Monday, July 09, 2012

The Fibro Fairytale



Scene 1: I'll be going to a meeting where it's a good idea to look reasonably professional. I'm wearing my fancy new camisole under a sweater, looking as if I’ve actually planned what to wear (I work from home – looking put together is rare). I say goodbye to my attendant and start my breakfast routine. After about 5 minutes, I notice that the right shoulder strap is putting pressure on the edge of my shoulder blade. I fidget in my wheelchair, trying to find a slightly different position, but there's no real alternative to back resting against backrest. After 10 minutes my right shoulder is screaming in pain.

Scene 2: I just said goodbye to my attendant after a trip to the washroom and go back to my computer. It takes a little while to realize that something is wrong, but when I do, I dread what's coming. The left leg opening of my underpants is positioned slightly wonkily so the bone in my arse is resting right on the edge of the material. Within 10 minutes or so my entire left side is on fire.

Scene 3: lest you think it's all about the undergarments… There was something wrong with my foot rest. The doohickey that kept it elevated was slipping, just a millimeter or two. It took three days before I figured out why I'd gone from being perfectly fine to the pain in my entire body blaring so loud I couldn't think.

Fibromyalgia makes you hypersensitive. Sensitive to pressure, to change, to medication. To pretty much anything. You put pressure in the wrong area or on the wrong day and before you know it, you're in a flare. All your pain receptors are wide open, telling you that it isn't pressure after all, it's pain and screaming pain at that. It's not just the never-ending quest for underwear without seams (these are wonderful), bras that don't aggravate the trigger points or realizing you'll never again wear jeans because they are simply too tight, the pressure sending your body into hysterics. It is also sensitivity to temperature – for some heat, for some cold. This prompts endless games of musical chairs at restaurants. The goal of the game is to avoid the AC vent, because if you sit underneath it with cold air hitting your shoulders, it'll trigger a flare that won't subside for days. It’s sensitivity to medication, having a quarter of a normal dose suffice, something that’s impossible for most doctors to comprehend. I’ve taken to nodding in a friendly manner at their instructions and cutting everything in half (or quarters) at home. Often, it's enough.

I love many of the fairytales written by Hans Christian Andersen. Abrupt segue, perhaps, but relevant in a moment. The Little Mermaid is by far my favourite, with its story about pain, the power of love and sacrifice. But one of the stories that always made me laugh with its imagery was The Princess and the Pea. In this story, the girl knocks on the door of a castle in the middle of a rainstorm, claiming to be a princess. The Queen, being a clever woman, knew how to test this. She put a pea on the bed and piled 20 mattresses on it and 20 feather comforters on top of those and send the girl to the skyscraper bed. The next morning, the girl came to breakfast complaining of something hard being in the bed, making it impossible for her to have slept a wink, claiming tobe being black and blue all over. And because she was the sensitive, they knew she was a real princess.

So basically, I figure everyone who has fibromyalgia is royalty. Because, based on my experience of lying on half a cat treat last night and now feeling black and blue all over, the girl might have been royalty, but she also had fibromyalgia. And this is what gave me an idea:

A diagnosis of fibromyalgia should come with a welcome package put together in a lovely basket. In the basket would be scarves to keep your neck warm, seamless underpants, a list of helpful medications, a resource guide of things to do and not do to control the flares. On top of it all should be a sparkling tiara.

The only question is whether the tiara should be worn at all times or only during flares. What say you?
   

9 comments:

Wendelene said...

Tiara's are everyday wear. For special occasions, you need a full blown crown, complete with lots of sparkels

Adrienne said...

Ha! I have recently been (tentatively) diagnosed with fibromyalgia, and I had similar thoughts about the princess & the pea (you know, while lying there at night unable to sleep b/c every position hurts *some* part of my body.) I'm not that sensitive to my clothes, tho. Knock wood.

Lyn said...

Lene, Although I seldom wear a bra, there are times when the sheer clothing make it necessary and I just, after a long search, found "Barely There" bras from Haines. Heavenly comfort and you can slip them up over your feet or down over your head--whichever is easiest. I don't have fibro, but I have 2 pacemaker scars that are sensitive to bra straps, and don't even feel these. Yay!

Carrie Beth said...

I have to say I think it's funny that your blog emails get sent to me at 10:54pm each time. But I enjoy the reading as an end to my day. The timing of this article was perfect because I was just talking to my husband about how having RA and fibro makes a person think too much and I think that's why there's so much fatigue. I have to think about the things you talked about, or for me things like I need a pillow on my lap to lift my laptop high enough so my elbows have support but wrists don't over bend, soft enough so my legs don't flare, material/covering cool enough so that I don't overheat and need the fan which blows too much and makes my arms hurt, etc. I could go on, but I think between your post and that example we can confidently say we are one and the same. :) I like the tiara idea for anytime we want to feel special. But then again, it needs to be the right tiara, one that doesn't hurt the head or touch the ears, or pull the hair and trigger a migraine, well... You get the idea! ;)

Diane said...

I say you go ahead and wear that tiara whenever you want to!

Gaina said...

I hate wearing bra's. The pressure on my torso makes me really foggy-headed and I'm in a stinker of a mood after a day wearing one.

I'm also very particular about the fabric of my clothes and even pillowcases. I've got a pair of washed-to-death, misshaped pillowcases made of t-shirt material and I absolutely refuse to let my Mum throw them out cos I haven't been able to find any more and I just cannot sleep on anything else!

I am now contemplating what a 'Father Comforter' might look like (read your blog again) and chuckling to myself ;).

Cathy said...

Wear the tiara with caution. It sounds like with fibro you might be sensitive to it at times too. Love the seamless underwear Lene and appreciate that you are never afraid to share with us!

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