What 2 years with Fibromyalgia are teaching me

It’s been 2 years exactly today that my doctor announced me that yes, it was Fibro(myalgia) that was knocking me down and burning my bones.

Maybe you don’t know what Fibromyalgia is, here is what Mayoclinic.com says about it:

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Yep. I sometimes feel like I am losing my mind too, in addition of being a physical mess. I don’t like telling people because I don’t want their pity. This look in their eyes. But I notice how with time, more and more people tell me «oh I know somebody else who has it !». Because yes, it is becoming more common. Unfortunately.

I am lucky my husband has a very good health insurance through his work, that allows me a regular follow up with my doctor, and pays for my meds (when I learned how much it was for a month… I felt more blessed than ever before).

You know that for me, writing (unsent) letters is one of the ways I deal with emotions. My life with Fibro is no different.

Dear Fibromyalgia,

Officially two years ago, Dr P. did the trigger points test on me. After other tests, blood works, plenty of questions, these points were the last step to know if it was you or not. Before that, it’s been months of exhaustion; the kind that keeps you from sleeping even if you are tired as Hell and you wake up more tired than when you went to bed. Months of excruciating pain, burning bones and you know what else. It put my marriage a bit on a rocky road because I refused to think it was just me being tired because of the everyday life, I knew there was something else going on. I know that my tendency to look on the internet for what symptoms could be is such a bad habit and it did not help for sure. The good thing is (well… everything is relative, right ?), that I had friends suffering from you and knew the symptoms. I had friends to turn to with my questions and fears (thank you Samie).
I felt relieved when my doctor told me that yes, it was you. Because it meant I was not crazy, because it meant that I was not inventing that pain knocking me down everyday. It was not all in my head after all…

Thanks to you, I learned that I can trust doctors, some are really there to help and to do all they can to find solutions. Dr P. looked for answers, she replied to all of my obvious and weird questions about Fibromyalgia because she saw how bad of a shape I was in. Despite us moving far from her office, I keep her because she knows about you, about my journey with you, and it is very important to me. I am aware they are not all like her.

Coincidence being what it is, the announce was precisely two days before my appointment at the tattoo parlor. I did not know yet the meaning it would take in my life. The pain I was in was horrifying though, and made the tattoo more difficult than it should have been.

Thanks to you, I learn to listen to what my body tells me. I am not there yet, but I am getting better at slowing down and I find new ways of doing things differently.

Thanks to you, I learn a lot. When I thought that my pregnancies actually were my greatest teachers about my body, you proved me wrong. I feel pain in places I did not even know we could feel pain there. I feel pain for no reason; when you hurt your knee to the table foot at least, you know why you scream. With you… no concrete reason. I wish I was a scientific doing research on where you come from and how to help people to live a more normal life with you tagging along. But I’m not.

You are sneaky. I hate you. But what would Hate be without Love ? And Love is hard (yes, I am quoting a song by James Morrison here). Love is different since you invited you in our bed. I won’t enter into details but feeling pain when being touched makes everything more challenging. People never talk about that, and sometimes, I do feel like we should not be ashamed of saying it: intimate relationships are more difficult when you have a chronic illness. There, I said it.
However, thanks to Fibromyalgia, our family is bonding together stronger. I often feel guilty because of you though. Because I have to say «no» to my daughters, because I can’t move as I’d like or because sometimes I have to brush them off when they simply want a hug. We learn together, they understand. Thanks to you, my 8 year old know how to cook basic stuff, how to take care of herself more independently (ie without asking me for every single thing). I love them, and they love me for who I am even when they are mad at me. I learn that it’s okay and I am now, after two years, sure that you are here to teach us all something.

We all have to find a new normal with me being… ill (it is still hard for me to say, think that I am. sick).

Thanks to you, I learn to ask for help. I learn to delegate and not to do everything by myself anymore (even if it means cooker later than plan because I was unable to open the tomato sauce jar…). It is a big one for me. Maybe one of the hardest lessons of them all because I like doing things myself and I hate being the weakest link. This is me being butthead with my husband who keeps reassuring me that I simply need to adjust. But how long will it take for me to adjust ??

Thanks to you, I learn that it’s okay to have dirty dishes in the sink once in a while, that a house that is not immaculate is just a house lived in. I learn to let go.

Thank to you, I know that Art Heals. Strangely, when I paint is when I don’t feel paint for a while (and when I sleep… but you keep me from a good sleep, so…). Art journaling and Mixed Media painting saved me in so many ways, and allow me to cope.

Thanks to you, I am coming back to myself. To my life as a… well, a user of herbs and oils and gems. I learned Practical Reiki thanks to you and now can help myself and give to others as well. Thanks to you, I know the importance of stress and anxiety management. The importance of the food I put in my body. These are precious lessons I may have passed around if you would not have invited yourself over… so thank you Fibromyalgia.

Nolwenn

Acknowledging the pain I am constantly in and how to manage it on an everyday basis is a huge amount of work. Without it though, I think I would not be the same. Even if I refuse to see myself as weak, I know things have to change. There is a before and an after; the after being now…