Sunday, October 14, 2012

"Don't Let Your Illness Define You" ...Really?

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.   


  1. Ya! Seriously, the illness does define us because it makes us who we are. I have pernicious anemia, hypothyroid, Crohn's, and possible MS pending testing (with this ruled out my doc says it is more than likely fibro). I am very lucky I have a very supportive husband who understands there are good and bad days. I enjoyed reading your post, thank you! And you have a good day darn it!!! :)

  2. Thank you for writing this. I have tears in my eyes right now because everything you wrote is exactly how I feel and how I am. My illness defines me too whether I like it or not. And like you, I was once someone else. :(

  3. I am so amazed that you have put into words exactly how I feel. I have fibro, lupus, possible RA, and carpal tunnel syndrome along with arthritis throughout my body and several degenerated discs in my neck and spine. Well meaning Dr.'s, family, and the one friend I have left say that or similar things. Everyone seems to think that it's no big deal and I can just ignore the pain and go about my "normal" life. Some of them even tell me that the pain is "all in my head" and if I just believe I'm fine that I will feel fine. I always feel like such a failure when people say those things. I can't have a "normal" life or even one day. The pain is with me always. I have small kids and teenagers (5 total kids) so I try to put on a brave face but it's so hard. My husband tries to understand but I don't think you truly can comprehend how these illnesses do define and change our existence unless it has happened to you. I pray that we all find peace somehow throughout this. Thank you so much for writing your fb page and blog so that we know we are not alone.

  4. With you sister in my silent mental illness. Can't see the damage it does. Add in RA and I get you on the not moving well. Obese, yes, same here. Why....your right not eating. Being poor for years from living on $900 a month will do that to you.

  5. You mentioned wanting to exercise. I'm very heavy, no I won't say I'm obese because I don't feel like I am - it's just a word. I am one of the ShapelyGirls Fitness blog team and have just started the Walk Fit DVD which includes some toning. She really focuses on encouraging people to get off the couch - or if you can't you can work out from a chair. She just wants to help people get moving. I love it. It has a beginner walk, 4 bonus mini walks, some stretching (I wish it had a whole segment just on stretching), circle time where Debra Metzer and 4 gals talk about how overweight women think, feel, and why they are uncomfortable with exercising or being around others. It's a wonderful concept. Debra was over 300 pounds when she began working out and she is still a size 14 (which I'd love to be). She's not fat but she's not skinny either. Check out her website and perhaps when you have a little $ you might want to pick up the Walk Fit. I didn't pick one of the harder DVD's because I felt it would hurt me more than help me. http://www.debramazda.com/

    Anyway, I hope this helps you a little. =D

  6. I am glad to hear this! The hardest thing in the world to do is to do this alone.....trust me I know....been there done that and doing it now. There is an awesome site online that you can keep track of your foods called MyFitnessPal.com that I use on my phone and online. With my phone I can scan the barcodes of foods that I eat and it is so very handy to keep track of what I am eating and the nice thing is that you can add recipes in and it will tell you the calories and such for each serving.

    I started swimming back in April because that was about the only thing that I could that wouldn't kill me after my blood clots in my lungs. I haven't been doing very well swimming the last couple months because my swim partner's daughter was playing volleyball and her games came first of course but they are over now so we can get back at it. We go for an hour a night for 4-5 nights per week and I feel so much better when we go and that is supposed to be one of the best exercises for someone with arthritis and fibromyalgia.

    We have a local campground that has an indoor pool that we can go to but you may also check and see if any of your local hotels would allow you to come and do exercises. The nice thing about the pool at the campground is that through the week, there is never anyone there to see us in our bathing suits. lol

    Hopefully your daughter can help you out at home with those exercises and I know from experience that the first week is the hardest and the most painful but it will level out if you stick to it, your muscles just have to get used to it.

    Wishing you lots and lots of success!!! <3

  7. I don't think you look fat. Your picture shows you as being quite cute!! And yes I think our illness dors define us. When I was working, I was on medication, for extreme pain and neuropathy. I ran on adrenaline all day long. I didn't stop and sit for lunch, cuz I couldn't get back up. People never believe I was ill. Now that I no longer have any medical, it is hard to do anything. Going off all the pain meds was very hard. But harder still is never having any real relief from all tbe pain now. I wish you all the very best. And thank you for your blog site.

  8. Thank you Sue. There's a reason why the photo is a headshot only lol. I'm sorry that you don't have medical anymore. Would it be possible for you to apply for the compassionate care programs with the pharmaceuticals to still get your meds?