Living With Dysautonomia
Good morning. I hope this posting finds you all well. I’m not sure why I feel compelled to share my story, but I am here because I have been diagnosed with #Dysautonomia . I have been dealing with all of these symptoms since I was 14 years old. It began with my heart racing uncontrollably, syncopal episodes whirl at school and fatigue. This was controlled with Atenolol. After becoming a mother, I had an episode where I became very dizzy and drove myself to the ER. I had to be assisted out of my car by a rescue team because I could not stand, walk or control my body. I was tested for all the usual suspects, Lupus, MS, etc. Nothing. Several years later, I would be at work talking to someone and suddenly I would get so dizzy I would have to hold on to the seat. I would yell, “please help me. Don’t let me fall!” All the while, I was sitting perfectly straight in my chair though the world looked on tilt. As I grew, the symptoms would come and go. I became a nurse. I took care of both parents until they passed. One month after losing my father, I lost total control of my body. I had no bladder control, no control of my arms or legs, not able to walk straight without holding on, not able to get myself to the bathroom, not able to speak with the same speed or volume. My sister made fun of me. She told me to get over it, to shake it off and get back up. After weeks of having in-home physical, occupational and speech therapy helping me, I was able to return to life. Since then, I have been diagnosed with Rheumatoid Arthritis, Dysautonomia (unknown yet as to which kind) and peripheral neuropathy. Please, don’t think this is a sad post. It is not. I have a wonderful family, a great sense of humor and an astronomical love of life. I have found ways to cope and have learned some tricks to deal with my illness. I hate that it is never over. I hate that it is always there with me. I hate that some days, I make plans but then I wake up and have to save those plans for a different day. I hate that doing normal things like cleaning my house, going to the grocery store, playing with my grand children and running with my dog have become things I must plan my life around because once I finish one of those tasks, my reserves for the day are lost. But I remind myself everyday, God has a plan. He has control. Maybe it’s just His will that I slow down and take care of myself today. I am fighting disability and running from familial diseases (heart disease, diabetes and renal failure) but I feel the breath of these beasts creeping on my neck as I slow more and more every day. I will not give up! I will keep fighting for my new normal life. I will keep pushing through because my children have to see me fight. They have to see that chronic illness cannot stop me from living. They have to see that just because life is hard, we can’t ever just lay down and stay there. Find something to believe in. For me it is my God. My Heavenly Father. If it’s not that for you, though I pray it is, find that higher power that you can love, lean on and be guided by. Trust in Him. He will help you. Maybe it’s all a figment of my imagination, believing in my God. But if it helps me, then so be it. I believe. I must. Because I will not give up. I live in severe pain every day. Some days, I can see, some days, not so much. Some days I can wake up and go Kyacking. Some days I can’t. I will live for the some days. I will share my story and how I cope every day. I will continue to live until I can’t anymore. Wishing you all, a wonderful and blessed day of life! It’s a beautiful life, live it! #Dysautonomia #RheumatoidArthritis #Pain #itsabeautifullife