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Urgh, the vestibular symptoms are playing up.
Maybe it’s the warmer weather?
Or the humidity?
Feel light-headed and ‘swimmy’ which is always unpleasant.
Although I don’t know for sure whether there are also POTS symptoms adding to the mix.
So lots of water and salt.
Always frustrating to have these symptoms- especially when they had been a bit better for a while.
Setbacks are always annoying and it’s difficult not to feel upset by them.
But hopefully a few quiet days (with an energetic three year old niece and a baby - how’s that going to work?!) will help.
So the usual walk and then good food and restful activities.
Which will also be scuppered tomorrow by workmen in the house banging and crashing around while sawing and fitting doors . . .
Hope you are having a good bank holiday if you’re in the UK and a good start to the week elsewhere.
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#fibromyalgia #posturalorthostatictachycardiasyndrome #pots #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #migraine #headache #vertigo #vestibular #vestibularmigraine #balance #dizzy #mcas #mcad #mastcellactivationdisorder #raynauds #interstitialcystitis #ic #chronicmigraine #chronicheadache #chronicpain #chronicfatigue #chronicillness #invisibleillness #flowers #nature #chelseainbloom
Urgh, the vestibular symptoms are playing up. Maybe it’s the warmer weather? Or the humidity? Feel light-headed and ‘swimmy’ which is always unpleasant. Although I don’t know for sure whether there are also POTS symptoms adding to the mix. So lots of water and salt. Always frustrating to have these symptoms- especially when they had been a bit better for a while. Setbacks are always annoying and it’s difficult not to feel upset by them. But hopefully a few quiet days (with an energetic three year old niece and a baby - how’s that going to work?!) will help. So the usual walk and then good food and restful activities. Which will also be scuppered tomorrow by workmen in the house banging and crashing around while sawing and fitting doors . . . Hope you are having a good bank holiday if you’re in the UK and a good start to the week elsewhere. . #fibromyalgia  #posturalorthostatictachycardiasyndrome  #pots  #eds  #ehlersdanlos  #ehlersdanlossyndrome  #dysautonomia  #migraine  #headache  #vertigo  #vestibular  #vestibularmigraine  #balance  #dizzy  #mcas  #mcad  #mastcellactivationdisorder  #raynauds  #interstitialcystitis  #ic  #chronicmigraine  #chronicheadache  #chronicpain  #chronicfatigue  #chronicillness  #invisibleillness  #flowers  #nature  #chelseainbloom 
Also fed up being accused of using Google when I am telling healthcare professionals about how my illnesses impact me, my children and our day-to-day lives. 🙈🙉🙊 #queer #enby #spoonie #cptsd #ptsd #mentalillness #chronicpain #fibromyalgia #eds #ibs #psoriasis #anfem #antifa #relationshipanarachist #vegan #glutenfree #autoimmune #loomknitter #gamer #artist #designer #activist
If I listened to everyone who told me ‘no’ or ‘you can’t do it’ I would be sitting in my room. Literally just sitting, because apparently that’s what my body is capable of. I’ve been told I’m too disabled for sport, too disabled to challenge myself at uni and too disabled.
Well too bad. Don’t judge. Simple as that. If it wasn’t for EDS, I wouldn’t have had some of the most amazing experiences in my life.
Don’t let someone who says you can’t dictate your life. Smile at them, thank them and then wave at them from the top when you have done everything they said you couldn’t.
Disability doesn’t mean weaker, dumber or incapable.
Just means you find a different way to do things 💗💕💗
If I listened to everyone who told me ‘no’ or ‘you can’t do it’ I would be sitting in my room. Literally just sitting, because apparently that’s what my body is capable of. I’ve been told I’m too disabled for sport, too disabled to challenge myself at uni and too disabled. Well too bad. Don’t judge. Simple as that. If it wasn’t for EDS, I wouldn’t have had some of the most amazing experiences in my life. Don’t let someone who says you can’t dictate your life. Smile at them, thank them and then wave at them from the top when you have done everything they said you couldn’t. Disability doesn’t mean weaker, dumber or incapable. Just means you find a different way to do things 💗💕💗
#doctors and #medicalprofessionals need to remember that #ehlersdanlossyndrome exists, and #zebras exist. 
#Connectivetissue issues often present as unrelated incidents. But if a doctor even thinks of #connectivetissueissues we could be diagnosed decades sooner

#edsawareness #zebra #hypermobility #zebrastrong #eds #ehlersdanlos #86mooses
💕Good night, everyone. Dream Sweet. 💋
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Thank you so much to the lovelies at @thespooniesisterhood for the love and support they share so openly. 😘 You are appreciated and cherished. 💖
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#zebrastrong #cannabis #plantmedicine #healthylife #mmj #pothead #since93 #montana #eds #chronicpain #goodnight #parkinsonism #pain #sickness #hope #love #selflove #thegoodlife #openness #imlistening #spoonie #natural #holistic
#soootired atm, headaches, bit of nausea, aching... but got my #disabledsportscamp at the bath and west show!!! Only 1 more sleeeeep!!!!!!!!! #EDS #dysautonomia #wheelchair #crutches #help
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• a w a e r e n e s s •

Maj månad är en månad för att uppmärksamma den kroniska bindvävssjukdomen Ehlers-Danlos syndrom. Den sjukdom jag har & som har försvårat min vardag sedan jag var liten, så länge jag kan minnas!

Vi har zebran som vårat "märke" just för att inget är svart eller vitt. Jag är en zebra!

Swipe för att ta del av blandad fakta om just EDS här. Jag kommer lägga upp fler fakta varje dag som är kvar av maj nu, för att öka folks vetskap om att denna sjukdom finns. ---------------------- May is EDS awaereness month - swipe for some random facts about this syndrome!

I'm a zebra!

#eds #ehlersdanlossyndrom #ehlersdanlossyndrome #fuckeds #sjukskriven #kronisksmärta #kroniskvärk #cronicalpain #ovanligadiagnoser #sällsyntadiagnoser #nouw #nouwbloggare #blogg #onetofollow
. • a w a e r e n e s s • Maj månad är en månad för att uppmärksamma den kroniska bindvävssjukdomen Ehlers-Danlos syndrom. Den sjukdom jag har & som har försvårat min vardag sedan jag var liten, så länge jag kan minnas! Vi har zebran som vårat "märke" just för att inget är svart eller vitt. Jag är en zebra! Swipe för att ta del av blandad fakta om just EDS här. Jag kommer lägga upp fler fakta varje dag som är kvar av maj nu, för att öka folks vetskap om att denna sjukdom finns. ---------------------- May is EDS awaereness month - swipe for some random facts about this syndrome! I'm a zebra! #eds  #ehlersdanlossyndrom  #ehlersdanlossyndrome  #fuckeds  #sjukskriven  #kronisksmärta  #kroniskvärk  #cronicalpain  #ovanligadiagnoser  #sällsyntadiagnoser  #nouw  #nouwbloggare  #blogg  #onetofollow 
Ehlers Danlos Syndrome Awareness Month Day 28, Ive only met one person in real life with EDS,it was a physical therapist i used to have. #EDS #heds #ehlersdanlossyndrome #ehlersdanlos #raredisease #chronicillness #chronicpain #pots #cci #invisibleillnessawarebess
Where will you lost? 
Model: @floppyloppylop 
#morning #night #eds #tweegrams #blackart #lost  #peoplegallery #instaday #instache
Check out my fb group "My bendy life" if you're interested. It won't let me link a group, sighh wth #facebook #instagram ?? #chronicillness #chronicpain #ehlersdanlossyndrome #eds #abuse #anxiety #ptsd #abuse #healing #loveyourself
" Moi z'aime trop quand mon papa il me gratte comme ça... Roh punaise, c'est le pied."
Dixit la Gambas. 😂🐎
" Moi z'aime trop quand mon papa il me gratte comme ça... Roh punaise, c'est le pied." Dixit la Gambas. 😂🐎
Favorite 👿
🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower  #warrioratheart #hardtimes #zebrawarrior #zebrastrong
Fotd- breakfast was 3 pieces of toast with jelly, apple slices, strawberries n cream oatmeal, and 2 servings of Greek yogurt. Morning snack was a banana. Afternoon snack was cashews. Lunch was sweet potato, asparagus, quinoa, lettuce, tomato salad with lite Olive Garden dressing (didn’t finish the salad). Dinner was veggie kale salad, apple, peas, great northern beans, and rotini and veggies.#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
Fotd- breakfast was 3 pieces of toast with jelly, apple slices, strawberries n cream oatmeal, and 2 servings of Greek yogurt. Morning snack was a banana. Afternoon snack was cashews. Lunch was sweet potato, asparagus, quinoa, lettuce, tomato salad with lite Olive Garden dressing (didn’t finish the salad). Dinner was veggie kale salad, apple, peas, great northern beans, and rotini and veggies.#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 
Another of the cutest “bad buddy” 
I have been so tired lately, I am thinking it is connected with the fever. Usually there fevers are only 7-10 days long but this one has been 30 something days now (I lost count). But for that 7-10 days I just sleep and feel exhausted 😩, so hopefully that means that we have reached the end of this. 
A bummer of today was that my mom was sporting a Zebra printed shirt but would not let me take a picture because she said she had raccoon eyes (AKA a glasses tan). LOL so instead of a my mom in a zebra shirt here is a picture of buddy.
Another of the cutest “bad buddy” I have been so tired lately, I am thinking it is connected with the fever. Usually there fevers are only 7-10 days long but this one has been 30 something days now (I lost count). But for that 7-10 days I just sleep and feel exhausted 😩, so hopefully that means that we have reached the end of this. A bummer of today was that my mom was sporting a Zebra printed shirt but would not let me take a picture because she said she had raccoon eyes (AKA a glasses tan). LOL so instead of a my mom in a zebra shirt here is a picture of buddy.
Doctor:
No more wire wrapping until we can get your swelling in your hand down.
Me:
BUT LOOK HOW PRETTY 😭😭😭 :
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#painisrelative #stubborn #eds #zebra #elhersdanlossyndrome #wirewrap #artist #gemstone #iwanttowork #no #happiness #purple #blue #lollieandpark #idowhatiwant #terriblelistener #etsy #smallbusiness #😭 #🤦 #stupid #hand #pretty #mommade #work #blue
I am broken and bruised but I am also strong and powerful. Being in the water is so therapeutic for my aching joints. It makes me feel whole again. I hope you have something that grants you this feeling, too! #chronicpain #chronicfatigue #chronicillness #ehlersdanlossyndrome #eds #fibromyalgia #cfs #cfids #raynauds #spoonie
It was a Disney day!!! Always so much fun but so exhausting. I always use a wheelchair because I can’t walk too far and I can’t stand for too long. A good tip is to always get there right when it opens at 8 so you can get on the rides with usually long lines. So I normally go from 8-12!! #eds#pots#mcas#ehlersdanlossyndrome#posturalorthostatictachycardiasyndrome#chronicillness#spoonie#potsie#zebrastrong#disneyland
Belajar mengemudi menjelang lebaran.pasti Bisa!!
#yourdrivingsolution
Mengajarkan Calon pengemudi dengan sabar, profesional dan menghasilkan  pengemudi tertib dan taat peraturan!!! Dengan kami anda pasti Bisa. #solusimengemudianda#eds#erc#belajar#kursus#drivingschool#sekolahmengemudi#kursusmengemudi#belajarnyetir#tuamudapastibisa#kampus#sma#padang#sumbar#unand#unp#upi#ubh#tamsis#kantor#kantorpadang#padang#sumbar.
Is there anything cutter than kitten paws?! 🐾 
I’m still in a lot of of pain with my neck, so I’m still taking it easy. So on today’s to do list; snuggle my fur babies ✔️, drink lots of tea ✔️& READ! ✔️ I was starting to getting really frustrated with being stuck in bed the past week, not being able to do much. But then I remembered this quote, “it’s ok, if the only thing you did today was breath.” It’s ok to have bad days [or bad few weeks] it’s ok to take a couple hours or couple days off and just relax. In fact , its something you should do for yourself often. As the saying goes, “you can’t pour from an empty cup, take care of yourself first.” Remember, self love isn’t selfish💕 Take time for yourself, I promise it’ll make a world of a difference. ——————————————————————————- So insta babes, I have a CHALLENGE for you!  For the next week I want you to take at least 15 minutes everyday & do something for yourself; wether it’s reading a book or meditation, or just enjoying the sunshine outside with a cool iced tea. Just do something for YOU! & at the end of the week DM me and let me know how it’s helped you, can’t wait to hear from some of y’all . 💋
Is there anything cutter than kitten paws?! 🐾 I’m still in a lot of of pain with my neck, so I’m still taking it easy. So on today’s to do list; snuggle my fur babies ✔️, drink lots of tea ✔️& READ! ✔️ I was starting to getting really frustrated with being stuck in bed the past week, not being able to do much. But then I remembered this quote, “it’s ok, if the only thing you did today was breath.” It’s ok to have bad days [or bad few weeks] it’s ok to take a couple hours or couple days off and just relax. In fact , its something you should do for yourself often. As the saying goes, “you can’t pour from an empty cup, take care of yourself first.” Remember, self love isn’t selfish💕 Take time for yourself, I promise it’ll make a world of a difference. ——————————————————————————- So insta babes, I have a CHALLENGE for you! For the next week I want you to take at least 15 minutes everyday & do something for yourself; wether it’s reading a book or meditation, or just enjoying the sunshine outside with a cool iced tea. Just do something for YOU! & at the end of the week DM me and let me know how it’s helped you, can’t wait to hear from some of y’all . 💋
It’s finally time - I’m headed back to one of my favorite cities (LA!) for two weeks, but instead of TV shows or interviews, I’ll be undergoing treatment at @infusiobeverlyhills. .
A lot of people have asked how I’m feeling going into it, and the answer is: I don’t know. It’s bittersweet. It’s going to be hard and demanding and so worth it. I’m honestly feeling sad the night before to leave for so long because this is the most grounded I’ve felt in a long time. but at the same time, I’m so grateful and feeling at peace for the opportunity to get better. .
I decided to buy a little camera and try to document as much of the experience as possible: the good, the bad, the beautiful. I want to experience everything and remember everything so I can look back one day and hopefully view this of the beginning of the end of being sick for 5+ years. Here’s the healing, the sweet and the sorrowful, and new beginnings. xo
It’s finally time - I’m headed back to one of my favorite cities (LA!) for two weeks, but instead of TV shows or interviews, I’ll be undergoing treatment at @infusiobeverlyhills. . A lot of people have asked how I’m feeling going into it, and the answer is: I don’t know. It’s bittersweet. It’s going to be hard and demanding and so worth it. I’m honestly feeling sad the night before to leave for so long because this is the most grounded I’ve felt in a long time. but at the same time, I’m so grateful and feeling at peace for the opportunity to get better. . I decided to buy a little camera and try to document as much of the experience as possible: the good, the bad, the beautiful. I want to experience everything and remember everything so I can look back one day and hopefully view this of the beginning of the end of being sick for 5+ years. Here’s the healing, the sweet and the sorrowful, and new beginnings. xo
♥️Sometimes the universe helps you dodge a bullet or two.... 🤔 Montana, it seems our romance lives on! 🦌
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#montanalife #mantana #montana #mmj #canna #blogger #notmoving #cannabis #itsallgood #dontfixit #itaintbroke #loveyourself #outdoorlife #chronicpain #eds #nature #goodvibes #raredisease #mt #lewistown #bloommt #montanahempfest 
#compassion #empoweryourself #IAmCannabis #planthealing #holistic #stickingaround #enjoylife
Did a little grooming on the dogs today. Nails done & stripping. Tia had more hair off than Elphie. I'm surprised how much Elph has. I'll have to do more on her when I get feeling back I to my arms. I just love how they loom after being stripped!! Both dogs get much darker (someone asked me once if I had dyed Tia after I had stripped her lol)

#servicedog 
#servicedogintraining 
#germanwirehairedpointer 
#diabeticalertdog 
#diabeticalertdogintraining 
#lymedisease 
#type2diabetes 
#potssyndrome 
#EDS
Did a little grooming on the dogs today. Nails done & stripping. Tia had more hair off than Elphie. I'm surprised how much Elph has. I'll have to do more on her when I get feeling back I to my arms. I just love how they loom after being stripped!! Both dogs get much darker (someone asked me once if I had dyed Tia after I had stripped her lol) #servicedog  #servicedogintraining  #germanwirehairedpointer  #diabeticalertdog  #diabeticalertdogintraining  #lymedisease  #type2diabetes  #potssyndrome  #EDS 
Edis ve Yılmaz Erdoğan’ın kızı Berfin Erdoğan, önceki gün Bebek Lucca’da görüntülendi. Haklarındaki aşk dedikoduları sorulan ikili “sadece arkadaşız” dedi. Berfin Erdoğan ve Edis, mekan çıkışı aynı araçla ayrıldı. #eds #berfinerdogan  #yılmazerdoğan
Edis ve Yılmaz Erdoğan’ın kızı Berfin Erdoğan, önceki gün Bebek Lucca’da görüntülendi. Haklarındaki aşk dedikoduları sorulan ikili “sadece arkadaşız” dedi. Berfin Erdoğan ve Edis, mekan çıkışı aynı araçla ayrıldı. #eds  #berfinerdogan  #yılmazerdoğan 
Yuk patuhi peraturan😎
SIM alumni siswa Eds_Padang
#yourdrivingsolution
Mengajarkan Calon pengemudi dengan sabar, profesional dan menghasilkan  pengemudi tertib dan taat peraturan!!! Dengan kami anda pasti Bisa. #solusimengemudianda#eds#erc#belajar#kursus#drivingschool#sekolahmengemudi#kursusmengemudi#belajarnyetir#tuamudapastibisa#kampus#sma#padang#sumbar#unand#unp#upi#ubh#tamsis#kantor#kantorpadang#padang#sumbar.
Gnar and some friends need your help! What are some of your favorite toys for some less than careful doggos? 😂 some dogs enjoy tearing up toys and hurting our wallets in the process. What are some of your go to toys for heavy chewers? •••
Check out @cypressavenueworks for awesome paracord and sensory friendly gear!
15% off: CAWFRIENDSANDFAMILY
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#medicalalertservicedog #servicedog #spoonie #chronicillness #ptsdservicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #psoriaticarthropathy #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #banetheservicedane #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam
Gnar and some friends need your help! What are some of your favorite toys for some less than careful doggos? 😂 some dogs enjoy tearing up toys and hurting our wallets in the process. What are some of your go to toys for heavy chewers? ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• #medicalalertservicedog  #servicedog  #spoonie  #chronicillness  #ptsdservicedog  #servicedog  #servicedogintraining  #spoonie  #ptsd  #invisibleillness  #chronicillness  #tasktrained  #ptsd  #ehlersdanlossyndrome  #multiplesystematrophy  #posturalorthostatictachycardiasyndrome  #pots  #EDS  #pnes  #mcad  #psoriaticarthropathy  #multiplesystematrophy  #autismservicedog  #neurodivergent  #mobilityservicedog  #chewyinfluencer  #banetheservicedane  #cypressavenueworks  #cawambassadors  #cawsensoryfriendlyteam 
Ehlers-Danlos Syndrome Fact 27 💙 Ehlers-Danlos Syndrome is a recognized rare disorder.
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All EDS subtypes are considered rare disorders at this time, but some are more rare than others. Some subtypes affect  9 known people worldwide (mEDS) while others affect 1 in 250,000 (vEDS). Classical EDS, Hypermobile EDS, and Vascular EDS account for 79% of EDS patients (CCSO, 2015). The combined prevalence of all the Ehlers-Danlos Syndrome subtypes is approximately 1 in 2,500-5,000 people. However, exact prevalence rates are unknown because of how frequently misdiagnosed EDS is.
Ehlers-Danlos Syndrome Fact 27 💙 Ehlers-Danlos Syndrome is a recognized rare disorder. • All EDS subtypes are considered rare disorders at this time, but some are more rare than others. Some subtypes affect 9 known people worldwide (mEDS) while others affect 1 in 250,000 (vEDS). Classical EDS, Hypermobile EDS, and Vascular EDS account for 79% of EDS patients (CCSO, 2015). The combined prevalence of all the Ehlers-Danlos Syndrome subtypes is approximately 1 in 2,500-5,000 people. However, exact prevalence rates are unknown because of how frequently misdiagnosed EDS is.
Essie genuinely blew me away today on our outing. Seriously—I’m so proud of her. So much progress in just two weeks of working together, I’m so happy 💖
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🌵🍩 • 11 months •
🌵☕️ • 6 months •
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#servicedog #servicedogintraining #sdit #servicedogsofinstagram #workingdog #respectthevest #dogtraining #chronicillness #spoonie #eds #zebrastrong #notalldisabilitiesarevisible #poodle #poodlelove #poodlegram #standardpoodle #poodlepuppy #standardpoodlesofinstagram #poodlesofinstagram #spoo #puppylove #puppy #instapuppy #puppiesofinstagram #instagramdogs #dogsofinstagram #ilovemydog #happydog #workinprogress #redhairdontcare
Essie genuinely blew me away today on our outing. Seriously—I’m so proud of her. So much progress in just two weeks of working together, I’m so happy 💖 • • 🌵🍩 • 11 months • 🌵☕️ • 6 months • • • #servicedog  #servicedogintraining  #sdit  #servicedogsofinstagram  #workingdog  #respectthevest  #dogtraining  #chronicillness  #spoonie  #eds  #zebrastrong  #notalldisabilitiesarevisible  #poodle  #poodlelove  #poodlegram  #standardpoodle  #poodlepuppy  #standardpoodlesofinstagram  #poodlesofinstagram  #spoo  #puppylove  #puppy  #instapuppy  #puppiesofinstagram  #instagramdogs  #dogsofinstagram  #ilovemydog  #happydog  #workinprogress  #redhairdontcare 
Day 27: “What are your health goals?” My goals mostly sum up to improve my quality of life. I’d like to find a way to improve my pain, specifically headaches and migraines. I’d like to be able to exercise again, as I really miss exercising properly. I would also like my health to be stable enough that I can do fun things a day, and don’t have to use up my time being upright by cleaning, paying bills, or otherwise “adulting”. I’d like to be well enough to be upright long enough that I can do art without repercussions, or practice singing again without it exhausting me and making my head hurt. You know... do actual fun stuff 😂 Eventually I’d like to get to the point that I could work part time, or even work from home. A lot of puzzle pieces need to fall into place to make that happen, but I think it can be possible. I know I may never be the old “me” again, but I’m trying to readjust my goals and dreams, and find joy in what could be possible with a lot of prayer, great doctors, the right medications, and a lot of determination. #healthgoals #goals #dreambig #eds #edsawareness #edschallenge #edsawarenessmonth #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #chronicpain #chronicillness #chronicmigraine #spoonielife #spoonie #zebrastrong #mcad #mcas #ibs #fibromyalgia
Day 27: “What are your health goals?” My goals mostly sum up to improve my quality of life. I’d like to find a way to improve my pain, specifically headaches and migraines. I’d like to be able to exercise again, as I really miss exercising properly. I would also like my health to be stable enough that I can do fun things a day, and don’t have to use up my time being upright by cleaning, paying bills, or otherwise “adulting”. I’d like to be well enough to be upright long enough that I can do art without repercussions, or practice singing again without it exhausting me and making my head hurt. You know... do actual fun stuff 😂 Eventually I’d like to get to the point that I could work part time, or even work from home. A lot of puzzle pieces need to fall into place to make that happen, but I think it can be possible. I know I may never be the old “me” again, but I’m trying to readjust my goals and dreams, and find joy in what could be possible with a lot of prayer, great doctors, the right medications, and a lot of determination. #healthgoals  #goals  #dreambig  #eds  #edsawareness  #edschallenge  #edsawarenessmonth  #ehlersdanlossyndrome  #posturalorthostatictachycardiasyndrome  #pots  #chronicpain  #chronicillness  #chronicmigraine  #spoonielife  #spoonie  #zebrastrong  #mcad  #mcas  #ibs  #fibromyalgia 
Ehlers Danlos Syndrome! This is a genetic disorder where a persons connective tissue is more elastic than normal. It has helped me excel at gymnastics/ballet/diving but also explained my numerous injuries. The most prominent symptom is joint hyper-mobility but as most of our bodies are made from connective tissue, further complications can be heart defects, gastrointestinal disturbances, eye problems and frequent black outs. Back in 2013 I couldn’t stand without passing out or spewing and literally thought my life was over (dramatic much?😂). Luckily i was put in contact with a Dr who kindly explained that whilst I would never be “cured”, EDS is easily managed. Hyper-hydration and a high sodium diet fixed my blackouts and daily exercise stabilized my joints again. I still experience chronic pain as a result of relaxed joints and ligaments but honestly who doesn’t experience some degree of discomfort as a result of daily living? People who live with EDS often declare themselves “fragile but unbreakable” which is such a lovely reminder that we are stronger than we know. We got this far, didn’t we?? The month of May is EDS awareness month and yup I am so late to the party but hopefully the more we spread awareness the less time it will take to diagnose future generations. Let’s raise our spoons for EDS month! 🥄🦓🔬#ehlersdanlossyndrome #eds #ehlersdanlos #chronicillness #spoonie #fragilebutunbreakable #edsawareness #ehlersdanlosawareness #hypermobility
Ehlers Danlos Syndrome! This is a genetic disorder where a persons connective tissue is more elastic than normal. It has helped me excel at gymnastics/ballet/diving but also explained my numerous injuries. The most prominent symptom is joint hyper-mobility but as most of our bodies are made from connective tissue, further complications can be heart defects, gastrointestinal disturbances, eye problems and frequent black outs. Back in 2013 I couldn’t stand without passing out or spewing and literally thought my life was over (dramatic much?😂). Luckily i was put in contact with a Dr who kindly explained that whilst I would never be “cured”, EDS is easily managed. Hyper-hydration and a high sodium diet fixed my blackouts and daily exercise stabilized my joints again. I still experience chronic pain as a result of relaxed joints and ligaments but honestly who doesn’t experience some degree of discomfort as a result of daily living? People who live with EDS often declare themselves “fragile but unbreakable” which is such a lovely reminder that we are stronger than we know. We got this far, didn’t we?? The month of May is EDS awareness month and yup I am so late to the party but hopefully the more we spread awareness the less time it will take to diagnose future generations. Let’s raise our spoons for EDS month! 🥄🦓🔬#ehlersdanlossyndrome  #eds  #ehlersdanlos  #chronicillness  #spoonie  #fragilebutunbreakable  #edsawareness  #ehlersdanlosawareness  #hypermobility 
Hey everyone! I’m so sorry I haven’t posted in a little while I’ve just been visiting family and super exhausted. I also hurt my knee pretty bad I don’t know what happened but you know 😂 I also dislocated my shoulder again just about 30 minutes ago and had my mom reset it for the first time so that was funny 😂 she’s finally coming around to the idea I actually might have an issue
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#chronicillness #chronicpain #hypermobility #hypermobilitysyndrome #crps #fibromyalgia #fibrowarrior #eds #ehlorsdanlossyndrome  #complexregionalpainsyndrome #fibromyalgia  #hypersensitive #hypersensitivity #spoonie #hypermobile #anxiety #depression #ibs #irritablebowelsyndrome #insomnia #insomniac #restlessnights #tired #exhausted #kneebrace #dislocatedshoulder #tipoftheiceberg #invisibleillness #undiagnosed
Hey everyone! I’m so sorry I haven’t posted in a little while I’ve just been visiting family and super exhausted. I also hurt my knee pretty bad I don’t know what happened but you know 😂 I also dislocated my shoulder again just about 30 minutes ago and had my mom reset it for the first time so that was funny 😂 she’s finally coming around to the idea I actually might have an issue • #chronicillness  #chronicpain  #hypermobility  #hypermobilitysyndrome  #crps  #fibromyalgia  #fibrowarrior  #eds  #ehlorsdanlossyndrome  #complexregionalpainsyndrome  #fibromyalgia  #hypersensitive  #hypersensitivity  #spoonie  #hypermobile  #anxiety  #depression  #ibs  #irritablebowelsyndrome  #insomnia  #insomniac  #restlessnights  #tired  #exhausted  #kneebrace  #dislocatedshoulder  #tipoftheiceberg  #invisibleillness  #undiagnosed 
It took me 45 years for a diagnosis.  My mom was looking for answers and help from the time I was a baby.  I had symptoms of EDS back then, and I also had MCAS symptoms from the time I was born.  Even though I had 3 knee surgeries by the time I was 12 because they kept dislocating and was hospitalised for 8 days with severe hives when I was 7, doctors never figured it out. 
#edsawareness #edsawarenessmonth
#jawsurgery #recovery #ilovemymom #blessed #EDS #MCAS #chronicpainwarrior #chronic #eaglessyndrome #fibromyalgia #IBD #GHSD #hypoglycemia #voiceboxtremor #DJD #degenerativejointdisease #arthritis #BrokenPersonCin #spoonie #nomorespoons #lovemyfurbabies #furbabies #bobblehead #occulttetheredcord
It took me 45 years for a diagnosis. My mom was looking for answers and help from the time I was a baby. I had symptoms of EDS back then, and I also had MCAS symptoms from the time I was born. Even though I had 3 knee surgeries by the time I was 12 because they kept dislocating and was hospitalised for 8 days with severe hives when I was 7, doctors never figured it out. #edsawareness  #edsawarenessmonth  #jawsurgery  #recovery  #ilovemymom  #blessed  #EDS  #MCAS  #chronicpainwarrior  #chronic  #eaglessyndrome  #fibromyalgia  #IBD  #GHSD  #hypoglycemia  #voiceboxtremor  #DJD  #degenerativejointdisease  #arthritis  #BrokenPersonCin  #spoonie  #nomorespoons  #lovemyfurbabies  #furbabies  #bobblehead  #occulttetheredcord 
Ehlers Danlos Awareness Month Day 27: social life- sometimes we’re up, sometimes we’re down. But don’t stop inviting us! We know, it can be frustrating to be friends with someone who cancels 9 times out of 10 last minute. Having EDS means that much of your immediate future well being can be unpredictable. One second you feel great but then you dislocate your shoulder when someone bumps into you. All of the following pictures are me on a good day versus me on a bad day. When we have an event we try really hard to rest for days beforehand to be our best prepared, but sometimes that isn’t enough. Sometimes we just have to push through anyway! Just know that we want to be with you! We want to spend time with our humans, sometimes we just can’t. Please be patient. We feel worse about it than you’ll ever know. #eds #edsproblems #edsawareness #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #ehlersdanlosawarenessmonth2018 #zebrawarrior #fragilebutunbreakable #🦓🦓🦓
Ehlers Danlos Awareness Month Day 27: social life- sometimes we’re up, sometimes we’re down. But don’t stop inviting us! We know, it can be frustrating to be friends with someone who cancels 9 times out of 10 last minute. Having EDS means that much of your immediate future well being can be unpredictable. One second you feel great but then you dislocate your shoulder when someone bumps into you. All of the following pictures are me on a good day versus me on a bad day. When we have an event we try really hard to rest for days beforehand to be our best prepared, but sometimes that isn’t enough. Sometimes we just have to push through anyway! Just know that we want to be with you! We want to spend time with our humans, sometimes we just can’t. Please be patient. We feel worse about it than you’ll ever know. #eds  #edsproblems  #edsawareness  #ehlersdanlos  #ehlersdanlossyndrome  #ehlersdanlosawareness  #ehlersdanlosawarenessmonth2018  #zebrawarrior  #fragilebutunbreakable  #🦓🦓🦓
So I had Botox on Thursday to help my migraines. This was the 3rd lot! They gave me 31 needles all over my face neck and head, but what sucks is I didn’t even have a migraine at the time and now all the nerves in my face are going bonkers so I’ve had a massive migraine flare for the last few days. I’ve barely been able to move from my bed to the couch. It’s not fun but it’s definitely worth it in the end. •
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#chronicpain #chronicfatiguesyndrome #chronicmigraine #fibromyalgia #ehlersdanlossyndrome #eds #iamazebrawarrior #gastroparesis #restlesslegsyndrome #irritablebowelsyndrome #botox #jawsurgery #jawreconstruction #edstype3 #centralsleepapnea #postralorthostatictachycardiasyndrome #pots #cannabiscures #cannabiscommunity #cannabisactivist
So I had Botox on Thursday to help my migraines. This was the 3rd lot! They gave me 31 needles all over my face neck and head, but what sucks is I didn’t even have a migraine at the time and now all the nerves in my face are going bonkers so I’ve had a massive migraine flare for the last few days. I’ve barely been able to move from my bed to the couch. It’s not fun but it’s definitely worth it in the end. • • • • • • • • • #chronicpain  #chronicfatiguesyndrome  #chronicmigraine  #fibromyalgia  #ehlersdanlossyndrome  #eds  #iamazebrawarrior  #gastroparesis  #restlesslegsyndrome  #irritablebowelsyndrome  #botox  #jawsurgery  #jawreconstruction  #edstype3  #centralsleepapnea  #postralorthostatictachycardiasyndrome  #pots  #cannabiscures  #cannabiscommunity  #cannabisactivist 
Two chronic illness essentials: ice packs and proper support pillows.
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I’ve been majorly slacking but don’t forget about the EDS Awareness Month Giveaway! 🦓.
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To enter like this post and head over to @lifehacksforchronicillness for more details. Two winners will be selected! 👯‍♀️.
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#edsawarenessmonth #giveaway #lifehacksforchronicillness #thechronicillnesslifestyle #win #chance #supportpillow #chronic #chronicillness #eds #heds #ceds #veds #hypermobility #dysautonomia #pain #migraine #headache #pots #pcos #ddd #cfs #ic #fibro #me #depression #anxiety #mentalhealth #spoonies #me #fragilebutunbreakable
Two chronic illness essentials: ice packs and proper support pillows. . I’ve been majorly slacking but don’t forget about the EDS Awareness Month Giveaway! 🦓. . To enter like this post and head over to @lifehacksforchronicillness for more details. Two winners will be selected! 👯‍♀️. . . . #edsawarenessmonth  #giveaway  #lifehacksforchronicillness  #thechronicillnesslifestyle  #win  #chance  #supportpillow  #chronic  #chronicillness  #eds  #heds  #ceds  #veds  #hypermobility  #dysautonomia  #pain  #migraine  #headache  #pots  #pcos  #ddd  #cfs  #ic  #fibro  #me  #depression  #anxiety  #mentalhealth  #spoonies  #me  #fragilebutunbreakable 
Day 27: #EDSAwarenessMonth2018
#Repost @ehlers.danlos ・・・
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
Day 27: #EDSAwarenessMonth2018  #Repost  @ehlers.danlos ・・・ 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 
[Caption reads:] I bought some new makeup the other day, and I finally tried it out today!
I bought an eyeshadow palette with ?? shades, and the first eyebrow pencil (or product) that actually matches my hair.
I had so much fun, and I absolutely loved how it looked! It also helped me shape my eyebrows for the first time in months lol
I haven't worn makeup in a long time, and I think I'm going to start wearing it more often because I really like wearing simple makeup.
My skin can't really handle foundation or anything, so all I can wear is eyeshadow, eyebrow products, and very specific lip balms/glosses.
I hope you enjoy EDS awareness month and you have a great day full of spoons!! 🥄🥄 [Caption ends]
{Image Description: A photo of a green zebra Stripe background with white text. The text reads; EDS random fact #7:
We get "fake-heart attacks". It's a condition called costochondritis. It's an inflammation of the rib cartilage. Feels like an elephant is stepping on your chest.
It's super scary the first time. Then not so much.}
[Caption reads:] I bought some new makeup the other day, and I finally tried it out today! I bought an eyeshadow palette with ?? shades, and the first eyebrow pencil (or product) that actually matches my hair. I had so much fun, and I absolutely loved how it looked! It also helped me shape my eyebrows for the first time in months lol I haven't worn makeup in a long time, and I think I'm going to start wearing it more often because I really like wearing simple makeup. My skin can't really handle foundation or anything, so all I can wear is eyeshadow, eyebrow products, and very specific lip balms/glosses. I hope you enjoy EDS awareness month and you have a great day full of spoons!! 🥄🥄 [Caption ends] {Image Description: A photo of a green zebra Stripe background with white text. The text reads; EDS random fact #7 : We get "fake-heart attacks". It's a condition called costochondritis. It's an inflammation of the rib cartilage. Feels like an elephant is stepping on your chest. It's super scary the first time. Then not so much.}
Remember to relax when heat goes up. Love you all tooths ❤. You are one of a kind. The best kind. 😘👌🏻
#ehlersdanlos #eds #ehlersdanlossyndrome #edsawarenessmonth2018 #awareness #disease #rare #stripes #relax #ehlersdanlostype3 #eds3 #heds #zebras #zebrastrong #chronic #chronicdisease #chronicillness #visibleillness #behindstripes #ehlersdanlossyndromeawareness #cat #blackandwhite #sofa
Gluten free lemon sponge cake with homemade whipped cream and berries. Accidentally patriotic. Ha!
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#glutenfree #lemon #spongecake #whippedcream #berries #berriesandcream #memorialdayweekend #letthemeatcake #ehlersdanlos #eds #ehlersdanlossyndrome #spoonie #chronicillness #chronicpain
Stitches out on Friday. Being able to be in a slightly lighter room for part of the day & to hold Willow for a bit. Each new step is promising 💙

#lovethatsmile #chiarimalformation #posteriorfossadecompression #arnoldchiarimalformation #migraine #pcos #pots #ra #eds
Today's #EDSAwareness moment brought to you by unpronounceable Greek words & an old low quality photo. Yes, I know my legs are long. No, I'm not tall. 
The Ehlers-Danlos Syndromes (EDS): Dolichostenomelia is the term for the unusually long limbs sometimes seen in heritable connective tissue disorders. #FragileButUnbreakable
Today's #EDSAwareness  moment brought to you by unpronounceable Greek words & an old low quality photo. Yes, I know my legs are long. No, I'm not tall. The Ehlers-Danlos Syndromes (EDS): Dolichostenomelia is the term for the unusually long limbs sometimes seen in heritable connective tissue disorders. #FragileButUnbreakable 
I've always struggled with writing utensils. How have I not known about this pen?!? #eds #edslife #penagain
I've always struggled with writing utensils. How have I not known about this pen?!? #eds  #edslife  #penagain 
I've rescued a kitten but I can't seem to find him a home. he's starting to grow on me and I even named him. but I'm unable to constantly give him attention do to my health. please wish me luck that I find this little guy a home!

#rheumatism #ptsd #fullspectrum #migraines #anxiety #positivity #selfcare #awareness #inflammation #fatigue #pain #arthritis #disease #autoimmunedisease #lupus #ehlersdanlossyndrome #eds #spoonie #fibromyalgia #invisbleillness
Open de koektrommel en ontdek al het lekkers in de muziekwereld.

#minime #drums #littledrummer #cookiejar #drumsticks  #2yearsold #jonggeleerdisoudgedaan #love #music #eds
Before May comes to an end, I have to give a shout out to #ehlersdanlosawareness month. N and C both have Ehlers Danlos-Hypermobility, which people might think they are good for party tricks, but actually it means their joints painfully pop out at random times for no reason. While they are on the less severe spectrum of EDS, it has still contributed to their pain and fatigue. EDS is still not well understood, and Hypermobility was only added to the spectrum last year. #eds #hypermobility #autoimmunedisease #chronicillness #chronicpain
Before May comes to an end, I have to give a shout out to #ehlersdanlosawareness  month. N and C both have Ehlers Danlos-Hypermobility, which people might think they are good for party tricks, but actually it means their joints painfully pop out at random times for no reason. While they are on the less severe spectrum of EDS, it has still contributed to their pain and fatigue. EDS is still not well understood, and Hypermobility was only added to the spectrum last year. #eds  #hypermobility  #autoimmunedisease  #chronicillness  #chronicpain 
"I'm about to be in a bad flare up"
"How can you tell?" Nicole asked
"The t-rex legs are back"
The last time I had what we like to call T-rex legs was over a year ago. T-rex legs happen when I enter a particularly brutal flare. My legs refuse to go straight and it's usually accompanied by a dragging foot every now and then, the result is me walking around slightly tip toed with bent legs looking like, you guessed it, a t-rex. I had a feeling a flare was coming. I've woken up 3 days in a row with nearly zero movement in my legs, and have to wait until I have at least some sort of mobility before I can begin my day. Last night as I was playing video games I lost feeling in my foot for a solid couple hours. These types of flares are my least favorite because they're the most immobilizing. The pain is bad, my joints aren't aligned like they should be and so it causes a landslide of accompanying issues. I've had plenty flares over the past year, ranging from a couple days to maybe a few weeks, but the last time I had a t-rex flare it lasted nearly 2 months. I desperately hope this isn't that long and will not be mad at all if I wake up to find it already disappearing, but in the meantime I shall embrace my new dinosaur lifestyle.
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Image description: An aerial view of Abbys legs on her bed. Both knees have black supportive knee braces on them. #eds #ehlersdanlos #ehlersdanlossyndrome #chronicillness #chronicallyill #spoonie #rsd #crps #POTS #POTsie #tachycardia #pain #disabled #disability #edstype3 #dysautonomia #edsawareness #chronicpain #100InvisibleDays
"I'm about to be in a bad flare up" "How can you tell?" Nicole asked "The t-rex legs are back" The last time I had what we like to call T-rex legs was over a year ago. T-rex legs happen when I enter a particularly brutal flare. My legs refuse to go straight and it's usually accompanied by a dragging foot every now and then, the result is me walking around slightly tip toed with bent legs looking like, you guessed it, a t-rex. I had a feeling a flare was coming. I've woken up 3 days in a row with nearly zero movement in my legs, and have to wait until I have at least some sort of mobility before I can begin my day. Last night as I was playing video games I lost feeling in my foot for a solid couple hours. These types of flares are my least favorite because they're the most immobilizing. The pain is bad, my joints aren't aligned like they should be and so it causes a landslide of accompanying issues. I've had plenty flares over the past year, ranging from a couple days to maybe a few weeks, but the last time I had a t-rex flare it lasted nearly 2 months. I desperately hope this isn't that long and will not be mad at all if I wake up to find it already disappearing, but in the meantime I shall embrace my new dinosaur lifestyle. . Image description: An aerial view of Abbys legs on her bed. Both knees have black supportive knee braces on them. #eds  #ehlersdanlos  #ehlersdanlossyndrome  #chronicillness  #chronicallyill  #spoonie  #rsd  #crps  #POTS  #POTsie  #tachycardia  #pain  #disabled  #disability  #edstype3  #dysautonomia  #edsawareness  #chronicpain  #100InvisibleDays 
May is Ehlers Danlos Syndrome Awareness Month
🍂 this is my personal interpretation of how EDS feels🍂
EDS is a genetic connective tissue disorder, which is systemic in nature, as it causes a mutation in collagen throughout the entire body. There is no known cure, and there are many related conditions... some of the most common being: Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome, Tethered Spinal Cord, Chiari Malformation, Gastroparesis, and IBS. ————————————————————————————
Honored to have @ehlers.danlos , @r2spiced , @basicelements2fireclay ,  @sj_versus_gp ,and @pots.syndrome.princess chose my art to help bring awareness, and understanding to the condition.
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Edited: May 28, 2018
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#raredisease #chronicillness #invisableillness #ehlersdanlossyndrome #tetheredcord #eds #heds  #idleidealsartwork #hyperpots #dysautonomia #scoliosis #geneticdisorder #ehlersdanlosawarenessmonth #zebra #chiarimalformation #gastroparesis #ibs #connectivetissuedisorder #rare #mastcellactivationdisorder #pots #illustrator #artist
May is Ehlers Danlos Syndrome Awareness Month 🍂 this is my personal interpretation of how EDS feels🍂 EDS is a genetic connective tissue disorder, which is systemic in nature, as it causes a mutation in collagen throughout the entire body. There is no known cure, and there are many related conditions... some of the most common being: Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome, Tethered Spinal Cord, Chiari Malformation, Gastroparesis, and IBS. ———————————————————————————— Honored to have @ehlers.danlos , @r2spiced , @basicelements2fireclay , @sj_versus_gp ,and @pots.syndrome.princess chose my art to help bring awareness, and understanding to the condition. ———————————————————————————— Edited: May 28, 2018 ———————————————————————————— #raredisease  #chronicillness  #invisableillness  #ehlersdanlossyndrome  #tetheredcord  #eds  #heds  #idleidealsartwork  #hyperpots  #dysautonomia  #scoliosis  #geneticdisorder  #ehlersdanlosawarenessmonth  #zebra  #chiarimalformation  #gastroparesis  #ibs  #connectivetissuedisorder  #rare  #mastcellactivationdisorder  #pots  #illustrator  #artist