Hello everyone. I think this is more of a vent than a discussion, but I would like your feed back if you feel like it please.
I am 2yrs & 3mths post op after brain surgery & injury. I had to re-learn everyting again and I mean everythin…walk,talk, read, write, cook etc, etc, & etc. Please know that I am not feeling sorry for myself as I work hard on my recovery, BUT, lately I am going through incredible frustration!! WHY, when ‘other’ people know I have a brain injury, do they immediately feel that I am STUPID?? Not all people of course, my family & my AVM family don’t feel that way I know but a lot of others DO!!
I do KNOW when people are trying to make excuses to come see me, I KNOW that at times, I could drive you crazy asking something 100 times, I KNOW that I can’t drive due to seizures, I KNOW how to cough (just said that on F/B as a well meaning ‘friend’ was trying to teach me how to cough), as I said there, I have had bronchitis for a week & I don’t, really don’t need someone to teach me how to cough!
Hopefully, this doesn’t sound too bad, as I don’t usually do this, but tonight, I just LOST it!! I get SO excited when I hear good news on this wonderful site and I get very excited when I “remember” another word, or song, or anything that has previously evaded (?) me; why or why then, do ‘others’ just ACCEPT us/me how we/me ARE!! NOT what they expect from us. Truly, this is really driving me nuts tonight as I KNOW I can’t help this situation and I AM doing the very best I can with what I have, right now!!
Thank you for listening to my rambles & frustration, I am really very grateful, just really FRUSTRATED right now.
Take care & God Bless you all.
I always remember in rehab some fool said all women know how to bake an apple pie…huh? She then asked me how to make an apple pie. I said go to the super market then the frozen food section and buy Mrs. Smith. Stick it in the oven for 30 minutes and it is ready. http://www.mrssmiths.com/prebaked-apple-pie.aspx
Guess what…I was right.
Lesley…there will always be well meaning fools in this world!
Oh Barbara, you really are a hoot! Thanks so much for making me laugh!! Yes, you were right; I NEVER knew how to bake an apple pie Barbara & yes, of course there will always be ‘well meaning’ fools in this world! Many thanks again my friend!
Must be a generationaL thing, I’ve heard some doozies too about what is expected (especially for women)… Barbara, you are so right, most people are well meaning but just the wrong things. While on this journey, I found it best to pick those around me that give me love and support and understand where others are cominmg from but ignore them. It’s the same for all of us even pre-AVMs, you have to pick and choose who you surround yourself with to make the journey more pleasant (probably not the right word). But you probably already know this. Either way, I hope it helps. Vent anytime Lesley.
I also have a well meaning aunt to insists to talking slow to me and holding my arm when crossing a road. It does drive me crazy at times but I know she means well, so I try not to snap at her too often. I agree with what Barbara and Suzy said, although I do know how to make a kick as* apple pie! Let me know when you want one! Love to you dear!
Yes, Lesley, we need stupid people like a pain in the _______. Stay strong Sweetie. You work so hard on your recovery and are the most positive person I know…Keep it Going, Twin!
OK I was so frustrated living back at home with my 70 year old Father who was lecturing me on How to shave my legs! I’ve only been shaving them for 30 years idiot! But when people buy my cheapo razors they tend to nick and cut more, which means it is not operator error it is instead low budget razors! Yes, I do know how to shave my legs!Where was he when I was learning the 1st time at 12? With his Secretary I presume!! Oh well nice to rant isn’t it!
hope we all feel better!
Listening is what we are here for. It will get better then worse then better. Just remember it is what it is. You will make new friends that will understand and think nothing of your situation. I did. This world is full of wonderful people. We cannot help what has happened to us. We are miracles of life. Just put your whole life in the LORDs hands and take each and every second one step at a time. All will come in good time. May GOD bless you and watch over you always.
Nicole, I had to laugh when I read your reply. My dad (who is turning 75 and I’m living with) can’t hear worth a damn. He sounds like your dad… very um… opinionated. But just remember, they won’t change no matter how hard you do what you do. I have to continually remind myself of that. It’s so hard because you feel like youre helping them but they’re helping you… at least that’s my situation. Sometimes I just wanna scream… I’VE DONE THIS BEFORE AND I’M A GROWNUP NOW. Twenty years experience with technology and they lean on my brother-in-law for anything computer-related…ok, I have an MBA and know about HR and recent laws but my opinion is discounted…ok. But I just bite my tongue, play with my phone or get on the computer. I really don’t know your situation and won’t even pretend to but the one constant seems to be love. Hope that’s the case with you. If not, reach out here and you’ll definitely get that. Ok… stepping off my soapbox now…lol.
Thank you all very much for your responses. I am very grateful for your understanding, support & AVM love. Trish, I would LOVE an apple pie, I believe it is my favourite dessert and have no idea how to make one from scratch, so I’ll have to go to the supermarket, thanks Barbara. Louisa my Twin, as always, thank you!!
Suzy, Nicole & Pamela, again, my thanks…I also thank God every day for life, my family & my AVM family.
I understand what you saying…When I had my surgery I had the feeling that I was reborn again…It was hard for me before that I was an independent person…Learned how to talk knowing that I knew what i was gonna said and the words would not come out like I want it to…It was frustrated That I had to the depended on my husband and my family members…I was getting in to the point that I didn’t want to talk to people…I need for my husband to give my instructions what to do and my mom approval that what I was doing it was correct…I would not tell anybody that I had a stroke or brain surgery only to the persons that are close to my…I feel like the other persons feel sorry for me or think that Im slow person…But anyways Im doing much better little but little all this frustration is going away…You will see my friend Everything will be okay, we have to enjoy life and live this new journey. Thank you for sharing your journey with us…Good luck and god bless you too.
Hi Lesley, I so get what you mean and I am not the one who had the avm out. People just dont get it until they live through what you all have had to live and go through. Of late Brandon feels the same and then there are those who think well why are you back to the normal, if they only new what you have had to endure they may get. Brandon has to wear a sling due to a dropped shoulder/arm is not working from the surgery and people asume a bike accident I love seeing the look on peoples faces when I say know he just had brain surgery!!! Stay strong and know those who dont get it or treat you different will one day realise and a switch will turn, just know you are a strong women and make the most of life bugger the others!!!
You got some good replies here – I feel better now, just reading!! Laughter is the best medicine and you guys are proving it!! Trish – I want an apple pie, too!
Hello Tracey & Diane. Thank you for your great words. You know, you, my AVM family NEVER fail to support me & bring a smile to my face, no matter what!! Brandon (bless him), and all your family have been to Hell & back Tracey, and here you are, still helping others; you are a wonderful lady my friend. Assuming, well, I must admit that I USED to do that sometimes until I met my AVM. Now, I am doing just what you said to do Tracey…bugger the others!!
Thanks again everyone & God Bless. xx
P.S. Still waiting for my apple pie Trish…hehe!
Life sux some times, an AVM can be a real raw deal lol
I try not to think about it that much! Helps me
Thanks Rich! You know, you really are quite amazing with what you have achieved! And, yes, life does suck sometimes…lol. Like you, I do try not to think about it too much, just concentrate on my recovery!!
well thats very kind to say that lesley, i really havent done that much, was lucky enought to bring back a lot of my speech over time! And i just wanted to get some cash, so was forced into work…as we all generally having to try to get it…
Ya, I keep getting crap at work now. People are just nasty and I never had a problem before my AVM ruptured. And to boot, I’m more emotional and take offense a lot easier. My problem isnt well meaning people its people who attack me because I look normal and they dont think I really have any problems. And its not like I go around complaining all day. I know the well wishers can be frustrating but I’d take any one of them over what I’m getting. I could always be worse. At least those people care.
Almost forgot about that NBuddle… Guess the people on this site are so awesome and supportive I wasn’t thinking about those folks but yes, unfortuneately they’re out there too. Again, if anyone is nasty or just doesn’t understand (and probably doesn’t want to) just ignore them. Life is too short to give them any of your attention. I know it’s really hard to do when you have to work with them and see them day in and day out but you have to take care of yourself first. Best of luck to you always and know you always have us here!
Looks like you need to a lot of baking Trish…lol.