Lots of my closest friends, know I have been in and out of hospital, but often don’t ask many questions, and I don’t go out of my way to give them all the gorey details, which sometimes makes u wonder if they just don’t care or if they’re just respecting your privacy, but every now and then I want someone to acknowledge that it’s absolutely horrible to be in and out of hospital, and even when you are feeling physically well, you still have all these thoughts and feelings of anxiety in the back(sometimes the front) of your head… Sometimes, just at the pub or in a social situation i find myself not getting involved in conversations about petty little shit because I feel like saying ‘are u kidding, your biggest worry today is that the supermarket ran out of milk, or your hairdresser is on holidays, lucky you’ but I never have the guts and i think maybe if i did my frustration wouldnt build up and i wouldnt feel the urge to scream ‘why me’… plz tell me im not the only person that thinks like this…
Even though its cliche and I would never physically do it, Do you ever feel like screaming 'why me?'
Hi Lyndal H. of the more 3000 survivors than on here...I will jump on this one. Oh and should mention.....you are AMAZING! Why not you??? Who would you wish this awful situation upon!!!!
YOU ARE INCREDIBLE!!!
Please hold your head up high!!!!!
I can’t compare myself to you, with what you have been through, but in part of my work life I have to deal with people rorting the workers compensation system. I have to listen to their drivel about their injuries (quite often through their own stupid actions) and how they need time off because of the pain they are in. It does get frustrating as i think of the excruciating pain AVMers go through, in so many cases, on a daily basis. But I don’t scream out, because I am alive, and like you it was because a fantastic team of surgeons and psychologists offered me a helping hand. We all react in different ways - I choose to be here for a group of very important people - I may hold petty conversations occasionally too, but that is because it provides some of our AVM family (and me) with the only opportunity to interact socially. Please don’t ever forget that some of your closest friends may not even be aware that they may have a dormant AVM or aneurysm just waiting to cause havoc. Lifes been unfair to you, but you are a real survivor - and you have found the right and comfortable place to be yourself. Chin up, Lindal.
Hi Lyndal, I only know what you feel as a mother, but my daughter who will soon be 19 is going through the same emotions as you. She just wants it fixed and taken out of her brain, but that may be a long road away from here. In the meantime, she just keeps saying "I'm still walking around like I always do. I'm still me." I'm sure that everyone you know well cares about you but they just don't want to keep bringing up the questions. Some want to know everything so that they understand it better and others may not be comfortable with that. We all handle things in our own way. Sometimes I want my daughter right with me all the time, but know that's not going to happen since she's not a little girl any longer. One thing I can say for sure is to be nice to everyone you encounter because you never know what they may be struggling with.
EVERYDAY!!! but then I think I must have got this because I am strong enough to get through it and that keeps me positive…
Heck no you're not the only person. I think that a lot. I've now gotten to the point of when it gets to be too much when people are moaning about their boss, etc. etc. I'm like, "Well...you know at the doctor the other day..." and I'll blather on about one story or another.
That shuts everyone up. People often don't realize that they are much luckier than they think.
Yes daily!
Every day Linda I feel like you. Every day I am wondering ''when I will get cut a break'' from AVM, hospitals and pain.
Lets keep hope alive.
Yes I want to scream that all the time! More so on days when my depression sets in, or I have a bad headache and cant get out of bed to take care of my son (who is 7). Then like you I will be out and hear family members complaining about having to buy a double stroller because their daughter is 2 and they are having another one in August. Its like really I wish I could complain about that stuff. Instead I complain about seizure medicine, headaches, pain, anxitey, etc. Plus the fact that I have to wait until my avm is gone to have a 2nd child. So I def know how you feel. Keep your head up and remember that people dont realize what we are or have gone through. We just need to be strong and complain to the people that are truley there for us 
Hi, I am sitting up in my hospital bed reading though some of the things people are going though or have been though and thinking myself lucky. I am at day 11 after my crani and are doing really well, still weekness in right side but all coming back so quickly, having to go into rehab hospital, but I try to take my situation and use it to help others. sometimes friends just don't ask because it upsets them and they don't know what to say. i think u need to bring it up with the one that seem to aviod it and give them a open.
I really felt that befor the crani, what did i do to deserve this on topof everything else I have etc and yes the small shit people go on about can be fustrating and exactly that, shit, but u know what i think the small shits what makes the world go around sometimes so people can sit back and have a breather from all the hard stuff in life we have to deal with.
I hope this has made sence it has taken a fair while to wright but still dont know if u will understand what I am going on about, I hope u do and it helps some. I think I may have an other small problem, trying to get what I want to say to make sence on paper to other people
Any way take care and stay strong
DM
So GREAT to hear from you DM and YES, this has made alot of sense :-)))!!!
Hi Lyndal
Sometimes I do feel like slapping the faces of people who complain about things like crowded buses and trains(I cannot even travel in them anymore) and try to related to my pain with their pinched nerves or backaches(try nerve pain 24/7) due to their lack of execrises. I guess I just have to laugh it off!
Chui
Yes, I am asking every day, what did I do wrong during the pregnancy that my son got DVA and that he can’t sleep night after night because of the bruit and short sharp pain in his head. And we were told they are only veins, BUT THEY SHOULD BE ASYMPTOMATIC… and they are not.
Hi Lyndal,
Sounds like you are expressing what most of us are thinking. I think because some AVMs don't sit on the outside and say "look at me I'm an AVM" that people don't think it's that serious. Is there one friend that you can really confide in, just to say I might look strong but I'm struggling? I really hope so. This friend would be great just to vent to and confide all your fears and frustrations.
This website is fantastic, you are not alone and it's great that you can put those feelings on here. Just keep venting, everyone is here for everyone, literally.
Take care and keep counting to 10.
Dionne
Wishing you a speedy recovery. Dionne
DM H Sydney said:
Hi, I am sitting up in my hospital bed reading though some of the things people are going though or have been though and thinking myself lucky. I am at day 11 after my crani and are doing really well, still weekness in right side but all coming back so quickly, having to go into rehab hospital, but I try to take my situation and use it to help others. sometimes friends just don't ask because it upsets them and they don't know what to say. i think u need to bring it up with the one that seem to aviod it and give them a open.
I really felt that befor the crani, what did i do to deserve this on topof everything else I have etc and yes the small shit people go on about can be fustrating and exactly that, shit, but u know what i think the small shits what makes the world go around sometimes so people can sit back and have a breather from all the hard stuff in life we have to deal with.
I hope this has made sence it has taken a fair while to wright but still dont know if u will understand what I am going on about, I hope u do and it helps some. I think I may have an other small problem, trying to get what I want to say to make sence on paper to other people
Any way take care and stay strong
DM
I think my 14 year old daughter feels the same way. I see her have migraines every day and she can’t stand noise because it makes it worse, so school is a big issue. Then i go to work ( I am a high school nurse) and have kids coming in saying they are “dying” because they have cramps or they come in smiling and say they have a migraine and i am like, “really???- Do you even know what a migraine is??? Because i don’t think you would come in here smiling if you actually had one!!” Everyone is in their own world with their own problems. this site is nice to vent with others who have a little understanding on how you feel.
You know my mom has called me a survivor my whole life and i never figured out why. I have had to face alot of things in my life some I won’t mention on here. But I have 3 other sisters who haven’t faced much of any thing in their lives but normal every day life stuff. I am a 5 yr cancer survivor and a now 4 mo AVM survivor and only 35 yrs old. And always wonder why my sisters haven’t had to face anything like this. Don’t get me wrong I wouldn’t wish any of this on my sisters. I would just like to be there for them instead of the other way around. I am the older sister. I feel like screaming all the time. So I know exactly how you feel. Every time I get back on my feet and start living again something else pops up to knock me back down to where I have to start all over again. And it gets harder everytime. And the challenges become greater, and I never know if I have it in me to do it again. And yes I have actually stood in a doctors office and screamed " not again". When I found about the AVM and that It involved 2 major arteries and i wouldn’t survive the next 6 mo. I considered not doing nothing about I was done I went home looked at my children I went home looked at my children and remembered loosing my mom at 7yrs old and called the dr. to schedluled the surgery and said here we go again. Sometimes I feel lile all i do is survive and I just want to do is SCREAM !!! And i remember what i have to live for and it makes it easier. So there are days I just scream into my pillow and cry alittle bit and get up and go have a little bit of fun with my husband and kids!!! I love them all !! Your not alone. I hope this helped. We all have bumps in the road we just gotta pick are selves back up and keep in driving !!! God Bless! Tonna
Hi Lyndal, you are not the only person that thinks that way. I think that way everyday
yes. i was coming downstairs this morning (cautiously and very slowly) and i was thinking that after joining this group yesterday that i am not alone anymore. either are you. this has really made me realize what is important to me.
Lynda,
You're not alone in that feeling, believe me. I can tell you that most of my daughter's friends have disappeared and don't invite her on playdates and birthday parties anymore. My other daughter's friends don't believe there is anything wrong with my youngest because she "looks" just fine. My relatives tell me I just need to quit treating my youngest like she's broken.
Let's see? Have they walked in my shoes? Have they held a limp, unconscious 6-year-old? Have they watched as EMS carried her out of our house not breathing and us not knowing it was a hemorrhage from a ruptured AVM? Have they stood in an ER room and heard a neurosurgeon say the situation is grave and he will do the best he can? Nope, they don't know those things.
Your friends don't understand because they don't SEE anything wrong. They think you're out of the hospital and back to normal. It is important to find some support somewhere, either with the local Brain Injury Association or even on this site. We all understand. Your friends may make you feel alone, but you're not. I think all of us have asked "why me" in our minds. I have begged to have my "old" life back, even though I know it's a ridiculous thing to say.
Feel free to vent here, Lynda, all of us understand very well.
Best wishes,
Tina