I think I am finally ready to write about this. Maybe.
YIKES!
Really???
hmmm...
Well...let's just run it the flagpole and see if it flies, shall we?
Fibromyalgia.
That's my diagnosis.
I know some of you have been wondering, because I have been fairly publicly sick and miserable, but I have been reticent to talk openly about exactly what is going on. I'm not sure why. Perhaps, because I know that fibromyalgia is still so little understood, even within the medical community. I know that a lot people still think of fibromyalgia as an "imaginary illness." Still others know only what they see in drug commercials: "Fibromyalgia makes life moderately unpleasant, but, if you take our pill, you, too can smile like an idiot."
To be honest, I don't know a lot about fibromyalgia.
"The word fibromyalgia comes from the Latin term for fibrous tissue ("fibro") and the Greek terms for muscle ("myo") and pain ("algia").
Well, there's that, 'though it seems like a bit of an understatement.
But, look, I don't want to spend a lot of times cataloging symptoms and trying to explain what fibromyalgia is.
Here's a link, if you feel like reading about it.
What I do want to do here is to take some time to explain one of the symptoms that, to me, has been most challenging, disheartening and debilitating. It's a phenomenon that some fibromyalgia sufferers never experience, and many others experience only very mildly, but, for some of us, it becomes quite severe. It is...Brain Fog. Yes, the powers-that-be have truly chosen to call this thing "Brain Fog." Couldn't they have come up with a name for it that didn't sound like an afternoon soap opera malady? I mean, I know it is hard to take me seriously when I say I am suffering from "Brain Fog." It sounds like...what? I'm a little addlepated? Befuddled? Spacey, perhaps. That's all true. But, more importantly, for me, what it really means is this:
profound memory-loss (both short and long term)
loss of concentration
difficulty finding words/communicating
difficulty deciphering language, written and spoken
On a practical level, it means that I don't remember little things, like why I drove to the store, or that I wrote myself a list, because I knew I wouldn't remember when I got there, and it is in my pocket (will I remember to look at it? Well, that's anybody's guess.) It also means I don't remember big things, like great chunks of my childhood, most of my education and one of my pregnancies (I kid you not ~ it's all gone. Every bit of it). It means I have trouble having normal conversations ~ I lose track, get lost, forget what I (or you) were saying. This makes me self-conscious, because I know it looks like I am not listening, or don't care. It means I use the wrong word when I am writing or speaking, so I have trouble communicating effectively. I confuse people, and I am easily confused. I have trouble sitting through a movie, or watching episodic television programs. Sometimes, I have trouble reading. I might thoroughly enjoy reading a book, but, ask me what it is about, and I am likely to draw a complete blank. I don't remember names. I read things I wrote, and it is like someone else wrote them.
I think I have avoided broaching this subject for several reasons:
1. It's embarrassing.
2. It's difficult for others to understand.
3. It makes me sound kind of crazy.
4. I don't want people to worry about me.
5. I am not looking for sympathy.
So, why share this now? Well, several reasons, I guess. I want people to understand why I have had to make some very tough decisions recently. I really had no choice. I also want people to know that I really do care. If you're my friend, you are my friend, and even if I don't remember every detail of everything we ever did together, I still love you. I want people to know that I am listening, that you are important to me, and I want everyone to know that, when I have to ask the same question over and over, it isn't because I just wasn't paying attention. If I forgot something you said or did, it's not because it wasn't interesting or because you are not important to me.
I think another reason I have avoided this subject is that there is simply no way to write about one's health problems without sounding whiny or needy. I HATE sounding whiny or needy. So, let's try to end on a positive note!
My doctor believes that, if we can get my other symptoms (especially the pain) under control, the "fog" may begin to lift. We are working on it. So far, the well-known fibromyalgia-specific meds have failed me, so we are looking for other solutions. Diet and lifestyle changes seem to help, as do regular exercise for both the brain and the body. Keeping things in perspective is important, too. You may have noticed that something like, say, a broken arm, can really throw me for a loop. That's because stress and trauma can both trigger flares in fibromyalgia, so, right now, I'm a little further off my game than usual (wait...what's my game? I had a game??); but that's a temporary setback.
I don't need sympathy. This is just part of who I am, and most of you know it always has been. Now, we all know why. What I could use, if you really want to give me something (cupcakes! nailpolish! glitter!!...oh...wait...that's not what I meant to say...), is lots of patience and understanding, and the assurance that, even when I seem like a really bad, inattentive friend, you will try to remember that I really do care, and I am trying very hard to be the best friend/wife/mother/daughter/cousin/sister/spouse I possibly can.
Really. It's just that I've got this zombie munching on my brain all the time, and sometimes that gets distracting.
