I took two naps today. I can barely feel my arms. My blood pressure is actually reading fine for once and I couldn’t feel worse. I’m exhausted. Yesterday I came home from Publix and sat in my car for twenty minutes before finally calling R.J to help me get inside. I have no answers, no relief on the horizon, no understanding of what’s happening to my body. I have no medication to fix it. The hospital won’t let me start cardiac rehab until next Thursday. I’m scared I’m going to black out in public. I’m tired of complaining. I’m tired of feeling judged about complaining. I’m tired of judging myself about complaining. I’m tired of not being able to just take the fucking reigns and fix the problem. I’m tired of doctors shrugging at me. I’m tired of the fear of knowing that as of this moment, right here, right now there is no relief. Not here. Not at the hospital. Not at the doctor. Not at CVS. Not at the fucking Taj Mahal. I am alone. I have tried over twenty medications in the last two years for the same problem. I hate that people think that living with this disease is a choice when I would fucking turn myself inside out to go one week without all of the symptoms. I’m just sad and there’s got to be a way to not feel so helpless but sometimes you just do.
27-Year-Old Patient Advocate, Freelance Writer, and Marketing Consultant. Check out IlanaJacqueline.com for more info on working together.
The Book: Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane, Be Your Own Advocate, and Live Your Best Life by New Harbinger coming 2017.
Patient with POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, Hyper-Somnia (suspected Narcolepsy), Gastroparesis, and Primary Immune Deficiency Disease.