Tuesday, July 3, 2018

Confessions of Disability.

Something interesting has happened to me this year. (This has happened to me in the past as well.) I no longer go anywhere unattended. I stay home alone often yet, I never leave the house alone... And I have a HUGE confession, it's completely and totally embarrassing to me. I used to be social, outgoing, and I took on the world. I now at 25 years old, am engaged but I can't leave my house alone? That's when I realized that I can leave my house alone. I don't always need another person with me... But it isn't the safest nor always the most effective way to get tasks completed outside of the home for me. When you are disabled, no matter how hard you try. And you know you try hard not to... We tend to compare ourselves to others in the world. (Or at least I do. I admit it.) And the sicker I get the more I sink my feet in and get stubborn. I then compare myself even more to others. Then of course I rapidly spiral into an anxious-stress ball, looser, weeping, burden. I have times where I really struggle with wanting to be "normal" again. I miss the old me. And I have a hard time navigating the meter that measures if I am failing at life. Am I doing good enough? I can't hardly keep up with half of what it takes to survive and sustain life. I simply do not have the energy. My body uses it all fighting day in and day out the many illnesses I wear. Some days, or weeks... Though I love makeup dearly and do enjoy getting dolled up, I have to skip the routine. Some days I just throw my hair up in a messy bun or forfit the curls. This makes me feel lazy or ugly. Sometimes like a coward and I remember the girl who gleamingly would jump out of bed very early in the mornings  with enhusiasm and excitement to put her makeup on. Now the same girl turned woman... Can barely make it out of bed? And if she is lucky she will complete her daily tasks that most people will never have to even consider doing. (Calling doctors/pharmacies/insurance/home-health. Organizing medications and medical supplies strategically. Making sure she has what's needed for survival for the next few days. Once these tasks are completed that take several hours per day, then she can move onto "normal" or "regular" tasks. Often times, she looses her energy and has to stop and rest. Rest is also different, it takes more rest for a lower pay off. I have to plan strategically what I can attend or can not simply by the guessing game of the energy surplus, that I may or may not have. And don't double book. No we can not attend, or do two things two days in a row. We are lucky to get one thing in a day done. You see I realized I wasn't being fair by comparing myself because, as a chronically ill disabled woman... I work hard. I may not put in a 9-5 job but I most certainly put in all my energy at all hours into functioning at a lower rate. I strategize so I can appear okay on the outside no matter how many symptoms are ravishing my  insides, or how mentally and physically drained I may be. I am pushing the smile because I only have one life too. And I want to be with my  loved ones and family. I want to share moments and memories. I want to forget about what's happening in my body and I want to serve others too. I miss the days when I could offer to help someone. Without a thought I could volunteer my time and services. I could help another, now it seems as if I'm always only asking for help and I rarely get to return the favors. I feel like a child often trapped in an adult life. But I know that comparing myself to others around me is simply not fair. Because I do work hard. I do try and I may need help but there is a LOT and I mean a lot that I do complete with absolutely no help. Ever. So yeah being disabled is hard. People judge you for not working and providing for your family or they call you a millennial (even though you're only living at home due to being disabled and choosing to pay your medical debts and bills versus having normalcy.) maybe we don't work. Maybe we can't leave the house alone. Maybe I do get anxiety because we forgot how to have a normal conversation with a normal person. I don't know what to ask about your job, kids, life... It's like living on Mars. When people ask how I am or what I am up to, it involves a small lesson from the academy of Sickville. If you're chronically sick, don't be too rough on yourself! You may have to do things differently but being normal is totally overrated anyways! Let's quit the habit of comparisons and start being proud of how hard we fight our battles. Every single day. The ones that are 24/7 and that we can never take a vacation from. Be proud friends, there is a lot of good in you, and I know you're doing better than you think! We are truly never alone in this battle. With love always, -Chelle 

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