The Skating Rink

I took my younger son to a birthday party at a skating rink last weekend.  The skating rink is one of those places that I thought was awesome as a kid but see much more clearly as an adult.  Now, this was a different skating rink than the one I grew up near but I speculate that things are pretty much the same across the industry.  I used to be dazzled by the dim lighting with flashes of color and the loud music playing.  The skaters whizzing past and the blips and bleeps of arcade games created a buzz of pulsating energy.  And then there was the actual skating--the exhilaration of flying along a slick surface while wearing wheeled shoes, the wind blowing my hair back as I careened along, the thrill of stopping by flinging myself into the nearest wall.  Loud, dark, and a little dangerous; it was great!

These days I see the whole adventure in a totally different light.  From the time we stepped out of the car and I could hear the ribcage-rattling thump of pop music, I started to have misgivings.  If the music was audible in the parking lot, what would it be like inside?!  We entered the rink and the darkness hit.  There were flashing neon lights, multitudes of things glowing under the black lights, and the music pulsed throughout my body.  I became disoriented by light and sound, and further overloaded by the whizzing of children going past on skates, narrowly missing our toes, and the zig-zagging of children running through the skaters.  We sought out the birthday party among the craziness.  And the smell--sweat, greasy food, and feet.  I won't even mention the state of the restroom.  Just imagine a setting in which you fear the possibility of contracting a disease.  Perhaps it is a sign of being in my mid-thirties, but I found myself noticing the extreme youth of the employees--not one of them looked over 16!  Ah, a den of chaos chaperoned by hormone-addled teens with only a cursory understanding of responsibility.  What could possibly go wrong there?

We found our group and my son got set up with skates and a pvc contraption designed to help new skaters stay upright whilst hurtling their wheeled bodies along the overwaxed rink floor.  I had chosen to remain on the bench and watch my little man slip and trip around the rink.  After a bit, though, the dreaded question came--"Mommy, will you come skate and help me?"  Drat!  No way to turn that down.  So I paid the insane rental fee for a pair of inline skates and took to the floor.  The thrill of the wind in my hair was still there!  I happily zoomed around the rink for about 30 minutes without either falling or slamming my tender body into a wall.  I was almost able to ignore the dingy decor and the questionable cleanliness as I flew past those carpeted walls.

I'm not going to say that I wasn't sore the next day but the minor pain was well worth it.  It was one of those times when I was able to push myself a bit to be able to participate with my child.  That is a big deal for a fibroMIGHT.  Some days we just can't do what we'd like to be able to do with our kids.  Sitting on the floor to do Legos is almost always a no for me.  Running around outside is another.  So getting to skate with my boy was a real treat.  Even though I had to face the sensory torture of dim lighting, loud noise, and the sensation of being inside of a beehive.  Yep.  The skating rink was definitely better through the eyes of childhood. 

Fibromyalgia Awareness Day!

Greetings and Happy Fibromyalgia Awareness Day!

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.