Guest DianneD Posted September 17, 2008 Share Posted September 17, 2008 I don't deal with sudden changes well. If someone changes the playing field, I feel toppled over, and the righting of myself has an element of struggling to the surface from underneath water. It's SO hard to explain to anyone ......I've tried and tried to explain it to other people, and while some of them say they understand, I am not sure they do. When I get scattered inside my head and I feel upside down, it's as if I am fighting to come to the surface from a depth in water, and I can't think of any solutions. It is a disorientation of massive proportions. That's why the reaction is so huge too. I feel as if I am drowning, like my air is being cut off. The one thing that continues to be a concern for me is when my brain goes away, when I can't get my brain to work. When there is something that needs to be done and I can't understand it. That is so scary for me, because it feels like I'm dead between my ears. I can't describe the depth of fear that arises when that happens, because I KNOW I don't know......it's not like suddenly it's just gone away and I'm not aware of it. I KNOW there's nothing there. And when I have to figure out investment papers, or legal issues for my folks, and there's nothing there with which to do it, it scares me so badly that I have actually hit my head over and over, trying to make it work. (which, for the record, only gives me a headache.........it doesn't make my brain work one iota better.) Is this just me? Or does anyone else's brain go away like this? Dianne Link to comment Share on other sites More sharing options...
jjohnson Posted September 17, 2008 Share Posted September 17, 2008 Dear Dianne: I wish I was there.... I would give you a big hug :friends: I am a Brain Stem Stroke Survivor and I have major things that go away from me as well. PreStroke, I am very articulate, did financial matters, was a real together gal. Now, my dear Hubby has had to take over all legal issues, financial matters, etc. Was I upset? Sure, I was. My life changed in a way I would never have thought my life would have gone. Do I like it. HECK NO... bottom line is Wayne is the choice that had to be made. He has to do all the banking, etc. I also have problems when I try to say things or write things down, they are backwards, if I am extra tired or stressed, watch out Loretta!!!! I know it is a big change for those who have brain injury from stroke. I have learned that I have to be kind to myself, learn to give myself a chance... I am so hard on myself, I am my worst critic. Would I treat a stranger the same way? NO ... so why me? I feel like I am in a blur.. foggy at times. I have had to learn to love myself a lil extra on tough days and not get to tired or stressed. Please don't hit your head anymore, you will only cause additional trama or damage to your brain. Our Brains are very fragile. Just turn it over to GOD he will carry you through. I pray and mediate and try to sit outside to listen to the birds sing their lil melodies or listen to soothing music. On a good day, I go a half mile down to the Bay and just sit in my wheelchair and watch the awesome water. That seems to be my best medicine. Dianne just know you can always come here and speak with your friends, we care about you and only want the best for you. I know, for me, sometimes I get frustrated and become the gal from the past. that is only normal. But, this is where I am for today and I must make the best of it. I am a Miracle and God isn't finished with me yet. God Bless you and I will keep you in my prayers. God Bless, Hugs, Jan BELIEVE IN MIRACLES AND SOAR Link to comment Share on other sites More sharing options...
dstraugh Posted September 17, 2008 Share Posted September 17, 2008 Dianne, Our brains were damaged from stroke - something we definitely did not ask for. I wouldn't wish this on my worse enemy. As a single Mom, I've always handled all the financial affairs and bill paying. Post stroke I thank God above that I'm still able to do so as my daughter has enough going on with school that I don't want to add another burden to her. Plus she's too young yet and doesn't need the added stress. For me, I eliminate all distractions while working on the bills and double check my work - sometimes triple check as need be. To help my damaged brain, I strive to keep everything organized and in one area. If my brain starts to falter and even go away, I take a break, relax and go back to it when I'm rested. Perhaps you're not taking any brain time-outs to allow for a regrouping. Not only do we move slower now physically but mentally as well. Be gentle with yourself and try not to beat yourself up. ((hugs))) Link to comment Share on other sites More sharing options...
fking Posted September 17, 2008 Share Posted September 17, 2008 It's ALL normal when the brain suffers an attack and lose communication with the side of the body it is designed to control. If you are among the many survivors with paralysis on one side you are not alone...It isn't just YOU... it's ALL of us! Link to comment Share on other sites More sharing options...
Farrell Posted September 18, 2008 Share Posted September 18, 2008 Diane ~ You are not alone with these inward feelings...It's a lonely, confusing place to be @ times. But know we are here for you in your distress signal with a life boat. Can you look into a CPA or someone like that to help with your parents legal papers? Life is not a bowl of cherries @ times but if you can give it to God, who does not give more than we can bare in this life. On top of everything you have your parents to worry about. Ask your sister to help if she can. (just a thought) I do not take changes well either. My prayers are with you, we are all in this together...You are not alone my friend! Hang in there Diane....Better days are awaiting :friends: Your friend ~ Nancy Link to comment Share on other sites More sharing options...
Guest DianneD Posted September 18, 2008 Share Posted September 18, 2008 Thank you to everyone for your loving and understanding responses. When a physician friend suggested that I go rest when I feel that way, I told her that REST never even crosses my radar screen, and ESPECIALLY not when my brain goes away. So we joked about having REST tatooed on the palm of my hand so I would see it more often. But as a result of that conversation and the kind responses from the people who wrote me back, I have made up signs and posted them all over the parts of the house where I am most often. Maybe THAT will help as a reminder. My sister is on tour and as such cannot come help, though she talks to me on the phone often. And today may be the day when I have to make the decision to bring my folks home again, and hire in-house caregivers to care for them, because I can no longer care for them. The care homes they have been in, even though rated HIGH in the industry, have been abusive in the past and the one where they are now allows my father (who cannot move himself AT ALL or feed himself) to lie ~ without moving him or repositioning him ~ for 10 hours in a recliner with a broken spring in the seat, because they don't want to bother with moving him. Do you KNOW how painful that is? And he can't articulate his pain. But anyone could see it in his face if they bothered to look. I see it every time I go there, and demand that he be put into bed. So, exponentially, my stress level is about to jump in one sense (with them coming home) but it is going to be SO much less in another sense (because I can monitor the level of care they get and not worry about them constantly). The biggest difference this time is I cannot do any of the caregiving. Not ANY of it. That will be SO hard. But I can love them and be with them, and read to them and laugh with them. That counts for a lot. ~ Dianne Link to comment Share on other sites More sharing options...
dstraugh Posted September 18, 2008 Share Posted September 18, 2008 Dianne, As you go through all of the preparations of bringing your folks home (only you know what is best) be sure to get rest. Are you going to use an agency to get the caregivers or are you hiring on your own. Way the odds of that (pros and cons) Perhaps your physician friend who knows you so well will have insight to offer. We're here for you. Link to comment Share on other sites More sharing options...
rdittman Posted September 18, 2008 Share Posted September 18, 2008 I was just discussing this very thing in chat yesterday. My brain has locked up several times over the past few months, generally when I'm tired. I call it confusion, but it's almost like amnesia. And yes, it is scary. I see my doctor soon, and will be discussing this with him. I might suggest you do the same, and see what kinds of answers he/she gives. Link to comment Share on other sites More sharing options...
Guest DianneD Posted September 19, 2008 Share Posted September 19, 2008 thank you for your concern. we went to have the meeting with the owners of the care home where my parents are now and were told that my father is beyond their level of care (which we suspected) and so we told them we will bring them home in 10 days. haven't told the folks yet, as I need to get carpets cleaned, furniture moved, and caregivers hired before we can bring them home. will probably tell them Monday. my father isn't looking like he'll survive the weekend, so it may be a moot point by the time I can hire the caregivers. Donna, I am using agencies, because I need to get licensed and bonded and background-checked caregivers in place, and I can't do the Social Security work and taxes on private pay caregivers. my sister called me today and said the same things you did.........schedule rest EVERY day, even a couple times a day, and make it sacrosanct, that I cannot be disturbed during this time, because the stress of having them home again will be greater than I imagine. but there truly is no other recourse..... thanks for your support. Dianne Link to comment Share on other sites More sharing options...
memory Posted September 21, 2008 Share Posted September 21, 2008 Diane - I feel what you are going through. I used to be an Emergency Room nurse and numbers and fast questions and remembering was vital to my job. All that is lost to me now. I have taken memory loss classes to help for those awkward moments when someone comes up to me and asks me a question and my brain goes on 'freeze'. These classes help me to utulize things such as a daily planner and post it notes to also help remember for me during those times I am not remembering on my own.Those type of classes can be made through your doctor - it's part of physical and occupational therapy. I also went a step beyond and went to the Center for the Physically Challenged and took classes for my memory there. I sure hope some of this can be of some help. I can always be found if you need a friend. And ironically, yes my name is Memory-lol. Big hugs! Memory Link to comment Share on other sites More sharing options...
Vivid-Dawn Posted September 28, 2008 Share Posted September 28, 2008 I call them "brain farts" LOL Mine are more annoying, than scary. The other day, I was talking with some neighbors, and I said something about another neighbor down the road...and for the life of me, I couldn't remember his name - despite knowing him for 30 years! I couldn't even think of the first letter of either his first or last name! So I spent a good 5 minutes trying to relate what house he was in, what side of the street, etc. Finally one of the ladies said his name as a guess, and I said "Yeah, that's it!" Boy, I felt stoopid LOL I try to take a nap every afternoon. I just can't go a whole day straight, anymore. Used to go 16 hours at a time, now I can barely do 12 at once on a really good day. It alternates between physically tired, and mentally worn out. So I divide them up into "tired" and "sleepy". Even if I don't actually sleep during my "nap", I still stay in bed and just take at least an hour to rest and think of whatever I want that's not stressful (usually I come up with story ideas, not that I ever get around to writing them out! LOL). I try to be up and about again by 4 P.M. at the latest, because if I rest past that, then I can't seem to sleep during the night. But basically, my nap time is anywhere between noon and 4, depending on my schedule and appointments that day. Link to comment Share on other sites More sharing options...
myhome Posted September 28, 2008 Share Posted September 28, 2008 I don't deal with sudden changes well. If someone changes the playing field, I feel toppled over, and the righting of myself has an element of struggling to the surface from underneath water. It's SO hard to explain to anyone ......I've tried and tried to explain it to other people, and while some of them say they understand, I am not sure they do. When I get scattered inside my head and I feel upside down, it's as if I am fighting to come to the surface from a depth in water, and I can't think of any solutions. It is a disorientation of massive proportions. That's why the reaction is so huge too. I feel as if I am drowning, like my air is being cut off. The one thing that continues to be a concern for me is when my brain goes away, when I can't get my brain to work. When there is something that needs to be done and I can't understand it. That is so scary for me, because it feels like I'm dead between my ears. I can't describe the depth of fear that arises when that happens, because I KNOW I don't know......it's not like suddenly it's just gone away and I'm not aware of it. I KNOW there's nothing there. And when I have to figure out investment papers, or legal issues for my folks, and there's nothing there with which to do it, it scares me so badly that I have actually hit my head over and over, trying to make it work. (which, for the record, only gives me a headache.........it doesn't make my brain work one iota better.) Is this just me? Or does anyone else's brain go away like this? Dianne No it's not just you. I had that for alot of the first year post stroke. It started to disappear in the second year, and now I'm into my third year and it's basically gone ( maybe I'm just lucky). Please don't don't give yourself headaches by whacking yourself, :BashHead: it solves nothing, I hurt just thinking about it Link to comment Share on other sites More sharing options...
Sheri Posted October 2, 2008 Share Posted October 2, 2008 Dianne, I am not stroke survivor ~ my dad had a mini stroke, in fact we are finding out he has been having alot of them. He was feeling exactly like you ~ He was having alot of trouble trying to do his taxes ~ just couldn't figure it out and in the past he has always been able to do his taxes. He is also having trouble understanding his medicines and when to take them. The confusion is really bothering him. We are having alot of trouble trying to regulate his blood pressure ~ anything or anyone who upsets him affects it. I'm wondering if his blood pressure will ever be under control enough to handle major stress. Can anyone anser this? Thank you Link to comment Share on other sites More sharing options...
PhilW Posted October 2, 2008 Share Posted October 2, 2008 What a classic " Brain farts" laughed myself silly. Anyway back to it , yes I thought about that myself and yes I ve had that happen to me occasionally when I ve known someone that long and just cant get it out straight away , but the one that keeps me wondering even though Im deaf , sometimes, someone would be talking to me and Im listening, then for some stupid reason Im in a trance ,then I would miss the whole thing ,they would get cross for me not listening. When before stroke I alway concentrated and lip-read them, quite bizzare to me now that think about this issue. Link to comment Share on other sites More sharing options...
Farrell Posted October 12, 2008 Share Posted October 12, 2008 Hi Dianne ~ Have you come to the surface for a breath since your parents are now living with you? I hope & pray all is going well for & with you. Take care my friend.....I've been thingking of you. Nancy :juggle May I add to this note Diane, as far as the legal papers, ect. can you not get help from a legal lawyer from the senior center(we have one come up to our area once a month for free help) It seems to me all those legal papers along with caring for your parents now that their in your home 24/7 even though you have someone come into your home to care for them most of the day, my brain would be going bonkers. You care so much for your parents, they are blessed to have a faithful daughter as you. Did you ever get something to help your Dad sleep thru the night? God Bless you Diane! Link to comment Share on other sites More sharing options...
merichsen Posted October 12, 2008 Share Posted October 12, 2008 Dianne, It is not just you. We are all looking for our brains. As time goes on and you recover, you gradually find pieces of it and put it back together. At first you expect to do things as you always had and it is a rude awakening when you cannot. As you relearn to do them in a way your brain can now handle you will find you are still capable. It just takes time and patience to learn to do things differently. Becoming locked up is just your being overwhelmed by giving your brain more at one time than it can process right now. It happens to all of us. Take one thing at a time and keep it simple. Your brain will gradually let you know when it can handle more. Link to comment Share on other sites More sharing options...
kanderson Posted October 12, 2008 Share Posted October 12, 2008 hi dianne, its good to hear from you again. i have been thinking of you lately wondering how your folks are doing, so they are coming home, i think right now that is best for all concerned as long as you get good competent help. as others have said, our brains have suffered a traumatic injury. i too have times like you explained. all i can do is let the moment pass, then i am ok but i hate feeling like that too, i can't fix the problem so i have to accept it and do they best i can. rest is very important at those times. i do pray for you and your parents to have much better days ahead and happier ones too. take care of yourself when parents come home and keep us updated on how things are going. bless you for all you do for your parents and yourself. Link to comment Share on other sites More sharing options...
Le Hermite Posted October 12, 2008 Share Posted October 12, 2008 Hi Dianne...... I'm in my 10th month post stroke... Let me add my voice to the "me toos".... Sometimes it happens in the middle of a conversation, especially if it's technical in nature... All of a sudden....whoosh!....Color it gone...Goes blank... Usually can get back on track if other folks give me some prompts... Never happened BS (Before Stroke)... Here is definitely the right place to be... The responses you get from folks may not always be exactly what you go through, but whenever weird things happen to you, you're probably going to find folks who have had something similar happen to them.... And it's a blessing when you realize it's not just you going crazy... That there lotsa other folks kinda going through pretty much the same thing.....to the point that weird stuff is actually normal....<G>.... Hang in there... Link to comment Share on other sites More sharing options...
rabsparks Posted October 25, 2008 Share Posted October 25, 2008 Hi Dianne: I had my two strokes in January 2006. When I got released there were things I couldn't do like: drive, write checks, program my VCRs, understand a lot of what I was told, follow directions, type, send out email, and do many other things that I could have done pre-stroke. It has taken me all of almost two years to regain the above mentioned functions. And that time has been a real struggle. And absolutely no one knows how hard I fought to regain the things I had taken for granted pre-stroke. I think that we each fight our fights more or less silently, accepting tiny wins without much fanfare. At least that's the way that I did, never happy with my progress no matter what, always unhappy with what I accomplished and displeased with the things I didn't accomplish. My wife, Jenn, a psych therapist to-be, suggests that I had better decide what I am going to do when I can't make things like they were pre-stroke. But so far, things have progressed, may be not as fast as I would like, but progressed nonetheless. So right now, I am not prepared to accept my life until I max out. I actually don't know what I would do if I reached my max out point. I guess it would depend on how satisfied I was with my overall progress. From what you said, I don't think that you've gone as far as you can go with your rehab. Give it a chance. Things don't revert back in 6 months, one year, or even 18 months. Believe me: I know. rick Link to comment Share on other sites More sharing options...
mcdube Posted October 26, 2008 Share Posted October 26, 2008 I am a 24 years survivor and my brain still freezes up. Example: I am driving very familiar roads in my neighborhood, going on an errand, all of a sudden I don't recognize nothing, I don't know where I am but this just lasts a few seconds but it scares the bejesus out of me enough to cut my breath and then yes I recognize everything. I am not lost,I'm 2 streets away from my place,ouf! My stroke was so long ago I never associated this with post stroke, and it scares me so much every time. Thank goodness it doesn't last long and its not every day, I have noticed its when I'm in a hurry or stressed out or tired. Link to comment Share on other sites More sharing options...
chloeb Posted October 26, 2008 Share Posted October 26, 2008 Hi Dianne, It's not just you. I feel that way too. I have always had trouble with change going on around me. When I was very young I was put into allofthe advance classes at schol after the stoke. I was at level in most subject and in math below. It can be a hard stuggle, but don't give up. There are people around that will help you ifyou need it. I will keep you in my thoughts and prayers. Take care ofyourself Connie Link to comment Share on other sites More sharing options...
merichsen Posted October 27, 2008 Share Posted October 27, 2008 There is a video called "How Difficult Can This Be?". It helps explain why it makes it so much more difficult for children with learning disabilities to be able to function when their abilities are further strained by frustrating, anxiety, and tension. Very much like what happens to us. Showing the video to kids helps them understand a bit more. I tried to find a down-loadable version, but could not. The best I could come up with http://www.shoppbs.org/sm-pbs-richard-lavoie-how-difficult-can-this-be-fat-city-a--pi-1406890.html Your local library or school library should have a copy of it. It's really very insightful. Link to comment Share on other sites More sharing options...
prayerlife4jc Posted November 11, 2008 Share Posted November 11, 2008 Diane I am new here am one wk n one day after stroke and I notice my brain goes on vacation did it yest at wrk b4 went to dr + had panic attack my first felt like I was swimming inside my head so far have broken several things in house trying to carry with left arm sometimes I do ok sometimes not I feel like when my brain goes away I am in a fog with a fishing line trying to ctach a hold of it. I am blessed that mine was not as bad as most know that you are in my prayers :friends: Link to comment Share on other sites More sharing options...
bstockman Posted November 11, 2008 Share Posted November 11, 2008 It has become somewhat better over time. I do have days though... when things may have been written in a foreign language. Even to go to sleep at night, I felt like my brain was "spinning" 90 miles an hr.. thoughts just whirling. I have practiced with computer games. I used to be a very good speller. Know I often find mistakes. words that sound alike, wrong tense.. or often have to substitute a word for the one I actually wanted. I am also dyslexic now. so any numbers get looked at 3 times. I was given Xanax by the Dr. I use 1/2 of one once in awhile and I take one about an hr before bedtime. I was also changed to Cymbalta an antidepressant, but it also helps with some of the nerve pain, and it does readjust your body clock. I used to sleep about 2 hrs and wake up, etc. Now I sleep through the night.. with the ... getting up to use the bathroom.. but go right back to sleep. Each person is "different" and some medications will be good for one person and horrible for another. I am just Thankful my Dr. listened and we found a combination to help. Getting "GOOD" rest is very helpful for the mind and body to function. Bonnie Link to comment Share on other sites More sharing options...
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