Liste des hashtags les plus populaires par sujet #SHOWYOURRARE

And so it begins... . . . #showyourrare #rarematters #guinnesworldrecord #worldrecordattempt #rarediseaseawareness #1in12 #calgarymarathon #sanofigenzyme

What is the most frustrating thing you hear about your invisible illness?

Many of us strive to keep it all natural. We do our best with nutrition and all the right things yet we aren’t healed or cured. Sometimes we just need a little help; we need medication. And guess what? That is okay! There is such a stigma and negative outlook on needing medication. Do whatever it takes to live. Do whatever it takes to survive. Don’t let anyone make you feel bad for needing meds.

Oops! I missed #rarediseaseday. Why? Because living with both rare & not-so-rare diagnoses - which took years to receive in the first place - ain’t easy. I’m tired. So here’s my belated post. I didn’t paint my face to #showyourrare, but here are some recent-ish photos of me. Sometimes I am too sick to function. Sometimes I can bike and work and travel. Sometimes I have an IV in my arm, or bruises on my face from smacking my head when passing out. Usually it’s just #butyoudontlooksick. But I am sick - every. single. day. When I used a mobility device, people assumed I was paralyzed. When I finally gained the strength to stand up out of my wheelchair, people accused me of faking it. I once had a specialist literally shove me out the door as I begged him to just LISTEN to my heart rate for the unreasonably high tachycardia he didn’t believe I could have. . ⬇️ continued in comments

Today is #RareDiseaseDay ! I felt like it would be important to talk about two of my lesser known conditions. As most of you know , I live with #MeCFs , #EDS and #MCAD. • First one is #cyclicalvomitingsyndrome , a believed metabolic condition that causes intense bouts of nausea and vomiting , lasting 4-10 days. A few factors are associated with the cause ; problems between your nerve signals , hormonal system disregulated or unable to cope with stress hormones and certain genes. CVS can be induced by a different number of environmental and hormonal factors , and usually causes some malnutrition by the end of the cycle. When unmanaged , there can be four phases - the prodome phase , where you feel a CVS attack incoming , the vomiting phase , recovery and the well phase which is the time between CVS attacks. • What makes #CVS scary is that it can lead to an #MCAS attack. #MastCellActivationSyndrome causes in most cases for Mast Cells (a type of blood cell) to react negatively and releasing histamines. Different factors include food , fragrances , exercise and chemicals. Vomiting is of course another I started developing allergies to absolutely everything in the past few years , gaining sensitivity to more foods and fragrances. I hate to be that girl but please don’t bathe in Chanel! ‍♀️ • What are you advocating for on #RareDisease Day? #SHOWYOURRARE • Video of me struggling to walk during a flare at the vets. Showing you the real struggle some days . . . . . #spoonie #chronicillness #chronicpain #invisibleillness #disability #disabled #butyoudontlooksick #chronicallycute #chronicallyill #spoonieblogger #canadianblogger #halifaxblogger #fibromyalgia #rarediseaseday2019 #ehlersdanlos #pride #rarereality #hypermobile #zebrastrong #dysautonomia

Even my tired’s tired today. Anybody else have plans to move from the bed straight to the couch? ‍♀️ Hoping you amazing warriors find rest and recharge today!

Sometimes I wish I could just hand out cards explaining what being “unchargeable” means. ‍♀️ More sleep does not equal good, deep, restorative sleep for most of those with a chronic illness. Which means a lot of what is supposed to happen during that phase of sleep like crucial cell and tissue repair, immune function boosts and a build up of energy stores for the next day gets missed. So next time someone tells you they have a chronic illness, do us all a favor and hug them (not too tight) or hold their hand and tell them just what a badass warrior they are. Support, even when you don’t know what’s it’s like to live in a failing body, is invaluable to a spoonie. Just be there and stop telling them they’d feel better if they just got more sleep, or ate more kale. ‍♀️ They are doing their very best. Happy Monday Warriors! We are with you and sending you all the extra spoons today!

I really was smiling on the inside.... ‍♀️

This is so true! I keep saying I’m going to write them down, then I forget to do that too! In today’s episode we talk all about brain fog and tips, tricks, and tools we use to help us get through it! If you have any favorites, drop them below and we will be sure to add them in to the episode! Sending all you amazing warriors some extra love and spoons today!