#eds

Instagram photos and videos

#eds#ehlersdanlossyndrome#chronicillness#spoonie#invisibleillness#EDS#chronicpain#pots#dysautonomia#zebrastrong#chronicfatigue#zebrawarrior#fatigue#anxiety#spoonielife#hypermobility#chronicillnesswarrior#dogsofinstagram#multiplesclerosis#pain#hypermobile#fibromyalgia#disability#smaldog#gastroparesis#cutedog

Hashtags #eds for Instagram

Check out our founder, @ciaag_lauren, on Worcester Speaks Out! As she speaks about the misconceptions surrounding the opioid crisis and the terrible treatment that chronically ill individuals are facing. The direct link is in our discription box on our profile, or down below in the comments! Check it out and remember that together we are #CIAAGStrong 🎗️ ⬇️


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Baby wipes aren’t just for babies, but 20-something-year-old ostomates too!!! 😉 It’s been over six months since my surgery, and I’ve been using just as many — if not more! —wipes as I was in the beginning! They come in handy when emptying my bag and cleaning my peristomal skin when changing appliances (I use lotion-free ones, of course). Any other ostomates use just as many baby wipes as I do?! 😅
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#ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #chronicallymotivated #eds #ehlersdanlossyndrome #zebrastrong #asthma #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome


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“Stay strong”
To whoever wrote this on this pebble at Brighton beach, this is so needed right now - not just by me, by so many people and we genuinely need more people to do this kind of thing. It’s little things like this that can make someone’s day 100x better. Thank you 💙





#staystrong #brighton #brightonbeach #ehlersdanlossyndrome
#edsawarenessmonth #eds #ehlersdanlossyndromeawareness #POTS #thisismynormal #stoma #ileostomy #ostomy #ostomyawareness #gastropareisis #digestivesystem #joints #myjointsgooutmorethanido #chronicillness #chronicfatigue #ostomate #futureostomate #iamstrong #wontgiveup #zebra #warrior #stomabag


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EDS Truth #8:
Too often, diagnosis of EDS/HSD takes 10+ years from the onset of symptoms. We are working on improving this through education and awareness.
Follow us for more EDS/HSD Myths and Truths during Ehlers-Danlos Awareness Month!
Learn more about the Ehlers-Danlos syndromes (EDS) and hypermobile spectrum disorders (HSD) at ehlers-danlos.com.

#EhlersDanlos #EDSMyth #EDSFact #Myth #EDSAwarenessMonth #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #EDS #EDSAwareness #hEDS #vEDS #cEDS #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether


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We did a short training session today when at the dollar store grabbing some things. This is my first time working with him on this in public so I think he did good. I was actually getting kind of fatigued and sweaty at this point so felt it was a good time. -
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Check out our pawtners 🐶🐕🐾
@fantastic_fin_fry
@hearingdoghanalei
@cai.the.service.saviour
@sdit_atlas
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#chronicillnesses #chronicillnesswarrior
#servicedogteam #respectthevest #medicalalertdog #posturalorthostatictachycardiasyndrome #POTSieSTRONG #dysautonomia #chiarimalformation #chronicpain #chronicfatigue #traumaticbraininjury #ehlersdanlossyndrome #eds #zebrastrong #ComplexPTSD #mastcellactivationdisorder #connectivetissuedisorder #goldenretrieversofinstagram #goldenretrieverservicedog


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a few days ago i covered my cane in holographic green duct tape 🌿💚 it’s made such a serious improvement on how i feel about my cane and using it. before putting the duct tape on i hadn’t used my cane in probably 2, maybe even 3 weeks - when i used to use it on every outing that required standing and walking more than 15ft... i’d gotten tired of the stares if i’m being honest. most of the time i don’t give a shit who looks at me and how, but sometimes i just don’t want to feel like a display object for people to gawk/sneak glances at. especially out eating or getting groceries. my poor boyfriend always thinks people are looking at him 😂 we’ll be walking and he’ll say something like “why is that guy/lady staring at me so hard oh my god!” and i’m like “babe it’s not you it’s me and my cane.” Lol. not using the cane lead to some (unnecessary and avoidable) flares, and near falls in the grocery store 🤦🏼‍♀️. just because i’m disabled doesn’t mean i’m always smart about it 🤷🏼‍♀️😂.
i felt so much better (mentally and definitely physically ) using my cane yesterday than i ever have before 🙌🏻 and believe it or not, LESS PEOPLE STARED. idk if it was because there were generally less people in walmart yesterday evening or what, but i’m chalking it off as a win 🤙🏻 ah. what can’t duct tape do? Lol.
i think from now on i’m going to seasonly (and spontaneously bc i’m indecisive lol) decorate my cane with duct tape 😌
if you have/use a mobility aid, do you decorate it?✨



#chronicillness #chronicallyill #invisibleillness #invisibleillnesses #ehlersdanlossyndrome #EDS #dysautonomia #dysautonomiasucks #spoonie #SPD #chronicpain #chronicfatigue #fibromyalgia #neuropathy #disability #babewithamobilityaid #cutiewithacane


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The look of love.❤️
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I am so gratefull for my mum, she has to go through so much worrying and trouble with me.. and my condition. But she stays strong and I love her very very much for that. ❤️
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#lovemymum #love #lookoflove #gratitude #blackdog #blackdogsrule #yvan.livingwithEDS #pinscher #mini #smaldog #dogsofinstagram #cute #cutedog #EDS #ehlersdanlossyndrome


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got some rock candy the other day! it's been so long since I had it. it luckily doesn't upset my stomach

also I'm probably gonna rot my teeth out with all the sugar I'm eating, but it's the only thing I can eat ugh

#spoonie #chronicillness #gastroparesis #pots #eds #invisibleillnessu


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ATTENTION!! GRAPHIC CONTENT! ONLY SWIPE IF YOU CAN HANDLE.
Some days this is the reality of my life... I sleep on pain killers with my cone on... one morning my mum found this little piece of my skin on my pillow, I didn't understand this as you can see.
But my wounds don't really bleed and between the last two pictures are only a couple of days and you see, it healed so much in this time.
But you have to admit, I look super cute when I sleep. .
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#blackdog #blackdogsrule #yvan.livingwithEDS #pinscher #mini #smaldog #dogsofinstagram #cute #cutedog #EDS #ehlersdanlossyndrome #sleepy #painkiller #wound #recovery


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The facial expression when you know you have to wear the cone again... .
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#vet #scaredydog #scared #EDS #ehlersdanlossyndrome #blackdog #blackdogsrule #yvan.livingwithEDS #pinscher #mini #smaldog #dogsofinstagram #cute #cutedog


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May is EDS Awareness Month. Just Google it! #eds #ehlersdanlos #ehlersdanlossyndrome #edssucksass #edssucksmonkeyballs


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Reposting myself! For #ehlersdanlossyndromeawarenessmonth #fragilebutunbreakable using @RepostRegramApp - .
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#MyRareDisease was once diagnosed as hysteria but my childhood doctors were wrong. .
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This year, one week before my 43rd birthday, at the genetics clinic in one of my childhood hospitals, I was diagnosed with #hEDS, a #genetic #connectivetissuedisorder. Had I been diagnosed as a teen, my Beighton would have been 9/9 instead of 6/9, but hypermobility changes with age & syringomyelia (a related condition) has caused stiffening as well as scoliosis, changing how my body moves. hEDS is probably why I need #hearingaids (hypermobility in ear joints called hammer, anvil, & stirrup) and it is the source of my pain & joint dislocations+subluxations going back to childhood. It is likely responsible for many of my systemic health issues, including contributing to my dental problems (also epilepsy is hell on teeth).
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With my EDS diagnosis, heart abnormalities were found on my echo & CT, including PFO, ASD, aortic aneurysm, and intra-atrial aneurysm—attributed to #EDS.
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In 2016, I was diagnosed with #syringomyelia - cavities in my spinal cord caused by cerebrospinal fluid pooling there & eroding the cord tissue. It causes neuropathic pain, paresthesia, weakness, fatigue, and potentially (eventually) paralysis. I have lost all protective sensation in my hands so I do not feel burns & cuts. Syringomyelia causes my ataxia as well. I volunteered for the first long term NIH study. .
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In 2014, I was diagnosed with #Chiari I, which means my cerebellum herniates through my foramen magnum, causing high intracranial pressure, intense occipital headaches, facial nerve issues, and a host of problems ... including syringomyelia. This diagnosis helped pave the way for my EDS diagnosis; it’s all connected.
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My epiptologist believes my EDS has indirectly caused my epilepsy (diagnosed 1989) as well, through periventricular heterotopia. .
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hEDS probably isn’t rare so much as underdiagnosed, but even still, so few doctors understand it that it essentially functions as a rare disease. Likewise Chiari. .
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ID in 1st comment - ran out of room!


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My shoulder is out again. Hubby made me put my stabilizer on. If it could go in and stop hurting that'd be great.
#EDS #ehlersdanlossyndrome #zebrawarrior #subluxation #dislocation #chronicillness #chronicpain #invisibleillness #spoonie #spoonielife #unchargeables


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Sometimes I make fancy breakfast 😍 Kodiak whole grain pancakes and various toppings for this lovely Sunday.

#flexibledieting #weightwatchers #healthyeating #spoonielife #chronicovercomer #eds #breakfast #pancakes #kodiakcakes #brunch #homemade


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Dogs are like that, I guess. They know how to fix you without even saying a word
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#eds#ehlerdanlossyndrome#invisibleillness#chronicillness#turjenter#mittnorge#happyactive#utno#goprohero5#gopro#husky#dog#mittfriluftsliv


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So I wanted to do zebra stripes Lipstick for May as it's Ehlers-Danlos Syndrome Awareness Month and decided what better chance then testing it out with LipSense.
I ordered LipSense Snow and LipSense Blackberry.

Is not my first go with doing Lipstick decoration and have to say LipSense makes it way easier than other lipsticks... Unfortunately I didn't realise my make-up brush was a bit too big, so it's not as good as it could have been, but still pretty epic for my first go with LipSense!
I also totally didn't eat dinner and have a can of drink and it still looks this perfect ;) ! This is why I love LipSense and think it's perfect for spoonies as we often only have energy to put make-up on once.
Also this works perfectly for my weeks of thinking, I've finally found the perfect make for this business/page "Mistress Zebracorn's Boutique" and I will add the logo once I finish drawing it soon and also change the name soon too along with a competition to celebrate my finding a name ^^. So I wanted to do zebra stripes for May as it's Ehlers-Danlos Syndrome Awareness Month. So using my LipSense Snow and LipSense Blackberry I had a go at it. Not my best because my make-up brush is a bit big, so I plan to buy a much smaller one for future pretty LipSense works, but still good for my first try ^^... Also I totally haven't eaten dinner and had a can of drink and it still looks this good... Why I just love LipSense so much!
#EDSAwareness #EDS #EDSAwarenessMonth #EDSChallenge #MayForEDS


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Let's have some fun during #EDSAwarenessMonth with our "If...You Might Be a Zebra " slide of the day. Ehlers-Danlos syndromes and hypermobility spectrum disorders are no joke. Visit dysautonomiasupport.org/eds to learn more. If you love Rice Krispies because ‘snap, crackle, pop’ could be your slogan...you might be a Zebra. #zebrastrong #EDSAwareness #HSDAwareness #EDS #HSD


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Nothing tests your heart and determination like caring for someone who is sick while you’re chronically ill.
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My mom has been in the hospital since Thursday, NG and O2 since Friday and since then we have been waiting for the doctors to decide if they are going to do surgery.
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We still don’t have any answers.
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One thing I do know is that
I need to be with my mom as much as the nurses will allow me too. Yesterday was ten hours. My body absolutely hates me but I don’t care. I can’t care. I’m trying to sleep enough to keep physically and mentally function - before everyone gets all crazy I know that is important, too.
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Thankfully my moms boyfriend is a huge help and is taking shifts so I can go home a rest and eat for a few hours. (Moms NPO).
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I don’t want to miss anything (especially with brain fog) so I’m taking notes on everything - meds, vitals, changes etc.
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If you have any tips for long term hospital stays please send them my way.
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My mom is the most important person in the world to me. You never know how hard it is taking care of a sick parent until you are in that position. I would much rather be the patient as sick as that sounds. This is by far the hardest thing I’ve ever done but I know she will make a full recovery. There’s no other option.
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Please send her good energy, positive thoughts, and prayers to whatever god or spirit or entity you believe in for her and for her doctors and that they will make the right decisions. Her name is Vicki. .
Once again this community has shown me nothing but love and support. It means so much to me. Thank you all so much, Ash.
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#surgery #mom #chronic #chronicillness #pain #chronicfatigue #eds #hypermobility #migraine #headache #pots #pcos #ddd #cfs #ic #lymedisease #lupus #crps #me #depression #anxiety #mentalhealth #spoonies #me #thrivingandsurviving #sickerthanyouraverage #strongerthanyouraverage #fragilebutunbreakable
#lifehacksforchronicillness #thechronicillnesslifestyle


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Shorts com pedrarias! #jeanswear #eds #jeansdestroyed #jeanslovers


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Everything is connected. How you think affects how you feel. How you feel impacts how you look. What you do each day, affects how you feel and look, and so on..⠀

Ok, that’s enough of that. Who is brunching? ⠀

#disabilities #chronicillnesswarrior #peoplehopetribe #invisibleillness #chronicpain #disabledandcute #fibro #EDS #CFS #lupuslife #resilient #spoonie #spoonielife #perfectlyimperfect #trendable #selfcare #chronicfatigue #fibromyalgia #ehlersdanlossyndrome #rawarrior #mentalhealth #raredisease #selflovejourney #lovewhoyouare #shineyourlight #dystonia #bepositive #bebeautiful #multiplesclerosis #warrior


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#electricstorm thanks for ruing my weekend 🤦🏻‍♀️🔨🤮🤢.
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Pink skies growl roaring
Torture soaring
Thunder and lightening
Brain pain frightening
Air too warm
Electric storm ⛈️
Light strobe sky
Pressure builds high
Nausea warning
Migraine adorning
Vessels exploding
Head’s imploding .
. ‘Electric Storm’ ~ by Victoria Payne
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https://www.facebook.com/PoemsbyVictoriaPayne/ .
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#storm #thunder #chronicmigraines #airpressure #lightening #poet #poem #poetry #poetsofinstagram #instapoet #eds #chiari #pots #pitypartypoetry #painpoetry #migrainepoetry #migraine


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I'm not super okay at the moment. I can feel myself getting unwell again (physically) and it's causing me to have anxiety. I've been going really strong recently with my physical health, gained weight, been running a lot more often, smiling more but this past week it seems to have slammed me. I feel like I don't want to eat, I have aches and pains all over, I want to spend all day sleeping in bed from fatigue, an old fracture in my right foot is causing me issues again. I'm getting frustrated about the long waiting lists to see specialists, it's been well over a year now since I started hounding my GP for answers and so far, nothing. Just a "It's probably fibromyalgia, EDS, or M.E." It's so hard to manage an illness on probably. It's hard to live life when you know you're going to suffer again and again. I'm just not having a good day, I guess 😩
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#fibro #fibrowarrior #fibromyalgia #me #MyalgicEncephalomyelitis #eds #ehlersdanlossyndrome #chronicillness #chronicfatigue #chronicpain #bipolartypetwo #bipolardisorder #bpd #actuallyborderline


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Et si on commençait à vivre?
Quelques soient les maladies, elles nous enlèvent beaucoup et prennent une grande place dans notre quotidien. J’avais décidé à l’annonce de mon diagnostic de vivre dans l’indifférence, de vivre comme si elle n’existait pas, de ne pas donner d’importance aux douleurs. Cependant, je suis à un stade où je ne peux plus l’ignorer car cela mettrait en danger ma santé mais ce n’est pas ça qui va m’empêcher de vivre. Il y a des choses que j’ai banni de ma vie pour ne pas vivre à travers une maladie, je ne fréquente pas (ou très rarement) des groupes de malades, je ne me compares pas aux autres, je ne me dis pas « est-ce que c’est du au SED? », j’évite de tout ramener à cette maladie, quand j’ai une allergie ou un symptôme banal nouveau je ne vais pas l’identifier comme un symptôme du SED, je ne vais pas chercher à m’handicaper plus que je ne le suis déjà. Je cloisonne SED et vie privée, je suis sed_warrior ici sur instagram, c’est le seul endroit où vit mon SED, à l’extérieur je suis une autre personne, une jeune femme épanouie, je ne parle pas du SED à mes amis (même s’ils connaissent son existence ça reste quelque chose d’intime pour moi), je n’adhère pas à des pages/comptes sur le handicap ou sur le SED avec mon facebook et mon instagram privé. J’arrête d’avoir des regrets et de vivre dans le passé, le SED m’a apporté une force et du courage indescriptibles, en dehors du SED j’ai vécu d’autres choses douloureuses et le SED m’a obligé de me reconcentrer sur moi même, de penser à moi et d’avancer. La peur de l’avenir m’a obligé à m’obstiner dans mes études et à me lever tous les matins.
Ça a été un long cheminement mais aujourd’hui je suis en accord avec moi même, ne jamais baisser les bras, il n’y a peut etre pas des solutions à tous nos problèmes de santé mais il y a des gens, des médecins qui oeuvrent pour nous et un jour on sera soulagé, en attendant le mental fait beaucoup et c’est sur lui qu’il faut se concentrer pour avancer


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New video up on my channel! Link in bio. ☝️I feel like a lot of fellow spoonies can relate to this one. ❤️
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#dysautonomia #POTS #posturalorthostatictachycardiasyndrome #EDS #ehlersdanlossyndrome #chronicillness #invisibleillness #spoonie #health #life #chronicallyhopeful #youtube #youtuber #learn #awareness


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Pierwszy raz miałam okazję poznać na żywo tego oto Pana -> @art.golec!
Świetny tancerz i człowiek ❤️
Pozytywna energia na cały dzień gwarantowana 😁💥🙌🏼 #eds #egurroladancestudio #wroclaw #polishgirl #polishboy #fun #dancer #hapiness #bestoftheday #piona


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I have a really weird pencil grip 😅 I hold it like a preschooler. I’m not even joking. I hold a pencil with all my fingers lol. Anyway, proprioception also plays a role in both fine and gross motor skills. Poor proprioception can lead to using too much force, or not enough force. It can create a lack of spatial awareness, which makes people bump into things or trip and fall. With fine motor skills, weak ligaments combined with poor proprioception makes it harder for some EDSers to do things such as threading needles, buttoning a shirt, or any task that would require delicate hand-eye coordination with your fingers.


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Grilled brocolli, carrot, pepper, courgette and @menshealthuk chicken sausages with boiled eggs on M&S GF sourdough thins for #lunch today ♥️🥦🍞


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| WE ALL HAVE BAD DAYS | ☕️☕️☕️ I’ve been up all night because of my head and neck pain, I kept tossing and turning, and waking up every 20-30 minutes because of pain. These past few days I have been in more pain than ever before, and im getting extremely frustrated with everything. I just kept saying all throughout the night last night , while tears streaming down my face, “Why God? Why me? What did I do to deserve this?” I’ll never know why God choice me to be sick. I don’t know if it’s some sort of punishment or a blessing in disguise. But I am so grateful to have my family to help me get through it, my mom who was up practically the whole night with me, my dad who woke up at 5:30am to get me my fav Starbucks drink & then my momma made me breakfast in bed. I honestly don’t know how I would get through these tough times with out my parents. #EDSWarrior #ChronicPainWarrior #EhlersDanlosSyndrome


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Yesterday we had rare disease family day at the zoo in Rhenen. We saw a lot of children with eds and made 1 special friend, Fenne. She is a great example for us and we love her!
Zebra life 4 us is going to work for the next generation zebra kids. More of what we going to do later on.
Xxx and lots of love
#zebralife4us #zebrastrong #zebrakids #ehlersdanlossyndromes #eds


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Moje gwiazdy ⭐️⭐️⭐️ sceniczne z DHH8 i DANCEHALL1 z @egurroladancestudio_wroclaw pięknie dzisiaj wystąpiły na pikniku z okazji Miesiąca Rodziny na Wyspie Slodowej we Wrocławiu. Jestem meeeega dumna! Kolejny wystep już 9.06 w Sky Tower na Egurrola Challenge ❤️💃🕺😎💪 #eds #dance #hiphop #dancehall #dancekids #performance #wroclove #wysplaslodowa #lovemyjob


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Today we celebrate Mother's Day in Sweden.🏋️️‍♀️🏋️️‍♀️🏋️️‍♀️
#fightingspirit #fitness #eds #forlife #zebrapower #warrioratheart #hardtimes #zebrawarrior #zebrastrong


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Day 27: “what’re your health goals?” Being able to get back to playing handball weekly and being able to run without being in intense pain afterwords.
#edschallenge #ehlerdanlosawarenessmonth #mayforeds #ehlerdanlossyndrome #ehlerdanlos #eds #invisibleillness #invisibleillnessawareness #chronicpainwarrior #chronicallyill #chronicillness


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I’ve had to massively downsize my shoe collection as I can no longer walk in these bad boys. @ironfistclothing is one of my favourite brands so I’ll just have to buy all their flats and oxfords instead now.
#hypermobility #hypermobilitysyndrome #eds #hypermobile #feelinggoodtoday #brainfog #cfs #insomnia #hms #hms #ehlersdanlossyndrome #jointhypermobilitysyndrome #medicalzebra #zebras #hearhoovesthinkzebra #electriczebra #bloggerlife #invisibleillness #invisibleillnessawareness #ironfist #ironfistclothing #veganshoes #veganclothing


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Fotd- breakfast was 3 pieces of toast with jelly, 43g Cheerios with almond milk, and 2 servings of Greek yogurt. Morning snack was a banana, and watermelon. Afternoon snack was cashews. Lunch was a sub, beans, and a bag of apples and grapes. Dinner was a sub, peas, banana, and strawberries. .#anorexiawarrior #anorexiarecovery recovery#recovery#anorexia#anorexiarecovery#ed#food#edrecovery#eds#recoveryfood#recoverywin#recoveryispossible#recoveryday#recoveryjourney#prorecovery#recoveryishard#recoveryaccount#recoverytime#facerecovery#recoveryfood#anorexiarecovery#disorder#help#mealplan#mealplanssuck#eattingdisorderrecovery#eattingdisorders#eattingdisorder#anarexianervosa#ana#anarecovery#anarexianervosarecovery


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My #legs stay in #pain. But i have been teying to move morethan i did. So i got a fitbit for my bday and have been doing better.but as soon as i hit 5k steps my body wants to quit. I end up im more pain there after.but im at the point tjat idk what else to do. Moving causes so much pain.and taking it easy is not good.but this pain is so real. My toes even hurt. #eds #ehlersdanlosesyndrome #orthopedics #hss #myedsstory


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