May 12th is a day dedicated to UN-hiding this hidden illness. It's a day to help make people aware of what fibromights go through to develop understanding and tolerance. It's time to get rid of the idea that fibromyalgia is fake or that those who suffer are lazy/should just get over it/are weaklings/etc. It's a day to celebrate those who beat down fibro in order to live life and enjoy it! It's a day to wear purple and butterflies!
I was researching fibro ribbons and discovered that there is often a butterfly incorporated into the purple fibro/chronic pain ribbon. That made me curious so I dug further. The explanation I found is that it represents the sensory issues that fibromights deal with--how even the softest touch can be painful. I learned years ago that you are not supposed to touch a butterfly's wings because it would be the equivalent of someone hitting you with a hammer. Sound familiar? Yep. And it's not just the sensation of touch that fibromights can be over-sensitive to. Sound, sight, taste, and smell can also cause problems. I know I often feel over-stimulated when there is too much noise or around strong fragrances.
While reading that article, though, I saw one comment that drew a connection to the butterfly's metamorphosis from caterpillar as the death of a fibromight's prior life and start of the new fibro life. I'm not sure how I feel about that. I know I have often grieved the loss of my pain-free life but I don't feel like I've gone from caterpillar to butterfly--moreso the reverse. I feel like I've lost my ability to fly and now have to inch along. I won't dwell on that, though, because it doesn't help me.
I also learned about Lilac, Mulberry, Amethyst and The Fibromyalgia Crusade. There are lots of pain scales out there but I fell in love with this one. The darker the shade of reference, the more pain. So lilac is a light pain day, mulberry is moderate, and amethyst is bad. And they also have LMA for Leave Me Alone, for those days when that's what we want. I'm going to let those around me know about this scale. I like it better than giving numbers 1-10 because it seems more straightforward to me. Yesterday was a Mulberry day. Hoping for Lilac today!
I also want to tell you all that I found out from my husband that one of our coworkers thinks fibro is BS. When he told me I saw red. I was livid yesterday morning over it. I couldn't look at said person, much less speak to him. It was late afternoon before I could trust myself to be civil. I want to confront him. I want to hear him explain. I want him to understand. And I'm mad that his opinion made me nervous about asking for help from the other guys because I was hurting. That made me feel ashamed and fibromights should NEVER have to feel that way. The pain I feel is REAL. The dizzy spells and sensory overload and chronic fatigue are REAL. It's not in my head. I've had 2 doctors confirm my diagnosis. I shouldn't feel like I have to defend my illness but that kind of attitude makes me feel like I do. One person's opinion doesn't change my reality.
So I push forward and do what I can. I refuse to have anyone think that I don't do my share or hold my own at work. I will continue to share my experiences and work to bring fibro out of the shadows. And I don't want pity! I don't share my story to have people feel bad for me. I crave understanding and tolerance. An offer of help is appreciated, but not when offered with pity or condescension. I am a fibroMIGHT and I will find my wings!
Spread the word today and help people see what fibromyalgia is all about! Offer a hand to someone you know who suffers. Or a virtual hug. I challenge you to post either a purple ribbon or a purple butterfly to the Facebook page of a fibromight you know (as long as they're open about it--don't out anyone who isn't ready, please!). You are welcome to use either of the images below that I found.
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