Tell me, when you get into arguments, friendly or not, whether it be S/O's, family member's, friends, do they not take you as seriously as they did before your diagnosis or surgery? Do they say things like, "You're not thinking clearly because of your condition" or to the tune of it? If so, please scream along with me!!!!! Because I am having the AVM XXXXX moment right now. I'm so tired of this. Like, no, I am not all of a sudden wrong all of the time because I have an AVM and had surgery. I had the AVM all of my natural life. And I was right before ALOT of the time, right? Right :)
Thanks for the vent my friends, lol. At least you all know I'm not crazy for this post.
I’m screaming now. My family is brutal to me. The funny thing is I am usually right yet I get no credit for it. When I got out of the hospital, My husband was arguing about whether I went back to the intensive care room. It was only when my dad confirmed it, he believed me. I was the one in the room all day. Just because I couldn’t speak doesn’t mean I wasn’t aware. They still razz me on a daily basis. My IQ didn’t drop, it’s just my speech and processing time is slower.
I think it must be a very common thing...Because people think because I had an AVM, I'm treated so differently than before. I've gotten to the point where I just ignore discussions with them because they don't think I'm capable of knowing how I feel.
I'll scream along with you Zilly. I have an aunt in particular that seems to feel the need to grab my arm when I'm walking and speak slowly and softly. I'm not a child and I'm clearly not stupid! It's not just her though. A lot of my friends (not close friends) seem to think I'm somehow not as smart as I used to be. Yes, I have brain damage but hell no I'm not an idiot! Keep proving them all wrong.
My mother and sister I have given up on. They are just so hypocritical. I swear almost every morning I am having an argument with my husband over stupid things because "I am not thinking clearly" or "my brain is all messed up". I mean, there has been days where I have just given up speaking altogether, no matter what I say or do, I was just always wrong or never taken seriously. I don't know what to do. He was the most supportive, now it seems as if I'm losing him too.
It's not the arguments per se, it's just when I start them or feel that I might need to raise my voice or whatever. It's more like my points of view are invalid because "Kristi had a stroke, let's remember her thoughts are wild right now." It's like they think my avm speaks for me when I don't even have it anymore. And when I say "they" I mean my husband because, well, he's the only one that not only stuck around, but the only one I wanted around (besides my kids).
Hi Zilly74 - they don't say that - maybe because there's this whole passive-aggressive thing going on - either that or those could be considered "fighting words" - in which I would have no intention of backing down =)
But the whole no credibility bc you have a brain injury attitude - I totally get. If I have like a video recorder or tape recorder or cell on me, I'll tape whatever it is so others will believe me - sad that I have to do that, but it works.
I hate to agree with you, but I must. Since the surgery, I have dropped in their eyes. I tried to talk to my shrink about it. He said I should concentrate on my problems and let others take care of their own. Like I should be careful not to act wierd and get them to deal with me differently. He also said I should accept that I have changed and they can't handle it as well as I can. While I don't really like what he said, it does help me find a way to handle these people. But, they still piss me off.
It is just really starting to take over everything in my life. Like last night. Now, my husband never sleeps with the blankets, but he'll pull them over him if the room gets too cold from the AC. I always do, I'm always cold, I have a severe cold intolerance. Last night he took the blankets off of me 4 different times to the point where I said to myself, "Ok, take them, I'll get up, go the bathroom, get back into bed and get under the sheets, he can have the comforter". But it never got to that, I ended up spilling my glass of water before turning the light on to turn back the sheet and then I had to clean that up before going back to bed,(mind you, it spilled behind my nightstand, so I had to pull that all away from the wall at 5am) I woke him up in the process...anyway, the next morning talking about it - he wondered why I was so upset at 5am in the morning). I began to tell him how he tried to pull the blankets off of me and it never made it past that point. He argued and argued and argued about he couldn't possibly have pulled the blankets off me, he never sleeps with a blanket unless he wants to. I'm so messed up from my surgery I'm imagining things now...Like WHAT?????? REALLY? I've like had it. I really have. This was like an Oh my Gosh, look what happened to me overnight kind of moment, not a time to argue over who was right or wrong over the blanket. Like really. My family is going way too far with this. It's like they are destined for me to be stupid or something, like it's been their plan all along to prove I'm the dumb on in the family, or the one who could never amount to anything? What is it? From my mother down to my husband now? What the hell? I can't take it anymore. It's stupid things like this that really piss me off. But he can trust me with the bookkeeping for our business? OK!!!!
Sigh. I'm getting the old, "You're not thinking clearly" "you need to trust me" sayings all the time now. I mean, I only had gamma knife and I had one grand mal seizure. It isn't like I lost the ability to think for myself. I always had a bad temper and I can function on my own. Ever since I had this seizure the people around me have been treating me like I should either be in a mental institution or preschool. Could it be that I'm not really thinking clearly? I mean, should I really step back and say, "Wait, am I really this dumb and could I really be wrong all the time?" Are my migraines and visual disturbances causing me to be stupid, mean, and causing arguments w/my relationships? Or are these people really just being this ignorant to me? What is it anymore? I feel like they are driving me mental!!!! Or as they call it, I have become impossible to deal with.
Screaming along with you, Zilly! You're definitely not crazy, or the only one who people don't take serously when living with an AVM. Not a lot of people take me seriously after my AVM including some members of my family. I experience this every day at work: I come up with an idea for a project that my client is looking into, and then my my coworkers will speak over me to let me know that it's a bad idea or the idea is a wrong idea...the funny thing is, my worker came up with the same idea that my other coworker had shot down! For a while I just kept my mouth shut, because I assumed that I was wrong all of the time. Slowly, I'm starting to speak up and stand up for myself...but without being rude...if I'm correct about the situation of course.
My roommates (who I love as sisters) tend to tell me that I'm wrong some of the time, but I keep quiet so to avoid an argument, but I am working on when to speak up and stand my ground on thing (as long as I'm right about them).
Well...at least my college professors take me seriously, and believe in me...of course, they don't know about my condition.
I am right there with you! I finally had to get mad at my husband and family members and tell them I am back no more bossing me around! Also they forget more than I do. Now my husband says she is the one who had the stroke and he is the one who forgets! I actually had my father tell me something was in my head!!!( my toilet was making noise due to a leak and he is a plumber) my husband had to tell him no its not etc I was told him oh that is really nice to say to someone who has had a stroke and brain surgery....
We just have to be strong and hope nothing happens to them. I really feel that we are so much stronger and compassionate People keep saying wow how did you get through it..I say well I did not see the pause button or stop button you just do it.
Angela
People talk slowly to me all the time even when i am doing ok. OR they ask to speak to my wife if i am on the phone. What really gets me is when i am describing what is wrong with me to someone i meet for the first time and they say that "oh that is ok", "we are all a little brain dead at times".
Not the same.. You forgetting things because you are getting old is not the same as having brain damage. I forget things and know i shouldn't. That is upsetting not normal. You can't talk because you are tired. I can't talk because part of my brain is dead. Etc etc etc.....
Sounds good to me Eileen. I don't know really if there is a correct response. Many people with illness are going through what i call "very Quiet terror". They seem okish but they are not. People are not going to understand as the ill person probably hasn't told them how ill they are. I remember someone once saying to me "you are very brave" made me feel as tho they understood. Different for everyone but that is what i would more than likely say in the future or say nothing?
I'm there with you, Zilly. Not as badly as some others, but I definitely feel it with my daughter especially. She likes to pretend that she doesn't say or do certain things and then say that "Mom is crazy!" One might expect this behavior from a teenager, but she's 23! My 19 year old son is not like that.
I agree that most days I look okay but I feel otherwise. When I went back to work I got the feeling that they thought I was milking my time off....They all said wow you look great. I lost about 20 pounds because I could not eat since I was having bad reactions to my meds....I said oh its the stroke vomit diet I would not advise it. Today someone said You look 10 years younger...yesterday the same person said why are you always smiling...I said because I almost died and I am alive.... Unless you have been through it I dont think any words can describe enough to someone unless they have been taking care of you. I think when someone shares their health story people should say something like I am so sorry for all you went through let me know if there is anything I can do and so glad you doing better. I dont ever expect to be back to my old self and have accepted it. It has all made me appreciate my life family and friends and I dont make time for people that I dont want to be around.
Angela
I don't know what is going on anymore. Maybe my husband is right. Maybe the gamma radiation did %^&* me up and I am going crazy and I am not thinking clearly. Maybe I am just a crazy #$%^& after all? Maybe the surgery is driving me plain psychotic after all and everything I do and say is wrong, my fault and completely out of control or nuts or off the wall. Maybe I just no longer fit into society or relationships anymore? I just don't get it. I don't get how EVERYTHING is all of a sudden my fault. How my world just all of a sudden fallen apart within a matter of 6 months - but according to the doctors, the surgery is a success...II don't know where to begin to fix our relationship, I don't even know where or when it broke.All I know is that I'm a lunatic anymore, but yet, it doesn't seem like it's all my fault, you know?
I feel for you.I have been going through this with my husband too and my daughter.Today is 3months since ive been in the hospital,finally was told I have an avm,I have been in and out of hospitalfor seizures,TIA and many other problems.So when my husband tells me im nuts,ive tried to go in the looney part of the hospital,and they wouldnt admit me,they said I dont belong there.I even said to the doctor,you didnt find any screws lose,he laughed.LOL.I had so many test done on my brain,Im guessing im not nuts and either are you.Wishing the best for you.
My family history with Stroke isn't good, we've lost two family members to it. I think my Father resents me because I survived and doing so well post stroke. My memory is so so I get confused easily. I try to talk with him daily, he just walks past me like I am a ghost. I've been a loner most of my pathetic life, but the loss of respect from him has been very hard to cope with.
It's the medicine or lack there of. I'm on Keppra twice daily, the mood swings are not control able. The radiation is painful at times, but usually doesn't have emotional problems so far. Your Husband might need family consoling.