How I live with Chiari day to day

I'd like to wright today about what's it's like to live with Chiari for me. We have had many questions about this and many concerns and although we are all different it has weighed heavy on my heart.
Before I was diagnosed I had no idea that not being able to filter the noise around you was not normal, I thought the ringingin  my ears everyone had and of course the head pain that shoots up the back of my head so fast that by the time my mind could rap around what was going on it was gone was normal. As I got older it got worse along with my memory, days or weeks seemed like months or years to me, I had spots that in my past I have no memory of at all. The weird feelings of one foot being asleep and a shooting pain in an arm did not make since. As I got older it got worse, I knew there was always something wrong with me, I did not fit, I had friends but they were the type of people that loved you and just went with me on who I was.

 When stress came knocking on my door I could not and still can not handle it. Many times before and now there is a place that I go and I have issues with understanding what is going on. I need, I have to talk things out, I can not go on a what if, and I have to be around safe people or my body can not handle the emotional and physical trauma.

Some of you have had the surgery and have become to heal and found a great deal of comfort in it, I knew when I went in for surgery from my NS that the damage from my brain stem and vegas nerve was already done and it was to help me from not getting worse faster then needed. We are all different and some have other issues I do not some have similar. I would never change my past with my surgery, My NS did his best and I am in good health care. But I am ill like most of us or all of us in one way or another.

I was always an out going person had many friends and loved to work and loved to play, after surgery that changed. I have very few friends that are here for me. I have seizures that are getting worse along with many other health issues. I am blessed to have a husband that stands by me a mother-in-law that lives with us but our children are very ill as well. Both have Chiari, both have seizure's and our son has JME, all three of us are very sick but we have a happy home but the hard part is when others do not understand. How can they? We are trying to figure it out ourselves. The Doctors don't even know all that ACM effects, we are moving into a world were people are just learning about it. So what and how do we handle these rollercoasters of emotions and people that hurt us?

I had a very close and loving family member say to "what is wrong with you, your not social with people, you disappear and in my head I was trying so hard to figure out after almost 5 years of my surgery how to explain it's all to much, the noise, the people, my anxiety, the filtering and the proses my mind goes through to decompress everyday every moment, every hour.

I go away when I can not handle it anymore, when I need the time to think, hold my neck, rest, close my eyes or when my arms or legs start to shake, because even if they all say it's ok, it's not with me. I go to the quite place and I've learned to mediate it's the only thing to clam my mind. To be still.
Stress is the one thing that triggers all my issues and peace is the one thing for me to deal with day to day life. It is very hard to loss control of your body or your life. So I have learned to be still if not I flip, and blank out and I am the one that pays the price, my body does for days and weeks. When that happens who is there for my children? This is something my children battle with to and we are teaching them how to be still and breath.

So how do I handle all of this? Having Chiari, our children having it, well I breath. In the positive out the negative. I am still, I push what I can not handle and leave it on my shelf, it will be there when I'm ready to open that door or close that chapter. The other thing I do is send love, always no matter who it is no matter what has happened I send all my love. We want our children to be able to have a loving life so we have to give them one.

I have struggled to explain this to close family and friends that is is my life. That my needs are not me being difficalt or rude but a need that my mind has to have. I struggle with the fear of lossing more people and having no control because I have tryed to be someone I am not and in the end I pay the price. So the life I have is the life I have to build for my family for my self for my health. I have guilt with putting my illness on others and it is my fault that they do not know about my health issues but it what I feel is best because it's to much for me to handle. I'm not telling anyone to do as I do but many have ask. Everyone needs to find the best way to deal with there illness, but pushing the nagitive away and welcoming love and the positive has helped me and my family. I do hope this helps.

The other thing I do is come on here, because it is always a welcoming support to know you are not alone. We send you all love and support and with sharing this I hope I have helped someone know they are not alone.

With all my love
Heather founder of Zipperheads for Chiari

PLEASE note: This is my story this is not a medical site if you have a medical problem or question please call 911 or your doctor. We are a support group a community and we are only here to support and love all.