Eleven years post-bleed and I have to say I'm a little tired of having to explain my issues to those who have been privy to this information from day one. It's like I'm constantly having to reiterate that though I might look normal, I am not. So aggravated lately.
I know exactly how you are feeling. All I do is explain to people why I can't read or write. Yesterday, I had to go to my library to explain for the 100th time that I only want books on CD. It does get frustrating.
I agree, Missa. If you don’t look normal, the expectations people have toward you is different. If you look normal, they expect you to be normal. It made me think about all the people that have things wrong with them that look normal(Aspergers, bi-polar, TBI) and struggle with it every day.
Louisa-I want to mention that if you have a kindle, there is a setting available so kindle can read the books to you. I used it when I first got out of the hospital because my left eye was damaged (it has since healed). Some people don’t like the voice that reads to you but I don’t mind because that way you can get any book that is available on kindle.
I agree I have been dealing with my AVM for over 5 yrs. Know about it for over 6. I have not had a bleed, and hope to keep it that way! Sorry to hear that you had a bleed :( Anyway my family still doesnt get it. They think my house should be spotless and I should be free to baby sit their kids and so on. It beyond annoying!!!!!!!!!!!! Yes I look normal and act normal but my brain is not normal. If I walk to much or clean a room a end up in bed with a horrid headache and it sucks!!! Or I end up dizzy and nauseas. Its a never ending circle. Thats why I love having people like you to talk and complain to bc you get it without many words needing to be spoken!!!!!
Exactly you three! I've had a bleed and surgery and I still get headaches. People just don't get it. I had to relearn how to write after and my friends get mad because rather than write, I type everything. Writing is hard! But then I also have depression, rages, and insomnia. Sigh, unfortunately until they have had an issue, they will never get it.
I was just writing about how I was tired of certin things...this being one of them.
It's been only four years for me, and I'm already wondering how I'm not making this understandable.
Yep. Here at work I get "you don't look like somebody with a brain disorder". Hmmmm, what does somebody with a brain disorder look like?, please people, you tell me!
Ha! You are so right!! It's like, they expect us to have abnormalities on the outside that show the broken parts inside. Well, aside from my seven inch scar and several others, there are no signs. I rarely stutter now, but my speech is still slurred. But people are still in disbelief the first time I tell them about it. I think I'll put a sign on my head that says....AVM.