I was diagnosed with fibromyalgia in February of this year, but I’ve suffered from chronic pain every day for over 4 years. I’ve had long bouts of chronic pain before that too. The last four years have been rough. Last winter was the worst. I was lost on a sea of pain, just trying to survive. I would go to work and use every bit of energy I had to get through the day. Eventually I didn’t have the energy, so I relied on adrenaline to get me through. I would throw up a wall in my mind to get through the work day. It would block out everything from my neck down. I often forgot to eat lunch or take my medicines because I had blocked out all signals from my body. As soon as I left work, that wall tumbled down and a wave of pain swept me away. I’d crash as soon as I got home. My evenings were spent with an ice pack on my head and a heating pad on my back, resting until I would try to sleep. But I wasn’t getting any quality sleep. My body was not getting a chance to recharge. I knew I needed to exercise to help with the pain, but I was just too tired. I couldn’t make myself do it. Finally, I had to take an 11-week medical leave of absence from work. That started on April 1. I used that time to try to heal, regain my energy, sleep better, and learn how to manage my pain and stress.
That winter was terrible. I can’t adequately put into words just how dark things got for me. I was blinded by the pain. I couldn’t see or feel anything else going on around me. I couldn’t connect with others. The pain overwhelmed me. I emerged from that winter of darkness into a brighter period during my leave from work. Somewhere in there, I lost my hope. I don’t know when I lost my hope or if it will return. I feel like a different person now. Like I emerged from a fire reborn, in a way. Fibromyalgia is part of me now. Accepting it as a component of my existence gives me the power to control it as best I can. I can make the pain better, I just have to work hard at it.
My therapist keeps telling me that I am hopeful and optimistic about my future, that hopefully I’ll be pain-free one day. He tells me I’m nitpicking the definition of “hope.” Hope has become this intangible thing to me that I can’t rely on anymore. I have to take a more active role in my fate now and learn to manage my pain. I can’t just rely on “hope” to get me through. I do hope for a pain-free future with no fibromyalgia. I don’t feel a sense of hope anymore. I can’t place my trust in hope. I can only trust myself and my doctors and therapists to help me manage my pain and get healthier. I work hard every day to increase my energy level, learn to manage my pain with the goal of decreasing it, be healthier, and to keep a positive outlook. But if you ask me if I’m hopeful that I’ll be pain-free one day, I say no. I believe that it’s possible that one day I’ll wake up and the pain will be gone. It happens. I believe I can still achieve everything I want in life, I’m just going to have to go about things differently because of the pain. I have to make allowances for my health and it may take me longer to achieve things, but I know I can do it. That may sound like I’m hopeful to you, but I just don’t like that word anymore. I don’t know when hope became something negative and not to be relied on to me. Hope, for me, has become like winning the lottery. You really want to win the lottery, but the odds are stacked against you.
So I will continue battling my pain every day. I will continue working to make myself healthier. I will keep fighting my fibromyalgia. I will exercise every day to help control the pain. I’ll keep doing all the things that I know help. These things are tangible for me. I have seen the proof that they work. Maybe one day I’ll find my hope again. I don’t know. For now, being optimistic and motivated to keep working to improve my health and manage my pain is enough.