Someone may ask me to hang out Saturday night. Of course I want to...but if I say yes now...my 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.
-Sidenote- I wanted to punch some asshole in the face last year on St. Patricks Day weekend in OCMD...my 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, etc...you 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!
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| 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!
