I'm new here!
Hi, my name is Zinnia3740. I'm here because I've been living with ME/CFS for over 20 years and experiencing a steady decline. In addition to the multitude of symptoms from the ME, I experience chronic pain from 4 prior spinal surgeries, an incomplete spinal cord injury at C5-C6, and I am awaiting another spinal surgery to fuse L4-S1. It is my faith in God that helps me maintain an optimistic outlook and His strength that gets me out of bed and through each day. However, it's been more difficult lately. I was a manual physical therapist for years. This knowledge has helped me in so many ways, but the significant increase in pain (from my spine) started over a year ago. The pain is impacting everything (more sedentary, significant weight gain, worsened ANS dysfunction, worsened insomnia, and problems with intimacy). I'm blessed to have a loving family -- I've been married for almost 30 years and have 2 adult children that help regularly. However, my husband does not like to talk about my health issues because he can't "fix" them. He's also shared that any time I have a new issue or health decline, he immediately fears my death (even if what I'm sharing isn't life threatening). In fairness, I've had serious medical issues since 1993, and we started dating in 1992. My first surgery was in 1994, so the man has spent a lot of time hospitals or doctors offices with me.
My mantra for years has been to modify, adapt, and overcome. The more time that has passed with the increased pain, the more frustration that I feel slipping in . . . the harder to maintain optimism in middle of all the storms. It's not fair to lay all I'm feeling on my family. While all love me and generally try to help, none truly understand. It's impossible to truly understand what you've never experienced. I live in a smaller area, so there are no support groups. I'm not searching for sympathy. I'm looking for others similar to me . . . . people with empathetic insight . . . . humor in those moments that you need laughter to battle the frustration and tears. I've fought it all for years. I refuse to let it beat me now . . . . but I think it's past time to find a team of like-minded people for support and to support. #MightyTogether
