Thursday, March 22, 2012

Ides of Mayhem

Chiari Blog Carnival #2 - Ides of Mayhem
Topic: Alternatives to breaking down, falling apart or cracking up. 

Hmmm Alternatives to breaking down, falling apart, or cracking up....
I'm having a blank and don't know where to start.
Sometimes you just have to break down, as with any other situation, you can't hold in all your frustration and confusion. You can't hold in your tears. The longer you hold something in, the harder it will be when it all comes out. We are strong. We hold a lot in. Finding other Chiarians to confide in is a great way to release a lot of the frustration you may not be able to get out around others who don't quite understand.

When I have a bad Chiari day...thats when I want to break down, I want to cry and fall apart. I want to scream and yell "WHY ME?!" I want to break stuff, punch things, and go into hysterics for someone to understand what I'm going through. Why can't I have a normal life? Why can't I go out anytime I want? Why do I have to lay around and be miserable?

There are days I have to keep it together when I want to break down. I have to keep it together to go to work. I work in customer service so I have no choice but to put on a happy face. I have to keep moving forward.

On my good Chiari days...well I want to do everything. I want to get out all that couldn't be done on the bad days. But on the other hand I can't over strain myself. That will cause a bad day. I can't over exert myself...again will cause a bad day. Hell...I could sneeze or cough too hard..there goes my day. There is also the lack of energy I have that keeps me from doing a lot. The fatigue I get.
The good days give me inspiration to keep going. It helps me to help others in the same situation. Despite the bad days there will be a good day here and there. The only thing we can do is make the most of it.

For example: Last weekend... St. Patricks Day. All the women in my family on my moms side go down to OCMD for our Girls Weekend same time every year. Friday totally kicked me in the ass. Not only did I not drink any alcohol...(Carded for a DIET COKE....side note there.) and started off fine...had to leave the bar early because Chiari kicked in and said FU you're not having a good time tonight. It was nice out most of the day and a bit rainy at night.
Saturday all day was head was good to me. We all went out to the parade, to the boardwalk, to dinner and then to the Sandbar as usual. By this time my head was still being good to me. Again decided no head was being good I didn't want to chance it. Diet coke and water all night. Successful head day. It was misty and chilly all day. You can't predict it.

Cracking up.. I'm not sure how to take this could mean a lot of different things.
Going crazy? Insane? Oh yeah that happens... The pain, frustration, confusion...all of it will drive you mad. What you need is support. You need other people going through the same thing to vent it all out. I have that. is a place I found and it is growing!
I also have Joe. He makes me laugh. This is the cracking up in a different sense. He helps me laugh at the weird things I do. Chiari comes with a lot of off the wall symptoms. Walking into walls...yeah my depth perception isn't great at all. Speech is messed up. I slur or repeat words over and over. I don't feel insulted when Joe laughs at it.
There are others that don't understand or won't take the time to understand.

I read. Harry Potter is my addiction. Disney is an obsession. I will get lost in books or animation and forget about the world. Thats my alternative.

But how do you handle living with Chiari, wanting to break down, fall apart and crack up when you can't escape? You do all three. Just make sure you have someone there to pick you back up. Don't fall over the edge. You need to know you are strong! If we couldn't handle it...we wouldn't have been given this life to fight for. There are others out there going through much worse.

You can find more Chiari blogs on this topic at the Chiari Carnival
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  1. Must admit! I lol'd!! Carded for a diet coke!

    Like you, I use my good days! Sometimes too much and get myself in trouble. But I feel like I need to use them for all they are worth and more just to get all my living done.

    I also have been known to lose it a time or two. I will probably do the same a few more times too. Thank God for supportive loved ones.

    Have a great day, my friend!!

  2. Thank you for what you said.. It really made it reality for me, that I wasn't crying alone and hitting walls alone and feeling bad about it alone... ive aloud myself to become a hermit due to the comments of my neighbors and family regarding how I move and my instability.."oh,she must be drunk,look how she can't even walk straight" when I go check my own mail and I didn't used to drink.... :(
    now I have someone else get my mail, or I check it in the evening...
    Sorry.. my only support I have found is on FB.. isn't that bad.. thank you for your Blog spot.. good recourses.. :)

  3. You're welcome! Thank you for reading:)
    It seems we all have found a lot more support through each other going through the same thing than others who are closer to us.