Monday, May 9, 2011

Fibromyalgia In The Real World

I had an extremely eye-opening and revealing thing happen to me this weekend. Whilst I was dealing with some minor family upset, I Fibro-crashed. All my energy had been spent and exhaustion socked me square in the jaw. I became stiff and inflamed all over my body. I hurt and no position made me comfortable, sitting, standing, lying down, it all just ached. I became foggy and hazy in my brain and the slightest bit of stress caused catastrophe to my central nervous system, meaning I was a bit of a blithering mess! It was a meltdown of all functioning parts. So as I am Frankenstein-lurching around someone very close to me started pouring their angst out, about the situation I could do nothing about, and instead of being able to listen and give comfort or care I lost it. OVERLOAD ALERT! I sat there looking at this very important and supportive person in my life like they were from Mars. I could not understand why I was their chosen therapist for the moment when I was so clearly not coping well myself. I mean I had all but a red siren flashing on top of my head screaming FLARE! Couldn't they see this? Didn't they know?

But the answer was no. In the midst of their emotional reaction to what was going on they leaned on someone you would typically be able to lean on. And although I have complained of fog and fatigue and exhaustion for years, it turns out I had never properly explained the stress factor. See we don't process stress the way an undamaged brain would. Very low threshold, very extreme reactions and the aftermath is a deflated ball of a person kicked into a weed-filled corner of the school yard. They could not figure out why I was freaking out and I could not understand why they were utilizing me as a pillar of strength when I was clearly a puddle on the ground.

Luckily we had a chance to remove ourselves from the situation, I indulged my flare and pretty much spent the weekend at the pool, and they came to grips with their emotional entanglement. We were then able to talk, and assess where our communication breakdown occurred. Through this exchange I learned something very important about myself, Fibromyalgia, and how to manage it in a demanding and stressful world. Never take anything for granted. For in your mind you may have explained all the in's and out's of living with Fibromyalgia until you are blue in the face, dotted all your i's and crossed all your t's. And sadly most of us have lost friends or family that refuse to accept, believe or understand our illness. But the ones that are still there, the ones that offer support and show unconditional love and stand by your side, those are the ones I am talking about. Those are the ones we cannot just assume exist in our brains and understand our experience. Those are the ones we must constantly remind what we can and cannot do. For in explaining all this I realized I learn more daily about how Fibromyalgia impacts my life through my efforts to manage it, so how could I possibly expect another person to be aware of something about me that I myself have just learned? In light of this new revelation I am redesigning the information cards for The Fibromyalgia Crusade. On the back I am going to list, in common spoken terms, how living with Fibro impacts our lives. So please feel free to comment, email me or throw your 2 cents in at The Fun House. We are going to progress awareness of this illness if it is the last thing we do. It is simply too important not to.

Thanks for joining,

1 comment:

  1. Leah, so sorry about your crash but thanks for the reminder about communication. I really like your new idea for the cards. I'll be thinking about that.