I don't know who else goes through this but it seems like every holiday or get together with my family I have to deal with this.
I'm not one to complain to my family about anything so my idea of getting thru my surgery and being able to return to work ...to me sounded like I was doing great. Well, my family seems to take that as I am 100% completely healed and have no issues that I'm dealing with.
I had Thanksgiving dinner at my home yesterday and my mom and sister came by while I was still preparing about 4 other things. I was distracted...which happens a lot now and gravy boiled over....the timer on the stove went off and they were asking me where to put food that they had brought. I felt my brain start to shut down at that point. I asked them to wait a minute...stood there trying to figure out what the timer was going off for...was it the oven the stove...I couldn't remember....I stopped and took a deep breath and waited for my thoughts to catch up in my head.
Now, this to me is normal and I know I need to slow down and not do too many things at once but explaining this to my family is a different story. I don't know if they can't accept me for who I am now or they refuse to believe that I am not exactly the same person but it makes me sad.
I am truly thankful that I've healed as much as I did but I still have trouble sometimes explaining myself, finding the correct word to use, even if it's a simple word, or processing something in my head or remembering something that happened a while ago. I don't know how to explain this to my family, they either refuse to accept or just don't believe it.
I know this is a long story but has anyone else felt like this?
I am sorry that you had to deal with this on Thanksgiving. I have found when you are a strong person and you have a positive attitude people assume you are your same old self. How could you be? We have had our skulls popped open and someone in there moving our brains around, and then leaving behind metal objects. No matter how careful, they leave some kind of footprint, whether physical or emotional. I have had two very close friends say to me recently I thought they fixed that and it was behind you when talking about a couple of issues I am having.
Please know you are not alone and we understand. Maybe we need to talk more about it with our family and friends so they can better understand where we are now.
hi Valerie! sorry they don't get it, have you read this? maybe print it out so family and friends can read it?http://www.bafsupport.org/profiles/blogs/this-one-is-for-us , I am the same but 4 yrs post and I have improved tons but I had a SAH rupture. My take on it is you are early in healing and things will improve and don't be too hard on yourself -even non anny folks have trouble multi tasking. Will keep you in thoughts and prayers for great improvement~~
Thanks Laura and Ron, I really appreciate your responses. I'm going to post that BAF blog on my facebook page for my family and friends to read. It really hits the nail on the head. I know I'm still healing but I don't think I'll ever be "exactly" how I was before my surgery and I'm fine with that. I love my new self and I'm not looking for pity from my family..just understanding.
It's been 1 1/2 years since my rupture, and I always thought that I would return to the EXACT person I was before. I am very close, but I am different now.
The main thing I notice is fatigue happens faster, and there is no way for me to stop that. I do not take naps like my doctors recommend, but I try to take more breaks during the day to just try to relax and regroup.
It's sad that people can't understand how we are not exactly the same as we were, because to them we look and seem to act just like we were before the aneurysm.
THE EXACT SAME THING HAPPENED TO ME....I JUST WANTED TO GO IN MY BEDROOM AND SHUT THE DOOR AND "SHUT DOWN"...I had 20 people coming.....THANK GOD FOR MY AMAZING HUSBAND....and NO, OTHERS JUST DON'T UNDERSTAND. BLESSINGS TO YOU. Robin
exactly right Valerie!! Well put! just wanted to say thanks for posting and for reply!-this is how the understanding and comraderie is born here!! excellent topic! I love writing here it keeps me sane!
And you had unruptured annies and still experience these things? Mine was unruptured, but you just described my life to a T! I keep thinking I'm making it up, seeing things in my actions that aren't there and attributing it to my annie when I shouldn't. Like I'm reading what others experience and then fitting it into my life. But I really feel like this is what's it's like now, but why? Why should there be all of this weirdness with an unruptured annie?? Why is there an effect? I was fine before the surgery (I had a PED and coils), but I'm not now. What am I missing? And no one believes me - I try to explain it to them, try to let them in on what's happening and they don't see it. They say it's normal, that they have the same problems. I FEEL DIFFERENT! I know I'm different, but no one will acknowledge it. And I get no breaks for it. Sorry I hijacked your post, I just had to let it out a little. I understand you! I get it! I hosted 15 people plus my own 5 on Thanksgiving and it was awful for me - I don't how to explain that though so I never have to host again. It was overwhelming, I didn't socialize hardly at all, and when I did I know I said all the wrong things. I was so exhausted afterwards, and all the next day too, and today is only a little better. And I'm a year past my last surgery (I had two, 9 months apart).
Its time to sit the family down and let them know...no matter what they think ... You have changed...and things are different... My poor hubs has had to tell many family members and friends...it is so frustrating... You know your limits...so don't let anyone force you over the limits...I have found myself distancing myself from those who can't accept the changes...and embracing those that have understood...
~ Hope family is gone and you are home enjoying some peace ~ Colleen
Oh I so do! And it is impossible to explain. In my case every symptom or problem I try to explain they compare it with a common cold and say “everyone gets that, that’s normal” and I’m like no you don’t get it obviously or I’m not explaining it right cuz I know for sure its not normal. And I feel so humiliated by them cuz they make me feel like nothings wrong with you Lynette “get over it” is this what you mean?
Thank you all for the responses! wow! while it's nice to know that I'm not alone it's really not something you hope a lot of people share with you. I'm kind of taking things like Colleen does and distancing myself from the people that refuse to understand...I think they probably had this kind of attitude about life before I even went thru this anyhow.
....and Sarah, don't be so hard on yourself, I would think that any kind of intrusion in your brain would cause something to be different, we can't compare it to anyone else.
I do find it funny though, that the very people in my life that don't understand are the first to complain about something sounding or feeling odd with their car that they just had work done to ....but apparently they think having work done to your brain is a piece of cake....LOL!
What you wrote..." I think they probably had this kind of attitude about life before I even went thru this anyhow." ... is so true Valerie...often I have seen people so differently since my brain aneurysm. My husband tells me they were always like this, self~centered, etc., but for some reason I am now so much more sensitive to it...
Your post and the responses have helped many...I have learned so much from everyone...
Oh wow...how I can relate. I had an unruptured aneurysm treated with a pipeline stent in late August. Since then my cognitive abilities have declined. Like you have experienced..I too have a hard time communicating and multitasking. I wonder if this is going to be our new normal????
I totally understand what your going through. I had to let my husband know that I was overwhelmed with everything…even with life. After my coilimg my brain was like a gold fish I couldn’t remember passwords for my bill accounts, I couldn’t keep a conversation going cause I would forget what we were talking about or what the question was. For some reason my parents & siblings thought that I was 100% even though I would try to tell them otherwise cause my parents would bring me (the youngest of 4) every letter & would ask me to call for every appointment they needed. I had so much on my plate & well my mother had suffered from a ruptured aneurysm a few months before mine was diagnosed so she wasnt 100% herself but for some reason they couldn’t see how my coiling affected me also…I eventually literally cried to them and told them what I was feeling & that I wasn’t ok. Just cause my scar wasn’t visible it didn’t mean it wasn’t there. I know my husband & kids notice the affects and are very understanding can’t say the same about my other family members or friends…I sometimes try to avoid been around people for that fact that they don’t understand but I also know that I can’t live in my cave forever lol I guess by us trying not to worry everyone with every little symptoms they eventually start thinking that we are perfectly fine when we are not…we have to start letting them know. Sending you a big cyber hug
So true!!! I told my daughter last night that I thought I had actually screwed myself by putting on a strong face right after surgery. I mean I was thrilled I lived so the adrenaline was flowing. Then of course I was afraid of getting a blood clot if I was inactive so I busied myself like crazy. Then after a month or so everything settled down...and the adrenaline was no longer available. Pretty much crashed and burned. After sleeping for about a month...lol...I had my new normal. Conversation skills went first....my daughter asked me if I was getting nervous talking to people - because she noticed that I couldn't give anyone a straight answer. Then my aversion to noise came. Then I began a house buying process and found I wasn't really understanding what people were telling me. I mean I can read/understand the most intricate of crochet instructions but I really have a hard time on the phone and in person with processing conversation. Ugh. Sometimes I wonder if our family just wants us to be well and that is why they live in denial. LOL
I can totally relate. My annies were not ruptured. I have fixed one and still need to fix another. I went to my in-laws for Thanksgiving. I was happy to help beforehand in the kitchen when it was just me and his mom. But my husband was upset when I would not help with clean up. There were already too many people in there cleaning up. I was not needed and it would just get me all rattled.
The other thing that happened this weekend was when we attended a friend's party. It was a game party. They were playing games I had never heard or seen. After the surgery it takes a bit longer to catch on to numbers so I decided to observe. I was sitting with a new group trying to make new friends. They asked why I didn't want to play. I explained I just had surgery 9 weeks ago. After that one of the guys kept making fun of me that I was brain damaged. I laughed it off, but I kept thinking, "This guy has a lot of guts to be saying these things." If I truly had been brain damaged, his remarks would have been really hurtful.
My point is people do not know how to react. It is not something they can see or feel. There is no visible scar or disability (usually). Society has taught them that anything defective with the brain is a negative or an inability to do something which equals stupidity, rather than a different way to process something. These people talking to me were not high class, smart people. They were not getting their master degrees like I am, yet I am the brain damaged one.
One of the things I am realizing that I need with this aneurysm is not just the good health, but a good heart. I find myself needing patience for myself and others - especially others. I need forgiveness for those who do not understand what an aneurysm is, let alone how one is fixed. I need patience and understanding so that I can educate them with time and example. And then forgiveness again when it doesn't always work.
I pray that you have better family functions. Keep in mind too, they may be seeking refuge in denial and not want to admit you have to process things differently now. It is too scary to think of the alternative of loosing you.
I second the wish for a "like" button. ;) This was a really great discussion, I felt so much more "normal" after reading it. It's like home here, but better. Some days I really do feel like my old self, but then there are the blank days, the stare at the walls and wonder what I'm doing days, the leave myself a note or clue times or the conversations without all the words days.
lol I guess by us trying not to worry everyone with every little symptoms they eventually start thinking that we are perfectly fine when we are not…we have to start letting them know. Sending you a big cyber hug 