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February 2019
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I'm coming up on my 10 year anniversary of my diagnosis. When I was first diagnosed there was a lot of scary literature online with 5-10 year mortality rates. I'm sure some of that still exists. Yet here I am, at the ripe old age of 26 and I've been officially sick for 10 years. My first definitive symptom started 13 years ago though, so really I've been going even longer. Ticking along with my multiple diagnoses longer than a Google search would lead you to believe I should. My quality of life is anything but glamorous but I try really hard to remind myself that I'm pretty sure I'd rather be alive. I'm not going to lie and say there have not been a lot of days where I didn't want to be. I've always been the socially inept, academically inclined little nerd. Until I couldn't be. Until my health in every way possible took away my ability to finish out my plan for myself and have no one close to me understand. I didn't have many friends to begin with and I have lost most of them through the years from growing apart or me pushing people away. I imagined myself having a much different life. I imagined it being much more fulfilling. I think that is probably how alot of people feel, but I feel like most of my choices were taken from me these past 10 years. So now I've settled on not completely hating my life alone with 2 cats. I try to enjoy my job as a pharmacy tech as much as I can. I spend time with my family. And I pretend at all times that I am not in horrible pain. When I'm shifting my weight in my chair because the back pain is unreal. Trying to laugh so I can inconspicuously crack my jaw for the 5th time in 10 minutes. Wiggle my fingers over and over because my hand is stiff and hurts like hell. Try not to let anyone see me blowing blood into a tissue because I have ulcers in my nose again. Hide my hands so people don't comment on how they're blue. Ignore stares sitting on floors while shopping for bras. Hiding a limp because I don't need the questions. I spend more time pretending to be well than anyone could imagine. Its time consuming. I don't want anyone to realize anymore how bad off I am day to day. I don't want people thinking I'm incapable of doing my job. I don't want pity. After 10 years though, it would be nice to be able to drop the act, and just have people accept that this is me. I am the same, sick me. I'm not getting magically better, but it's ok.
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February 2019
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