Monday, March 19, 2012


How do I love thee?
Let me count the ways.
Then I'll use duct tape on your mouth.

I know that people try to be helpful. I also know that it's real tough to explain an illness that is invisible. So in the interest of our sanity and interaction that doesn't set us on goes.

What not to say.

There are articles about "what not to say." They are pretty thorough but I like to add a few comments as well.

1.  You don't look sick. No, I don't look sick. If I looked like I felt I would scare little children and most dogs. I know that to be sick I have to look sick but that's not the way it works. We try very hard to keep it together but thank you so much for reminding me that I have to look sick to be taken seriously.

2.  If you exercised, you'd feel better.  I think this is one of my favorites. I think it's especially attractive to crawl into the gym. It's also kind of fun to fall asleep on the treadmill and to feel like roadkill after mild exercise. Of course, I'd be remiss if I didn't mention that we can't crawl out of bed the next day because we're in so much pain from that glorious exercise that you are so kind to mention.

3.  Everybody gets tired.  Yes, they do, poor things. This is like someone pulling the plug on your energy reserves. We love being so bone weary that we can't move. Also, thank you for mentioning this one and reminding me that a lot of the medical community thinks we're either lazy or crazy. 

4.  You'd feel better if you had a better attitude.  Really? I thought I had a great attitude all things considered. If my attitude reflected how I felt inside it just might kill you.

5.  It can't be that bad.  Thank you Lyrica for making Fibromyalgia seem like a pesky little fly that you can flick off of your shoulder. In the same vein and the spirit of the previous comment I will just take a baseball bat and beat the crap out of your body and then tell me that it can't be that bad.

6.  I wish I didn't have to work and could nap all day.  Oh yes, we're little princesses lying about eating bon-bons all day. We love the fact that our career has gone down the toilet and along with that swirl of water in the toilet, our finances are going down the toilet as well.

7.  We all get aches and pains.  It's difficult to even write about this one. Again, people are sometimes under the impression that we feel like the aging grandparents in the movies. "Rheumatism." Just sit on a heating pad and in our rocking chairs. Yeah, right. Don't they get that sometimes just a simple touch will cause excruciating pain?  Maybe I should turn them into a voodoo doll.......would they get it then?

8.  Fibromyalgia isn't even real.  I wish it wasn't. I also just love it when doctors don't believe it. That would scare me because it tells me that they haven't kept up on the latest research. Plus, I'm almost positive that the FDA approves medicines for fictitious diseases. We're not whiners or neurotic so please don't add insult to injury or, in this case, stupidity.

9.  You should try to sleep at night.  We'd love to sleep. Even when we take medication there are times that we will wake up anyway. We are prevented from getting deep, restorative sleep so that our body can repair itself and wake up somewhat refreshed. We also love watching the minutes turn into hours in the middle of the night. Usually when we grab a magazine it's telling us the steps to get restful sleep. Don't even get me started on that one.

10.  Oh, come on......toughen up.  If you think Fibromyalgia is for sissies, think again. If you only knew how tough we really are.....

11.  It's all in your head.  Well, when we get this comment we can, at least, say it's a true statement. Yes, it is all in our heads. This is an illness of the central nervous system. Thank you, however, for saying it in a sarcastic and condescending manner. I, however, love shoving those words right back at you.

This is not an illness that an aspirin will fix. If it were that simple we'd all have stock in Bayer. We would also be chugging them down. Most of us hate what this has done to our lives and we look desperately for a way to reinvent ourselves and ways to feel better so we feel somewhat productive.

By the way,

We have tried every snake oil cure out there in hopes of feeling better.

But thanks for letting us know that eating different foods will cure Fibromyalgia.

Where's that duct tape??