they have no filter. it hurts surprises stuns belittles isolates enrages me. Then I realize .people. are not me. They do things say things and are things I can never believe. wow. 

When I worked I never was this vulnerable. I was not this marginalized.

So I may be sensitive but these are real insults harmful wounding events. I need to protect myself. no other explanations. 

 

I find ignoring them is best best best because a fool that would think and say that cannot be reasoned with plus lacks empathy and judgment. 

I escape get away put time and distance there.

They are not worth my trouble or inconvenience. I had to learn to physically cover my mouth when I run into someone looking for the last word or their explanations their way. I stop listening just look away detach. Then move on as if they do not exist.

We have soft spots no one gets.

 

And what seems irrational may be meaning full to another survivor. It helps me to post here for support. I go to a support group at my hospital. But here at 2am I can vent. And sometimes reading about others and sharing helps mee too.

 

So no shame or shoulds here. In fact thank you for sharing.

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On 3/28/2018 at 5:41 PM, tmciriani said:

Hi Russ I had a bilateral cerebellar stroke in 2015. People usually don't see my issues physically anymore. I always say "it's all in my head". My way of humor when someone just doesn't get it and maybe they are rude or just flat out mean. I also know what it's like to hear others say "I don't want to hear about the stroke anymore. My dad has even said "don't blame blah bla blah on that stroke that is over with". If only they knew...But they don't. I can tell you my head is &=/++=_d up but it's like psychiatric issues sometimes...they can see a broken bone but not a broken brain sometimes. It used to enrage me and I try as hard as I can now to just turn the other cheek and realize their ignorance and pray they'll never have to be in the same position one day.

 

On 3/28/2018 at 5:41 PM, tmciriani said:

Hi Russ I had a bilateral cerebellar stroke in 2015. People usually don't see my issues physically anymore. I always say "it's all in my head". My way of humor when someone just doesn't get it and maybe they are rude or just flat out mean. I also know what it's like to hear others say "I don't want to hear about the stroke anymore. My dad has even said "don't blame blah bla blah on that stroke that is over with". If only they knew...But they don't. I can tell you my head is &=/++=_d up but it's like psychiatric issues sometimes...they can see a broken bone but not a broken brain sometimes. It used to enrage me and I try as hard as I can now to just turn the other cheek and realize their ignorance and pray they'll never have to be in the same position one day.

My mood is finally in a good place, but even my wife thought I was milking the stroke. It is frustrating. I am reading a book by Mark Manson called the subtle art of not giving a f*ck and it seems to be helping

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48 minutes ago, SassyBetsy said:

     I had brain stem deep middle brain stroke so they told me. I just had another MRI to take a look at my brain.

 

Anyway I read your post and it could be ready my diary a bit. I was told I had vestibular problems which explained what was going on for me. And stroke is a grab bag of stuff and highly personalized. we are similar but not same.

 

I am glad you have good family support. I think it is normal to lash out at those closest to us even though we regret

...first who else is around who will forgive and love unconditionally and try with everything to understand.  That is what hurt me so much. I had no filter. now a tad better. But I was honest to a fault. I shared every thought. I was selfish. It was all about me. Well it had to be then because I was lost and looking just surviving after surviving. I had to protect them from me can I even imagine. 

Was it personality change or was it some awful coping going on that would end. Did anyone know.  I was impatient rude just said my mind. I am still aware I need to be silent sometimes. I have to take time just stop. say nothing. I was comforted reading others had this too. I relaxed. I was still a nice good person. That was important. I knew I was still the Me I knew and wanted to be. only my behavior was Mrs Hyde sometimes. The problem still haunts me. When I get upset I lose my cool. I am feeling over stimulated and well my brain is damaged in that area so I had to heal and relearn basic social skills. No one worries to tell you what is in store. I was not warned. So I felt abnormal. Bad. But it is the brain. Not "me" so I had to and have to learn what to do when....and recognize triggers...

 

and people....some are jealous thinking I have benefits...one said I do not need to worry about retirement now. As if I had a stroke as a retirement plan. No to mention I retired 20 years too soon. Ok seriously I could fill a note book with lists of insensitive "bossholian" thing people everyone friends family strangers professionals doctors caregivers religious. what is wrong with them? but they have no filter. it hurts surprises stuns belittles isolates enrages me. Then I realize .people. are not me. They do things say things and are things I can never believe. wow. 

When I worked I never was this vulnerable. I was not this marginalized.

So I may be sensitive but these are real insults harmful wounding events. I need to protect myself. no other explanations. 

 

I find ignoring them is best best best because a fool that would think and say that cannot be reasoned with plus lacks empathy and judgment. 

I escape get away put time and distance there.

They are not worth my trouble or inconvenience. I had to learn to physically cover my mouth when I run into someone looking for the last word or their explanations their way. I stop listening just look away detach. Then move on as if they do not exist.

We have soft spots no one gets.

 

And what seems irrational may be meaning full to another survivor. It helps me to post here for support. I go to a support group at my hospital. But here at 2am I can vent. And sometimes reading about others and sharing helps mee too.

 

So no shame or shoulds here. In fact thank you for sharing.

You wouldn't believe some of the rudeness I encountered. There were people at the post office, where I work, who thought I was milking the stroke to have less hours!  They were all jealous. My new attitude is, screw them all if they don't understand. It's irrelevant to me. Headphones and good music are what I escape into. I have multiple high-resolution audio players and some Kick-Butt headphones and the world Falls away because I just can't worry about ignorance

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oh I probably need to say I go to a vestibular physical therapist and take meclizine for dizziness. zophran for nausea. I could not drive in a car before. now it is better. but not gone. prob never will heal.

 

i use a patch on 1 eye sometimes and prisms in my glasses for my visual stuff.

 

a tablet or phone is better than desk or laptop. closer is easier. I color with nose in book.

 

so never give up. search for hope.

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1 minute ago, SassyBetsy said:

oh I probably need to say I go to a vestibular physical therapist and take meclizine for dizziness. zophran for nausea. I could not drive in a car before. now it is better. but not gone. prob never will heal.

 

i use a patch on 1 eye sometimes and prisms in my glasses for my visual stuff.

 

a tablet or phone is better than desk or laptop. closer is easier. I color with nose in book.

 

so never give up. search for hope.

I am sorry you have lingering symptoms. I am missing about 6% to 7% of my brain stem and about 35% of my cerebellum. Incredibly, after 2 years of having a swollen head and nausea I finally feel perfectly normal again. I am really grateful, and I hope you continue to heal. My mood was the last thing to stabilize. I finally stop being a complete ass about 3 months ago. Literally anything could set me off.

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oh yes earbuds rule!!!!

 

yep jealous.

anyway my advice is of course milk it. you actually need more than anyone can give. I know from experience. so for wife maybe giving her more literature about stroke stuff may help her know why and it can help you feel O told you So...but do not say so lol

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1 minute ago, SassyBetsy said:

oh yes earbuds rule!!!!

 

yep jealous.

anyway my advice is of course milk it. you actually need more than anyone can give. I know from experience. so for wife maybe giving her more literature about stroke stuff may help her know why and it can help you feel O told you So...but do not say so lol

Each pair of headphones I own actually costs more than the car I drive. Having said that, I got a really sweet deal in a 2004 Malibu for $650. No rush whatsoever!  LOL I have three different high resolution audio players and tons of high-resolution music.

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Music has become my life during the healing process along with my faithful puppy Oliver

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Well actually my life is still my five kids... Four of which are quadruplets

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ok I'm jealous now!

 

Well you work hard so enjoy the best in life that makes you happy.

 

I am glad things are looking bright. You are inspiration.

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I might have to look that book up lol. I say I work on that probably every day...it is totally against my before stroke self to not give a %<[°[]]. I have learned to protect my own self worth and strength in a way...I try very hard to not take those negative responses to heart. I know how very sensitive to them I am and how it can make me second guess myself or feel worthless. I just don't want other people to dictate how I feel about myself so I am quick to be protective. Sometimes I try so hard to explain...I have found every time to be futile. Up go my walls. I am now pretty anti social, quiet, to myself, and do my best to avoid otherwise. It sucks in so many ways...It also sucks that I know I am more sane this way. I have to remind myself often that I don't wish for others to really understand for in reality that would mean they have experienced a stroke too. At least in my world.

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Just now, SassyBetsy said:

ok I'm jealous now!

 

Well you work hard so enjoy the best in life that makes you happy.

 

I am glad things are looking bright. You are inspiration.

My doctors are actually a little surprised that I'm walking as well as I do. I can stand on one leg for several minutes even though I'm missing much of what used to help balance me. I honestly don't understand how it is happening. I will take anything I get as being grateful for it.

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Wow Russ that is so great!!! Neuroplasticity. I hope you enjoy and strive every moment 🙂. You are a piece of hope for many others who will or have ventured here. So glad you are doing so well!!

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9 minutes ago, tmciriani said:

I might have to look that book up lol. I say I work on that probably every day...it is totally against my before stroke self to not give a %<[°[]]. I have learned to protect my own self worth and strength in a way...I try very hard to not take those negative responses to heart. I know how very sensitive to them I am and how it can make me second guess myself or feel worthless. I just don't want other people to dictate how I feel about myself so I am quick to be protective. Sometimes I try so hard to explain...I have found every time to be futile. Up go my walls. I am now pretty anti social, quiet, to myself, and do my best to avoid otherwise. It sucks in so many ways...It also sucks that I know I am more sane this way. I have to remind myself often that I don't wish for others to really understand for in reality that would mean they have experienced a stroke too. At least in my world.

I have nailed antisocial down to a fine science and pristine art. There is nothing better and putting on something loud and obnoxious to block the world out like possibly Megadeth, Slayer, or some other intense form of music from Days Gone By LOL

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The only problem is, now I have a bulging disc in my neck so I'm not able to head bang like I used to. Kind of sad, but hey, we all get older don't we?

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I lost all balance. I could not sit up in bed. But slowly with therapy I went from months in a wheel chair to walkers and I can do cane but my vestibular probs still mean I do not do a cane alone. But I want to run again of course.

 

Yes you are forunate. but that is the thing. some things for some and not others. You are a miracle. And glad you are doin well.

 

Meeee tooo Tracy. 

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3 minutes ago, SassyBetsy said:

I lost all balance. I could not sit up in bed. But slowly with therapy I went from months in a wheel chair to walkers and I can do cane but my vestibular probs still mean I do not do a cane alone. But I want to run again of course.

 

Yes you are forunate. but that is the thing. some things for some and not others. You are a miracle. And glad you are doin well.

 

Meeee tooo Tracy. 

I hope and pray you can run again. Set your mind to it and it just may happen!

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Hey I have a question on vestibular and balance as that's what is wrong with me, I can drive , walk, kinda run but its hard, the problem I have is because im dizzy all the time...................................any advise or suggestions 

Ed

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2 hours ago, edkel1 said:

Hey I have a question on vestibular and balance as that's what is wrong with me, I can drive , walk, kinda run but its hard, the problem I have is because im dizzy all the time...................................any advise or suggestions 

Ed

How long has it been? It took about a year and 4 months for my dizziness to go away. After that I felt balloon headed for another year and nauseous.

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Always ask your neurologist.

I am told mine is brain damage that I may get back over time and therapy or I may always live with. That answer told me to have hope but not overestimate what time and therapy can do.

Now for me I went from constant dizzy just sitting there to now occasional or situational like patterns on floors walls. I can ride in a car and look out a window when before I closed my eyes and felt motion sick.  So now I still have problems that will continue I believe meds and continued therapy helps. I have a vestibular therapist. I also have visual therapy. Anyway I think I am compensating more too.

Yes it is too bad it continues.

So see what I put up with when I walk too. no one knows the dizziness or the balance problems when they do not know me well. later they forget.

 

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