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Watching the world go by

Updated: Sep 21, 2019

What would you do if your entire life revolved around a single square meter of a room? I have my spot in this bed, its on the left of the bed and that is where I spend over 95% of my life. I get up to go to the bathroom, get food/water and once a day I leave the house for a trip down my driveway to check the mail if I am up to it. It's been this way for 2 years. I can't even drive right now so I am trapped by whether my bank account can pay for the Uber to the doctor. My only window to the world is the TV in front of my and the phone in my hand. I can go a days without seeing a single person. I am usually to unwell the manage to shower regularly so I can wear the same outfit for days on end. I have lived the kinda of isolated existence that is usually reserved as punishment via social and physical isolation. Because of this I have had to change how I view my place in society.

I can't wait till I am fixed/healthy to make my mark and try and function in this world. Social media and campaigning for awareness has kept me sane. I can't get out of bed and physically fight this monster, but I can make everyone aware of it via the internet. In my ok times I am learning how to create websites, do graphic design, and hopefully one day create a viral message and foundation. I want to give to others and this motivates me to be the guinea pig, to spend the money and time researching.

I want my life to be bigger than my illnesses and inspire people by giving them something beautiful, like hope. Hope for a better future, hope for better and quicker treatment, hope for understanding and compassion. I want to show kids, the parents, the newly diagnosed that their condition doesn't have to define them. I feel that this condition empowers me to be a better role model that there is a life to live. So I continue to strive to get better! I want all this to be worth it and create a legacy for others. These may be lofty ambitions, but when you stare at the same 3 walls (I can't see behind me) for years on end you need to give your brain a way out.

All I have been doing since I was a kid was focus on taking care of my health to try and function. I don't want to just survive but thrive! Being sick has taught me a lot and not all bad.

"Being healthy doesn't matter, its what you do with your health" - Claire Wineland

Me in my everyday position

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More Info - #kirstinscause

#cci #eds #chiari

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