my pink toes

Running low on spoons today

I have fibromyalgia, which means that on any given day, I hurt all over. Sometimes a lot, sometimes a little, but every day I’m in some sort of pain. It is mainly concentrated around my hips, and the theory is that although FM is not necessarily caused by a traumatic injury or motor vehicle accident, such events can bring out FM. I was in a serious car accident in 1991. The lap belt saved my life, but did lifelong tissue damage and since then I have been in pain every day.

After pursuing treatment for 2 years past my injury date, it finally became clear that something else was going on in my body beside an acute injury. I was fortunate enough to have a couple fabulous healthcare providers (sprinkled in with the many other unhelpful providers) who knew about fibromyalgia and suggested that might be what I had. I finally got a “real” diagnosis from a rheumatologist last fall. I already knew it was what I had, and my PCP has treated me as such, but I decided I needed the diagnosis in writing to help with my own emotional acceptance. Living in denial on and off for 15 years wasn’t very effective.

I still struggle with this illness. It’s one of those “but you don’t look sick” things. Yes, I know, I don’t look sick, but I’m in pain almost all the time. I don’t talk about it all the time, because I get tired of it. Sometimes I am biting the bullet and putting on the happy face, but if I didn’t, who would want to talk to me? I bore myself with the constant pain-awareness. I have a few people I can be completely honest with and I value that very much. Frankly, so many people don’t truly believe I’m in pain and I’m too exhausted and confused myself to educate them so I save my breath.

And if one more person tells me that they think all this mythical-achy-stuff is going to *poof* magically disappear when I reach my goal weight, I may either throw a bottle of painkilers at them (not likely, but tempting), or (more likely) burst into tears. I’m in tears now with the weight of this dilemma – when people say that they hope my pain will disappear when I lose my weight, they are blaming all the pain on me. They are saying “you are in pain because you are fat.” I weighed 190 pounds when I was in my accident in 1991. I’ve been in pain at every weight I’ve held since then– from 180 pounds all the way up to 312. I have other pains that are clearly related to my weight – like my creaky knees, sore heels, and lower stamina for some activities. But the constant achy pain and the debilitating fatigue are unfortunately here to stay. The pain is NOT MY FAULT. I have to tell myself this over and over again. In my house growing up, most everything was my fault, so I’ve learned how to blame myself for everything. I did not bring this pain on myself, I did not ask for it, and God is not angry with me. I am still in therapy and constantly reminding myself of these things. Please stop making it even harder.

I’m cranky today. I’m in a lot of pain. I wish this was not one of the main narratives of my life. But it is. With God’s grace and help I will learn how to incorporate this narrative into the cohesive story of my life.

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Here are some great links for helping understand those with chronic pain:
Anonymous Letter to People Without Chronic Pain (I’ll probably do my own version of this sometime in the future)
Tips for Friends of Chronic Pain Sufferers
Spoon Theory (AWESOME analogy of what it’s like to live with chronic pain)

I have found immeasurable support and understanding at ChronicBabe.com and most of these links were discovered through their great site.