Tag Archives: chroniclife

My narrative is my own

Sometimes I feel it. The pressure of just being, of just being with Moebius syndrome. Being unique, and having that uniqueness be intricately tied to yet completely devoid from my conditions. Trying to find that within me that walks that line. I fail at it. I go full-tilt one way or another, trying to find that balance. I tweeted this earlier today as part of chat, and it is a reminder to myself.

Chronic Illness Bloggers Holiday Giveaway #spon

Who doesn’t like holiday freebies? Lots of awesome raffle prizes are available through the Chronic Illness Bloggers Holiday Giveaway – click the graphic and choose which prize packs you want to enter for!

This giveaway is sponsored by Chronic Illness Bloggers. Prizes have been donated by the following: Alisha Nurse – https://theinvisiblef.com/; Aromafloria – http://www.aromafloria.com ; BackPainBlogUK – https://backpainbloguk.wordpress.com/ ; Bridgwater Crafts – http://www.bridgwatercrafts.com/ ; BeingFibroMom – http://www.beingfibromom.com ; Broken Teepee – http://brokenteepee.com/ ; Chronically Content – http://www.chronicallycontent.com ; Chronic Mom Life – http://www.chronicmomlife.com ; ColitisNinja – http://www.colitisninja.com ; The Fay Farm – http://www.thefayfarm.com ; Fed Up with Fatigue – http://www.fedupwithfatigue.com ; FibroCane – http://www.fibrocane.com ; Fresh Assist Spray – http://www.freshassistspray.com ; Gupta Programme – http://www.guptaprogramme.com/ ; HFactorWater – http://hfactorwater.com/ ; Kirsten Schulz – http://www.kirstenschultz.org/ ; Living Well Today – http://www.livingwelltoday.com ; Living Grace Blog – http://livinggraceblog.com/ ; Lupus Chick – http://LupusChick.com ; Megan Schartner – http://www.liveken.com Melissa Swanson – http://www.fibrowarriorslivinglife.com ; Mini2z – http://www.mini2z.com ; Natalie Abbott – http://www.stillicantbesilent.com ; Organic Aromas – http://www.OrganicAromas.com ; Oska Wellness – http://www.oskawellness.com ; The Pain Free Life – http://thepainfreelife.com ; Patient Playbook – http://patientsplaybook.com ; Perfectly Ambitious Blog – http://www.perfectlyambitious.com/ ; Posture Pump – http://www.posturepump.com ; ProHealth – http://www.prohealth.com ; Rebuilding Wellness – http://rebuildingwellness.com ; Strength Flexibility Health EDS – http://www.strengthflexibilityhealtheds.com ; Sylk USA – http://www.sylkUSA.com ; Theraspecs – http://www.theraspecs.com ; Vital Plan – https://vitalplan.com 

Back brace as fashion statement

My favorite brown pants. Black v-neck. One of my favorite sweaters that I can only wear when it’s sort of chilly so it doesn’t itch but not too chilly that it’s not warm enough. And an Ace bandage back brace hidden beneath it.

That’s what I wore to work today.

And that is how I feel I live my life right now, not necessarily hiding things but just not having enough time, mental energy, willpower, who knows what to address.

I can get it together to get to work on time, have successful work days at my new and sometimes challenging job, do the volunteer commitments I have and have a bit of time for other fun things… 

But sometimes I wish I could approach everyone I see and tell them that I hurt right now and everything I’m doing is informed by that. I have no idea what that would actually get me, since I abhor unnecessary sympathy – but maybe a bit of understanding?