My Demon, my body, my death

  • So, I showered yesterday. Big deal, yeah?! Not for most people. Most people shower daily as part of their routine. I have no routine. It was taken away from me by my body, my disease, my condition. It’s like a death, and I grieve it tremendously. I am restricted to doing only what my body allows for me now. “Original me” did whatever I wanted, whenever I wanted, without much thought of restrictions. Especially to my daily routine. I’d get up in the morning to the alarm, shower, do my usual routine, get dressed, eat breakfast, and drive to work during the week. Weekends were for relaxing, shopping, museums, travel, whatever I chose. It was easy, simple really, some might say boring, but it was my life. And I controlled it. No one or nothing else did. I am now at the mercy of a monster, demon if you will. This demon owns me body and soul, as much as if I’d sold myself to it. My routine is gone, I cannot work, I function and fumble through life as I’m able, but I am not in control. My demon decides if I sleep or if I’m up all night. It decides if I can get out of bed without pain, stumbling, falling, or at all. It decides if I’m too nauseous from pain or meds to eat. It decides if something as simple, easy as a shower is allowed, tolerated, or causes so much pain that I just sit on the tub floor and cry. Just the water hitting my head can be excruciating So, my shower yesterday?! Huge deal! I must have done something to please my demon, for I had a pain-free, long, hot, even enjoyable shower. Then the exhaustion hit and I could do nothing else for the rest of the day. From a shower! I know, crazy right?! I’m quickly learning to take what I can get and appreciate it. A drive to a doctor appointment without too much pain, aura, or visual disturbances to see properly. A trip to the pharmacy without the lights, noise, and smells of the store turning my daily migraine into a 10+. A phone call where the person I am speaking with understands me because aphasia hasn’t caused me to use incorrect words and/or phrases. And yes, even something that used to be so commonplace for me, a shower. I have a love/hate relationship with my demon. I hate my limitations with a passion, but, as long as he’s driving this body, I’ve learned to love and even treasure the little things I’m allowed to do for myself because they are few and rare and precious. A few hours without pain, a day that I can walk to the mailbox by myself, a day without having to cancel an appointment, a day without embarrassment as to what I may say or do while I’m out. I do what I am allowed to do and I do it gratefully. But I haven’t given up, and I am still in here! It’s still me, still my thoughts, my dreams, my future, and I am fighting desperately to take charge once again! Do I dream of the day I can take back control of my body?! Every damn day! And I will! And when that day comes, I plan on sending my personal demon straight back to hell where he belongs! Happily! And hopefully forever! Until then, #AlwaysKeepFighting! 

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