When I first found out I had Fibromyalgia, like many, I thought…okay, I can do this, there has to be a cure. I wasn’t sure what Fibromyalgia was, but I had seen the commercials. You know the ones where it shows a smiling woman taking her Cymbalta or Lyrica. It will get better from here, we have a diagnosis and now we can fix it! My Rheumatologist explained to me there is no cure, that it can be managed but I will always have Fibromyalgia. She was also honest in that a lot of patients, about half are disabled and it was a 50/50 chance that I might not get much better. That was quite a blow for me. It took me a couple days for it to really sink in but I realized, I am always going to be sick! Even if I get better, it can come back at any time.
Once I got over the initial shock of knowing I have an incurable disease (syndrome, whatever you want to call it), I was determined to be in the 50% that got better. I decided I would follow my doctor’s instructions, take whatever was needed, do whatever I could to get better, to feel better.
After almost a year from my diagnosis, I had to have my right hip replaced due to Osteoarthritis, I literally had very little to no hip joint left. After going back to work, my boyfriend helped me realize that I am torturing myself. I was doing more harm by continuing to work. I never had time for anyone or anything. I got up, showered if I was lucky, went to work, came home and literally collapsed! That was tough and continues to be a struggle for me.
During all of this, not only was I trying to understand what was going on with me but also trying to explain it to my family and friends. This was next to impossible since I didn’t truly understand it myself. I was trying to be the same old me, be there for my kids, be supportive for my boyfriend, be a good friend, take care of the house, the pets…all of this while my body was literally spiraling out of control!
After almost 2 years of trying the different Fibromyalgia drugs, seeing a pain management specialist and trying whatever therapy I can. I am still hovering around a 6 or 7 on the pain scale most days. I am still asking myself, what am I doing wrong? I know people who are able to work and can get by with a supplement and breakthrough meds. I so badly want to be one of those lucky few that go into remission, one of those who somehow manage to lead some sort of a normal life!
During those two years, I put myself through a lot by wanting what I did not have! I kept telling myself that there’s something wrong with me, I’m not trying hard enough. Maybe I really don’t want to get better. What if there’s something out there I am missing, I just need to read more. If I spent a lot of time researching treatments or diets and the latest supplement, other areas of my life suffered. It was truly like having a full time job again. It’s a delicate balancing act, trying to manage “spoons” when you’re sick. (The Spoon Theory) http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/
I became depressed. I stopped doing things that I enjoyed. I worried constantly. My pain grew more intense and I turned away from those I love. I was truly mourning my old self. I felt unworthy of love, useless and I just wanted the pain to stop, I wanted all of it to just stop! I did realize one thing that I was doing right through all of the depression and self-hatred. I was mourning my former self. I needed to do that and continue to do that in order to move on with the rest of my life. I can’t continue comparing myself to what I was, what I could do. What others can do. This is me now, for better or worse, I had to accept it. It is still a work in progress, but that is the key. I am working on it! One spoon at a time, one day at a time!
Trying to get our friends and loved ones to accept this, well that’s another subject!