Invisible Illness

On the last day of school the kindergartners had a "beach party." On the upside, Caitlin wore her bathing suit to school under her clothes (which is how she thinks she should dress every day!). On the downside, the whole day was 60-65 degrees, with a cold wind blowing down from the mountains. While this would qualify as a beach day on the cold coast of northern California, it wasn't nearly as much fun for the kindergartners as a nice warm day would have been.

Initially, Caitlin had wanted me to stay the whole time. She wanted me to watch her running around, getting wet, and playing in the tanbark (there's no sand here). Since it was a cold beach day, she ran around doing crafts inside, and played a bit on the kindergarten playground. After an hour and a half, she said that I could go if I wanted to. And I did. I was pretty run-down from surviving the last week of school, and was getting a cold. If I stood a chance of beating this cold before leaving for the Outer Banks, I needed rest. School was out in an hour anyway. As I was leaving, one of the other mom's asked if I was going back to work. When I said that I don't work and that  I was going home to finish some things (that, and resting), she gave me the funniest look and said, "Oh. I just need to be here with boys. I'm so sentimental. I need to cherish these moments."

I'm not sure how I'm processing all of that.

It wasn't the fact that she's sentimental and I'm not (I am, sometimes to a fault). It wasn't the fact that she wants to cherish these moments and I don't. It's the look she gave me. The tilt of her face and lost look in her eyes that  said she didn't understand *at all* why I was leaving if I wasn't going back to work.

The funny thing about fibromyalgia is how exhausting it is. And how invisible it is. Anyone who has fibro or has been around others with it understands when I say I'm exhausted. They understand that my body aches. They understand that my brain gets foggy, I get clumsy, and I need to rest. Sometimes in the middle of the day. There are times I feel like I can barely move! I don't even know to explain it. I don't even know where to start. Really. I didn't understand this before it happened to me. I'm not sure how to begin to explain how I feel. Because, in the eyes of others, I "don't look sick." I don't feel sick, either. I feel like this is a "condition", not a "sickness." Arguing semantics, however, doesn't seem to be the way to go. I feel a bit better knowing that right now, this doctor is on my side. I've seen several in the last few years, explained what I'm going through, and I've felt like I needed to convince them that I wasn't feeling well. I guess I should have presented them with a persuasive 5 paragraph essay. Maybe then a diagnosis wouldn't have taken so long. The truth of the matter is, I've gotten very good over the last 5 years at pretending I'm fine and looking the part, even when I felt like I'd been beaten up in my sleep. I've tried to do everything that everyone else did, and exhausted myself in the process. I dubbed 2009 and the first half of 2010 "the years of trying too hard," as I was so mentally and physically exhausted. Some drastic changes were made, and things have gotten better. And at least now I have a name for what I've been going through.

I'm not even sure where this post is going right now. I'm just rambling. But I know that this is not "in my head." I can't expect people to understand how I feel. That the things they take for granted aren't easy for me. Often times I feel like a little old lady. Most of the time I can't make it through a day without napping or resting (now that I take something to help me sleep at night, I usually only have to rest in the middle of the day). There are days that turning knobs or faucets is excruciatingly painful. Some days my skin feels like it's on fire and I can't stand being touched. There are many nights I lay awake, fully in pain, staring at the ceiling fan. But then again, some days are better. I stopped carrying the kids years ago because I was afraid I'd drop them. Something like going on a little hike without doing it on my terms is exhausting. Not for one day, but for the rest of the week. I want to go with my friends, but it doesn't always work. I want them to know that I want to be included. My fibromyalgia isn't as bad as some others I've read about, but that doesn't make it wonderful, either.  Often times, I can "push through" the pain. I come out exhausted on the other side, but most of the time I knew that would be the outcome when I started. It took me several days to recover from a MOPS retreat in January, but I was glad I "pushed through."

The challenge of having something people can't see is to explain it without complaining about it. I'm hoping that I can do that at some point. Back to the last day of kindergarten - Caitlin really didn't care if I went home. She was having fun. My little water baby also knew that we were going on vacation a few days after school got out, and that there would be a beach and a pool! As for me - I have to take care of myself. I hate the wondering stares. The ones that think I should be with my children all the time, unless I'm at a job (which is the only valid excuse to some). In as much as I'd like people to understand what I'm going through, I need to accept the fact that they don't, and maybe never will. And I need to move on.