If your body is a boombox, and the nervous system is music…

Think of the nervous system like a boombox up on your shoulder, 80’s style, playing sweet jams at all times. When the body is healthy, balanced, and running smoothly, the music playing from your system’s radio station are your favorite hits at the perfect volume, and your drop-in harmonies are totally on point.

When the nervous system is out of sync, those beats flowing from your station are tragic- like the song you hate most, on the loudest setting, playing over and over again. You can’t change the station, no matter what lengths you go to!

When you have a chronic neurological condition like Parkinson’s, Multiple Sclerosis, Complex Regional Pain Syndrome, or Postural Orthostatic Tachycardia Syndrome for example, it’s as though someone traded out your cool retro stereo system for an old broken down radio. You can play records on it sometimes, and it’s AMAZING to listen to any music again when you’re not in a flare or a relapse, but even then, all the records have scratches on them, so the music is constantly skipping and warped. The stereo’s wiring gets so bad over time that the record player doesn’t work anymore, and your radio only receives static.

A chronically malfunctioning nervous system is like listening to a broken radio stuck on static at full volume constantly. 

When the “music” or the nervous system’s wiring is flowing properly from the brain throughout the body, pain receptors react to appropriate painful stimuli, telling us when there is a problem, and the pain subsides when the problem is resolved. When we have “faulty wiring” we may experience hypersensitivity to touch, sound, light or even smells so intense that it can cause a severely painful reaction. Think of raw wires on the end of electronics sparking and flaming just to the slightest touch.

The malfunctioning nervous system might react to normal stimulus with severe increased pain, increased stress may cause a seizure, or in others severe tremors and body spasms may occur. For some with POTS, (Postural Orthostatic Tachycardia Syndrome), a loud noise or changing positions can cause the body to completely check out, going into fight or flight mode, and beginning to pass out, or passing out completely.

Going back to the stereo analogy, imagine being invited to a party where the DJ had a broken stereo system, playing static on blast or his stereo catching fire in front of everyone. That’s exactly what it’s like to live with a chronic neurological disease…well, sort of.

Meditation, spirituality, organized religion, trying to improve sleep, and other stress reducing efforts are ways we try to turn down the knob on the stereo. Medications, alternative therapies, eating well, surrounding ourselves with positive support are all ways we can continue turning the knob down little by little. The static kicks out on full blast each day, and we use our tools to adjust or manage the incoming noise levels. We may not have the ability to turn the station away from the blaring static and back to music, but we can attempt to turn the volume down so it isn’t blasting constantly every day.

Invasive and surgical approaches to treating neurological diseases are like kicking the side of your stereo to try to get it to work again. Jolting it hard enough may coax the system to finally play music once again, or you might kick it so hard that you completely break your stereo. For many, surgery and invasive treatments are worth a risk of causing additional problems for the possibility of returning to good health and functioning.

That’s my super-scientific explanation of the nervous system, and how it’s exactly like a boom box. So…. this analogy might not end up in a medical school text book, but if it helped anyone better understand an aspect of neurological disease, or put a smile on your face, then virtual high fives all around!

You Know You’re a Spoonie When- Fun List

I’m not Jeff Foxworthy but some things about being health impaired are so ridiculous, we might as well try to laugh. Here are a few I thought of along with some additions from my Spoonie friends. Please share yours in the comments section for Invisible Illness Awareness Week!

10,000 Spoons Poster

You Know You’re a Spoonie When:

-You have more cute socks and pajamas than sexy lingerie’ and heels.

-You are on a first name basis with all of the local pharmacists.

-Your family uses YOU as their excuse for getting out of things they don’t want to do with other people.

-If a stranger comes to your front door, you just hide until they go away.

-You have more salts in your bathroom than the DMV road crews in the winter.

-Your spouse/partner fills your meds for you as a romantic gesture of his/her affection (goodbye flowers!).

-You have become mysteriously artsy/crafty over time since diagnosis (was increased creativity one of your symptoms?).

-Your doctors and favorite nurses are on your Christmas card list.

-You know where all the elevators are wherever you go, yet somehow they always end up super far away from your actual destination (what is that about anyway??).

-Your pets seem to have a better understanding about how you are feeling than anyone else.

-Your loved ones have a favorite joke about your disability that makes you laugh. When they say it in public, people think your loved ones are horrible.

-You have more hair in your bed, in the drain, and in your brush today than is actually on your head!

-You start to talk to your Spoonie friends online more than you talk to your friends and family.

-You’ve learned so much about medicine that your doctors talk to you like a colleague instead of a patient.

-You’ve developed heightened super-sonic senses. You’re sure you are a super hero and keep looking for a lit up spoon signal outside. (To the sick cave!)

**************

From my Spoonie friends: You know you’re a Spoonie When…

-All the people who work at the drug store and pharmacy know you and your family by name. -Molly Williams

-Whenever you are in public people stare. You are starting to get a complex that you have grown extremely good looking. inspired by –Living Life Beyond Disability

-You joke about going to see your “drug dealer” a.k.a. your pharmacist. -April Hughs

-When I rate my pain 1-10 and 7 means I’m having a GOOD day. -Keely Blackburn

-You know all the different medications and their side effects. -Julie Pierpoint

-You have to bite your tongue when a friend keeps complaining about his/her allergies. inspired by –Sick and Sick of it

-You talk to your doctors, nurses, and pharmacists more than you talk to your own family! -Allisin Wonderland Hatfield

-Your deaf and blind dog thinks your crutches are trying to attack him! -Tegan Bert

-You go to hand your pharmacist the prescription card and she says “Nah, I remember you have one of those.” -Christine Brannon-Miles

-You make fun of the television commercials about medications that “help” symptoms like yours. inspired by –Finding Out Fibro

-When your mum says you will never get a flu because all of your meds will probably knock it out of your system first. -Marika Dolinski

-You use ferocious animals and monsters to represent your illness. –inspired by Elle and the Auto Gnome

-You are so tired of explaining what’s wrong with you that when anyone asks, you distract them by responding: “where did you get your hair cut?” or “do you garden?” -Melanie Barker

What are yours?

***********

10,000 Spoons Poster

If you enjoyed the above poster or want to know what a “Spoonie” is, read the article it was based on: “10,000 Spoons, If Only! Why the Chronically Ill Love Spoons”

*********

This article was featured on InvisibleIllnessWeek.com 2014. Sharing again here in honor of Invisible Illness Week 2015.

Pajama Chic: Fashion

Because if you are going to be laying around wearing the same clothes for several days, they might as well be adorable clothes, right? Even when I’m in survival mode, being carted off to the hospital, I’d like the nurses complementing me on my robe, ya know? This is me aspiring to a certain image of chronic fabulicioushness.

Firstly, I’m thinking turbans would be an excellent, practical (and super chic) choice for my bedbounders fashion collection. A turban would keep my hair from getting matted and keep those pesky stray clumps to a minimum (you know what I’m talking about, chronic gals). Also, I want to look like Audrey Hepburn on holiday.

headwrap | ladysmay

 

 This Etsy shop mademoisellemermaid has so many cute things for a Spoonie.

Turban | Mademoiselle Mermaid

 

Next, let’s talk eyewear. I happen to use some intensive eyewear on the regular, so an eyemask is my best friend along with lightweight shades. PS, the #1 best eye mask is this style because it bulges outwards around the eyes so it doesn’t touch- allowing for blinking and your eyes can breathe without getting gunk on the mask. It doesn’t bother your nose, and the backing is velcro to fit any head size comfortably. I happen to be very picky about my face masks and have several different types. This is my very favorite for comfort. And look, I found a cute one on Amazon!

Sleep Mask | City of Sleep

 

Well, I don’t yet have a kimono, but I FEEL like I already own one. You either are a kimono person or you aren’t, and I definitely hear my kimono song calling to me. The song sounds sort of like a circle of drums from which wafts a scent of patchouli mixed with body odor. MMMmmm!

 

Kimono | ASOS

 

Now for Palazzo Pants. I heard somewhere they look good on every body type. I also like the Harem Pant idea because I end up in such crazy positions due to my Dysautonomia/POTS, I think they would really live out their Harem pant destiny on my legs if I owned a pair. Mostly though, I just want to know I’ve got something cute going on under my covers. I already have one pair of Palazzos and they are getting it done! (Not sure what “it” means, but the pants are fab and my man always makes nice remarks.)

Palazzo Pants | Palazzo Fashion

 

Harem Pants | Napat Clothing

 

I didn’t have many stretch pants until recently, but I’m getting into them now. Anything that makes me look like I am on my way to the dance studio is my kind of delusional clothing. Just laying here on the floor (P.O.T.S.) because I’m so worn out after Swan Lake rehearsals… If you are wearing them outside of your home however, I guess the rule is: your tush should be covered. I’m an inside cat, so I can do what I want with my tush, thank you!

Leggings | Legit

 

Leg warmers and socks. For myself and for many people with chronic health concerns, footwear is a sensitive subject. I’ve gone through all kinds of phases with my footwear because of Complex Regional Pain Syndrome. If you need compression gear of any kind, Amazon.com really has the very best selection. Legwarmers give an added layer of protection and they also help transport me back to my ballerina days. (Is this what my counselor meant by “Guided Visualization??”)

Legwarmers | Grace and Lace Co.

 

Slippers, yay! Or you can refer to them as “house shoes” if you are fancy like myself (ehem). This one is tricky since my feet are so picky about what they want on their feet from one day to the next. I was like that BEFORE I had anything wrong with my feet though (bu-dum-ching). Shoe fetish humor. It can be difficult to find slippers I think I could wear, but these might work for me and they are very cute, too.

slippers | Hill Tribes Shoes

 

It’s always fun to look at clothing and get inspired. And even when we are feeling bad and cannot go anywhere, I’ve been told by other Chronics it helps them feel better about themselves to put effort into their appearance just for themselves. Do you find that for yourself? What are your favorite fashions that make you look good and feel comfortable also? For now, for me, these might be aspirational, but maybe in time, I’ll be a turban wearing, kimono sporting goddess of my bedroom.

*

If you enjoyed this post, check out my sassy fashionista Spoonie friend at Sublime Mercies.