Wednesday, September 11, 2013

Hi, My Name's Simon'e and I'm A Spoonie.

     Having Gastroparesis is...interesting. It's considered an invisible illness because the symptoms can't be seen just looking at me and this fact has it's pros and cons. For example, on a good day I can pretend I'm normal. I can go out with my friends and not have people staring or judging me. People who don't know me or my story don't treat me weird or ask a bajillion questions. Sometimes it's nice to forget about my pain and daily struggles even if it's just for a little while. On a bad day though, my main symptoms may be invisible to most, but the trickle down effects every aspect of my life. There are times that I'm hardly able to eat for days causing my body to be weak and my mind to move slow. It's like trying to swim in a pool full of peanut butter and absolutely exhausting.

     So I'm sure you can imagine that on my good days I used to try to take full advantage and do all that I could, but that's where this Spoonie thing comes into play. As much as I want to do all of the things that I used to be able to do, my "spoons" are limited. The Spoon Theory was accidentally created by a woman who was chronically ill and asked by a close friend "what's it like?" She grabbed a bunch of spoons and handed them to her friend. She went on to explain that most people start the day with an unlimited amount of spoons while people who are chronically ill start their days with a limited amount, and it varies from day to day. EVERYTHING that we do in a day must be carefully thought out in advance because even the simplest task can use a spoon or two and when you're starting the day with only ten for example, they can go pretty fast.

     Before I read about The Spoon Theory, I had trouble accepting this as my new reality. I'd work myself until I was exhausted trying to live my life like I used to and then spend the next two to three days worn out. When my family would tell me to take it slow and offer assistance, I'd proudly refuse. I'd never needed the help before and in my mind I was the same person I had always been, why did they think I suddenly needed help all the time? After learning about it though, I was finally able to take a step back and realize that accepting my new Spoonie status didn't have to me that I liked it, and I may do less but I'm not useless. I've learned to do the best that I can at a slower pace than I used to and that my family is more than happy and willing to help me when I need it. On the way home from my last vacation, my family and I where stuck in an airport for three days and they pushed me around that airport on wheel chairs and luggage carts the whole time and as tired as they were, they never complained or made me feel bad about it. If you ask me that's some real love right there=)

     Trying to live at my new "normal" is still a daily struggle that some days I win and some days I lose, but each day I learn. I'm learning to be patient with myself and others, to speak up, and to appreciate the small accomplishments in each day. Sometimes it's the little things, like checking off a box on your to-do list or a small act of kindness, that can really keep you going through the tough times.

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