My body is weird. I've discovered, since I've connected with others that have Fibromyalgia, that my particular kind of weird body issues are actually pretty common among those with our illness. Beyond the unexplained, constant, all encompassing, and mobile pain and unending fatigue, there are other things I've always thought of as quirks that are common too. Cracking jaws, ringing ears, twitching, clumsiness, tender skin, oversensitvities: I've found many others with Fibro that have the same issues. I feel like I've finally found my home planet. I fit in so well with the natives.
I've yet to note if these oddities fade as the main symptoms, pain, fatigue, and cognitive "fog" are under control. There are so many quirks, along with so many important life things, I haven't paid attention. It is a curiosity, though, if the illness causes the weird issues, or if people with the weird issues are inclined to get the illness. Either way, it's nice to find that I'm not alone in my twitching strangeness.
Of course, more importantly, is finding people that can relate to the serious aspects of Fibromyalgia. It's hard to empathize when you don't know what it's like hurt all over. All the time. There aren't words to express the feeling, but on my home planet, we all feel that way. We get it. I can't accurately convey why I can't miss water aerobics for something fun, or why I can't stay up late and make it up the next few days. It's impossible to express just how crushing it is to have the core of your identity as a kind, giving, and smart person be challenged by a chronic illness.
This is my real grief, this loss of self. My entire life people have praised me for being nice and being smart. My one contribution to friendships is my kindness. I'm not funny, clever, or exciting. I don't tell stories well and I don't have charm. But I'm NICE. I take homemade soup to friends when they are sick, I watch their dogs, and go to events when I'm not comfortable. I make silly embroidered molecules that relate to their interests or skills and I find books that they will love. I am NICE. But since the illness kicked in, I don't have the energy to be nice. I missed a baby shower, birthdays, and an engagement celebration, and I haven't even started the planned baby gift. In the past four months I have been absent, and I worry about who I am without my kindness.
And then, there is intelligence. I didn't know that Fibromyalgia comes with "Fibro Fog," this cognitive lapse that comes with the pain flares. I panicked when it happened to me, the morning I woke up unable to finish a sentence mentally or orally. That issue we all have of not being able to think of a word dominated my speech: it was nearly constant. I dribbled water down my shirt when I took a drink. I got it up my nose the next time. I stared into space, vacant of eye and mind. And I panicked. I convinced myself what I had was not Fibro, but MS. I worried it would be permanent and I would never think straight again. I've since learned that while the fog can last a long time in a really bad flare, it doesn't last forever. What does last forever is the increased brain deterioration that happens in Fibroymaglia patients. Thank you jerk Physical Therapist, I'm not sure I needed to know that tidbit. This smart person who advanced rapidly through school and impressed employers with her intelligence is going to lose it, periodically, and more rapidly than healthy people over time.
Who will I be when I can't physically do the nice things I do for people, and when my intelligence fades? What is left of me when the foundation of my self is lost?
It's a wretched grief, but at least it is one that I know others know deeply, and while they can't fix it, at least they can honestly say: I'm sorry, I understand.