I’m not sure I’m ready to write about my pain yet. Even when I sound or look like I feel well, I’m feeling some sort of pain. I am asked how I’m feeling and I’m torn. I don’t want to lie and say I feel fine when I don’t but I get tired of being the object of pity. Debbie Downer has nothing on me. If I do say I’m feeling fine, I always end up going into more detail because I’m always asked if I’m getting better. I have to accept that there is no cure for Fibromyalgia and part of that acceptance for me is helping others to understand that there is no cure. I will always have pain. At the same time, I don’t feel like anyone can truly understand what it is like to wake up every morning, knowing that you are going to have some sort of pain that day with no idea why that particular part of your body is hurting. In my case, I’m usually in pain before I wake up in the morning and that is what wakes me up and alerts me that I need to take my medication. The only thing that changes is where that pain is. Sometimes I say there are good days and bad days. The reality is, there are good moments and there are bad days. On a normal day I can be feeling fine one second and the next I’m looking for a place to sit down. On a bad day, I feel like I have the flu. I’m fatigued, most of my joints hurt and my entire body aches.
I’m sensitive about this subject especially because before I was even diagnosed with Fibromyalgia, having only been on my pain meds for a couple months, I was accused of being an addict. I cannot tell you how much that hurt or how angry that made me. Here I was, struggling with depression, my life in tatters due to this mystery illness, and someone I hadn’t even seen in person since the illness hit me was telling people that I was addicted to my pain meds. I was getting no high from these drugs, they weren’t even fully relieving the pain that I was experiencing and that is why I am not an addict. This has stuck with me so much that I’m in the process of working with my doctor to wean myself off the narcotics even though my pain has gotten worse since we’ve begun this process! I don’t want to go back to where I was last year where my pain was so bad at times that I did not want to live, but I want to be off all this medication.
When asked by my doctor last year, before I was even diagnosed, what my goal was, I said I wanted to be pain-free. I’m now having to cope with the fact that I will never be pain-free. Where does that leave me? My doctor told me that Fibromyalgics experience pain at a level 10 times worse than a normal person. What does that really mean? My daughter can’t lay her head on my shoulder. The pressure from my kitty stepping on me causes me to jump. A couple pieces of beef jerky and I couldn’t chew on one side of my mouth for a week. My husband pulled me in for a hug, barely touching me with his fingertips and it felt like he was digging them into my sides. I can’t wear high heels anymore, and any kind of walking makes my feet hurt. I could go on and on.
I always try to finish on a positive note but I got nothin’ on this one.