I Know I Now Have Fibromyalgia, but I Am Still Me

Hi guys,

I just wanted to drop you a line and just have a quick chat with you. I wanted to remind you of and to bring up a few things that I find difficult to say in person. I’m sorry I haven’t been able to say these before, but I need to get them off my chest.

So many of my online friends with fibromyalgia seem to have families and friends who do the opposite of what you’re doing right now. They get looks of confusion when they have a good day and then crash the next. There’s a mentality of, “You can’t really be sick then,” that appears, and I can see why it’s causing them so much heartbreak. But do you realize that wrapping me in cotton wool does the same thing? I’m not a delicate porcelain doll who needs protection because I’ve added fibro to my list of health conditions. I’m still me. My part-time wheelchair use, my aches and pains, my fibro fog, they’re just another part of day to day life.

Yes, there are days when I find getting out of bed to be difficult. But there were days like that before diagnosis. I might be a little slower on my feet (or wheels) than I used to be, and I may tire quickly, but I still love the same things I loved before. I still have the same sense of humor. I still write, I still crack up at my favorite comedies, get way too invested in books and dramas, and I still love nothing more than playing with my rodents. I just have to do things at a different pace.

There are days when I almost feel like my old self again. The pre-fibro me who could ignore the pain and the niggling of my body and be the life and soul of the party.. Hours later, I may retreat behind my outer shell to recuperate, but that’s always been me. It just happens that it’s for a different reason, and that it may take me a while longer to come out of the shell.

I really appreciate that you want to help me. In fact, I love it that you do. I know that when you come to me with a suggestion on what I should do to reduce my pain levels, you have my best interests at heart. But if I say, “Thank you, but that’s not a route I’m willing to take,” there’s often a reason. Gabapentin has side effects that probably won’t mix well with my post traumatic stress disorder, for example. I don’t want to try Oramorph because I don’t want to risk opiate addiction. I have the genetic predisposition to addiction, and I know that codeine doesn’t do anything for the pain but, instead, makes me extremely loopy. I know the path I want to take with my medications, but I’m waiting to see my specialist so we can discuss it. So please, don’t take it the wrong way when I tell you that your suggestion isn’t right for me.

And lastly, please don’t tell me that I’m overdoing it if you see me walking. I don’t need my wheelchair 24/7. I can go without it at times. Admittedly, it’s not very often, and I often can’t go without it for long. Although, I’m hoping once I’ve gotten on the med regime I’m hoping to get on, that might change. But there are times when I can, and it feels so good to be free of it and to use my legs, with or without my stick. Even if it’s only for a few moments or once in a blue moon. I know how to pace myself. I know that if I’m going to walk, I need to sit at regular intervals and take breaks. I also know that I shouldn’t do it when on my own. I’ve been using a stick longer than I’ve had my fibro diagnosis. In fact, I’ve been using crutches or a stick on and off since the age of 12. And for six of those years, I was still a dancer.

I love you guys. I know you have my best interests at heart, just as I want only the best for you. Things really aren’t that different now. I’ve accepted that I’m probably never going to be back in full-time work, but I’m still me. I’m still going to pace myself. I’m still going to be stubborn and try and find a way to beat the odds. When you’ve been doing it your whole life it’s second nature to you. And let’s face it, could you really see me doing anything else? And I’m still determined that I’ll find a way to be out of that chair rather than become more reliant on it. It may not happen, but I won’t give up. And if I do get on my preferred choice of meds, I’ll keep you all informed as to how it’s going.

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Thinkstock Image By: Cofeee

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