Hello everyone,
What advice can anyone give to those who live with someone with an AVM. My partner has been very patient with me through all this, however, she gets frustrated with me sometimes.
Thanks.
I GUESS WE ( WITH THE AVM ) have all at one time frustrated our family members. Dont feel bad ,I’m sure you are doing your best and she is also.Maybe she should join the group or just read the stories it may help her . I would like to see what others think also ! I’ll keep my eye on this discussion .
Good question. If there is someone who feels like they could give Jim’s partner some advice on how to cope and how to provide support, please, please post something here. I know Jim is not alone in this question. Thanks, Jim.
I think it is important to recognise that any relationship can be very difficult and stressful at times with the normal ups and downs of life. When you add into that a partner who has a life threatening condition, that relationship gets even more complicated and difficult, no matter how well you think you are coping with it. So do you think your partner is frustrated with you as a result of the AVM or is it just normal frustrations of life? Do you find yourself pretty preoccupied with thinking about it? If you are, then perhaps you seem distant?? Women hate distant!
This question is hard because what I might think are “helpful”, others might think are annoying! LOL But I will try…
Does she have a really good medical understanding of your condition? I think that is important. Education is so key and I can’t imagine going thru this with someone without knowing all that there is to know about it. Especially if you are considering Gamma Knife. It will really help if she has that base knowledge before you go into your consultations about it.
I also think it’s important to really acknowledge and have respect for the condition and how serious it is. I do not believe in minimalizing it to anyone. If other people are uncomfortable with the reality, then too bad for them because it is OUR daily reality and I will NOT pretend that it is not. I just feel that having this attitude respects what my son is going thru and I would feel the same if it were my husband or other loved one. And YES, I can do this and STILL have a positive outlook on the situation.
Another important thing is to help the person with the AVM to plan each day/situation so that they can lead as safe a life as possible. Sometimes that means just talking about it or having my phone on 24/7 and the phone number engraved on his medic-alert tag, or telling others around us what is going on and the possibilities. I don’t dwell on it, BUT it is a factor in our lives and what we do. I want to acknowledge the fear that my son must have sometimes with being alone in new situations. And frankly, sometimes it is easier if someone does that for you.
Other than that, I guess just saying out loud that no matter what happens, I will be there to get him thru this and acting strong even when I don’t feel strong.
I don’t know if this helps but I thought I’d give it a shot. I think YOUR most important thing to do, Jim, is to talk talk talk about what you are thinking. She can’t read your mind. Good luck.
Joy you always have such a great way of putting thought into words. I couldn’t have said it better myself. Janice
Joy said:
I think it is important to recognise that any relationship can be very difficult and stressful at times with the normal ups and downs of life. When you add into that a partner who has a life threatening condition, that relationship gets even more complicated and difficult, no matter how well you think you are coping with it. So do you think your partner is frustrated with you as a result of the AVM or is it just normal frustrations of life? Do you find yourself pretty preoccupied with thinking about it? If you are, then perhaps you seem distant?? Women hate distant!
This question is hard because what I might think are “helpful”, others might think are annoying! LOL But I will try…
Does she have a really good medical understanding of your condition? I think that is important. Education is so key and I can’t imagine going thru this with someone without knowing all that there is to know about it. Especially if you are considering Gamma Knife. It will really help if she has that base knowledge before you go into your consultations about it.
I also think it’s important to really acknowledge and have respect for the condition and how serious it is. I do not believe in minimalizing it to anyone. If other people are uncomfortable with the reality, then too bad for them because it is OUR daily reality and I will NOT pretend that it is not. I just feel that having this attitude respects what my son is going thru and I would feel the same if it were my husband or other loved one. And YES, I can do this and STILL have a positive outlook on the situation.
Another important thing is to help the person with the AVM to plan each day/situation so that they can lead as safe a life as possible. Sometimes that means just talking about it or having my phone on 24/7 and the phone number engraved on his medic-alert tag, or telling others around us what is going on and the possibilities. I don’t dwell on it, BUT it is a factor in our lives and what we do. I want to acknowledge the fear that my son must have sometimes with being alone in new situations. And frankly, sometimes it is easier if someone does that for you.
Other than that, I guess just saying out loud that no matter what happens, I will be there to get him thru this and acting strong even when I don’t feel strong.
I don’t know if this helps but I thought I’d give it a shot. I think YOUR most important thing to do, Jim, is to talk talk talk about what you are thinking. She can’t read your mind. Good luck.
Joy had some very valuable advice!
You mentioned that your partner has been patient but gets frustrated at times. Does she seem to get frustrated when you are discussing certain aspects of having an AVM? Does she get frustrated when you are NOT discussing your AVM? Are you taking care of yourself in the way that she feels that you should be? I’m wondering if there is something specific that is frustrating her that maybe she isn’t able or willing to articulate.
Christine W.
Hey Christine, these are excellent questions.
I think the greatest amount of frustration comes from A) the fact that I probably seem to complain a lot about my situation. In fact I probably discuss my AVM too often! and B) the fact that I am probably not taking care of myself as good as I could be. I do exercise, however I am worried/paranoid about causing a rebleed-if this is even possible.
In short, I guess I am letting my AVM get in the way of our life. (My AVM is very challenging for me to deal with psychologically).
I am impressed by your honesty! It seems that you know some of what is causing your partners frustration and you also are open and candid about allowing your AVM to control your life in some ways. Now what we need to do is focus on finding some healthier ways for you to cope with having an AVM and all that goes with it.
I never had a bleed so I don’t have the traumatic memories associated with that experience. I can only imagine how difficult it is to have that memory always in the back of your mind. Your fear of a re-bleed is 100% normal and 100% justified! Fear is not a bad thing - it helps keeps us safe and alive, but it does need to be managed. Even when fear is justified, sometimes we allow that fear to take control over our lives and that can be highly counter-productive and unhealthy. There are a variety of ways that you can learn to manage your fear and your thoughts so that you are in control rather than your AVM and fear being in control. My head is killing me today so my brain isn’t allowing me to get into any deep discussions but let me share two very simple things that could help you with keeing your fear in check.
Are you into music (any type) or have a favorite band or group? Did you know that if you are singing or humming your brain can’t ‘multi-task’ which means you can’t worry or stress while you are singing? I know it sounds silly but when I start to worry or my thoughts start drifting to ‘what if’ scenarios, I immediately start singing. Sometimes I have to actually listen to a CD and sing along with it to really escape the negative thoughts, but most of the time, just by singing a song or humming I’m able to stop the train of thought and keep myself distracted in the song until I’m at a point where something else is distracting me ( a phone call, grocery shopping, doing something with my daughters, etc.). I know it sounds ludicrious but I’ve shared this method with all of my friends and family and they now swear by it too.
The second thing is based on a new study of people that suffer depression and anxiety. What was found was that when people forced themselves to smile they were happier, and the longer they worked on forcing themselves to smile the less depressed and anxious they became. The study even went a step further and took a group of depressed people who didn’t need botox for wrinkles but gave them botox injections in their foreheads so that their eyebrows and forehead were raised in a position that mimicked the way the face is when one smiles. The people with the botox injections also became happier and had a huge decrease in their depression and anxiety levels. Bottom line, when you start worrying, getting nervous, or thinking negative thoughts, simply force yourself to smile. It will feel strange and very unnatural for awhile (and people might wonder what in the world you are up to!) but it’s the same thing as when you sing - if you are forcing yourself to have a smile on your face your thoughts are busy with the smile and turn away from the negative thoughts.
Again, I know these things sound kind of lame but I promise you, if you start to interrupt your negative thoughts with singing/humming/smiling, it will be very helpful! Singing and smiling are both free, they cannot hurt you in any way and you have nothing to lose by trying them so hopefully you will humor me, give it a try and let me know how it works for you. 
Christine W.
Hey Christine, I really appreciate the response. I will let you know how everything goes. Thanks again.