Thank you for sharing your thoughts. I have been struggling with this since I had my AVM ruptured in 2006. My normal life was just turned upside down. I don't normally discuss with others about this. I know your feeling well, and you are not the only person!Sometimes it's hard when people say to me that I have not got sick, I would have been able to do and do that. I then tried not to discuss this with others, and gradually no one actually mention it. If you feel the frustration, just think how good you are not to be troubled by these frivolous things. I used to get mad with things like stuck in traffic, worried when losing something, but now I can calmly deal with these things. With time you will find the inner calm and strength to deal with these frustrations.
Try to forgive others. I also realised now that I was one of the people who worry about little things, and sometimes not being insensitive. Perhaps in my case I am learning a lesson of life.
There are also the anxiety to deal with. Joining this forum and communication with others helped. Remeber that you are not alone, there are other shoulders to lean on.
There is always the question "why me?". I reasoned that if God let this happen to me, there may be a purpose to it. I read a book called "The Island" by Victoria Hislop which gave me a lot of inspiration.
Here is a Australian site that contains a lot of Christian material.
HELLO, I WOULD HAVE TO SAY NO I DONT SAY “WHY ME” I BELIEVE THIS HAPPEN FOR A REASON AND THE REASON IS TO HELP OTHERS THAT MAY BE DEALIN WITH AVM" OR OTHER CONDITIONS WHERE THEY THINK THERE IS NO HOPE. I HAVE A STRONG FAITH AND I KNOW GOD WILL NOT PUT MORE ON YOU THAN YOU CAN BARE. HE WILL NEVER LEAVE YOU ALONE. I HAVE BEEN ABLE TO TELL MY STORY TO A LOT OF PEOPLE THAT I MEET AND THEY ARE VERY SURPRISED TO SEE ME WALKIN, TALKIN, LAUGHING AND JUST BEIN ME. I HAD MY SURGERY IN OCT. AND WAS BACK AT CHURCH IN NOV. EVERYONE WAS SO GLAD TO SEE ME AND REALLY UNDERSTOOD THAT PRAY DOES WORK. GOD HAS PLANS FOR ME AND IF IT IS FOR ME TO CONTINUE TO TELL OTHERS ABOUT WHAT I HAD TO DEAL WITH FOR OVER A YR. THEN I WILL KEEP TELLIN MY STORY. I AM NOW BACK AT WORK, I HAVE A NEW CAR, I STILL HAVE SOME BALANCE ISSUE’S BUT WHO CARES . I AM ALIVE AND CAN SHARE WITH OTHERS SO KEEP YOUR HEAD UP BE BLESSED
I have not been diagnosed with an avm but my 17yr old daughter has two of them and we are awaiting her genetic testing for HHT.. i have been told that I also have symptoms of this.. I very often get frustrated and want to shout why my wonderful daughter... she is a great girl...and model daughter who trys hard at school gained 13 gcse's at grade A's and is now taking four A'levels. It's so unfair for all of u who have AVM's and it's frustrating that friends, collegues do not understand how this affects the sufferer or thier families...we need to raise awareness.
YES!! I am new to this whole thing and its been on my mind ever since! All I wanna do is sit back and cry but of course feel like I need to be strong and support EVERYONE else including my kids, husband, and our familys.
ha - Lyndal , Just read this post and this was exactly how I felt (not about the WHY ME, as i believe things happen for a reason) but when I was diagnosed and I went a year with trying to get somehing done about my AVM - I said F*** U to my job and resigned, I got rid of a lot of my useless friends who I realised over the years just talk a lot of dribble and there is more to life than that, I went travelling (against my doctors orders) and I had the best time of my life, meditating, finding out what this all meant for me and what I had to learn from it. Not that I suggest you do these things, but as I say things happen for a reason and this is happening to you as you have a lesson to learn, to make you stronger and realise the true value of your life and the people in it. Stay strong and cherish in your AVM family and friends that do understand you and are here for your support x
Very well said Jaszi!!! Lyndal, hang in there and know that this too shall pass and the heightened anxiety you feel now does get alot better with time and understanding :-))
Thank you!! I know exactly what you mean, I’m just struggling to actually feel the attitude i know i should and live life to the fullest, i must be coming across as very negative, and im not, well i havent been for the 10 yrs ive been dealing with it all, its just this past month its started getting to me, the dr rang yesterday and i need to have more brain surgery in the next few months, he is waiting for a specialist from Finland to come over to discuss my case… i am meant to be starting a graduate diploma in midwifery in july (im a registered nurse) through uni and the local hospital, which ive been so excited about, and now i may have to defer it now… and i do wonder if maybe i should just live my life and pretend theres nothing wrong and put off the surgery??
Jaszi Jazz - Brisbane said:
ha - Lyndal , Just read this post and this was exactly how I felt (not about the WHY ME, as i believe things happen for a reason) but when I was diagnosed and I went a year with trying to get somehing done about my AVM - I said F*** U to my job and resigned, I got rid of a lot of my useless friends who I realised over the years just talk a lot of dribble and there is more to life than that, I went travelling (against my doctors orders) and I had the best time of my life, meditating, finding out what this all meant for me and what I had to learn from it. Not that I suggest you do these things, but as I say things happen for a reason and this is happening to you as you have a lesson to learn, to make you stronger and realise the true value of your life and the people in it. Stay strong and cherish in your AVM family and friends that do understand you and are here for your support x
I actually think you are very positive person, and certainly a brave person. I had the surgery done five years ago, and stopped doing anything for three years, as I just kind of give up. I had a lot of encouragement from others, include people on this forum. In the last five years. I think you should always focus on health first, perhaps consulting with some other specialists if you want to put off the surgery. I understand that the wait and uncertainty could be nerve wrecking. Try pray each day, do something to take your mind off it like starting a hobby. Relax and do take care.
I totally get it, and have to force myself to conceal my "Are you crazy?" face if I overhear someone complaining about what I now consider a trivial thing.
I am also afraid to gripe too much for fear of being in a downward spiral. It's kind of like when you were younger, if you made a strange face, and an adult told you be careful or your face would stay that way if you did it for too long...untrue, but I am still somewhat superstitious that way.