This is a picture of my grand daughter Leah when she was 9 months old. Why am I placing a photo of her on a post about illness defining someone? Because it's a picture of her crying, and that's what I feel like doing every time someone tells me "Don't let your illness define you. You have fibromyalgia-arthritis-lupus-RA-CFS-COPD-Fill in the blank with "whatever" you may have, but it doesn't define who you are.
Now, that sounds good, doesn't it? To think of ourselves and others cheering us on. Like the old half-time pep talk in the locker room when the football team is down by 20 on their home turf. Cheering ourselves on. I can hear the cheer of the crowd, as the theme song to Rocky starts blaring in my ear every time someone says this to me.
I used to be afraid to even think that I might be "allowing" my illnesses to define who I am. I thought it would show weakness on my part. Well, as good as that phrase sounds, and as well-meaning as everyone is who says this to me and people like me, it's a bunch of hog wash. I'm sorry, but it really is. Stop and think about it for a minute. Seriously. How can an illness (or illnesses) that wrack every single part of our lives, not define us?
I'm not even the same person mentally that I was before my illnesses. In high school I had the nickname of "Little Miss Sunshine" by the "mean" girls, because I always walked around with a smile on my face and I tried to be nice to everyone. I was a cheerleader. Have you watched The Secret Life Of An American Teenager? Remember back in the very first season how Grace was? Take away the talking about religion all over the high school campus and leave the rest of her the way she was. Always bouncy, happy, smiling, cheerful, trying to be nice to everyone, naive ...you get the idea. That was me. Now? Not so much. I sit around sad and depressed. I feel worthless. I hardly ever laugh or smile. It's really hard to smile when you're in constant pain every day of your life.
Exercise. I never really loved exercise, but I still did it. I've even had a membership to a couple of gyms over the years. The one thing I always prided myself on, was my legs. I had so much strength in my upper legs. They were always well toned without an ounce of "cottage cheese" on them. They were my one asset that I was always proud of. I was never stick-skinny, but I wasn't overweight either. I've always been curvy. Now? I'd love to be able to exercise. The medicine packs the pounds on me. Not only do I have cottage cheese on my legs, but I'm obese. I avoid having my picture taken like the plague. I'm embarrassed at how I look, and to be completely honest (which I always am on this blog) I'm ashamed to be seen in public. The fibromyalgia and arthritis keeps me from exercise. When I can't stand up without audibly saying "Ow!" from the pain in my knees ...and I kind of waddle for the first few steps ...and walk hunched over a little bit due to the stiff back that sitting has caused (Oh yeah, that's one of the reasons social security just denied me, btw. They said I could sit without it causing me any problems LOL. I wish!) how in the world am I going to exercise? Besides the fibro and arthritis, when my heart rate rises or I do pretty much any kind of physical exertion, I get short of breath and can't breath. Heck, I woke in so much pain today (well, considering it's 3:12am I guess yesterday) that I couldn't get out of bed until my daughter came in and put BioFreeze on my lower back, mid-back, neck, and shoulders. I was so stiff and hurt so bad.
Even up in my early to mid 30's I was told how much fun I was to hang out with. I had friends. Lot's of them. -And not just internet friends like I have now, but real friends that would stop over unannounced. Friends that would call me up and say "hey, let's go do something". Friends that I listened to loud music with and danced with. Friends that would exercise with me and then we'd end up doing more laughing and making fun of each other then we would exercising. Friends that would spend hours on the phone with me. Now? I don't have IRL (in real life) friends. I have one. She's 56 years old, but young at heart. Instead of enjoying going out, I'm always too tired or in too much pain. Or else I'll know how going out of my house will make me hurt 100X worse for the next few days to a week. When I do go out to the grocery store or someplace, I've had people look at me like I'm a lazy piece of trash for being fat. I've heard people whisper about me. I've had little kids come up to me and ask why I'm fat, until their mother looks mortified and quickly rushes them away while they're still turning their head to look at me. Starting Sunday 10/14/2012, I'm going to start forcing myself to eat breakfast. I'm going to start forcing myself to eat lunch. -I usually never eat until supper because I'm just not hungry until then. My problem with my weight isn't that I eat too much. I eat way too little. Therefore my body hoards any food I put into it, thinking that I'm starving to death. That, combined with the meds, and with the fact that I don't exercise due to my pain is what my weight problem is from. I found several yoga for beginners full workouts on YouTube so starting Sunday I'm going to try to do that at least three days a week too. I don't know how much of it I'll be able to do, but anything I do accomplish is certainly better then nothing.
This is me. I have fibromyalgia. I have arthritis. I have COPD. If I don't "let my illnesses define" me, then I'm denying a huge part of my existence. I'm denying a huge part of who I am. So after carefully thinking about this for quite awhile now, I'm going to say that my illnesses do define me ...and I'm not ashamed to admit that anymore. People will still always say "Don't let your illness define who you are" ...I know that a lot of my fellow fibromites even say this. That's fine too. For me though, it just doesn't make sense to say that I won't let my illness "define" me. It's a huge part of my life and has made me who I am today.