This was written by a Chiarian friend of mine on Facebook, and I could have not said it better myself. It really hit home for me, as I was in complete tears after reading it. I felt I had to share this!
With us Chiarians our whole life changes and it is sometimes hard to see out side of ourselves to recognize that it effects the whole house and everyone that is around us. With that being said, I want to talk fist about us Chiarians and how ...much it effects us on a daily level.
Before, during the surgery, and after, we change... We become a shell of what we think people want us to be on the out side, because of course we “don’t look sick” so we must not be. On the inside our whole life has changed and we have to choose- “is this going to be for the better or the worse“? What I mean is are you going to embrace life and enjoy what you have or will you not. Knowing I have Chiari and going through the surgery has changed me. Our bodies are always changing specially after surgery to find the normality it needs for balance. This is the same for us mentally and emotionally.
I was a shell of how everyone else was, are they ok, how can I help them until I couldn’t any more.
My shell shattered, more like exploded after surgery and has never been the same. But I look the same, laugh the same, love the same things... But inside I have changed. I’ve grown and continue to grow but it comes with a price and that price is most of my friends and family don’t get me and understand me at all. I choose to have this as a lesson to work on myself and make “me” better. I don’t have the time to be or do the things others are. So I have a void or one of my friends called it a block in between everyone who has not taken the time to understand, truly understand. I can’t seem to move that block and when I do I’m sure it will be the correct time.
Chiari has not just effected my health but also my friends, my family, the way I was, is not what I am now, and some will never be willing to understand that, and that hurts. Chiari effects where or what I can do, and how long. I miss out on family and friends celebrations if they are to stressful for me or I’m not feeling up to it. It effects everything, and it makes me sad, but I have to be ok with it because I can’t change it. The problem is I feel others have not excepted it. I feel I bore them now, I’m not as fun and it is painful for me to go through.
The house that I live in, the loved ones around me, and the ones that support me are also effected by this. I realized after my surgery I didn’t just have this, but my whole family did... And they suffer too. I don’t know what it’s like to be them, because I’m the Chiarian, but it does push me to try more and seem more normal then I feel or what I really want to do. What I mean by that is most days I want to lay in my bed, but I don’t. I sit on the couch were my husband and daughter can see I’m ok. I apologize more then I ever have before and I wish I could keep up like I once did, but I can’t, so they get what they get, and they seem happy about that.
I know and understand it’s hard, and I wish I had the answer to make all of this easier on everyone. I’ve often thought about saying “you walk in my shoes”, but I would never wish this on anyone. The point in this whole story is we are all effected by Chiari. We all have to choose how we are going to live with it. At this point the answer is we chiarians are not alone in this, we all go through this, and it is hard. We have to make the choice on what works best for you and your family.
Enjoy what you have, live life to the fullest and understand and except that we might just have to be more creative on our daily life. How do I get though this, how will this affect my children, how will it affect my other half, how will this affect my family and friends, how do I survive living with Chairi. We live everyday with these questions in our mind, we sleep and wake they are still there. We worry ourself’s over and over. How do I, How will it, How……..
How do I get through this-?
It is a very simple answer. One moment at a time, One day at a time. We are exactly where we are supposed to be. In our minds it may not seem fair but it’s what we got. “Now”, this moment, this day. I know you might be looking for a better way but there’s not one. This is what we have and it is accepting that we have Chiari and embracing the day. We can not change that we are who we are. We can’t change that we are Chiarians.
We can change how we get through it.
How will it affect my husband & daughter?
I have been together with my husband for 18 years. My daughter is 16 years old.
The year I was diagnosed and had surgery, were not as hard as after my surgery. 2011, has been the hardest year we have gone through yet, with the IH complications. I think I feel guilt for putting them through this and they are angered, frustrated, overwhelmed, and they feel helpless. We should accept all of these things. They should too. But it is not that easy. So I go back too the first question and say, “take it one day at a time”. Love them cherish them and be there as much as possible.
How will this affect my family and friends-?
Some will leave and that hurts a lot. Some will stay and the love will grow stronger and it will overwhelm you. Some will still not understand and it will be hard. New/old friends will come into your life and will help in other ways.
After the surgery it was harder for me. For some reason after the surgery is when it set in I have Chiari and my symptoms are still lingering with the IH… I worried about EVERTHING. Everything was taken from me, my friends, my social life, and my ability to work. Then one day after a very hard week, I stopped. What ever I could not help or fix that was negative; I pushed away because I can’t do it. I am too “sick”
Oh my god I’m sick. So I work on the positive. I fall sometimes, it is not easy but it is worth it. So if I can’t change it, fix it, help it, or correct it, I close my eyes and push it in my mind with my hands... what ever works... but push it away. Worrying turns into negativity, and that turns into someone I don't want to be because it is painful. I always write what ever it is down and when/if it can be fixed or taken care of it will be... but if I can’t today, then I push it away. It’s hard, scary, lonely and overwhelming and and and and and and………………. So just STOP, and push it away, not forever... just for now.
When you can deal with it you will.
Deal with what you can today.
I dedicate this to all my IH & Chiari friends who I know RELATE!!! Because we are now FAMILY!