I know the agony of defeat. I am waving the white flag in surrender. I give up. I give in. Life has brought me down to my knees and I can't find the strength to get up. At times I don't even know if I want to. My feet will no longer hold me steady, my body is broken and I am afraid after so much suffering, so is my spirit.
Every day I fight from the moment I wake up till my eyes get too heavy and I find my desperate relief in sleep. I try and smile to hide the tears that are just a moment away from falling. I can't hold them back, they fall freely down my cheeks, and with them, the frustrations, the sadness, and the hopelessness I feel all too often. I rage against the bonds holding me back, knowing no matter how hard I try, I cannot remove them. They are invisible but that doesn't make them any less powerful, debilitating or restrictive.
I look in the mirror and a stranger stares back at me. I don't know who she is and I have the uncontrollable urge to just close my eyes against the image I see. Her eyes are no longer bright and shining. They are dull and lifeless reflecting the hopelessness she feels. The double chin and shape of her face show the weight gain that is just another casualty that Dysautonomia has layed upon her. Shaking my head, I repeat to myself "This is not me!" all the while knowing in my heart that it is. You'd think after years of medicine and their side effects, bedrest, and inability to excercise, I would be used to it by now, but no, it still is just as heartbreaking to see. It's not as shallow as just my appearance though. It's the knowledge that all the things I used to enjoy are gone to me now. That is the hardest part. Not the endless pain, hospitals, tests, medications or dumb doctors that think it's all in your head. (But OMGosh, they are the very worst)
It's the monumental loss. Loving sports and being a total tomboy, I was in my element roughing it up with my 3 boys. (two kids and a hubby) Now I watch sports on TV. I used to love shopping with my mom, but now it's online or not at all because I can't walk through a store without getting winded and dizzy. I loved to sing, in the shower, in a choir, didn't matter where and when. I had a beautiful voice yet now it's raspy and cracks. Now I listen to music. Enjoyable, but just not the same. Dancing...(sigh) probably one of the things I miss most. We had a girls night at a local bar and would listen to an awesome band and dance the night away. The closest I get to dancing today is watching "Dancing With The Starts." In the midst of this, I find myself with no insurance but it sure isn't for lack of trying. It is a nightmare and I will save that for a different post. I used to have an image of me as the "cool" mom. A place where my boys friends could all hang out. Playing video games, basketball, pool, whatever they wanted. We lost our truck and house when my husband's work went bankrupt and the company screwed us over bigtime. Didn't pay insurance premiums even though we paid for them so all these bills were left to us. Paychecks that we never received. We are so far in debt in medical bills that just keep building up day after day.
Family, an amazing support system was the one life line we had left and they stepped up in too many ways to help and support us. It should be the other way around though, we should be helping and supporting them.
I try so hard to deal with the reality that is my life but it feels impossible. The future looks bleak, my dreams of retiring in a Blue Ridge Mountain cabin relaxing on rocking chairs, looking over the mountains, drift further away with every passing second. The present nearly unbearable and the past, just a memory that makes me long for the old days, the old me. I've always said that I won't let this beat me, but it is. It is slowly taking more and more out of me. A game of tug of war. I am grabbing the rope with everything I have left, and the flag is being pulled away from me. My hands are burning, slipping, I am losing my grip, losing this tug-of-war.....