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everyone acts like I never had a stroke now - been since march last year - but I am still damaged. they don't know how it feels living with the new me. Tantrum.gif

I can not even cook or anything as I will burn the house down and it is frustrating. my mom gets cranky with me as she has to take me places

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you know I agree with all of you with different things. Im insecure about a lot. Like all of you. I'm going to admit I'm Vain. I am.. and I worked so hard to get where I was and now I cant so what it was, I feel helpless. though I know I'm not. My sister told me yesterday I'm like a different person. I am. And with the gaps in my memory, that alone makes it horrible. I again just think it's their way of trying to understand us.

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I can relate to all the previous comments on this topic and want to share one of my more momentous experiences.

 

I work as a forensic computer examiner and several months back I was at a meeting with a client and several counsel. As we were discussing my testimony for a trial still several months out, one of the attorneys who was obviously unprepared for encountering my disability asked “are you sure you are going to still be alive then?” This was not said with malice or any intent to offend and could even be construed as poor taste in humor (or just poor people skills). Can you imagine my reaction? I assured her I had every intention of remaining alive. That trial was last week and I am still alive and able to laugh at this lack of sensitivity.

 

 

That *is* rather appalling. Unless she asks that of every expert witness to assess whether to depose them before the actual trial -- possible but unlikely.

 

(I do operational network security; what forensics training I've had stressed when and why to advise my bosses to call in an expert like yourself. It has only happened once so far, and I wasn't needed to testify....)

 

David

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  • 3 weeks later...

hi kancell, what bother me mostly is when peopls spend alot of time staring at me because my arm looks like it doesn"t work and they always seem to stare at me so i am always thinking take a picture tit"s last longer, of coarse i don"t say that but i would really like to

 

Yeah. I have to admit that I've stared at someone's disability only because I couldn't wrap my mind around it. It was my husband's former supervisor who was missing 3 fingers on one hand due to a work accident many years ago. When I first met him, it was like my brain is telling me, "No way, he can't be having two fingers on one hand." Of course he has adapted on his own. He can totally write with those 2 fingers! Nice handwriting, too! And he can hold a glass of drink with those 2 fingers. Those fingers are his thumb and his pinky. Can you believe that?

 

Of, course. Over time, the mind just gets used to it. I think it's the same with other disabilities. I think people will stare just so they can get their heads wrapped around the idea of disability. Once they spend more time with you or the person with a particular disability, they will get used to it.

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I'm glad I'm not the only one who feels like this! I look the same on the outside (except for short hair due to surgeries) so everyone assumes that I'm the same old person!

 

I know nobody who's gone through this yet one friend in particular is ALWAYS telling me that she's 'so happy I'm back to 100%!'

I want to just punch her out!!!! It sometimes makes me think I'm crazy because I DON'T feel like 100% inside at least at all!

 

Some days I just sit & cry (maybe it does sound crazy) because I'm still trying to process everything almost 8months later.... I don't work but I'm on disability, not sure if I want to work, or what kind of work I should do.. I just feel empty or lost inside (?) sometimes..

I brought it up with my dr. & he thinks its post traumatic stress. Anybody else going thru this? I feel like I almost don't have the right to be stressed since I'm alive.... ????

 

But it's somewhat comforting that others get just as annoyed at 'well meaning' but ignorant people!!

 

Post-traumatic stress definitely can happen, particularly if the experience terrifying enough to go through. I have it. I have dreams reliving it in different ways (Weird, I know). Certain things brings those memories back. Some people will have flashbacks, which are an intrusion of memories that is unwanted. Post-traumatic stress disorder can affect your ability to function. There is help available for this. Continue to talk to your doctor about it.

 

You do have every right to be alive. Every life has that right to live. I know it's hard because sometimes you can feel like a burden to others. You actually do make a difference in this world. Your presence enriches peoples' lives in 3D life or online.

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  • 3 months later...

I hate when people say i use my disabilities as a weakness. Sometimes i joke about things i cant do like if someone tells me to do something and they forgot i cant do it, i will make a joke. thats not using it as a weakness. thats just stating i cant do it.

i also hate when my doc tells me its been too long for me to get any better. well if i had my stroke 10 years ago and im not getting any better, why are u still taking my insurance money?

i hate when people joke about things i cant do. i can joke about things i cant do but when others joke about it, its just mean

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  • 2 months later...

I've been very lucky to be surrounded by people who have reacted in good/helpful ways.

 

...Soon aftermy stroke, I ended up in the ER because my left side sensation started coming back and was EXTREMELY painful. Any touch, not touching, set off those nerves and was read as "pain!!!!" by my brain. I was lucky that oxycodone worked for me, but was taken aback when the ER doctor came in and said, "So, you had stroke...that's Amazing!"...I know he meant"wow, you're 24 and had a stroke, how unusual." But the way he said it was SO wrong and I didn't quite know how to react!! I liked it when I saw a hematologist the other day and he just said, "So..this really sucks." THAT seemed like the appropriate thing to say, because yes, I'm 24 and suffered a stroke, and it DOES suck.

 

I'm going to a get-together with friends tonight (planning to go just briefly -- I know I can probably do 30 -45 minutes...maybe an hour, but I've got a cold so I'm extra worn down!!) and I'm concerned because one of the other attendees is pretty socially awkward (she means well, but can be obnoxious) and I've heard through friends who have talked to her recently, that she's comparing her concussion from 2 years ago to my experience with the stroke. I'm not surehow I might react if she starts making comparisons to my face -- I should probably not worry about it, because it could go just fine. Saying hi, answering how I am, etc. BUT the second she says "Yeah, with my concusssion.../post concussion syndrome..." I will not be okay. She fell on ice and hit her head. My body attacked my brain. I've been actively working at recovery and will be actively recovering for several more months. It's a really different situation. Her brain was swollen; parts of my brain have DIED. Fingers crossed that this doesn't happen!!

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  • 1 month later...

What annoys me......I don't look like I had a stroke. My deficits are invisable, unless you are familiar with life after stroke. People in the office have been heard to say "she's too young to have had a stroke. She must be faking it."

 

Oh if only I could "drop the act" when I get tired!!

 

People telling me they understand is just people telling me they want to sympathise with me, even if they can't empathize with me. I can handle that. But the ones who try to minimize the fact or negate it just make me angry.

 

I know it is their inability to deal with the fragility of the human condition, but it still makes me mad. I am a survivor. I had a stroke and I am making the best I can from life after it. I deserve to be treated with respect.

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I dislike that pipl tend to believe that I am okay because it appears that way.And, yes, it is very harsh that pipl who haven't been thru this feel the need to make conceptions and ideas about how I feel or even how I should feel.To be told I should be grateful may seem like the right way to them but if I am having an anxiety attack, loniliness and fear from outta no where, I'm not exactly feeling grateful at the moment. I am feeling scared and anxious and the only thing I'm thinking about is getting rid of those feelings.Even harder is the "well wishers" who came to the hospital and then aren't seen again , not to help or anything close to it. I came across my cards form the hospital and i threw them all away because it hurt too see them.Pipl are unable to realize that sympathy, in this case tends to come across incorrectly and what's needed instead is empathy.Case in point, my nurse told me to file for disability or the like and not to be embarassed to do so.She also told me not to blame myself and that was the extent of any sort of mental therapy for me to date.I wasn't told that I would feel different or have panic attacks or be nervous around pipl I've know for years.I was beyond ill prepared and as such not many pipl, survivors or not know what to do or what to say and that , I think is why it was so hard to find a support group.I have nothing but this site to help me cope. ( For which i am grateful and feeling like i may be ok tomorrow)I am finding that along with not knowing the signs of a stroke almost no one is aware of the after affects/effects ( i can't remember at the time which is the correct word.) I needed some sort if caregiver/assistance , and more than anything someone to help me understand my insurance and important things like that.It's hard to understand things like that any more.I neded help cleaning and just coping with such a major change.Venting to pipl who haven't experienced actually makes things worse.I recall saying that my memory is so different now, so pipl stopped me from driving because " i could become confused" yet no one had spoken to my doctor and no medical prof.stated that I couldn't. The problem wasn't that I became confused, and i never stated such, I couldn't remember how to feel certain emotions. I couldn't remember how to grocery shop , I was told that I am being helpless and also that I should take it easy.I wonder sometimes did the outsiders even bother to read anything beyond recognizing the signs of a stroke and or the list of foods that I can't eat.I am so stunned at how so many pipl think they really know whats going on with me but haven't felt this ir even bothered to find information about it.I believe if I were in my 50's or 60's pipl would understand why I don't understand somethings any more. .No one understands , for me, the aftermath was more difficult than the actual stroke.No one seems to realize that despite my age, what happened still happened, I still had a major change in my brain and no matter what age that happens at it would still affect anyone.I am tired of the ignorance but I recall being on the other side and perhaps not being as informed as I could have been. Still I expect my friends and family to try, at the very least.aren't these the times that friendships and relationships are formed for, to be there and to uplift and help because love compels one to do so/My significant other didn't take it very well, he told pipl I'd lost my spirit but refused to believe that I could actually be sad about it.It took me becoming suicidal before any one would actually come and sit with me, spend time with me , just talk to me.I am not dead, I am different and I need pipl around me to remind me of a world that sometimes eludes me and my memory.but i need those pipl to go slowly.I think its just tooooooooo much for other pipl to handle.Yes, as someone mention earlier I think it scares the (whatever you'd like to add) out of them and it's too close to home to be okay with so they shut us out. my age is and is not a blessing, I was told you have to "fight for yourself". But... what self and fight how, with what? What do i say, what do i do, how do i do it? no answers just fight.or you need to clean your house, umm hello who likes living in a dirty home let along raising kids there.sometimes I refuse to believe that pipl don't or can't see that something is wrong.they choose not to deal with it,And that really, really hurts.my significant other didn't realize that I clung to him so tightly because he was the only person I was comfortable being with and that if I didn't have to ask to not be left alone I may not have feelings of being left behind/alone to the point of panic attacks when he left to go to the store. I wasn't even comfortable with my children , especailly my two year old, I couldn't sleep with her in the house if no one else was around, I was terrified that she would hurt herself somehow while I was asleep.I was told to "be a parent." "I don't remember all of that just yet,help me" and yet to this day he will come and help me financially from time to time, but he cannot help me emotionally.He doesn't understand that a hug sometimes makes the difference in the day for me. It hurts beyond words but I forgave him a long time ago because that's what you do when you love someone.and because that's what i needed to do to be ok myself , waiting for the emotional light bulb to come on for him was hurting too much and I had come to the point where I realized no one else can help me, that literally its all in my head and that i have to fix this. And one day, I will be okay again, just maybe not today. if i don't depend on anyone, i can't be disappointed by anyone either.

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  • 2 months later...

As long as we "look great!", no one gives a damn or understands the severity of it all. I was thrown parties for making a "full recovery" where I felt like a total fraud. People, in general, don't want to believe we've "changed" and therefore will go to great extremes to pretend we have not. It's very frustrating because they fall under the facade of "caring", when in fact they are only thinking of themselves. They also tend to attempt to place blame so they can be assured it "won't happen to them". You can have a stroke caused by a car accident and a blow to the head, but IF you smoked and they don't, they feel immune.

 

 

It's been 7 years since my stroke and I remain APPALLED by the reactions of certain people.tired.gif

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Kancell, I knew when I read your topic, that it was going to set off a flurry of responses, but even though I thought there would be alot, even Iwas surprised at just how many so far...Do you mind if I ad my thoughts?After 4 yrs. in this d*** wheelchair, I fully understand why some people become hermits, because I am amazed ! Many of my deficts are visible, and we try to "carry on as usual" as best we can. Hence, alot of comments and responses to my disabillities. but the one that I HATE,HATE,HATE the most is being called "honey" while being patted on the head! I know that I live in the South,where use of this term is common, but patting my head is hard to explain, even in the South! One of these days.... BEST,Becky1

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  • 4 weeks later...

I'm a caregiver to my husband who stroked last year. Lately I find myself saying "let it go..." alot.

 

My Mom often comments that my husband (who has aphasia) doesn't try to talk. She thinks he doesn't try hard enough,

must be a mother thing, I also get it from mine. when she visits, she expects me to be doing my at home physio 24/7

 

 

But another thing that I try not to let annoy me is perfectly healthy people who complain about trivial things. I try to be compassionate because everyone has their own trials and it isn't fair to expect them to be thankful they're not as bad off as we are, but sometimes it's just too much.

Mark this one 2nd on my top 3. I just look at them tilt my head to the side and say "really?"

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What drives me crazy are people who would minimize my issues because I'm young and look just fine. growl.gif I have symptoms that are invisible, like fatigue, hip pain, etc. They go, "Oh, it can't be that bad." It drives me crazy. Doctors do this, too. This is one of the reasons why I'm changing neurologist. I'm hoping a fresh neurologist will help (just out of medical school). I hope I can get someone to listen to me and take me seriously.

 

 

TOTALLY agree with you! Doctors are almost the worst sometimes! When I tell them I was 19 and had a stroke they stare at me like that isn't possible. And so many people say oh you are fine now, what did you do wrong to have a stroke?? Trust me people. I DID not ask for this!

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  • 2 months later...

I can't tell you how annoyed I got at people's comments in the beginning and at times even now. But I am learning more all the time that Maria is right. People say the dumbest things (Maria didn't say that--I did) out of their own fears and agendas. In most cases I think they intend to help and just don't know how. More infrequently there may be personal agendas involved but no matter the reason I have adopted the response to just smile and nod...and then I change the subject.

 

It helps me to not get so worked up and really, no amount of explanation makes them understand. They can't upset me unless I let them.

 

Jamie

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Have to say sometimes I think it's who you come across and how highly evolved they are.

My husband and I went to a business event for him Saturday night. I was seated next to and talking to a gentleman who didn't know I had a stroke. When the main course came my husband discreetly switched our plates, cut my food, and switched them back as he always does. As we were having dessert the gentleman led into a conversation with me about a deli he owns. He casually mention how sweet and attentive my husband was in cutting my food. While still talking about the deli he mentioned a woman customer whose food he cuts because she had a stroke. i knew he had tactfully given me the opportunity to say I'd had a stroke. He didn't feign acting shocked when I said I had one, but rather asked me questions about driving with one arm.

 

I doubt anyone at the table ever notices my husband cuts my food. Most people are too self absorbed and caught up in themselves to pay attention. Just do what you do and try not to be too self conscious.

 

(((((Maria)))))))

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What drives me crazy are people who would minimize my issues because I'm young and look just fine. growl.gif I have symptoms that are invisible, like fatigue, hip pain, etc. They go, "Oh, it can't be that bad." It drives me crazy. Doctors do this, too. This is one of the reasons why I'm changing neurologist. I'm hoping a fresh neurologist will help (just out of medical school). I hope I can get someone to listen to me and take me seriously.

 

 

TOTALLY agree with you! Doctors are almost the worst sometimes! When I tell them I was 19 and had a stroke they stare at me like that isn't possible. And so many people say oh you are fine now, what did you do wrong to have a stroke?? Trust me people. I DID not ask for this!

 

 

 

 

Ditto to that!!!

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What drives me crazy are people who would minimize my issues because I'm young and look just fine. :growl: I have symptoms that are invisible, like fatigue, hip pain, etc. They go, "Oh, it can't be that bad." It drives me crazy. Doctors do this, too. This is one of the reasons why I'm changing neurologist. I'm hoping a fresh neurologist will help (just out of medical school). I hope I can get someone to listen to me and take me seriously.

 

I get that all the time too and it frustrates me lots.

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What drives me crazy are people who would minimize my issues because I'm young and look just fine. growl.gif I have symptoms that are invisible, like fatigue, hip pain, etc. They go, "Oh, it can't be that bad." It drives me crazy. Doctors do this, too. This is one of the reasons why I'm changing neurologist. I'm hoping a fresh neurologist will help (just out of medical school). I hope I can get someone to listen to me and take me seriously.

 

 

TOTALLY agree with you! Doctors are almost the worst sometimes! When I tell them I was 19 and had a stroke they stare at me like that isn't possible. And so many people say oh you are fine now, what did you do wrong to have a stroke?? Trust me people. I DID not ask for this!

 

 

 

I'm not so sure neurologists no matter what their expertise in the field are trying to be difficult, cold, or just giving us a hard time. I believe they would empathize if they could, but no amount of studying and working with brain injured stroke patients can give true insight to what it is like to be one. They are no different than anyone else in that can not relate because they have not lived it.

I remember how long it took for me for me to wrap my own head around the concept that I couldn't move my own arm. Trying to get someone to understand the magnitude of what that feels like when you can barely grasp yourself has nothing to do with level of intellect or expertise. You have to have lived with the struggle of wrapping your head around it yourself to get it.

 

This is why it's so important we're here for one another.

 

 

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I found that I learned something about myself and the things that made it hard for me to accept by paying attention to what upset me.

 

As an illustration: Kelli, you aren't fooling me! You're really a pot-belly trucker named Mack!

 

Other than thinking I have totally lost my mind, you won't give that another thought because YOU know better. I imagine, like me, there is some grain within each of the things that are said to upset us that, even if it isn't a conscious thought, we struggle with too.

 

Like Maria, I couldn't accept that with enough determination and resourcefulness, there were still things I couldn't do. So when people told me, 'all you have to do is X" it made my own self doubt stand up too. Knowing this was happening gave me a place to start working on my own acceptance.

 

Jamie

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