Chronically Inspired life with Postural Orthostatic Tachycardia Syndrome and Dystonia

Serving a life sentence... I looked you in the eye, stood there yelling at you.  I cant shake these cuffs you put around my wrists. When will i have given you enough? I sacrificed my future, you stole my smile.. I ask myself why i cannot celebrate anymore, then i see you lurking in my reflection. There are moments i forget about you, there are moments i cannot fight the tears any longer. You have me serving a life sentence.. Through all my fight, my suffering, i learned how to paint flowers on the walls, i learned to let the light peak through the cracks in the white walls you built around my heart; mind; soul. I found warmth in the cold you trapped me in.  Serving a life sentence.. i am breaking free, i will leave this box you keep me in. learning from each test; lesson and trial you throw at me, yet you continue to rob me of raw real excitement, that warm fuzzy feeling i try so hard to remember felt. I feel time pass differently than the people walking past me. Power rushes ...

lately I catch myself questioning if i deserve these wonderful things happening in my life right now, feeling disbelief warm over me. Having moments that leave me pinching myself to make sure it is real. I am constantly checking in with myself to remind myself i am worthy, to stay present in the moment, and most importantly enjoy each moment as it is. Remembering to take everything in around me, like taking a picture in mind, that i can go back to when i need. For years in my toughest of moments I held onto the dreams of better days, a future that was greater than anyone expected. I built a dream life in my head, kept it simple and only dreamed to accomplish more than i thought i could.  Living in this space between dreaming and reality, tied down to reality by my chronic illness. I float away in the dreaming and get brought back down to reality on the regular. Why does no one talk about the constant smack in the face when you live with an illness or ailment? We hate admitting that...