Tuesday, September 14, 2010


I'm smiling.
What else can you see?
Probably nothing.
Because you can't see past it.

I should probably not complain that I'm living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don't usually let people see past the smile because they'll see the real me and I hate appearing weak. I also don't want them to see what I deal with. It's a double edged sword. It's an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it's also invisible because we don't want people to judge us. We get enough of that from doctors, we are afraid we'll also get it from everyone else.

What you don't see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It's a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn't real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it's in bed.

This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I'm not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn't know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.

One of the biggest adjustments I had to make, and I'm still making, is knowing my limitations. I've said it before and I'll say it again. I've never liked limitations. It doesn't matter if it's mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn't be. I've always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn't often, I tend to make the most of it. I know, not good. You'd think I'd be getting the hang of it by now, but I haven't. I still hate what my body has done to me.

I found my voice in blogging which is weird because I'm not real open with people. I've always been outgoing but very few ever got to see the "real" me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn't scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I've left many friends and family by the wayside. I've been able to communicate about the pain and depression. Again many things surprise me. I've also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!

The other adjustment I've had to make is in the area of control. I've always like to control the environment around me. That's a huge part of my personality. I've always felt that if I can control things then I won't get any nasty surprises. Well, I didn't say that it worked I just said I liked to operate that way! I've had to accept that I won't know what I'm dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I've had to let go and that isn't easy for me.  So many things haven't been easy and I've had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don't care whether it's physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it's something I have to learn to accept but it's that darn little word called control. I don't have it and it makes me crazy.

So it's 3 a.m. and it's another night of robbed sleep. I will try to close my eyes but I don't have high hopes. I've taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they're supposed to calm down. I'll end this post and turn off the lights and hope beyond hope for a few hours of sleep.

I really need to learn about limitations 
Just don't apply them to speed limits.


  1. Your words always touch me close to home. I completely understand keeping my invisible illness invisible... I am the queen of masks. I also hate limitations and feeling like I have no control. My debilitating pain started with a car accident, too. I'm starting to find my voice in blogging, as well. Allowing others to see the "real me" and bearing my soul has never been easy for me to do. I've always loved to write, and it's often very real and reveals my soul... but I never let others read it. Being able to open up in the blogging world has been amazingly freeing.

    Thank you for sharing your beautiful words. I admire you courage to share such personal experiences with others.


  2. Rosemary, your words say it all..it's a gift you have. I have not done my Invisible Illness blog this week. we had a death in the family two weeks ago and had travel etc..I am wiped out. but I will..
    Hang tight girlfriend..we WILL make it!

  3. I love reading the comments and feel so humbled and honored that my words have touched you both. Thank you so so much.

    Barb.....I'm so sorry about your family tragedy and will keep you in my prayers. Rest. Your body and soul needs it.

    Jamie......it's sounds like we're sisters!! The car accident has really done a number on our bodies! Keep writing....and do let others read...it's incredibly freeing!!

    Hugs to you both!

  4. I'm with you on invisible illness, mine is lupus nephritis. The worst is that I don't accept the limitations I now face. If you discover the secret to moderation, let me know. And, you're certainly not alone, unfortunately. Within my block I have 2 friends that talk about their fibromyalgia, one talks of her lupus. We are all invisible.

  5. Hi,

    I found your blog via the Invisible Illness feature. It's beautiful, verbally as well as visually.

    My posts for II Week are on Blogging With Illness. You really hit the nail on the head with your description of what blogging about your illness has done for you.

    Looking forward to following your blog,


  6. Learning to pace myself was one of the hardest things I had to learn to do once chronic pain/chronic illness took over the driver's seat (and I don't even have a driver's license). I miss spontanity!
    Thx for writing such a moving blog about being an "invisible woman."


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