Loved ones, supportive or not?

Have your loved ones been supportive of your AVMs or not? Just a bit of a poll to see if I am an oddity lol well I know I am but I mean in THIS way :stuck_out_tongue:

yes, but they do not understand the “same way”…

Regis =)

My kids don’t care–thy are too young to understand, they were pissed when after my angiograms and gamma I would not cater to their every whim (as I usually do.) My husband seems to forget, and has gotten pretty pissed/insensitive towards me at times. He is only human, and I can’t expect him to really understand how I feel. Living with a depressed/angry person (me) is hard, too. People seem to think that since I had gamma, this AVM thing is over for me, but it really isn’t. I feel like people get tired of hearing about it, and I feel like it makes people uncomfortable. Any discussion on my part seems to provoke a sort of unnatural, hushed deluge of pity murmurings, “…oh, you’ve been through a lot,” which, while well-intended, irritates me. This is why I am so grateful for this site, because here, people really do understand.

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My nephew and nieces are young too and they don understand anything. (5yrs and 3 yrs respectively) how old are urs? My parents went from scared to terified state after readin this site that i printed out for them to read. so print out for him to read …hehe… not to terified him but to show AVMers hav pmses too… Ive had so called frens tellin me i got fat… i got fat cos i was on d wheelchair for along time and couldnt move much… And she put it nicely and “Hey u look so big as big as me?” and i replied “no…ur not…ur so slim…” and she replied…“ya ofcos i am…i dont sit around all day watch tv and do nothin”…super biatche. I hope u are feeling better.

My family was very supportive of me.

My family was very over protective. I could not have made it through without them. It was for them that I went through this. But now that I hope on the road to recovery, they need to let me spread my wings a little you know what I mean? Some still don’t understand what this has done to me. I feel like a complete different person. Sometimes mentally challenged for my short term memory is gone and so I have to trust when some one says “you said” whatever it may be. oh, well keep on keepin on …getting a better me back. And yes I lost a few along the way but it is their loss. Now I’ll just learn to give to me !
Sending Angel light and love;…d

my family was amazing. for a week.
my boyfriend was amazing. for a month. then he told me I was just looking for attention when I talked about what happened to me. we broke up 5 months later.

At New Year’s dinner someone was talking about a stomach problem and someone else said, “You get the award for worst health problems this year!” (the year of my bleed) Everyone agreed!!! Then I said “I might have trumped him on that one.” and then it was like “Oh yeah. Her.” Hushed silence. Topic changed. ???

Everyone is in their own reality. Outta sight, outta mind. Unless we’re in a backless hospital gown with tubes coming out of us, people don’t think about how we’re affected. And we can’t judge them (too harshly) for that. They just haven’t been through what we have.

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My husband has been amazingly supportive. He’s the only one who seems to have registered just how traumatic this all has been–probably because he was the only one who had to see me have the grand mal seizure, which was apparently terrifying. I feel like he’s a little over-protective now (he won’t let me do any housework yet), but I know he’s only trying to help me get better. He stayed with me in the hospital, held my hand during the awful heparin shots, and helped me wash the blood out of my hair when we got back home. And he put up with all of my emotional insanity over the past five years!

My parents have tried their best to be supportive. They drove down for my initial hospitalization and my surgery, and were physically there to help me. I don’t feel like they really understand how I feel, though. They drove me nuts by being flakey the day before my surgery and having a late breakfast while I had my MRI and then refusing to have lunch with my husband and me; then, they wouldn’t go see a movie with us that afternoon and didn’t want to have dinner together. I think my mom was just a mess because she was so afraid for me, but it still bothered me quite a lot. I felt like screaming, “WHY ARE YOU HERE?!” but instead I just ranted to my husband, who is used to me ranting about one thing or another.

My friends don’t understand what I went through at all. Like Kathryn said, they’re in their own reality. When I posted a blog after my surgery explaining everything that had happened, I got a few emails to the effect of “Wow, you’re so brave!” but that was about it.

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My children and I have been completely supportive of my husband. Unfortunately, he is noncompliant with all treatment, won’t go for follow up visits and is in complete denial about his head. I swear he needs it examined :-))

that’s sad Marylin :(. I had incredible support from all my family and freinds, throughout the process. Maybe your hubby needs to look at this site, to see how some people are effected…I’m not sure how it would be, if it continued though. i got mine removed as soon as they knew what it was

I don’t really want him to look at this site. I appreciate being able to be frank and candid with everyone here without worrying about hurting his feelings. I don’t think he is necessarily being a jerk, but he just doesn’t fully understand what I am gong through or feeling, nor can I really expect him to. He is around me all the time, and if I am depressed or overreacting to something that seems trivial to him as a result of my stress or worry about something else, I can’t expect him to read my mind. The AVM is on my mind (no pun intended) a lot more often than it is on his-I don’t have many physical symptoms that remind him on a regular basis. He really is a great person and a wonderful husband, he just can’t possibly understand what I need in terms of support–I don’t even know what I need! We are also living somewhere where we have no other family, and all our friends all live far away, so really, all of the “supporting” falls on him, which is a heavy burden that one person is unlikely to be able to bear all the time.

I know what you mean, I get sick of being called “brave.” As far as I am concerned, I had no real choice but to get treatment, its not like I would have volunteered to go through this if I hadn’t had to. People always feel like they need to put in some kind of compliment to be tactful but this is really misguided. The words I appreciated the most, more than being told I was strong or brave, was “wow, that SUCKS.” It does suck. It’s validating to hear that other people see that, and think so, too.

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Haha thats so true Marilyn,everytime i got asked how i got my scar,id tell them i recently had brain surgery and the first thing out of there mouths was oh your so brave and my reply was, Well not really,id be dead within 10 years if i didnt go through with it,what would you do…?!
I didnt expect anyone to treat me different because of what was in my head and for a while i forgot it was even in there myself!
Personally i believe ive become alot stronger and better person though this ordeal,and now its time to start the next chapter in my life… :slight_smile:

I am the wife of an AVM survivor and this site has really helped me to understand what my husband is going through. I have learned more in one week on this site than almost a year of doctor visits in all different states. This site has been a real blessing for me. My husband is not able to read and understand all the posts and discussions, but I talk to him about it and it seems to really comfort him too, even though he can’t get on here himself, yet.
Maybe you could print out some of the discussions that you think would help your husband to understand. Good Luck and God Bless!

I know- we have no choice in the matter! It’s take the scar and live or don’t get treated and die…

My family have supported me always buzzing around or phoning me but we have never talked about the avm it never gets mentioned, this is the only place it’s talked about. they ask me how i am etc but don’t ask what an avm is or an angio etc ect. i actually doubt if they know i have an avm. Weird, never thought about it before now.

My situation has been pretty much the same as Jenny’s: fantastic hubby, a few relatives who call, several friends and relatives seem to be “out of sight, out of mind”. Today, my in-laws are coming over yo make several meals for next week, so that will definitely help!

Connie T

Ok now that I have most of your opinions, I will state my case:

Mom: Wont let me do anything, wont let me drive, do laundry, do any housework whatsoever. Any time my children raise their voices at me she sends me to my room and handles it.

Ex mil: drives kids around for me, picks stuff up for me, keeps kids overnite as needed

Ex: Does everything for me, takes kids to school and back here, however, still thinks alot of this ‘avm stuff’ is ‘in my head’ thinks that I think about it so much that I (and I dont) give myself headaches, or make myself BELIEVE i have headaches. I dont even think that I talk about it that much other than to say when the appointment is and cant wait until its all over, even still, its not that often, not every day, maybe once a week when I get a horrid headache or a really bad seizure and I start crying and saying how much I want my life back. He thinks I exaggerate everything, from the seizures to the headaches, to the passing out.

You’ll notice no one wants to talk about my AVM except my ex, and only to deny it or minimize its importance which is why I love it here so much, so thank you all so very much for being here for me, it means alot!!!

To be fair Liam, he did not abandon us. To me, what he is saying to me is heartless, but he is helping out physically. We have had our issues and prior to this we were working on them, but I guess I am having trouble getting past what hes saying now, its so hurtful to even think about. Its not fair and when I do think about it all I do is cry which is no good for me I know.

Hi Jo, wow, your story must be hard on all of you. Mostly the kids. I often wonder if anyone but true AVM s people understand. Even our loved ones. You sound like you were a very independent person before all this happened to you and so it’s so hard finding that balance to independence and depend because if you are like me , we need both. Your ex sounds like he wants more than to be an ex …? I don’t think he would have stuck around if he didn’t really care. Just my opinion. Just take care of you right now and try to help the kids understand tHAT MOMMY HAS SOME BAD DAY BUT IT’S NOT THEIR FAULT AND reconfirm your love for them. I’m sure they are scared! Just my opinion
Sending Angel light and love…d