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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Friday, March 9, 2012

Social Life

Having a social life with Chiari is difficult. It's really hard to make definite plans. You never really know how you're going to feel.

Someone may ask me to hang out Saturday night. Of course I want to...but if I say yes luck, I'll have to cancel. If I say no now, again, my luck...I could have a great Chiari day. I don't know how I'll feel. I get a look or a response that isn't too understanding. I don't know how I'm going to feel 3 weeks, 3 days, let alone 3 hours from now.

So how do I handle a situation like this? How do I handle being invited places without being able to give a real answer?

"You never go out!" "You never feel good" "Your head always hurts" "You don't have to drink! You can just go and still have fun!"

Ok... These responses come different ways. I then feel like I get these behind my back (I'm not saying this does happen...It's just the feeling I get)
"She never comes out" "Don't bother, she's not going to come out" "She'll have an excuse" "She has better things to do"

Examples...I have situations where I used to be asked to hang out all the time and slowly the invites happen very rarely or stop all together. doesn't mix well with me. 9.5/10 times drinking kills my head. No a drink will not "help your head" as I've been told many times by random people.

-Sidenote- I wanted to punch some asshole in the face last year on St. Patricks Day weekend in head was killing me while we were in the Sandbar. I had a cup of ice up against my head, this ass walks up grabs the cup out of my hand and mocks me and dumped it back in my hand. -End side note.-

If I'm having a good Chiari day...well theres a good chance I can go and enjoy myself. But as I said, I don't know how I'll feel hours from then. I could get there, enjoy myself, decide to have a drink and well Chiari says F.U. no...then the noise, the lights, the pounding, and the pressure. It all begins.
It could go the same without having a drink on a good Chiari day. I could do the same, go out and have fun. Chiari says you know what? You're letting loose too much. Time to slow down. The noise, lights, pounding pressure begins. Is it some kind of sign that I'm overdoing it? Am I straining myself having a good time? Am I not allowed to have a good time?

Ok I know I hardly ever go out. I know myself. I know how I could feel. Why put myself in the situation? I do want to enjoy life. I do want to see my friends and family. I don't want to sit on my ass all day in front of the tv. Some times that is the easiest.

Others may think this disorder is used as an excuse. But really, it holds us back from a lot of things. If only I knew when and how I would feel. Hell, no one knows when they're going to feel like crap! But most people can get out of bed in the morning and just get moving. For others, it takes us time, it takes a lot of effort to get going.

On bad Chiari days...well I automatically know my answer for hanging out.
Inviting in advance is where the problem lies. It is hard to plan for the future. (Vacations and parties and things like that are a give & take...I'll get to that then) If I'm asked the day of or the night of to go somewhere...I'm more than likely able to give a definite answer.
Chiari comes along with me wherever I go. I can't just leave it at home for a few hours. (I wish)

Making long term plans...well you sort of have to go with the flow. Making plans for vacation...again you don't know how you'll feel. But do you really want to skip out on a week vacation? At least you can lay on the beach and feel like shit? Other sorts of plans...Weddings, Birthdays, have to do the best you can to make it through to support your friends and family.

Basically what I'm getting at...when you invite someone out with an invisible illness...take into consideration what they are going through. You may not fully understand what they are dealing with and thats ok. If they can't make it out....don't stop asking. If you feel they aren't coming out because of other reasons, talk to them about it. If its the case stated above...try asking closer to time/date. You both may have better luck. They won't feel left out and you'll get to spend more time with your friend again:) You're support is what they need. It helps a lot.

This brings me to the Spoon Theory if you haven't heard of it or read it yet. Please take a minute to read it. This is a great way to explain how someone with an invisible disorder/illness/disease goes through their daily life. Some people have more "spoons" than others daily. Be greatful if you have an endless amount!

Yesterday I had all four wisdom teeth taken out. 2 were impacted and the other 2 just pulled. My mouth is quite sore. I feel like I have lock-jaw. Joe took good care of me yesterday too. He took me in and brought me home all doped up. Then he ran a bunch of errands for me and brought me dinner. Dinner was a large thing of KFC mashed potatoes. YUM! <3 Joe! Today it's pudding and jello. J-E-L-L-O!
Joe & I at the Washington Capitals game.
My sister, Karen, over at DesignsByDayzi has made these awesome zipper ribbon pins. They are now available in her Etsy Shop. She is donating the proceeds to ConqerChiari. She also has some brain lockets for sale! Check them out! If you purchase, be sure to mention where you heard about her!

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Keep watch for our next Chiari Carnival coming at the end of the month!